I'm just me...

Ridiculous SSI ruling...

2026-05-16T19:14:55.250-04:00

As part of my SSI appeal, I had a hearing with a judge in June. He was in Peoria, IL, so it was done via CCTV. I got the impression that he was very intelligent and figured he'd either see how obvious it was that I couldn't work, or that he'd use his smarts to screw me over and deny me. Of course, he did the latter. Below is the relevant part of his ruling, which I received a couple weeks after the hearing. At least he didn't make me wait forever. I scanned the pages and got the text via OCR. I'm pretty sure I've corrected any errors, and the formatting, aside from some spacing, is the same from the document I received. I highlight particularly ridiculous findings in RED, though. I added my comments in BLUE. This is some crazy shit. He can't have really read my medical info and made these conclusions.

FINDINGS OF FACT AND CONCLUSIONS OF LAW

After careful consideration of the entire record, the undersigned makes the following findings:

1. The claimant has not engaged in substantial gainful activity since June 21, 2007, the application date (20 CFR 416.971 et seq.).

2. The claimant has the following sever impairments: schwannoma tumor in the jugular foramen, visual disorder, dysthymia, and depression (20 CFR 416.920(e)).

The above impairments cause significant limitations in the claimant’s ability to perform basic work activities.

3. The claimant does not have an impairment or combination of impairments that meets or medically equals one of the listed impairments in 20 CFR Part 404, Subpart P, Appendix 1 (20 CFR 416.920(d), 416.925 and 416.926).

The undersigned considered listing 2.02 governing the loss of visual acuity. In order to meet Listing 2.02, the claimant must have remaining vision in the better eye after best correction of 20/200 or less. There is no evidence in the medical record to suggest that the claimant’s visual acuity in the better eye has deteriorated to satisfy the requirements of Listing 2.02.

The undersigned also considered listing 2.04 governing the loss of visual efficiency. In order to meet Listing 2.04, the claimant must have a visual efficiency of 20 percent or less as determined by kinetic perimetry. The claimant argues that he meets 2.04 and that his doctor has determined that he met Listing 2.04. However, upon review of the medical record of evidence, the claimant’s doctor reported that the claimant’s visual efficiency was 72 % in his right eye and 57% in his left eye which is far from meeting the criteria in Listing 2.04 (Exhibit 15F/1).

*I don't understand any of this or what my doctor wrote. But, apparently, having major blind spots in my central vision isn't a big enough deal. I guess as long as I might see part of something in front of me, that's good enough. I wonder if he'd want me to drive next to him since my vision is, by his standards, within the BMV requirements.

The claimant’s mental impairments, considered singly and in combination, do not meet or medically equal the criteria of listing 12.04. In making this finding, the undersigned has considered whether the "paragraph B" criteria are satisfied. To satisfy the "paragraph B" criteria, the mental impairments must result in at least two of the following: marked restriction of activities of daily living; marked difficulties in maintaining social functioning; marked difficulties in maintaining concentration, persistence, or pace; or repeated episodes of decompensation, each of extended duration. A marked limitation means more than moderate but less than extreme. Repeated episodes of decompensation, each of extended duration, means three episodes within l year, or an average of once every 4 months, each lasting for at least 2 weeks.

In evaluating the claimant’s psychological impairments, the undersigned utilized the technique set forth at 20 CFR 404.1520a and 416.920a. The claimant’s depression causes no more than mild restrictions in activities of daily living, mild difficulties in the ability to maintain social functioning, or moderate deficiencies of concentration, persistence or pace. The claimant is able to maintain personal hygiene and grooming, he lives with his parents, does the laundry, cooks, watches television, pursues social networking on the computer, goes out with friends to watch sporting events at bars, and regularly attends basketball games. The claimant reads, although he tires easily while reading. Based on this, the mental condition fails to satisfy the A and B criteria. Moreover, there is no evidence that even a minimal increase in mental demands or change in the environment would be predicted to cause the claimant to decompensate. Additionally, there is no history of an inability to function outside a highly supportive living arrangement. Finally, there is no evidence that he is completely unable to function outside the area of his home environment. Consequently, the A and C criteria are not at listing level severity.

*I don't know about specific legal definitions or guidelines, but it seems to me that because I'm not a total slob and can shower somewhat regularly (though often not when I want to), that I live with my parents (as opposed to what?), that I do laundry (I have enough clothes to last me awhile, but I still can't always do it when I want to--for instance, I'd prefer to wash my bedding once a week, but that doesn't ever happen), that I feed myself (rarely what I want--I often settle for something simple like a sandwich instead of cooking something more elaborate), that I watch TV (really?!?!), that I'm do social networking online (reading what you're up to and posting a little about my life makes me less sick?), that I go somewhere else to watch TV (well, if watching TV at home is too much...), and going to Fever games in the summer (even if I'm just sitting there, which happens a lot, despite my inclinations to cheer), and because I read, apparently at all (wow), I'm not disabled. Basically, because I function AT ALL, I'm not depressed enough. To hell with feeling hopeless and suicidal (in the past), wondering what the point of doing anything is, and, when I have the tears, crying to myself so sick of the nothingness that my life has become. Fuck it, I can watch TV, I must be alright.

4. After careful consideration of the entire record, the undersigned finds that the claimant has the residual functional capacity to perform light work as defined in 20 CFR 416.967(b) except the claimant is limited to occasional postural activities with no climbing of ladders, ropes, or scaffolds. He must avoid all hazards and can engage in activity only requiring occasional visual functioning (i.e. occasional near and far acuity, field of vision, peripheral acuity, depth perception, and nighttime vision). The claimant is also limited to perform simple and repetitive tasks.

*Standing up is a hazard. "Occasional visual functioning???" So I can do stuff that I only need to see part of the time? What am I suppose to do when I'm unable to see?

In making this finding, the undersigned has considered all symptoms and the extent to which these symptoms can reasonably be accepted as consistent with the objective medical evidence and other evidence, based on the requirements of 20 CFR 416.929 and SSRS 96-4p and 96-7p. The undersigned has also considered opinion evidence in accordance with the requirements of 20 CFR 416.927 and SSRS 96-2p, 96-Sp, 96-6p and 06-3p.

In considering the claimant’s symptoms, the undersigned must follow a two-step process in which it must first be determined whether there is an underlying medically determinable physical or mental impairment--i.e., an impairment that can be shown by medically acceptable clinical and laboratory diagnostic techniques--that could reasonably be expected to produce the claimant's pain or other symptoms. Second, once an underlying physical or mental impairment that could reasonably be expected to produce the claimant's pain or other symptoms has been shown and because a claimant’s symptoms can sometimes suggest a greater level of severity of impairment than can be shown by the objective medical evidence alone, the undersigned must consider in addition to the objective medical evidence when assessing the credibility of the claimant's statements:

1. The claimant's daily activities;
*Next to nothing--little of significance
2. The location, duration, frequency, and intensity of the claimant's pain or other symptoms;
*CONSTANT WOOZINESS/BLINDNESS
3. Factors that precipitate and aggravate the symptoms;
*Being active, looking up/down, bending over, stress
4. The type, dosage, effectiveness, and side effects of any medication the claimant takes or has taken to alleviate pain or other symptoms;
*Nothing really helps the wooziness
5. Treatment, other than medication, the claimant receives or has received for relief of pain or other symptoms;
6. Any measures other than treatment the claimant uses or has used to relieve pain or other symptoms (e.g., lying flat on his or her back, standing for 15 to 20 minutes every hour, or sleeping on a board); and
*Ceasing activity, lying down, NOT BEING ACTIVE
7. Any other factors concerning the claimant's functional limitations and restrictions due to pain or other symptoms (SSR 96-7p).

For this purpose, whenever statements about the intensity, persistence, or functionally limiting effects of pain or other symptoms are not substantiated by objective medical evidence, the undersigned must make a finding on the credibility of the statements based on a. consideration of the entire case record.

This 31 year old claimant alleged that he has macular serpiginous choroiditis, depression, asthma, lightheadedness, and dizziness. He claims that his eyes are sensitive to light and that he is depressed due to his poor health. He claims that he is unable to concentrate and that he rarely does anything physical because he is always disoriented.

After careful consideration of the evidence, the undersigned finds that the claimant’s medically determinable impairments could reasonably be expected to cause the alleged symptoms; however, the claimant’s statements concerning the intensity, persistence and limiting effects of these symptoms are not credible to the extent. They are inconsistent with the above residual functional capacity assessment.

*So I'm only visually impaired part of the time? CONSTANT wooziness isn't that bad? What, exactly, isn't credible about my 'claims?'

The claimant has a long history of having serpiginous choroiditis, an inflammatory condition of the eye. His physician noted in a letter in October of 1998 that the claimant had a moderate visual impairment due to this condition and that he had photophobia and decreased vision in certain light conditions (Exhibit 15F/62). In May of 2009, the claimant had his vision evaluated and his doctor reported that the claimant’s visual acuity was 20/40 in the right eye and 20/50 in the left eye, uncorrected, with a corrected visual acuity of 20/25 and 20/40 respectively (Exhibit 15F/70). Although the claimant’s doctor in September of 2009 noted that the claimant met Listing 2.04, the doctor reported that the claimant’s visual efficiency was as 72% in his right eye and 57% in his left eye which was far from meeting the criteria in Listing 2.04 (Exhibit 15F/1).

*Classifying it as "an inflammatory condition of the eye" is underselling it a bit. I have scar tissue on my retinas, which causes blind spots. That means that I CANNOT SEE where those spots are. I guess compared to being completely blind, I have "moderate visual impairment," but I have TOTAL VISUAL IMPAIRMENT where the scarring is, and it is significant. And to get the 20/40 and 20/50 acuities, I have to move my eyes/head around to try to catch things peripherally. I can't just look at something and see it since my central vision is so compromised by the scarring. And lighting is a HUGE factor with my sight. If it's too bright, my functional vision, beyond being able to get around, is nil. Why does everything get so understated?

The claimant also had a long history of dizziness and lightheadedness. In January of 2009, the claimant underwent a biopsy of his jugular foremen which demonstrated that the claimant had a schwannoma tumor (Exhibit 14F/28). He underwent surgery to remove the tumor; however, during the surgery, the claimant’s blood pressure and pulse dropped at a dramatic rate and the surgeon was unable to remove the schwannoma tumor (Exhibit 14F/1). During a follow-up examination, his physician noted that the majority of the tumor, approximately 75-90%, still remained (Exhibit 14F/3). In August of 2009, the claimant’s physician noted that the claimant continued to have occasional dizziness (Exhibit 14F/1). The physician also noted that the claimant’s strength was 5 out of 5 and that his reflexes were symmetric (Exhibit 14F/1).

*So 822 characters sums up my tumor? Being forced to leave 75-90% of a huge ass lesion in my head is not significant? The "occasional dizziness" meant occasional INCREASED dizziness that's on top of the wooziness I CONSTANTLY feel. What the fuck does my strength and reflexes have to do with being woozy? I guess I'm strong enough to survive a fall and my leg will kick out if I land on my knee just right?

The claimant was also diagnosed with Dysthymic Disorder in September of 2005 (Exhibit SF), and depression in July of 2007 (Exhibit 11F). His psychologist noted that the claimant felt that his depression would remain as long as he remained physically impaired and dependent on others (Exhibit 11F). In August of 2007, the claimant reported that his concentration was “o.k.” and that he was often bored (Exhibit 11F). In January of 2008, the claimant’s case manager at the community mental health center noted that the claimant was only mildly depressed; however, he still had feelings of hopelessness and low energy (Exhibit 11F). The claimant underwent a consultative examination in September of 2007. At that time, the state agency's consultant noted that the claimant’s muscle tone and strength was 5 out of 5 in all extremities with no muscle wasting (Exhibit 5F/5). The consultant also noted that the claimant’s gait was normal and that his station was normal (Exhibit 5F/5 ). The claimant was also able to walk on his heels and toes and squat and rise from a squatted position without difficulty (Exhibit 5F/ 5).

*Again, we have incomplete and understated information. Too, what does my strength or gait or ability to walk on my toes/heels, etc. have to do with being depressed? Or wooziness? Or blindness?

Although the claimant has described daily activities which are fairly limited, two factors weigh against considering these allegations to be strong evidence in favor of finding the claimant disabled. First, allegedly limited daily activities cannot be objectively verified with any reasonable degree of certainty. Secondly, even if the claimant’s daily activities are truly as limited as alleged, it is difficult to attribute that degree of limitation to the claimant’s medical condition, as opposed to other reasons, in view of the relatively weak medical evidence and other factors discussed in this decision. The undersigned noted that there are facts and inconsistencies in the record which detract from the credibility of the claimant’s allegations. In the claimant’s disability report, he stated that he was unable to do much and that he considered himself lucky if he could stand up. However, the claimant testified that he took care of his personal hygiene, did the laundry, cleaned his room, watched television, pursued social networking on his computer, attended sporting events, and went out socially with fiends to watch sporting events. Further, although the claimant claimed limited activities of daily living, his mother reported in a 3rd party report that he had no problem taking care of his hygiene and that he watched movies and worked on his computer (Exhibit 9E). She also reported that the claimant needed to be more active (Exhibit 9E). Although the inconsistent information provided by the claimant may not be the result of a conscious intention to mislead, nevertheless the inconsistencies suggest that the information provided by the claimant generally may not be entirely reliable.

*If my "allegedly limited daily activities cannot be objectively verified with any reasonable degree of certainty," then what am I supposed to do? My situation is my situation. I don't choose my symptoms or limitations. Weak medical evidence? A golf ball sized tumor in my head that they were unable to remove much of because I almost died when they were working on it is weak? Scars on my retinas is weak? Not being able to see is week? And all of those activities that I apparently do...it's really not that much. Showering makes me able-bodied? Watching TV? REALLY? Getting out of the house once in awhile, if just for my own sanity (literally) is that much? And the stuff from my mom. I only asked her to fill that out because no one else would. I should have left it blank. She didn't believe I was sick then (they hadn't found the tumor yet). But because my mom said my hygiene was fine (maybe I should stink more) and because I can watch movies (SERIOUSLY??) and mess around on my computer some, I'm OK? What is inconsistent? Yes, I do stuff sometimes when I feel good enough to do it. Most of the time, though, I just sit around and try not to fall over. Sometimes I'm successful.

In accordance with Social Security Ruling 96-6p, the undersigned considered the administrative findings of fact made by the state agency medical physicians and other consultants and weighed these opinions as statements from non-examining expert sources. The residual functional capacity conclusions reached by the physicians employed by the State Disability Determination Services also supported a finding of "not disabled." Although those physicians were non-examining, and therefore their opinions do not as a general matter deserve as much weight as those of examining or treating physicians, those opinions do deserve some weight, particularly in a case like this in which there exist a number of other reasons to reach similar conclusions.

*It doesn't seem he took anything that my doctors said about me being as bad off as I am into any consideration. And based on how the hearing went, it didn't seem like he talked to any doctors. And "in a case like this in which there exist a number of other reasons to reach similar conclusions" is to mean what, exactly? Both my eye condition AND the tumor are extremely rare. My situation is not at all common.

In light of the claimant’s alleged impairments and giving the claimant every benefit of the doubt regarding his allegations of dizziness and lightheadedness, as well as his visual disorder, the undersigned finds, therefore, the claimant is limited to light work. Because of his alleged symptoms, the claimant is limited to perform work which only requires occasional postural activities with no climbing of ladders, ropes, or scaffolds. He must avoid all hazards and can engage in activity only requiring occasional visual functioning (i.e. occasional near and far acuity, field of vision, peripheral acuity, depth perception, and nighttime vision). Because of the claimant’s depression and dysthymia, he is limited the performance of only simple and repetitive tasks.

*"Every benefit of the doubt????" I don't need any benefit of the doubt, I just need someone with some common sense to look at my case. And, again, what can I do that only requires me to be able to see some of the time, that's simple and repetitive? This makes no sense!

In summary, based on a review of the medical evidence of record, as sell as the claimant’s testimony at the hearing and the record as a whole, the undersigned finds the evidence contained in the record does not support the claimant's allegations of totally incapacitating symptoms. He has retained the capacity to perform light work, with minor postural, environmental and non-exertional limitations, throughout the period under consideration. The claimant has not demonstrated that the medical evidence supports greater limitation than in the RFC above, and the undersigned gives the claimant all benefit of reasonable doubt.

5. The claimant is unable to perform any past relevant work (20 CFR 416.965).

The claimant has past relevant work as a door to door sales representative, cashier II, and cashier checker. The vocational expert testified that the work requirements of these jobs exceeded the residual functional capacity provided for this claimant. Accordingly, the claimant is unable to perform past relevant work.

6. The claimant was horn on November 21, 1978 and was 28 years old, which is defined as a younger individual age 18-49, on the date the application was filed (20 CFR 416.963).

7. The claimant has at least a high school education and is able to communicate in English (20 CFR 416.964).

8. Transferability of job skills is not material to the determination of disability because using the Medical-Vocational Rules as a framework supports a finding that the claimant is "not disabled," whether or not the claimant has transferable job skills (See SSR 82-41 and 20 CFR Part 404, Subpart P, Appendix 2).

9. Considering the claimant's age, education, work experience, and residual functional capacity, there are jobs that exist in significant numbers in the national economy that the claimant can perform (20 CFR 416.969 and 416.969(a)).

In determining whether a successful adjustment to other work can be made, the undersigned must consider the claimant's residual functional capacity, age, education, and work experience in conjunction with the Medical-Vocational Guidelines, 20 CFR Part 404, Subpart P, Appendix 2. If the claimant can perform all or substantially all of the exertional demands at a given level of exertion, the medical-vocational rules direct a conclusion of either "disabled" or "not disabled" depending upon the claimant's specific vocational profile (S SR 83-l 1). When the claimant cannot perform substantially all of the exertional demands of work at a given level of exertion and/or has nonexertional limitations, the medical-vocational rules are used as a framework for decision-making unless there is a rule that directs a conclusion of "disabled" without considering the additional exertional and/or nonexertional limitations (SSRS 83-12 and 83-14). If the claimant has solely nonexertional limitations, section 204.00 in the Medical-Vocational Guidelines provides a framework for decision-making (SSR 85-15).

If the claimant had the residual functional capacity to perform the full range of light work, a finding of "not disabled" would be directed by Medical-Vocational Rule 202.21. However, the claimant's ability to perform all or substantially all of the requirements of this level of work has been impeded by additional limitations. To determine the extent to which these limitations erode the unskilled light occupational base, the Administrative Law Judge asked the vocational expert whether jobs exist in the national economy for an individual with the claimant's age, education, work experience, and residual functional capacity. The vocational expert testified that given all of these factors the individual would be able to perform the requirements of representative occupations such as maid, housekeeping cleaner, with 5,975 jobs available in regional economy and 364,640 in the national economy and sales attendant, with 1,685 jobs available in the regional economy and 87,500 jobs available in the national economy.

*What do my age, education, work experience, or RPC have to do with me not being able to see or feeling like I'm going to pass out? If my body doesn't function, how am I supposed to work? And my past work experience is supposedly moot, according to #5. I could be a maid? So I can only so stuff when I only need to see some of the time, and that wouldn't affect cleaning work? Plus, bending over, looking up and down, and all that make me feel worse. A maid doesn't do any of that, right? And a sales attendant? What would I sell? Presumably, I'd have to know about what I'm selling, which would involve research, which would mean at least some reading. And who would hire me knowing that I couldn't commit to working any set schedule? Also, if all of these jobs are available in my area, why is unemployment so high? REALLY?! I could be a maid or a salesman? *ROLLS EYES*

Pursuant to SSR 00-4p, the vocational expert's testimony is consistent with the information contained in the Dictionary of Occupational Titles.

Based on the testimony of the vocational expert, the undersigned concludes that, considering the claimant's age, education, work experience, and residual functional capacity, the claimant is capable of making a successful adjustment to other work that exists in significant numbers in the national economy. A finding of "not disabled" is therefore appropriate under the framework of the above-cited rule.

10. The claimant has not been under a disability, as defined in the Social Security Act, since June 21, 2007, the date the application was filed (20 CFR 416.920(g)).

DECISION

Based on the application for supplemental security income protectively filed on June 21, 2007, the claimant is not disabled under section l6l4(a)(3)(A) of the Social Security Act.

Bones...

2014-08-21T16:17:00.001-04:00

I stroke her head, like so many times before, a comforting exercise more for me, really, as was usually the case. The doctor injected the sedative to ease her pain, then the final medicine to take it away. The effect was almost instant, taking only seconds. I continued to caress her, tears falling, apologizing for being unable to prevent this extreme, powerless to cease her suffering in any other manner. My heart breaks even more.

Her body is still warm, almost like she's sleeping--she loved her sleep, picking out a new favorite spot to rest every so often--but this wasn't a typical slumber; she wasn't breathing. Her body no longer expanded and contracted, a feat that took much too much effort at the end. I couldn't stand to see her labor so hard to merely fill her lungs with air, a task that should be easy, something we take for granted until we're reminded of its importance. I take my time and say goodbye, sorry that it had to be this way, relieved that she was at peace, already missing her terribly as I cling to memories of when she'd cheer me up, often unintentionally, but not always. I give her one last kiss, then I take her home.

My dad and I dig in the back yard. There is comfort knowing that the part of her that remains will rest close by. Of course rocks and roots and bricks make digging difficult, all befitting her stubbornness. I don't mind the extra work, though, I'm not ready for it to be over.

I brought her into the house--inside the carrier, lying in the bed she refused to even acknowledge for so long before finally taking to it. The dogs came to check on her. They remember her even though she and I moved away two-plus years before. Despite an immense size difference, they were terrified of this small, feisty, fearless creature. They were confused when she was sweet and lovable and cleaned their ears, unsure how afraid they should be when she came to lie with them. Something was wrong. They sensed it. I'm sure they smelled my sadness, too. I put her in my parents' bedroom to be undisturbed while we dug.

The hole is finally deep enough. It is time. I both dread and welcome this final act, not wanting to let go, but still appreciative of this ceremonial farewell. I go to get her. I have trouble pulling the bed out of the cage, but I manage. She still looks like she's sleeping. She's still somewhat warm. She's still not moving. She's really gone. I pick her up to wrap her in the shirt I was wearing moments before. It had my familiar scent, which seemed fitting even though she could no longer smell it. Her limp body isn't easy to keep in place. It's almost like she's squirming out of my grasp as she would do, but, no, it's just gravity. I have her now, in my arms one last time. I walk with her to the fresh grave. It's so deep that I have to get on my knees to lay her to rest carefully, respectfully, lovingly. I kiss my hand then touch her. This is goodbye.

I tell her I miss her, that I'm sorry, that I love her. I thank her for being my friend, for loving me. I put the first shovelful of dirt on her, then my family, and then my dad and I finish covering her. The hole in my heart will take longer to fill. She's gone. More tears fall. She's gone.

It hurts so much that she's not here any longer. I'm not ready to be without her. But it was more painful to see her struggle to walk more than a few steps at a time, having trouble breathing, unable to eat. She was doing so well just before, then she wasn't, then it was over. Life can be fickle. I miss her.

They put an IV catheter in her paw to make things easier and more comfortable. She still had some fight in her, the vet tech said. After she was brought back she was restless. She didn't want to lie down, she wanted off the exam table. She was too weak to jump, so I put her on the ground. She walked around a little, distressed. I lay on the floor to be with her one last time. She came to me and climbed on my chest, but only halfway because it was too hard. The doctor knocked, then opened the door. I was in the way. I scooted her off of me and stood. She'd never been so heavy as she was when I picked her up and put her back on the table. She was too tired to resist. It was time.

My apartment is so empty, lonely. I'm really alone now, it's really just me. She's not bugging me to feed her every time I move or whenever my phone makes a sound. She's not here when I walk through the door. She's not outside the shower curtain waiting for me to finish bathing. She's not jumping in my lap, not always at my feet, not biting my toes. She can't come by to thank me for feeding her after she's eaten. She's not here anymore. She can't check on me when I get too woozy and fall, forced to stay on the floor. She's not here to talk to, sometimes in English, sometimes in French, sometimes with meows. A source of support that I relied on so much is no more.

At least we got to cuddle one last night as she rested her head on my arm sleeping beside me on the couch. She always had to have her head touching something when she slept. I'm glad we had that extended moment. It was good for us both. I just wish it wasn't the last time we'd snuggle up together.

I miss my kitty cat. I miss my friend.

Goodbye, Bones.

Saying, "Good-bye," is hard to do...

2013-05-25T04:15:00.000-04:00

I ate too many cookies and I'm crying. Those are unrelated events, really, outside of their shared relationship with me. This isn't about cookies, anyway, which, in fairness, were delicious, I just shouldn't have eaten so many.

I'm crying because I just watched the finale of The Office. I can be overly sentimental about such matters, but this touches me a little more deeply than usual. It's a good show, but I wouldn't say it's my favorite. It is, however, somewhat perfectly what it is, though, silly stories about finding joy and humor and love in ordinary things. It's a show that I've watched from the beginning, too, so I'm a little more invested in it. Watching something run its course from start to end has a certain significance, at least for me.

I liked how they wrapped it up. It was well done and satisfying, a fitting farewell. There was an appropriate amount of closure without being overly indulgent. There's still the sense that the characters live on in some reality, but that they've moved on with their lives and this chapter that's been shared with us is over. It helped that the characters acknowledged this in a very natural way. It was time.

What really strikes a chord with me, and it happens with other things, too, is that I have so little going on in my life that I can (and do) put myself in the world of a TV show. It's a real part of my life, in this case, half an hour at a time over 8 years, 9 seasons, and 201 episodes, every single one of which I've experienced. I felt a part of something, uncommon for me in real life, but now it's over and I'm sad. I'm sad that I won't have this specific distraction from my life, something that made me smile and laugh and feel a little. I'm sad that I have such a void that's so easily filled by a television show. I'm sad that I don't feel good at all while writing this, times like these a big reason why TV has become so important to me. I'm sad because it's not likely to change anytime soon, and now I'm short a proven escape.

I wish my relationships with people were as strong and as trustworthy and as reliable, but, well, they're not, by and large. The more I think about it, the more similarities I see, though, with most of the attachment and significance being on my end. At least with television, it's more of a given--there aren't the same expectations of reciprocation. People are so much more disappointing that way.

So I'm sad...and I cried...over a TV show. At least there was a sort of good-bye and a bit of closure in that sense. Plus, I can watch the re-runs anytime I want. You can't do that with people, and if you could, why wouldn't you just make new memories instead?

If you're reading this and if you know and care about me at all, let's make some new memories. Not everything has to be some blockbuster episode, just a normal day at The Office, if you will, would be more than fine for me. I'm rarely busy, so most any time slot that works for you will probably work for me--just don't pre-empt me, please. I'd appreciate it if you don't post-empt me, either (whatever that means). And if you've stumbled upon this somehow and don't know me from an extra in the show, go make new memories with people important to you. As much as I enjoy TV, I'd be much happier if I didn't have time to watch it.

Auditions for co-stars in life are open, name your place and time.

Something to work with at some point maybe...

2013-01-23T01:18:00.002-05:00

Just a little fictional confrontation that popped in my head. I might use it for one of my many yet-to-be-started writing projects at some point...lol

(Someone comes up on this dude to rob him or something, threatening him, anyway...)

"Am I supposed to be scared of you? Listen, fuckface, I've been to hell already and left because I got too cold. I ain't afraid to die. As a matter of fact, there have been times in my life that I've begged for death. Now is not one of those times. You don't know me, man, so be careful...or else I just might have to send you to hell to gauge the temperature for me. Boo, motherfucker."

Touch...

2013-01-05T00:32:00.000-05:00

December 31, 2012

Your hand moves across my face with a sweet caress. Your fingers glide across the scruff on my cheek, then up past my ear, and back down again. Chills radiate with each soft, deliberate stroke. My eyes, closed, I take in the sensation without visual distractions. I listen to you breathe--I can feel your heart beating, and mine, fluttering faster, our synchronicity the source of radiating goose bumps. I'm both relaxed and excited, anticipating. No need to speak, words superfluous. My eyes open, peering only into yours, my hands firm but gentle, on your face, delicately pulling you closer to me. How was I ever without you? How can I ever be again? Our foreheads come together, and then our noses, tenderly. Face to face, I see you. I see you. I see you. Your chest next to mine, close, my fingers flow softly through your hair, then down your back, purposefully to your hips. Our lips together, eyes open, smiling, our bodies swaying slowly to the music of our heartbeats. Tongues play, eyes closed, dancing still, skin on icy fire, feeding on the moment. Time could stop now. Hands wander <remember to breathe>, hearts race more <inhale>, knees weak <exhale>, no longer two. Perfect. Happy. Love. Now. Always.

...Perhaps...

Chill the Fuck Out!

2012-12-15T05:12:00.002-05:00

Saturday, December 15, 2012

This isn't about anyone in particular. It applies to several people I know, mostly younger (female) family members, but not exclusively. So if any of this rings true, please know that I'M NOT PICKING ON YOU! I promise! And before you get your panties in a bunch, read the whole thing. Also, I'd like to think that most anyone could benefit from at least a tidbit or two from this, so even if you're not a younger, female family member of mine, it'd be a worthwhile read.

The world is neither conspiring against you nor does it revolve around you. When something that you find unfavorable happens to or around you, don't take it so personally. You are not that special. You are not that important. Deal with it and get over it. Life will go on either way, so don't waste so much time pouting. Grow up.

You couldn't wait until you were 18, free of parents, grandparents, step-parents, guardians, teachers and whoever else who was telling you what to do, giving you advice, or trying to guide you. Wish granted: you're an adult. Act like it. Congrats, you call the shots now. Yes, working a shitty job sucks. Did you expect to start out as a CEO? And, yes, being responsible for rent, a car, utilities, cable, Internet, food, pet supplies, toiletries, household items, etc., etc. can suck, too. It's part of life. Just do it. Don't cry if you don't have enough money to buy make-up or video games or tattoos, or that cute outfit that is just to die for. Take care of the important shit, work harder, get an education, get a better job, and just do fucking something to get what you want instead of whining about how hard it is. That's life. Very little is given to you, and there isn't always a straightforward path to achieve your goals. Find a way, make a way, and quit whining.

Your 18/19/20/21 year old boyfriend whom you just love so much likes to play video games instead of waiting on you hand and foot 24/7? Yo, he's an 18/19/20/21 year old boy. That's what they do. If you aren't cool with that, then don't be with him. If he keeps putting you down or walks all over you, simply don't put up with it. If he's actually abusive--verbally, physically, or any kind of way--get out of there. Tell someone. Crack him in the head with a frozen pepperoni log when he's sleeping. Don't just stick around and take it. And if he's really only annoying, don't act like he's giving you bruises. Put on your big girl pants and walk away. Find someone else. Find more than one somebody else (to a point). Stop bitchin' about it. You may get lucky and find the love of your life at 18. That's rare. Don't expect it to last forever. Take it as it comes, build on what you have, and if it endures, mazel tov.

Stop thinking that you'll have everything figured out by the time you're old enough to vote, or drink legally, or rent a car, or run for president, or collect Social Security. It doesn't work that way. You're not that smart. No one is. Learn to work with what you can control, what YOU can do. Don't be afraid to ask for help. Be kind to those who offer. Don't take it for granted that someone will bail you out of a jam, or jail. Avoid jail altogether. If you fuck up, that's on you. Some things you can't understand until you've lived a little. Some stuff will never make sense. Other lessons just take time. No one likes being told what he/she can or cannot do or what he/she does or doesn't know, but, often, the only teacher is experience. You're still young, but you'll get there. Gradually. Don't be in such a hurry. Enjoy the present because that's all we're guaranteed and sometimes even that ends abruptly. Make the most out of your short time on this world. Choose to be happy.

You may have some legitimate gripes. You lost a parent. Or both. Your dad wasn't around much. Your mom was an addict. You grew up poor and did without. No one seems to understand you. You got picked on. You were left out. You were sick. You're still sick. That all truly sucks, but it still doesn't make you special. Your mom that passed was also a daughter, a sister, an aunt, a cousin, a niece. Your dad that's gone was a son, a brother, an uncle, a nephew, a cousin. You're not the only one who misses them. Many people knew them much longer than you did. No, it's not the same, but that doesn't make their sadness less important than yours. It's natural to miss someone who's gone. It's OK to keep memories alive, to cry, to want the kind of guidance or insight only that person could give. Remember who is still here, who took care of you, who sacrificed for you because they love you. Just because you didn't agree with their rules doesn't mean you get to shit on them. It's hard on them, too. Don't forget to tell them, "Thank you," or, "I love you." They stepped up. They didn't have to. They still love you.

Stop bitching about not having any friends. Maybe you'd have friends if you quit saying that you didn't 15 times a day. They have their own shit going on, too. Perhaps they're just busy and didn't see your Twitter post. They might be going through something and need some space. Or they could just be sick of your pouting. Maybe they are truly horrible people, and if so, move on and find better folks to hang with. And be nice. Don't just take, take, take. Listen. Really listen. And laugh. When you have a good group of friends, cherish them, and have fun. Not everything is so serious. Joke around with each other. Don't get hurt if someone teases you a little--just give some right back and laugh some more. Enjoy it.

Stop with the text speech. It's not that hard to use proper English. Really. I mean it. Know the difference among homophones. Know what a homophone is. (I'll give you time to look it up, lazy ass. It's OK, I'll wait.) ..."You're" = "you are." There's a verb there. "Your" is a possessive pronoun. It does not include a verb. So when you tell someone: "Your dumb," who's really the dumb one? That was a rhetorical question, you're the dummy there. Yes, you. Don't blame auto-correct, either. Turn it off. No one praises the effectiveness of auto-correct, and it's not catching very obvious errors, so shut up about it. Take a second and use better language. OK? And now that you know what a homophone is, don't be a homophobe. I'm not sure who first said it, but here's Morgan Freeman's take via Twitter: "I hate the word homophobia. It's not a phobia. You are not scared. You are an asshole." Notice the use of "you are" and not "your." Quit saying something is "gay." If it's stupid, call it stupid. There are surely people who are both gay and stupid, but those are unrelated qualities. "Gay" does not mean "stupid."

Be glad and appreciative for what you have, even if it's not much, and not because there are starving children or other people living in horrible conditions around the world. Be mindful of that, too, but be thankful for what you have because you are blessed enough to have it. And if you worked for it, be that much more grateful. Know the difference between "want" and "need." No, you do not need those shoes. You do not need that car. You need food, water, shelter, clothing (to keep you warm, not to make you pretty) and love. Also, you need to listen to me. Yes, "need."

Love is a complicated thing. There are many forms of it. It's best when it's mutual, but it's not always necessary. And, yes, it does hurt when your love is not returned, but you can't make someone love you. I repeat: you cannot make someone love you. And should you not feel the same as someone who has feelings for you, do be kind. You can't help whom you love, only what you do about it. I'm not suggesting that you accommodate a stalker or anything like that, but don't needlessly trample on someone's heart because he or she is not "cool" enough. Again, you are not that special. Like Elvis and Bobby Brown sing, "Don't be cruel."

Respect yourself. Don't settle for BS. Don't put up with shit because you're afraid of being alone. Don't put yourself in bad positions. Work hard, even if it goes unnoticed. You'll know. Be worthy of others' respect. Have respect for others. You will encounter many people whom you do not like. Some may even fuck with you directly. Just walk away. It's really not worth it. If Person X irritates you, don't hang around Person X. If it's unavoidable, don't interact with him or her. None of that is to mean that you don't stand up for yourself. Pick your battles wisely, though. Does arguing with some dumbass about something equally as dumb accomplish anything? Is he or she going to suddenly see your point and understand? Um, no. Be the bigger person. You don't always have to get the last word in. Really. You don't. See how annoying that is? OK. Moving along...

Just because you have the ability to share your every waking thought with the world doesn't mean that you should, or that we want to hear it. Social media is a great tool to keep up with friends and family. It's handy for venting now and then. Subtly (or even outright) crying for help can be a good use of the public forum. But not every little minor annoyance needs to be expressed. I'm sure menstrual cramps suck, but there's nothing I can do about it, and there's not much anyone else can do, either. If you whine and whine and whine about anything and everything that doesn't agree with you, it becomes very easy to tune you out completely. Then we miss something important because you cried wolf too many times.

Take responsibility for yourself. If you fuck up, then YOU FUCKED UP. Deal with the consequences. Be mindful of the repercussions and just don't fuck up, not big anyway. Don't think you'll get away with stuff. It'll eventually come back to bite you in the ass. Hard. And it will leave a mark. If you don't like where you're at, think about what YOU did to get there and what YOU can do to get where YOU want to be. Have a backup plan. Don't be afraid to fail, but don't look for excuses when you do. Take the good with the bad, but focus more on the good. Don't get so lost in big picture ideas that you get discouraged because you're so far away. Have smaller goals that lead to the bigger ones. Be happy with progress, even if it is only a little--progress is progress. Learn from your mistakes. Learn from others' mistakes. Listen to advice; you can always disregard if it doesn't ring true to you, and it might make more sense later on. Keep your priorities straight, even as they change. Don't put yourself in bad situations. For example, if you're not in a good position to have a baby, then be careful with activities that can lead to you getting pregnant. If you're the potential dad in this scenario, man up and don't leaver her to deal with it alone. You're just as responsible.

Have realistic expectations. It's good to dream, but don't count on winning the lottery 7 times so that you can buy Hawaii and live out your days in paradise. You're probably not going to win the lottery even once (and by such a large margin that "probably" almost isn't needed), and Hawaii is not for sale, anyway. Don't plan out your whole life. You're young. Live. Enjoy the freedom you have. It has been said so much that it's become cliché, but it is still true that you will regret more what you didn't do than what you did. I know this for a fact. Thinking you shoulda/woulda/coulda sucks major, dirty rhinoceros ass. So go out and do. But don't be reckless. Don't be a dumbass. Have goals, but remember that you can change them. Your interests will grow and mutate as you live and learn. Don't give up because it was too hard, though. You'll really regret that later. Really.

I've said a few times that you're not special. I fibbed. What I mean is that your problems are not unique. One of the cool things about humanity is that we share so many experiences. We're not alone in feeling how we do, good or bad. We all want the same basic things: freedom and opportunity to be happy, to love, and to be loved. Each one of us is extraordinary and peculiar and distinct and worthy of love and happiness. That goes for you, too! Yes, you! Who do you think I'm talking to here? Your problems, however grave or imagined, are a big deal because they are YOURS. And that's OK. It's the same for everyone else, though. Remember that we're all in this together, that you're not alone, that you are loved, and that you can stop freaking out over every little thing. So, chill the fuck out and live your life as best you can. And if you take just one nugget away from this, know that I LOVE YOU, I'M HERE FOR YOU, and with some work, EVERYTHING WILL BE OK. I mean that. Oh, and know your homophones. I mean that, too. ;)

Peace!

P.S.

You might find this hard to believe, but I'm not perfect either.

Freshman Move in Day at Notre Dame

2012-08-17T18:15:00.002-04:00

August 17, 2012

So today is move in day for ND freshmen. Has it really been 15 years since I was one of those students?!?!

Way back when in '97, I didn't know what to expect, and I was surprised almost immediately. I'm not Catholic, went to public school, was used to being in the racial minority at school (and I'd never been around so many white people before...lol), had my eye stuff going on, I wasn't a legacy kid, didn't drink (and didn't want to), was rather shy (much more so than I am now), didn't know a soul there, and I was quite possibly the poorest kid there not from a 3rd world country. Hearing all of the F-bombs by my dormmates freaked me out a little bit; I had no idea good Catholic boys cussed so much.

My dad had a truck, and my mom wanted to see me off, so we all took the boring trip up US 31 together. It was the most time they'd spent with each other since splitting up when I was 3 or 4, but it was nice--weird, but nice. As soon as we got my stuff in my room, they left. My mom wanted to stay a little while longer, but my dad drove and wanted to go, so they went. Pretty much everyone else I met had parents stay the weekend as customary. I mostly tagged along with my roommate and the guys next door since I was on my own.

I remember walking over to Carroll Hall for a bonfire or something, the first mixer kind of event that comes to mind. It was the same awkward conversation over and over: Where are you from? What dorm are you in? What's your major? It was still cool. The graffiti dance was fun the next night, I think. We were all supposed to wear white shirts and bring markers to write our numbers on each other. I didn't have a plain white shirt, so I turned one that had a logo on it inside out. For the first 2/3 of the dance, I played basketball (it was held outside on basketball courts), mainly trying to dunk. I almost got a couple to go, and then I got tired. My shirt was all sweaty from running and jumping, and I'm not sure why anyone would have wanted to touch me. I didn't quite stink, though; my deodorant worked. I still have the shirt in a bag somewhere, but I forgot who was who almost immediately, kinda defeating the purpose of the exercise. I was too shy to call anyone, anyway, so it didn't matter that much.

I was supposed to go to some meeting as part of the orientation on Monday night, the infamous and awkward "don't rape girls" skits (from what I heard afterward, anyway). I was content watching Monday Night Nitro (WCW wrestling) and just chilled with some upperclassmen to catch that in the dorm TV room. When I asked them about how mandatory the event I ultimately missed was, I was told that as long as our beloved rector, Fr. Steve, hadn't called for it, I didn't have to go, so I didn't.

It was a good, weird, eye opening, awkward, transitional, and a little bit lonely time. It took me a little while to find my groove, especially socially, but I'm very thankful for the time spent and had opportunities at Notre Dame and in Sorin College (my dorm, for non-Domers). I met some amazing people, was challenged academically, learned a lot, and became a better man through it all. It was often tough--dealing with my eye stuff, having craziness going on at home, letting go of being so self-conscious--but that's all part of growing up, and I did a lot of that my 5 years there.

Part of me would like to go back and do it all over again (a little bit better this time, though), but a bigger part of me is just happy to have the memories (and is still burnt out on school...lol). Wow...15 years...I feel so old...but I remember it like it was the day before yesterday, and I'll always have that.

...And our hearts forever, LOVE THEE NOTRE DAME!!! GO IRISH!!!!

PSA from the Sasquatch Community:

2012-06-22T01:19:00.000-04:00

(from February 21, 2012)
Please stop referring to us all as "Bigfoot." There are many of us, and we don't all have the same name. In fact, not even one of us has ever been christened "Bigfoot"--ever. The closest anyone has come is "Biigflut," but his parents were hippies and the name doesn't mean anything in particular. Also, apparently whomever's tracks you're basing the "Bigfoot" moniker on is somewhat of an anomaly. Most of us have reasonably sized feet.

Too, with the today's technology, can't anyone film us in high definition? All of these grainy, blurry, low quality videos are just insulting. 1) Such camera "techniques" make it far to easy to fake it, and 2) we are much more handsome creatures than we're given credit for. We like to feel sexy, too, so help us Sasquatches out a little, won't ya?

And lastly, please tell the people at Jack Link's Beef Jerky to quit teasing our fellow Sasquatch. It's not funny, and someone always ends up hurt. The particular Sasquatch they keep messing with is a rather sensitive fellow and doesn't deserve such mockery. Financial reparations to pay for his psychological care would be appreciated as a gesture of good faith.

Thank you for your consideration.

Addendum: While it's certainly implied, we just wanted to reiterate that we are real.

Letting go...

2012-06-10T21:54:00.000-04:00

So I really like someone…but now I think I have to try not to…

She’s great: beautiful, caring, witty, multifaceted, unique, generous, funny, headstrong, independent, sexy, empathetic, super smart, and just all around awesomesauce (to borrow a word from her). The more I get to know her, the more I want to know, and the more compatible I feel we are. We have quite a bit in common, both good (as in similar senses of humor) and bad (like having dealt with substantial health issues), and with those not-so-great things, there’s this bond that you just can’t have without going through something comparable. It’s nice when someone just understands without having to say anything. I believe the ways in which we differ are quite complementary, also, leaving plenty of room to learn from each other and to keep things interesting.

She’s just a cool chick who not only gets (many parts of) me, she’s actually wanted to. Though I know it wasn’t exactly literal, one of her first requests of me was to tell her “all things.” As someone who’s so often ignored and dismissed, but who wants to share and engage with others, this meant a lot. And it was she who initiated becoming friends on Facebook, a gesture that’s not lost on me, either. She was interested in me, that’s right, me! I will never take that for granted.

Just by being herself, she’s kept me on my toes, reawakening parts of me that I feared were lost forever. I feel smart and creative again, resembling an older, more complete and less damaged version of myself that I like a great deal better. Even with my re-found creativity and sharpness, I can’t describe how significant that is. So much of my identity has been taken away as my body, mind, and spirit have been broken down. Now I have some of that back. I’m better for having her in my life, and I am forever grateful.

I’m drawn to her, too, because I recognize that she’s hurting. She has a lot going on and just what I’m specifically aware of is significant and runs deep, and, despite her brave fronts, I still see her pain. I want with all of my heart to take it away—not that it’s my place, or that she needs me or anyone else to help her, but because she doesn’t deserve it and I want better for her. Part of what’s weighing her down is how she’s been treated by others, and I want to show her how it feels to be boundlessly adored, supported, understood, appreciated, and loved (all in due time, of course), no strings attached, because she’s more than good enough just as she is.

It’s been difficult trying to break through to her. She’s admittedly rather skittish, and the more I’ve advanced, the more she’s pulled away. It hurts me that she’s been hurt, keeping so guarded, not wanting to get hurt more. Unfortunately, I haven’t responded well to this, failing to recognize what I’ve done until after I’d pushed too much, too often. I just haven’t been able to figure out how to properly express my (only good) intentions to her, incapable of getting past her understandable defenses. My attempts to clarify things have just made things worse, piling onto my mistakes. I don’t know how to pursue her passively in order to get her to come to me. I fear that withdrawing too much will take me completely out of the picture. To understate it greatly, I know that I’ve been overly proactive so far, but I haven’t a clue where a happy medium lies, and therein lies the rub.

I’m so used to people disappearing on me, and it started early. My dad wasn’t around much. My mom was there, but not. Friends have come and gone. Few have stuck around, and there are gaps with those who have. People living in the same, small house have been distant regardless of our physical proximity, rarely being there when or how I’ve needed them. When I give people a chance to miss me, they generally end up going missing. I’m just so used to being left alone and having to put forth such effort for any little bit of sustained connectedness, at times going overboard when my attempts aren’t acknowledged or reciprocated.

It's not that I need or want constant attention; it's more that I have to do so much to get any at all, and she gave me lots of it to start out, spoiling me as I became accustomed to it. Being alone was easier to manage when I was healthier because I had more options available to stay occupied. It’s tricky now, stuck sitting around, not feeling good, forced to be on the outside looking in with unreliable vision. To keep from stewing over feeling horrible, I ponder more pleasant things, like being with her, and then I get in trouble idealizing that somewhat. I should have been much, much better at keeping that in mind, but it was so very enjoyable that I let myself get lost in it. A wise friend reminded me that wanting something so badly frequently perpetuates the lack of it, and that’s certainly been true here, contributing to my overzealousness and many miscues. Add in a warped sense of time (watched pots never boil and all), and I can get a little crazy, not being fully conscious of exactly how little of it has actually passed between exchanges.

When I know and trust that something's there, I’m good with it, even if it's not as much as maybe I'd like. When I can count on at least a certain amount, I have something to work with and I’m fine. It sometimes takes me a bit to adjust to changes, though, which has bitten me in this case. I recognize, too, that what others are able to see is often only my madness, not quite in context, so I can't blame them for reacting in kind. But once that seal is broken, it's hard to put it in perspective, particularly when I keep shooting myself in the foot doing the same things. Loneliness and isolation are challenging to navigate, especially when there's some hope of it diminishing with someone as wonderful as she. It's really easy to get on that train full force, muddling things when subtly is called for. I’ve had a tough time leaving her alone, partly because she provides a lot of fodder for feedback with her frequent and always interesting Facebook posts. Sitting in front of my computer as much as I do, I’m never that far away from seeing them, regularly unable to resist the urge to join in. Simply enjoying our interactions, a rare good thing in my life, adds to my wanting engage so often.

There is something between us, though, and she’s acknowledged as much, so I’m not completely crazy. Chatting has been fun and flirty, sometimes serious, but always enjoyable. There are a few video and writing projects I did for her (e.g. http://visorbrent.blogspot.com/2012/06/psa-from-sasquatch-community.html and http://visorbrent.blogspot.com/2012/06/distress-call-from-australia.html), along with a couple small gifts, and they were received well. It pleases me immensely that I’ve been able to make her smile, even just a little, and I’d love to be able to do that more and more. I really believe I can be at least partly what she needs, and for a time, maybe she entertained the thought, too. Now, I’m not so sure, and I have only myself to blame.

I have managed to screw it up. When I should have just let things play out, giving her a little time and space, I forced the issue for reasons I still can’t fathom. And when she backed off further, I unwisely pressed more. The kicker is that I really am much more laid back than I’ve shown myself to be—I just got too excited about the possibilities and became unnecessarily and unwittingly impatient. I’d sincerely be more than happy with what she’s ready to give, both with her time and affection, but my constant pressure has been too much, diminishing greatly what she was already willing to set aside for me. Looking back on everything, I feel so very stupid for getting so ridiculously crazy. I feel even worse for adding more stress to her already outrageously hectic life and I’m lucky that she hasn’t run away completely. That she’s let me stick around at all has given me some hope for the future. I’d like to build on that to earn my place with her.

Through the magic of Facebook, I’ve become acquainted with her best friend, a lovely gal in her own right. She’s been great at giving me advice and perspective on things (though much of it I foolishly ignored). Chatting recently, we got into how different factors growing up have affected us, and I related some of those to how I’ve messed up so badly in my attempts at this courtship. I asked for more guidance to help me to get out of the massive hole I’ve dug for myself. She was terrific, as usual, eventually telling me what I already begrudgingly knew: that I should perhaps let go of any romantic aspirations and focus on being a friend. To go out on a positive note, and to confirm that I did at least something right, I asked if there were anything good that was mentioned about me that she could share. It took her a minute, then she replied: “I'm certain she has said good things of you, but your somewhat frantic desire to firm a connection is somewhat off putting.” That stings quite a lot because it is a fair summary and it’s completely true. Bolstering its potency was her inability to think of anything specific. It would seem that I made much less of an impression than I’d thought. Maybe I’ve been unrealistic thinking I ever had a shot.

It hurts. A lot. I’ve been made to feel special by someone I believe to be unquestionably extraordinary, and now I have to let go of some of that. It’s painful, too, because I know, absolutely, positively know in every way that I can that if we could reset things a bit and give it a go, we’d be good for each other for however long it would last. I appreciate that things are nuts with both her obstacles and mine, but if I could manage to come across as somewhat sensible, and if she could let me in just a little, it'd be enjoyable and worthwhile for us both. Timing's never been kind to me, either, really, and we’ve caught each other at especially awkward moments with us both in the middle of significant transitions. My freaking out over my eyes potentially getting worse has added to the mess, my nervous energy lingering and bleeding through.

I’ve mucked things up so horribly that I probably don’t even deserve an opportunity with her, and I’m not sure if I ever did. So now I have to try to let go of these feelings, already deeper than they should be, and I’m not sure exactly how. It’s going to be hard when every part of my being tells me to keep pursuing her, but I must try set that aside. I want her to be a part of my life, even if it’s just as friends, and I truly hope that I can manage at least that. We can still be good for each other; it just might have to be within a different dynamic. Let’s see how it goes. Que sera, sera.

Distress call from Australia:

2012-06-10T05:33:00.001-04:00

Dear world, PLEASE HELP! As many of you know, Australia is home to many of the deadliest animals on the planet. And despite our laid back nature, we're as terrified of these creatures as the rest of you. BUT WE'RE STUCK HERE! THESE KILLERS ARE HOLDING US HOSTAGE!

It's taken us this long to speak out because of our fear of the repercussions. These critters are more tech-savvy than you'd think, and one false move on our part could set them off. But recent events have pushed us too far, and now we call on our fellow humans to help us Aussies out. Have you seen this??!!??!

(http://i.imgur.com/TEwqS.jpg)

Please, for the love of humanity, come and get us. We can't just fly or boat out from here, these critters have our vehicles on lock down. Plus they're all infested with the vermin that we're trying to escape from. It wouldn't be any good to spread these nature gangsters throughout the rest of the world. And we're fine going anywhere but here. We understand that there's not a lot of room for us, but drop us off in Antarctica if you want. We'll make do. Just please get us off of this death trap of a continent.

G'Day,
The People of Australia

* Originally posted on Facebook on March 7, 2012, 10:42PM

* By the way, those are spider webs in the picture.

Am I going blind(er)?

2012-05-30T04:58:00.000-04:00

May 30, 2012

It's hard for me to admit, but I’m scared. I really think my eyes are getting worse. The blind spots are more prevalent, and maybe bigger. My eyes don’t seem to be compensating for each other (where the blind spots are in different places in each eye) as much. It’s harder to focus, especially to read. I see flashes more often and in unfamiliar shapes and locations. My eyes tire even more quickly than usual. It’s not unlike when I first noticed changes in my vision at the tender age of 15.

I really don’t want to lose my sight. There are too many beautiful things I’ve yet to see. I don’t want to miss watching my nieces and nephews grow up. I want to be able to see clouds and rain and rainbows and sunsets and nature and the stars in the sky. I want to look at my wife (should I ever be so fortunate) and notice every detail of her perfect, corporeal self, to gaze into her eyes and get visual proof that her love for me is sincere. But who would want me then, anyway? I’m already so broken.

I don’t want to lose the limited independence I have now. I don’t trust or expect, really, anyone to take care of me. What happens when I get woozy and fall and I can’t see what’s around me? What if I’m outside and fall into the street? How will I get around and do normal things like shop for groceries or clean my house? It’s not like I have the money to pay someone to assist me. How will I keep in touch with people? So much of that now is done online. Will I have any social life at all? I do so little as it is, in large part because of my limitations.

So far, the doctor hasn’t been able to observe any changes, and even if he eventually does, there’s not very much to do about it. I’m taking steroids now. There may be one other medicine to try, or possibly some chemotherapy treatment. Nothing’s proven to work. I’ve figured my vision would get worse over time. I’m not a terribly lucky person, especially with regards to my health, and having it start when I was so young just gives it more opportunities progress. I’m only 33, though. (Fuck, I’m 33. “Only” 33?) Oh, and I have all of this other crazy shit wrong with me, too. I might be the only person who’s ever existed with my combination of major ailments, and, no, that does not make me feel special.

I’m scared. I’m trying not to freak out any more than I already have. I’m having mixed results with that. I’ve been more anxious than usual, often having to catch myself to calm down. But there’s no getting away from it. Every time, EVERY TIME I look at something, pieces are missing. When I close my eyes, there are weird shapes and patterns. It’s only when I’m sleeping that it’s not noticeable. I’m looking down at my hands as I type and I can’t see parts of my fingers or the keyboard. The words on my screen are an inch tall and that’s almost too small now. When I was at the movie theatre earlier tonight, it was harder than usual to see what was playing on the screen.

What am I going to do? I’ve already had so much taken away from me. I used to be so much smarter. It’s harder to learn and retain information now. I just can’t be exposed to things the same way or with the same frequency as I did before. I find myself just skimming across words instead of actively reading them because it’s too God damned frustrating to read a sentence 5 times because I wasn’t able to see the all of the letters that were put together to form words and sentences. I lose my place on pages and then have to make all of this extra effort just to find where I left off. And then it happens again and again and again.

Deep breath…and again…

I’m scared and mad and depressed and confused and so very fucking tired of my body failing me. When is enough enough? I’m not sufficiently damaged yet? I don’t want to have to fight so hard all the time just to be. I want to really live, not just survive. What am I going to do?

I close my eyes sometimes while walking around the house, or even outside when there’s not much around to cause me major problems, practicing. “How many steps to the bathroom? The door should be coming up. What the hell did I just trip on? Where’s the table? OUCH! There it is.” I try to experience what it’d be like not being able to see. I’m pretty good at it, too, but, for now, if I’m ever unsure about my surroundings, I can simply open my eyes and adjust accordingly. That probably won’t be the case in the future. What do I do when I open my eyes and it’s the same as when they were closed?

I hate that so much of my identity is based on what I can’t do (anymore). A lot of what I was capable of is even tarnished because it was so long ago that no one remembers. I forget sometimes, on purpose, even, because it hurts so much knowing what’s been taken away from me. Now I’m just poor, sick, lonely, pitiful Brent, a good enough guy, but, fuck, does he have so much wrong with him. It wouldn’t be as bad if all of this physical stuff didn’t bleed into everything else. My sense of time is off. It’s hard to do a whole lot, so I end up sitting around, thinking, just trying to find ways to occupy myself so I don’t dwell and obsess over everything. Even when I’m feeling OK, it’s hard to find motivation because it’s likely that I’ll feel crappy again soon enough, and probably before I finish whatever task I set out to do. I’m tired of being so damaged and of being seen as so broken down. It bothers me more that it’s a fairly accurate assessment. It’s not always easy to access or to express, but there’s still so much to me that no one really gets to see. Even those things seem to be slipping away, though, as my body falls more and more apart.

I’m scared. I don’t want to lose the rest of my sight. *sigh* There’s so much I still want to see, perhaps even your beautiful face. Tick tock…

Acceptable Risks...?

2012-02-19T21:23:00.000-05:00

February 19, 2012

I’ve been made aware of my mortality again this week. My quality of life within that has also come into play. I did get good news that the tumor appears to be stable and unlikely to grow. I don’t mean to discount that at all because it is major progress; however, I was hoping that the discussion of further treatment would have been less passive.

The tumor is in a bad spot that’s hard to get to. It’s near a lot of important stuff, too, so we must be that much more careful. Any surgical option would be very risky and there’d almost certainly be significant collateral damage. One possible point of entry is behind my ear and I would most likely lose hearing in it. Another way would be to cut out part of my mandible (jaw bone) for access, then reattaching it after. That would have considerable lasting effects as well. And even if some procedure works perfectly, the damage done may already be permanent and my symptoms would not go away. I’ve always understood these dangers, but now I’m even more aware as I’m staring at them more closely.

My doctors want to stand pat and monitor things, and I appreciate why. They’re firmly against taking huge chances. I’m not quite sure what I’m willing to risk. I’m not an invalid; I can get around and take care of myself for the most part. But I can rarely do what I want to do, when I want to do it, how I want to do it, or with whom I want to do it. I never really feel good. Sometimes I’m OK, but there’s no way to know when that’ll be or how long it’ll last. More often than not, I’m stuck sitting here wishing I were doing something else. If Disability ever goes through I’ll have a few more options, but they’re still contingent upon my health.

I’ve felt continuously worse over time. I put up with more now than I did 6 months ago and the tumor is the same size. It doesn’t seem unreasonable to me that, with this given pattern, the trend will continue. But for how long and how much worse will I feel? When is it worth it to risk needing tubes to eat and/or breathe? When is it appropriate to risk paralysis? When is it acceptable to risk death? I came pretty close during my last surgery—do I tempt fate again?

I am tremendously sick of being sick. Unfortunately, some of you can relate to this, and I wish you nothing but the absolute best as you figure out things for yourselves. For those who can’t, I hope you never come close to feeling anything like it. I’ve missed out on so much this last quarter of my life. A lot of what made me me has been taken away. It would seem that most of that is gone forever. I believe I can relate to a professional athlete whose career was taken from him by some major injury, but my sport is life and retirement isn’t an option.

Basically, I have to decide what I’m worth. How bad do I have it, really? How much worse could it get? What else am I willing to put up with? Is this the best that I’ll ever feel? Is this really the best I’ll ever feel again? It’s possible to feel significantly worse than I do now? What is my life worth? What is an acceptable risk? How do I quantify that? I’m not sure what the number is, but there has to exist some reasonable, tangible, finite, and acceptable amount of danger. I have to try to get better, I just have to…but at what potential cost? And that’s where we are. That’s where I am.

Music therapy...

2012-02-15T07:27:00.000-05:00

February 15, 2012

Monday was a big day for me. I had my head scanned (not for anything psychological, I see a different guy for that) and then saw my radiation doc. It’s been 15 months since I got the radiation treatment, and I’ve only felt consistently worse, not better. The last MRI and follow-ups were 6 months ago, and some progress was made, but my expectations were probably too high. At the time, I was very happy to have done something proactive. That lasted only about 15 minutes, however, and then I just had to wait. I’m a fairly patient person when it makes sense to wait my turn; I’m just so fucking sick of being sick, though, and tolerance of my situation is wearing out.

But back to Monday…I didn’t know what to expect. I’ve not been terribly lucky, especially with my health, so I was prepared for bad news. Logically, feeling worse would seem to make it more likely that things are actually worse, so there’s that. It follows that I’m nervous and anxious. I’m still waiting to hear back about Disability, and that weighs on me, too. No matter how the judge sees things, I can’t work. If I don’t get this, I have no fucking idea what I’m supposed to do. I need it. Then add that I wasn’t feeling so great, coming close to falling a few times while walking around the hospital. I didn’t get much sleep the night before, and that didn’t help matters, either.

I ended up getting fairly good news. The tumor appears to be stable. It’s the same size as 6 months ago. It’s the first time that an MRI hasn’t shown growth. The doctor said that the radiation seems to have worked and that there’s only a small chance that it’d grow more going forward. It wasn’t as good as I’d hoped, but it was better than I expected. I had this weird sensation of cautious relief, still wondering what was coming next. While the tumor’s size stabilizing is good, I still feel like crap, and I still need to get it out to see if I’ll ever feel better. The damage could be permanent or the tumor is just irritating those nerves and removing it would alleviate my symptoms—or something somewhere in-between. We can’t know for sure unless and until the tumor isn’t part of the equation.

At least as far as the subject of writing this goes, the details of my hospital visit are all prologue. I took a nap after I got home. Getting some rest and having more time to process the good news, I was more content. I still had some nervous energy, though. I figured eating would be a good move. I was hungry, so that made sense. While I was fixing my 2 Totino’s pizzas, I heard the TV in the living room. My parents were watching The Voice. There was this girl singing “Hey There, Delilah” by the Plain White T’s, but it so weird and different and bizarrely good. She sounded like Björk crossed with Yoko Ono or something, but in a more pleasant way than you’d probably imagine. It took a minute to decide if I thought she was just crazy or if it was just so different that it was necessary to give it a little longer to appreciate. Her interaction with the judges was cool, too, which sealed the deal for me.

I don’t watch The Voice. I used to watch American Idol, but stopped awhile ago. Part of it is my need to care about the contestants to enjoy such shows, and no one had really moved me for some time. Also, I only have so much energy and care to give, and I’ve needed to focus most of that on myself, not some random people I’ll probably never meet. Another big thing that factors into this is that I’m very competitive. I like to imagine how I’d do in various settings. The whole “you can do anything you set your mind to if you work hard enough” stuff stuck with me as I grew up. And I used to sing, mostly to myself, but I sang. It’s a great, creative, and expressive outlet for me. Whether it’s singing with the radio, singing something I wrote previously, or just making up a song as I go along, it fills holes that life has dug out of me. I’m not always able to feel certain emotions that correspond to a given circumstance. Sometimes I’m actively blocking them so that I don’t break down 55 times a day. Other times I just want to share part of myself with another, but I have no willing partners. And there’s when things are too much and I just require something different to distract me. My bond with music works with all of those situations.

It’s hard for me to sing now. Most of the time, nothing will come out. I literally open my mouth and try to force air out through it and nothing happens. Now and then, I may get a few notes going before my voice quits on me, but it always quits before I’m ready. I’m not saying that I’d win a Grammy, but I could carry a tune, especially singing my own songs, especially when I needed to feel something. There was a time when I’d sing myself to sleep every night. It helped me to process my life and it relaxed me. It made me physically tired. It made me happier.

So I hear this girl sing on TV, and it had an effect on me. That’s what music is supposed to do. Combine the nervous energy from everything along with the competition aspect of the show and my frustration of having so much taken from me, and a switch flipped in my head. I started pacing in the kitchen, not too unlike a fighter as he prepares to walk out to the ring. I was getting hyped up, part angry, part happy, part fed up, part hopeless, part hopeful, but all real and needing a way out. I started making up songs to myself, freestyling. I was waiting to hear back from a girl to whom I wrote on a dating site, so that was added fuel to the fire. I ended up more rapping than singing, partially because I was going too fast to keep up just singing, but, too, because my voice wouldn’t let me just sing.

I almost tried out for American Idol the first 2 seasons. I saw a sign for the show in Circle Centre Mall when I was home for spring break. It’s rare that an ad like that works on me, but it piqued my interest and I found out more about it. I wanted to go to Chicago to audition the first year, but the combination of a horrible sinus infection, tons of makeup work that was due right at the end of the semester, and not really knowing how I’d get to and around Chicago did me in. The next season had auditions in Detroit, but I had similar problems and couldn’t go. I think that if I could have gotten over the nerves, I’d have had a good shot of making it to Hollywood. I wouldn’t have been laughed out of the room, anyway. Who knows how it would have turned out if I sang in front of the judges? Especially that first season, they “only” had about 10,000 total people show up. They got double that per city they visited in season 2.

It took me awhile to finally calm down. I had to stop pacing because all of that motion and turning around so much along with that crazy energy started to get to me. I was getting woozier and I didn’t want to fall. I was able to center myself enough to finish the pizza. I ate as I watched the rest of the show just to see how I’d respond. Would it stimulate me creatively or just frustrate me? It did a little of both, but frustration won out. I was too busy with the pizza to write down the lines I’d come up with before and I’d forgotten them. I had a few good ones that I could have worked with, so I’m extra bummed.

After the show was over, I cried to myself. It wasn’t a full-on break down with tears streaming, but my eyes watered up pretty good and my face got wet enough. I crashed from everything that had gone on that day, plus I was reminded of a big thing that was taken from me. My 2 biggest outlets were physical activity and music. I’m doing OK just to get out of a chair sometimes, let alone taking a run or playing basketball. I miss the sweet pain that comes after exerting myself past my comfort level. I can still listen to music, but so much of the experience is missing. I don’t write as much because I’m usually too out of it to get into the right mindset and my voice is gone, so I can’t even sing with the radio.

It’s bad enough that I constantly have to deal with so much crazy shit that affects me in so many ways. I’ve gone through a lot in my life, and I’ve done alright most of the time. But a big part of my coping mechanism, hell, if not the whole shebang itself, it’s been pulled out from underneath me, too. Life just ain’t fair sometimes, and it’s too bad. If only I could sing about it, maybe I’d be understood better. I’d definitely be significantly more content.

Now I know...

2012-01-02T01:09:00.000-05:00

***I know it's been over a year since I've posted anything on here. I do plan/hope to be more active, so let this be a start.***

January 1st/2nd, 2012

So I noticed that an attractive woman had visited my online dating profile earlier today. Of course, I checked out hers, too. She seemed really nice and sweet, so much so, that even though she has kids (a topic for another time), I decided to send her a message.

I was rather excited waiting for her to reply. You see, for whatever reason, I usually don't get a response. And that sucks. My messages are always respectful (unlike those of the many idiots who are online) and I try to make each one personal and specific to whomever I'm writing (no "form letters"). I put some effort into my messages to let the person know that I read her profile, I am interested, I say why I'm interested, and I add a little about me that would seem to mesh with what she's looking for...hopefully anyway. But I do try. So it sucks extra when I've actually put in some work to send someone a few (or, as you'd guess, knowing me and my propensity toward verbosity, more than a few) words to show my interest only to get nothing back. I would very much rather someone tell me to fuck off than to just ignore me.

But I had a good feeling that this particular person would answer me. For one, she looked at my profile first. Plus she was online at the time, so there was a decent chance she saw that I'd sent her something. Too, I suggested a couple of fixes to typos in her profile that she'd accepted. It took her a little longer than I expected, but she did finally respond. When I saw the notification email that I had a message, I was quite happy. Since she'd looked at my profile first, then accepted my edits, and then actually took time to respond to me, so I thought things were looking good...as a start, anyway.

Her message back to me was short, but nice. She thanked me for pointing out her typos, and also for what I'd written to her. So far so good. Then came the the "but." I talk about my health and living situation a fair bit in my profile, just to be clear and honest about things. If all of that is going to scare some away, then I'd rather it be from the start. And I'd referenced that stuff a little in my message to her: "Despite the craziness going on with me, I'm a good guy with a lot to offer." She said she liked my profile, but that she just wasn't "up for the unique challenges" that my situation would propose, and then she apologized.

I'm pretty sure that several people have seen my profile, then got to crap about me being sick and living at home and all that, and just decided to move on. And to be honest, I can't blame them one bit. It's a lot to deal with, I know, because I live it. There's more to me than my failing body, being broke/poor, not driving, living at home, etc., etc., but all of that trickles into everything else one way or another. C'est la vie.

When I've gotten no reply before, and it's happened quite a lot, I've said that I'd rather just get something back, anything, saying that she wasn't interested. Then I'd know for sure. I'd guess that many of my messages just go unread because there are so many idiots out there that girls are apprehensive about everything that makes it to their inboxes. So getting any response at all would let me know that there was some thought about it.

I've even specifically said that if my situation were too much, that it'd be understandable, and if someone told me exactly that, I'd understand. Having finally gotten a reply like that, well, it wasn't as satisfying as I imagined it would be, and it hurt much more than I expected. I didn't think I'd be all giggly about it--I knew it wouldn't be pleasant--but still. And she was as nice about it all as one could be, but it still hurt.

I guess now it's a real, tangible, and, most importantly, a confirmed thing, that my situation is a huge red flag. I suppose I was hoping that the many other aspects that make up me would be able to outshine the mess that is my life. Perhaps there aren't really that many things about me that are good enough to compete with the rest. Maybe I'm not worth getting to know. Maybe I shouldn't bother trying at all...

Before, it was all hypothetical. "Well, of course it'd be better to just be told that my situation sucks too much. It can't be worse than being ignored." Now, I'm not so sure. I do appreciate her taking the time to respond, and she did it in the nicest way possible. And knowing for sure that she's not interested is better than not knowing if she even read my message. But now the romantic idea of "knowing is better than not knowing" is no longer just an idea. Now I know. And it hurts much more than I could have imagined. But at least I know.

Radiation? Been there, done that...

2010-11-11T04:30:00.000-05:00

Now where are my superpowers? Damn, I forgot to bring a spider or something to bite me. Maybe I'll still mutate. I'll settle for Not As Sick Anymore Man. Hell, I'll take Not Any Worse Off Man. I'll even be a sidekick as long as there's no net negative effect.

Everything went fine. I rode to IU with my parents and stayed with them for a bit, then took the People Mover over to Methodist for my thing. I had to wait a little bit because one of my doctors was running late. It wasn't a big deal, I just dozed off in the waiting room. My neurosurgeon basically said the plan was good and asked if I had any questions. I was comfortable with the radiosurgery stuff, but my jaw is bugging me and asked him to take a look. He didn't see anything obvious and recommended I see a dentist. The radiation doc came in shortly after, went over the procedure, and was there to answer any questions. I still didn't have any. I then went back to the room with the machine, lay down, and got my head fastened into the mask. They did a couple quick X-rays, then started the radiation. There were 4 bursts, arcs as they're called from the Novalis machine, each lasting a couple minutes. I couldn't really see much through the mask, and just kept my eyes closed anyway. I didn't really feel anything, other than the table moving. I saw a few flashes of light during one arc, probably as some of the radiation beam got close to my retina. I smelled a hint of bleach a bit, too (still do off and on a little). It took maybe 15 minutes on the table.

Afterward, they went over potential side effects (sore throat, headache, fatigue, etc.), all minor, but said to let them know if anything was unbearable or lasted longer than a couple days. I had the radiation doc look at my jaw and he also referred me to a dentist. I was good to go, just tired from not sleeping much and from taking a valium earlier in the morning to help with my nerves and wooziness. One of the technicians gave me a I for completing the procedure, which was nice. I'll follow up in 3 months with an MRI and see how things are progressing.

I matriculated back to IU via the People Mover to be with Mom. She'd be in recovery for about an hour and was sleeping. Her thing went well. They ended up taking out the 2 stents that were there and put in 3 new ones. She won't have to go back until March to get those out. Hopefully they'll stretch out her bile ducts enough, but, if not, they'll do it again with either more stents or bigger ones. We then just waited for her to wake up and see how she did with some stuff to drink. Once she was relatively alert, she was discharged and we went home. She's doing well, just a bit icky and tired, which is to be expected.

I'd planned on sleeping after eating something, but got to messing around online. I caught up on my usual sites, then tried to find cheap/free dental care. I'm still looking into it, but if anyone has any suggestions, let me know. I have no dental coverage at present, and no money, really, either, but I have to figure something out. I'm due for a visit to the dentist, anyway (it's been awhile because of the money/insurance stuff), but my jaw is killing me. It's not as bad now, but I think I'm just getting used to the pain. My teeth all seem fine to me, and none of them hurt or anything, but my jaw feels misaligned and it's a bitch to chew. I can't think of anything I did, other than sleeping with my mouth open because of my bad sinuses and maybe rolling over on it wrong or something. Hopefully I can find a way to see a dentist and at least get a check up.

Now is the hard part, just waiting. The procedure was a bit anticlimactic, which isn't necessarily a bad thing, but I was expecting a little more fanfare, I guess. Again, I'm happy to have done something, but I hate just sitting around and not doing anything else. I understand that's how this works, but that doesn't mean I have to like it. At least it should be a relatively busy 3 months with the holidays and everything.

Thanks to everyone for the well wishes and support! It means a lot!
-B

Radiosurgery...

2010-11-09T03:51:00.000-05:00

I know it's been awhile since I've posted. It's just been a mix of being tired and woozy and stressed and letting that get me out of the habit of writing. The idea is to start posting daily, or at least regularly, again. There's a lot to talk about, and much to catch up on, but I'll focus on radiation stuff this time.

So I go in on Wednesday, November 10th, for radiosurgery (targeted, radiation--think short term lasers instead of extended periods flashlights) at Methodist Hospital. They'll be using a Novalis machine. I did my scans and had my mask made a couple weeks ago. The doctors will basically program the machine to target the tumor based on the scans. The mask helps keep me still and lets the machine know where I am. It will be a stereotactic procedure, meaning it's just one dose. There was talk of maybe fractionating the dosage (breaking it up), but they're confident that a single dose will work best. I'll be awake, and the procedure only takes about 20 minutes. The prep work and going over everything beforehand will take longer.

For awhile, I thought I'd have to travel to get radiation treatment. The plan from Phoenix was to use a Cyberknife machine, but it would have to be the latest model. There's an older version here at IU, but it's range isn't enough to get both my head and neck like the newer one could do. I was under the impression that the new Cyberknife machine was the only (or at least the best) tool to treat my tumor. It turns out that Novalis and Cyberknife are just brands, but they do the same basic things, just in slightly different ways. I was worried for awhile that I may have to settle on lesser equipment because of geography/insurance/money issues, but that's not the case. I'm not sure why I was confused about things before. I guess I misunderstood some of what I was told, plus I didn't ask the right questions. I'm content with this part of the situation now.

I'll probably be a bit tired, maybe a little queasy, and have a sore throat right after the procedure. That should only last a few days if I feel it at all. I'm not too worried about it. I'm not doing a whole lot as it is, anyway. Longer term side effects would all stem from tissue damage, pretty much, mainly the nerves near the tumor.

I'm still not big on doing radiation. It does seem to be the consensus next step, though. And after discussing it with my doctors, I'm not as worried about the risks as I was before. But there are risks. I'm mainly worried that healthy tissue will be adversely affected. The point of radiosurgery is to minimize those risks, beaming the radiation from multiple angles so that no single point is overly exposed. But not only is there that healthy tissue surrounding the tumor, the tumor is growing from and right next to some important nerves and blood vessels. I'm mainly worried that the radiation will damage those. I'm not terribly concerned about any future cancers from the radiation. It won't metastasize the benign tumors I already have, but there's a slight chance it could cause something else down the road. Being a relatively new technology that's used on very sick people, there's not a lot of long term data available. We'll see, I guess.

I am happy to finally be doing something proactive. I'd rather try something that doesn't work than just sit here and waste away, doing nothing. Aside from the potential to damage healthy tissue, I'm mainly worried that it won't do much of anything. Ideally, it will shrink the tumor significantly to where it's not an active problem. It may have already caused permanent damage to the nerves, so I may get no relief from the wooziness, but we won't know until the tumor's gone or much smaller. That is an unlikely result, but possible. At the very least, we're hoping that radiation stops further growth. Moderate shrinkage would be a realistic goal. There's also the possibility that the tumor's consistency will change, hardening it up and making it less gooey, which would make cutting it out easier if that's what we decide to do later. More surgery is an option depending on how I take to the radiation. The worst part about radiation is that it takes awhile to work. It could be years for the full effect to be seen, and probably months before anything is noticeable.

I've been more anxious and nervous about getting this done that I would have expected. While always mindful of the risks of any procedure, and hopeful that those risks are minimized as best as can be done, I'm usually pretty even keeled about medical treatment. The procedures are supposed to be solutions to problems, and I like solving problems. I was excited for surgery last year. I don't know...I think that just the general factor of the unknown and unknowable with this is what makes me nervous. Surgery is more straightforward: cut out the bad stuff and try to leave the good stuff alone. If you nick something, you know you nicked it and then you deal with that. With radiation, you zap the bad stuff, hoping the good stuff doesn't get too damaged in the process, then you wait to see what happens. I don't like to wait.

Mom is having some stuff done the same day. They put in some stents to help make a better connection between her new liver and her bile ducts a couple months ago, and now they'll go in to take those out. I'm more worried about her than I am me. I just have to lie still for a little bit. They have to navigate inside of her body to tweak some stuff that's already sensitive. She has to be at the hospital at 6AM for an 8AM procedure. I'll go with her and my step-dad when they leave, hang out with them for a bit, then take the People Mover over to Methodist for my stuff, which starts at 8:30AM. I'll talk with the doctors ahead of time, get everything situated, then lie there and let the machine go to work. Once I'm done, I'll get a hold of my step-dad and he'll pick me up when he has a chance once mom's done. If I'm feeling OK, I'll just take the People Mover back from Methodist to IU.

Thanks for your support! I'll let you know how it all went once I'm feeling up to writing. I'm sorry I've not done a better job of keeping you all up to date. It just gets hard when I feel extra crappy, plus being busy setting everything up, dealing with SSI ridiculousness and occasionally having something to do. I promise I'll try to do better. Thanks again for sticking with me. It helps more than you know.

-B

Sigh...

2010-10-27T02:40:00.000-04:00

I've been down the last while. I've not felt great, which is a big factor. There's a bit of a letdown after a good stretch of fun stuff (UFC in town, going out with friends, making it back up to ND, etc.), then getting back to just sitting here. I have a weird, nervous vibe about this radiosurgery treatment...happy to do something, unsure if it'll work, worried it'll do more harm than good, sad that I need it at all. Mom's starting her stupid shit again. I'm not surprised, it's past due. And, of course, she has to fuck with me right as I'm in this weird place with the radiation stuff. I'm just tired of everything...being sick, not able to do much, being broke, being stuck here, actually being tired...just everything.

There's very little that I like about my life. The couple things that I do like get all muddled in with everything else because I'm sick, so I can't enjoy them for long, if at all. I have a good time at the UFC press conference, then I almost pass out and need help getting back into a chair and then out of the building. I enjoy some food and almost choke on it. I have a great time going back to Notre Dame, then can't do much of anything for the next week and a half (so far). My little ones come over, but I have to go back to bed because I don't feel good. And on and on...

And now my Internet connection is in jeopardy again. If it were just a matter of money, then I'd understand. I don't expect my mom to pay for it, and I'm appreciative that she's taken care of it the last while. A little notice that it might be getting shut off would be nice, and more than just the day before. But that's a bit moot, because she might kill it out of spite. She's pissed at me for no good reason because she won't listen to me. So I don't know what's going on there. The kicker is that if she doesn't want me to have Internet service, then I can't have it, whether I come up with the money or not. You can only have one cable account per household, and it's in her name. I don't know what I'll do if I can't get online. My already pathetic social life will dry up almost completely. It'll take me just a couple days to run out of stuff to do. I don't know...I might just stay in bed 20 hours a day. That's about how I feel most of the time, anyway.

I hate having so little control over my life. I can't do this because I'm too woozy. I can't do that because I can't see. This costs money I don't have. That's too far away and I can't get a ride. And if it's not the wooziness or my eyes, then it's my sinuses or my lungs or headaches or a queasy stomach. I'm sick of feeling like shit all the time.

Why do I have to fight for everything??? I don't mind working for stuff, but why must I have to fight? I have to fight to stay conscious, to stay upright. I have to fight with mom over stupid shit because she's ridiculous. I have to fight with my computer because it messes up for no reason. I have to fight with myself not to cry. I have to fight with myself to cry. I have to fight to remember to do stuff. I have to fight to get SSI. I have to fight to get out of bed. I have to fight to get to sleep. I have to fight to stay focused. I'm tired of fighting, I just want to live.

If there are such things as karma and reincarnation, either I must have been a real bastard in a previous life, or I'm due for some good times. Hopefully it's the latter, and I'm ready now.

Sigh...
-B

P.S.
I'll get to the stuff I've been promising when I can. Please continue to be patient. Thanks :)

Grrrrr....

2010-10-25T03:09:00.000-04:00

I haven't felt up to writing much today, either. I was planning on going to the Pacers Fan Jam thing, but that didn't work out. It was a rather crappy day as far as being tired and woozy and just sick. I was up for a couple hours this afternoon, then napped until after 9PM. I've been up since, but mainly because I don't want to be in bed. It's just one of those days.

I do that radiation prep work in a few hours. I'm hoping to be able to shower beforehand. I may lie down for a little bit, too, but we'll see. I might just try to stay up so I can fall asleep during the scans. I'm not sure, but I could find out the exact timetable and plan for the actual treatment, too. They should know soon, anyway, and I'll be sure to relay the info.

I've got mixed feelings about it all. I'm happy to finally be doing something, especially after basically wasting a year dealing with the fuckers in Phoenix (administrative bitches...the actual medical staff was fine). I'm still not big on doing radiation, though, but that's the consensus for what to do next. My biggest issue is just the unknown. Will it work? Will it help? Will it make things worse? How long will results take? Will I feel any better? What if the damage already done is permanent? Will I really have to deal with this shit the rest of my life? I'd have those same questions regardless of the treatment, but this one just takes longer to answer them. I do like being proactive and attacking it, though.

We'll see how I feel once I'm home and all that, and I'll try to give more details about everything, plus talk about the other stuff that I've yet to be able to get to. Hopefully I'll feel better and will be in a bit of a better mood. I'm just sick of being sick and not being able to do even simple things that I want to do. Thanks for sticking with me and I'll do my best to keep you apprised of what's going on.

-B

Hopefully later today...

2010-10-24T04:01:00.000-04:00

I still have lots to update you on, but I still don't feel up to writing about it all right now. It's been more of a tired thing than a woozy thing lately. Blah...

The biggest news, and I really, really hope to get into it in more depth in a few hours after resting, is that I'll have radiosurgery (focused radiation over a few treatments--perhaps just one--instead of blanket radiation over a longer period of time) VERY soon. I go Monday to get a scan or two done, plus I'll have a mask fitted. Those will help to tell the machine where to zap me. I'm not sure how long after that's done that I'll actually go in for treatment, but it will be within the next couple weeks, and possibly later this week. I'm excited to get that going, but still a little worried that it won't work or that it might damage healthy tissue, but there's a risk with anything we'd try to get this damn thing smaller (and eventually completely out, hopefully). It's the best course of action at this stage, and something's gotta be done. We'll see... The plan is to give more details next time, but I wanted to at least mention it now in case I can't expand on everything before I go in Monday.

There's other stuff, too, that I want to talk about, like meeting a college friend for dinner and the UFC that just happened, so that's in the works, too.

And I'm crashing pretty good now, so I'm off to bed here after I wash up and brush my teeth. I know I've not been posting as much lately, but thanks for sticking with me and for reading. I'll get back on track here once I feel a little better.

-B

Well...

2010-10-23T03:17:00.001-04:00

I didn't feel so great today, so I didn't get to writing like I wanted to. C'est la vie, I guess.

Here's what you should look forward to:
Tuesday: Good news about radiosurgery (happening soon!)
Wednesday: A nice evening out with an ND friend who was in town
Thursday: Therapy session went OK and then family was over
Ongoing: Food stamp renewal ridiculousness and SSI stuff

UFC 121 is Saturday night. I'll be downtown, probably at Buffalo Wild Wings on Washington St. Let me know if you want to come hang out!

Go Irish! Beat Navy!
-B

I'll be back...

2010-10-21T23:50:00.000-04:00

I know I've not been terribly active the last while with posting. I've just been a bit extra busy, and then when I've gotten time to write, I've been soooo tired. Of course, more than a couple times I planned on just napping for a bit before getting up to post something, but those all turned into 8 hour or so naps. I have lots of news and good stuff to report, and I'm hoping to maybe get something up tonight ("Why doesn't he do it right now since he's typing this?"), but we'll see. The answer to my parenthetical question is that there's a lot to get to and I'm just not up to doing it all right now. Plus my eyes hurt. And I'm cooking something to eat. I'll get to it, don't worry :).

In the meantime, if there's ONE (or more, really, but especially the ONE) thing that you want me to write about or that you want me to change/add on here, what is it?

I'm around and I'll get you all updated soon...
-B ;)

A Fabulous weekend...GO IRISH!...

2010-10-18T20:34:00.000-04:00

I had an amazing weekend! It was a great time, and something that I really needed. I felt pretty good, for the most part, surely in large part from the rush of being back on campus with good company Saturday and from seeing some of my little ones on Sunday. Thanks so much to Mrs. ETHM and her dad for the great conversation and for their generosity for bringing me!

I got picked up and went to my friends' house on Friday night to make it easier to leave in the morning for ND. It was also nice to hang out, too. The pizza was good, as was the company. Despite the strong indifference by us guys, we were overruled and watched The Runaways after eating. It was alright. I wasn't super familiar with the story of the band and didn't realize that they were all so young. It was a crazy time. We all went to bed after the movie.

I slept well and was surprisingly refreshed to be up before 7AM, a time that I'm usually just lying down. Just over 4 hours of sleep did the trick, which isn't usually the case anymore. Being excited to get back to Notre Dame after so long surely helped give me some extra pep. It only took a few minutes to get ready and we headed out.

It was a nice, easy drive with very little traffic. Even when we got into South Bend, it wasn't too bad. We had a nice conversation, my friend, her dad, and I, on the way up. It was mostly political in subject matter, which isn't something I usually enjoy, but I liked it. Our views are similar on most of what was discussed, so there wasn't any arguing, really, but even when we disagreed, it was very pleasant and respectful. Especially at home, this isn't something I'm used to. It felt good to have a cordial, intelligent, and engaging conversation about potentially touchy topics. It was nice to mix in some ND talk from an older alum, too. It's hard to have an appreciation for how special a place Notre Dame is without having gone there and the shared experiences, even if 40 years apart, for a unique bond among Domers.

We made good time, a little under 3 hours, I think. We were able to park on campus, in the lot just nort of the Grotto, thanks to my friend's dad's connections. We stopped at the Grotto for minute, then made our way to the Basilica for a quick walk through. I'd almost forgotten how beautiful it is inside. Then we stopped at Sorin, my old dorm for a bit.

I looked for my named carved on a brick on the porch, but I couldn't find it. Someone probably carved over it. There are new porch swings now. They're a little smaller, but they still have the same view of God Quad that I miss. Even after being gone for 8 years, the bells chiming every 15 minutes still got a reaction out of me ;). We made our way to the Bookstore, which was, of course, packed. They picked up a couple trinkets and I just looked around a little. We stopped at the Visitor/Alumni Center nextdoor to pick up some maps. I still remembered where everything was, but there is so much new stuff that I needed a little help with that.

Next up was the new DeBartolo Performing Arts Center, but it was closed and we couldn't get inside. I was really looking forward to checking that out...next time, for sure. They'd just broken ground as I was finishing up school, and then they'd just had some of the foundation and framing up the last time I was there that next fall when I last made it up. We walked through some tailgators and made our way to the Joyce Center. We couldn't see the inside because the basketball team was practicing, but the renovations that we were able to see are very nice. We meandered through and got to the North Dome of the JACC to see if they had the tables set up for class reunions. I'm not sure if there'd be any reunions, but the tables were there, as were a few corporate booths. I got a few freebies. My friend and her dad left from there to go to a lecture at the Snite Museum of Art. I was interested in going, but wanted to use the time to walk around and see the new sights.

From the JACC, I got a quick look at some of the new athletic facilities. They open up the football practice fields for fans now, which was very cool. From there, I made it to the new Jordan Hall of Science. It's amazing. And huge. They had some chemistry exhibits in the main hallway with a movie special effects theme. There was break-away glass, fake blood, a cool touch screen computer and many others. A doctoral student and her husband did the fake blood, and they were from France. It was nice conversing with them in French for a bit.

I kept making my way north taking in the new buildings and general atmosphere. It was such a lovely day, perfect for walking around and for catching a football game. After making my rounds, I headed back to Sorin to meet a friend I hadn't seen since 2002. I got a little stuck by the crowd lining up to watch the team walk from the Basilica to the Stadium. Once I got back to the dorm, I went inside and checked out the first floor a bit. The TV lounge has been upgraded and is really nice. They have a note by the light switch asking people to turn everything off if you're the last one leaving. I got bitched at when I was there for doing stuff like that...lol I guess I was just ahead of my time.

While I waiting for my friend, I started to eat the rest of my lunch, then continued after she, her husband, and her parents arrived. It was nice to catch up with her in person and to meet her family. She's one of the couple people I've been in regular contact with since school, and it was cool to be able to look her in the eyes and not just read her words. We all had a nice chat, reminiscing a bit, and just enjoying such a beautiful day.

Then it was off to the Stadium for the game. I wanted to get there a little bit early so they could check my backpack. I like to watch the team warm up, too. I got there before my friend and her dad, but they made it in plenty of time before the kickoff. Our seats were good, in the southwest corner. We had a decent vantage point, but I had forgotten how hard the benches were and how close they were together. I wasn't really used to actually sitting in them, though, as students only sit at halftime. The folks sitting around us were pretty cool, for the most part, but a couple of ladies sitting directly in front of us must not have realized how little room there was. It wasn't too bad, but it took some maneuvering to get comfortable.

Overall, the game was good. Winning by 24 is never bad, but we were pretty sloppy in the first half despite the score. We lucked out with the turnovers. Most of the action happened on the other side of the field, though, so it was hard to see exactly what was going on at times. I can't remember being at a game when it was so unbalanced that way. And despite a few minutes of unexpected rain, it was still beautiful out.

The worst part of the game, and this is definitely nit picking, was the Western Michigan band. They kept playing the Rocky theme (at least 25 times) and they played almost every time the ND band did, and since WMU was closer to us, ND got drowned out. WMU still isn't as annoying as USC, though. I'm not sure I could have taken it had we been playing the Cheaters...err...Trojans.

After the Irish victory, we made our way across campus back to the van, stopping by LaFortune first. It's a bit different from when I was there. They'd renovated some restaurant areas right after I left, and now the lounges are upgraded, too, with flat screen TVs, etc. The first floor, at least, still has the same basic setup, though. They still have the Irish Impact poster that I'm in hanging just outside the Huddle Mart. I was a student manager working the game (hoisting the kicking net in the south end zone) on my 20th birthday (November 21, 1998), and I'm a blurry blob in the background.

I'm pointing at me, of course. That was almost 12 years ago...wow.

And we passed by the Administration Building (the Dome), too:

It was easy getting off of campus. There was traffic for awhile in South Bend on the way home, but it flowed nicely. It wasn't bad at all once we were on the outskirts of town. It was a nice drive down US 31 back to Indy. We had more good conversation, with my friend's dad making sure she kept an eye on our speed. It was cute/funny listening to those exchanges ;). We got some drive through fast food in Kokomo for dinner which did the trick. We made good time on the way back, too, getting to my friend's house around 9:30PM. We spent a few minutes catching up on the day's events with my friend's husband. He didn't go to the game because he had to work. She checked up on their toddler son whom she hadn't seen since morning and her hubby was kind enough to drive me home. We were all tired or else we may have hung out a little more.

I crashed not long after I got home. The plan was to sleep for a couple of hours, then watch the taped UFC 120 before looking over all that I'd missed on Facebook and Twitter (didn't want to spoil the results). I didn't get up until the next morning, and family came over shortly after I was awake for a cookout birthday party for my brother. It was nice to see everyone, especially my little ones. It's crazy how fast these kids are growing up, and how independent they're becoming. It was a good time catching up on this and that and just being around each other. I got a bit woozy towards the end of the visit, but it wasn't too bad. I didn't make it to zombie levels ;).

Once everyone was gone, I went back to my room, watched the UFC, then got caught up online. There was the Colts game, too. That all took awhile, and then the weekend started catching up with me a bit, so I went to bed. I was hoping to have this post up Saturday night, then when I didn't get up from my 'nap,' and then Sunday evening didn't work out, either, but that's how it goes. The Colts being the late game didn't help with that. I was only about 2/3 into the game as I was messing around online at the same time. We won, and I'll take it. The Colts have a bye next week, which is much needed with everyone being banged up.

I'll take it. I had an awesome weekend. There was good company, a nice homecoming (at ND), and time well spent with my family. All were long overdue. I'd forgotten about the smell of the grills on football Saturdays, and how the campus is so beautiful this time of year. Seeing how young the students looked made me feel so old, though. Did I look like that to the alumni when I was there? I guess I really hadn't been back in awhile. I'm so happy and thankful to have had the opportunity. I've wanted to visit much more often, but being sick and broke put a damper on all of that. Even if I can't get tickets, I'll try to see if I can at least ride up with friends again to be a part of the overall atmosphere again. I still have some places to check out that were closed this past weekend.

Thanks so very much to all who made it such a special and invigorating weekend for me! I haven't smiled that much for that long in such a great while. From the bottom, top, and all sides of my heart, thanks again!

...And our hearts forever, LOVE THEE NOTRE DAME!!!
-B :D

Doc appointment went well, ND tomorrow!...

2010-10-15T16:15:00.000-04:00

I saw one of my surgeons today. He's a really good guy, genuinely cares, and answers all of my questions, no matter how haphazard or long-winded they are, and without making me feel stupid for asking something that's maybe not terribly relevant. His assistant is super nice, too, and we got to talk for a few minutes. It's always good to feel listened to and cared for by doctors. A healthy detachment is fine, but that doesn't mean that they should be aloof. Knowing that they all care (and pretty much all of my regular docs are cool this way) really helps to put me at ease with my situation. I feel that they're doing all that they can to help me, and when they can't, they help me find others who can.

We went over the MRI from last week and the overall tumor situation. Everything is stable. If the tumors have grown, it's not by much. It's hard to be exactly precise because each scan has slightly different images. There's nothing drastically different. The chiari malformation was specifically looked at. All the fluids seem to be flowing nicely, but my cerebellum does definitely hang down a bit lower than normal (which is what a chiari malformation is). It's possible that this contributes to my troubled throat function, but it's more likely that the tumor affects the cranial nerve that controls that. There is a surgery to help correct the malformation, and my surgeon will confer with my neurologist about it, but, at this point, it looks like we'll just keep an eye on it. The surgery basically entails reshaping my skull a bit at the base to alleviate any pressure on the cerebellum. While it is a big deal, and has its risks, it maybe seems a bit scarier than it sounds because it involves my skull and brain and all that.

After the appointment, my mom drove me to pick up a pizza from Papa Murphy's for tonight. They make the pizza, then you take it home and actually bake it. Because of that, I was able to use my food stamps to buy it, which worked out for me. It feels good to contribute a little, especially when I'm being treated to the game. After getting the pizza (sausage and pepperoni is what they wanted...add mushrooms, and that's my usual order, so it works out), I got a few things at the grocery store. Being financially challenged (or, more bluntly, being all but broke), I'm planning on packing a lunch to take with me. I'll just make a couple turkey sandwiches and bring some chips and carrots to go with those. Next up was a little lunch from McDonald's dollar menu, to go, then home.

I still have a few things to get together before I get picked up tonight. I'll round up my meds, clothes, toiletries, and the food, and I'll shower here in a little while, too. Then I'll get picked up tonight. We'll eat, maybe watch a movie and/or play a couple games for a bit. We'll be heading out of here at 7AM, so we should get to campus by 11AM. Hopefully the traffic isn't too bad and we arrive a little earlier. I haven't been on campus since 2002, and there are lots of new buildings that I want to check out. I'll be working on a to do list and a map here shortly. I'm hoping to meet some friends who'll be up for the game, too. So far, I've arranged to see one. We'll be in front of Sorin, my old dorm, at 12:45PM just before the band plays at Bond Hall (which was usually my wake up call as a student as it's just behind the dorm). The plan is to get to the Stadium around 1:45PM for the 2:30PM start. Well, TV coverage starts at 2:30PM, the actual kickoff won't be until about 2:45PM or so.

I'm really excited to be going back. It's been way too long. It's just been tough being sick and broke and all that. I can't believe it's been 8 years. It'll be nice to reconnect a bit. It's a special place, surely to me, and it's been a big part of my life. I'm looking forward to it being a more active part, even if just for a few hours. If you're going to be on campus, let me know and we'll meet up!

GO IRISH!!!
-B

Just a couple lines...

2010-10-13T07:56:00.000-04:00

I wrote this on January 13, 2003, probably late at night. I just happened to be inspired, by what, I can't remember. The intention is to use the lines in a bigger piece, to add onto the few words that are already there, but they do alright standing alone.

Drown (tentative title)

I want to walk in your rain

And feel you surround me.

I want to drown in your love

And breathe in your beauty.

New layout...

2010-10-12T22:07:00.000-04:00

I tweaked the layout a bit. Hopefully it's an improvement. Let me know what you think. If you're not a fan of the new design, what would you rather see? If you do like it, how can I make it better, still? The goal was to give the text more horizontal room, plus to optimize the ads a bit. I also added a hit counter, and I'm apparently over 1000 views. I'm sure a couple hundred are mine, though.

If you have any other suggestions, whether it be about the layout, the color scheme, the content...whatever, let me know and I'll do my best to incorporate them. As much as this is about me expressing myself, it's about you receiving that expression. I'm willing to do just about anything that I can do to make your time reading this better.

Thanks,
-B