Doc, It Hurts When I Do This...

I've moved!

2019-08-22T13:46:00.001-04:00

Hello all! Please visit my new home at https://multiplesclerosis.net/author/kimd/ and check out my 300+ articles published there from 2013 to the present. And, of course, feel free to browse through blogs posted here between 2009 and 2013. Thank you for your continuing interest!

Best, Kim

My Latest Articles Published on Multiplesclerosis.net

2015-06-02T11:38:00.002-04:00

Read my essay about diagnosis denial and its consequences at:

http://multiplesclerosis.net/living-with-ms/diagnosis-denial-its-consequences-and-solutions/

... and my article about deciding when to disclose our MS on dating sites at: http://multiplesclerosis.net/blog/love-interrupted/

Latest Essays Published on Multiplesclerosis.net

2015-04-16T15:58:00.002-04:00

Read my latest essay titled THE BROCCOLI REDEMPTION about "going green" at: http://multiplesclerosis.net/living-with-ms/the-broccoli-redemption/

... and A TORTURED LIFE: OF ART AND MS about the difficulties of being a writer and having MS at: http://multiplesclerosis.net/living-with-ms/a-tortured-life-of-art-and-ms/

Latest Essays Published on Multiplesclerosis.net

2015-03-28T22:29:00.000-04:00

Read my latest essays titled:

Physical Therapy and the Promise of Improved Mobility, Strength and Balance at: http://multiplesclerosis.net/living-with-ms/physical-therapy-mobility-strength-and-balance/

Cause of What Ails Us at: http://multiplesclerosis.net/living-with-ms/cause-of-what-ails-us/

Self-Advocacy is the New Orange at: http://multiplesclerosis.net/living-with-ms/self-advocacy-is-the-new-orange-how-do-you-raise-ms-awareness/

See Not, Hear Not, Speak Not: Three Faces of Denial at: http://multiplesclerosis.net/living-with-ms/three-faces-of-denial/

Several New Essays

2015-01-31T21:17:00.002-05:00

Read my latest essay titled: "Re-upping with your Disease-Modifying Therapy... " at: http://multiplesclerosis.net/living-with-ms/reapplying-for-copay-assistance/

... and read another of my recent essays titled: "Tax Season 2014: Filing SSDI and Earned Income... " at: http://multiplesclerosis.net/living-with-ms/tax-season-2014-filing-ssdi-plus-earned-income-totally-screwed-2013/

... as well as this one from December 2014 titled: "Reflections in a Two-Way Mirror" at: http://multiplesclerosis.net/living-with-ms/reflections-two-way-mirror/

Oh, and Happy New Year!

Kim

Telling the Story of You

2014-11-03T23:34:00.002-05:00

Read my latest essay about what kinds of stories we tell when we tell the story of MS at: http://multiplesclerosis.net/living-with-ms/telling-story/

What's your Dance?

2014-08-27T11:39:00.002-04:00

Read my latest essay about celebrating our own unique walk at:http://multiplesclerosis.net/living-with-ms/whats-dance/

Purses: The Other Kind of Baggage

2014-07-03T11:12:00.001-04:00

Still lifting that bale and toting that barge? Read my latest essay about how MS has us draggin' our baggage: http://multiplesclerosis.net/living-with-ms/purses-kind-baggage/

Avoiding Future Shock: The Importance of Making Final Arrangements

2014-06-21T10:19:00.004-04:00

Read the essay at:

http://multiplesclerosis.net/living-with-ms/final-arrangements/

Flip-Flop, Finale: Coming Full Circle

2014-06-10T11:25:00.003-04:00

See the last installment of my essays about mom's final illness:

http://multiplesclerosis.net/living-with-ms/flip-flop-finale-coming-full-circle/

Flip-flop, Part IV: Disease and Its Takeaways

2014-06-10T11:23:00.001-04:00

See part 4 of this MSer's journey through mom's final illness:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-iv-disease-take-aways/

Flip-Flop, Part III: When an MS Patient becomes a Caregiver

2014-04-02T15:00:00.003-04:00

Read my latest essay about the journey through my mother's final illness at:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-3/

Flip-Flop: When an MS Patient Becomes a Caregiver

2014-03-14T23:48:00.003-04:00

Read my latest essays about being an MS patient turned caregiver at:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-ii-the-ms-patientcaregiver/

and:

http://multiplesclerosis.net/living-with-ms/me-patient-to-caregiver/

Fractured Fairy Tales: Dating Able-bodied and Disabled Men and Why I Haven't Yet Found My Prince

2014-01-09T13:28:00.000-05:00

Read my latest essay about dating with MS at: http://multiplesclerosis.net/living-with-ms/dating-with-ms/

New Year’s Resolutions and Affirmations

2013-12-29T19:33:00.001-05:00

Read my latest essay titled: "New Year’s Resolutions and Affirmations" at: http://multiplesclerosis.net/living-with-ms/new-years-resolutions-and-affirmations/

Reversal of Misfortune: A Cure Scenario

2013-12-21T01:11:00.003-05:00

What would we do if a cure for MS came along in the next few years? Read my thoughts at:

http://multiplesclerosis.net/living-with-ms/reversal-of-misfortune-a-cure-scenario/

Yuletide Musings

2013-12-21T01:08:00.002-05:00

Read my latest essay about how I celebrate Christmas now and how it's gone in the past at:

http://multiplesclerosis.net/living-with-ms/yuletide-musings/

MS and the Manly Man

2013-11-20T18:51:00.002-05:00

Read my latest essay about Men and MS at:

http://multiplesclerosis.net/living-with-ms/ms-and-the-manly-man/

A Portable History of MS

2013-10-27T22:16:00.002-04:00

Read my latest essay at: http://multiplesclerosis.net/living-with-ms/portable-history-ms/

Starting Tecfidera

2013-10-12T13:42:00.002-04:00

Read my latest essay titled: "Flame On: Starting Tecfidera and How I Avoided Becoming a Superhero."

http://multiplesclerosis.net/living-with-ms/flame-starting-tecfidera-avoided-becoming-superhero/comments/#comment-2533

2013-09-16T01:42:00.002-04:00

Read my latest essay on MultipleSclerosis.net titled: "Slow Burn: One Smoker's Battle with MS and Addiction."

http://multiplesclerosis.net/living-with-ms/slow-burn-one-smokers-battle-ms-addiction/

Latest Essays

2013-08-26T16:40:00.003-04:00

Read my latest essays on the MultipleSclerosis.net site:

"Ready for my Close-up: Disability and Popular Media, Part I" at:
http://multiplesclerosis.net/living-with-ms/ready-for-my-close-up-disability-and-pop-media-culture-part-i/

and, "Saying the Big No: Decision and the Informed Patient" at:
http://multiplesclerosis.net/living-with-ms/saying-the-big-no-decision-and-the-informed-patient/

A Change of Venue

2013-08-19T11:18:00.001-04:00

Hello all,

Just a note to let you know that I've recently gotten a writing gig at http://multiplesclerosis.net/

Because I'm kicking out a lot of writing over there, I probably won't be posting here as often, except to post a link to my newest essays on that site.

Hope you'll join me there!

Read my essay titled: "Meet the Monsters" at:
http://multiplesclerosis.net/living-with-ms/meet-the-monsters/

and:

Read my latest essay titled: "Saying the Big No: Decision and the Informed Patient" at:

http://multiplesclerosis.net/living-with-ms/saying-the-big-no-decision-and-the-informed-patient/comments/#comment-1415

Oh, and don't forget to check out MultipleSclerosis.net's Facebook page.

Thanks!

Kim

On Coping with MS and the Death of Vaudeville

2013-07-19T18:14:00.000-04:00

“All I ask is a chance to prove money can’t make me happy.” --Henny Youngman

It’s a great joke. It could have been written yesterday by an MS sufferer who is trying to live on Social Security Disability. Or it could have been an appeal by anyone who is part of the ninety-plus percent of this country, struggling to get by on the dwindling value of a paycheck, living in a house worth less than what is owed.

In fact, the joke is attributed to Henny Youngman, a Jewish comedian whose career bloomed during the early part of the 20^th century. We baby boomers were the last generation to see him and his peers on television, mostly as Johnny Carson’s guests during the 60s and 70s when they were elderly, long after their meteoric careers had flourished, first in radio and movies, then as some of the pioneers of early television. Folks such as Jack Benny, George Burns, Milton Berle, Groucho Marx. When they went, vaudeville died a second death.

Vaudevillian Jewish humor seems quaint now, couched in mockery of stereotypical hypochondriac mothers, chicken soup, Yiddish-speaking relatives who fractured the English language, and Rabbis who intoned the 600-plus Talmudic commandments. Quaint because European Jews were a large part of the immigrant population living in New York during WWI, prohibition, and the Great Depression, and their kids born on American soil grew up with one foot in the Old Ways and the other in American Protestant culture. Nowadays, Jews are fully assimilated. Jon Stewart, Adam Sandler, and Seth Rogen are comics by trade but their Jewishness isn’t implicit in their material, only in their bloodlines. Jon Stewart’s style seems to more closely resemble that of Bill Maher than of Woody Allen. If we dig deeper into their backgrounds we find further evidence of assimilation: Bill Maher is half Jewish on his mother’s side and Woody Allen has said that he does not consider his humor to be particularly Jewish.

All I ask is a chance to prove money can’t make me happy. Why do I love this joke in particular? Coping with MS and coping with the death of vaudeville seem to carry equal weight for me. My nostalgic lament for the loss of those particular vaudevillians may simply come from cherished memories of my impressionable childhood. Smart-assed kids like me loved a snappy comeback and these middle-aged Jewish men seemed to own a treasure trove of sarcastic witticisms. But it caused problems. This kind of humor is aggressive. Any girl who employs it is an aggressive female and therefore threatening. My sarcasm fell flat with men in particular, and didn’t go over well in general because I grew up in Toledo, not Brooklyn. Midwestern culture is not known for its sense of irony. During the pre-feminist era, a smart girl who was quick-witted and chose the most abrasive kind of humor was a triple threat. And I wasn’t doing it onstage; I wove it into conventional social exchanges where sarcasm is taboo.

All I ask is a chance to prove money can’t make me happy. It is a bit Jewish in structure and word choice, but not exclusively Jewish in tone or subject matter. Nor is it gauche mockery. I hadn’t heard this joke when I was a kid, but if I had, its meaning would have been lost on me. My fondness for this joke isn’t couched in nostalgia, it is resonant because of what I’m living now. Only a poor person could have written it. And put into its proper context, in the early 20^th century, in New York City, it could only have been written by a Jewish immigrant. Henny Youngman emigrated from England and worked in a print shop in Brooklyn, writing jokes for Milton Berle. Youngman was initially an orchestra musician and a prolific gag writer before Berle encouraged him to perform on radio. His ear for word choice and for the rhythms of language enabled him to write effective one-liners delivered like machine-gun fire, punctuating strings of jokes with songs played on his violin. Youngman and Jack Benny both used the violin in their early careers, a throwback to the European tradition of educating children in the arts. Though Youngman’s parents encouraged his musical aspirations, he didn’t find his voice in music, he found it in writing. Music was my original vocation as well until I found my own voice in writing and abandoned the music all together.

Yet, such a connection doesn’t explain my affinity for this joke. It’s still fresh, still relevant. It always will be. One can imagine a poor immigrant standing at a street corner in New York, seeing prosperity all around him and realizing it is attainable, much more so than it could have been in the Old Country. But he also hears the narratives of our Protestant culture, in particular: Money can’t buy happiness. He can't help noting the happiness attached to all that prosperity, so he makes the appeal: All I ask is a chance to prove money can’t make me happy.

It is the anthem of any immigrant group new to this country. It is our founding principle and the heart of our constitution. Life, liberty, and the pursuit of happiness. It is deeply patriotic. It could be part of the inscription on the Statue of Liberty:

Give us your tired, your poor, your huddled masses yearning for a chance to prove money can’t make them happy . . .

. . . along with the 98 percent who are already here, reaching out more desperately than ever for the American Dream. We will all do it together, we always have. This is why I love the joke, it has awakened my patriotism. I shall therefore petition to change the saying on the US one-cent piece from E pluribus unum to “the more, the merrier.”

I like it.

Pacing the Cage: Identity and MS

2013-06-02T21:53:00.004-04:00

I live in a suite of rooms in my mother’s house: a bedchamber with tall windows that let in the light, an office space with a computer and a bookcase, and a bathroom large enough to accommodate a chest of drawers. These rooms are perfectly aligned; I can crawl out of bed and walk straight into my office without opening a door, then push open a door to the bathroom without the slightest deviation from my trajectory. No instantaneous reaction to sensory events is necessary as there are no objects in my path. It is a fledgling robotics engineer’s ideal laboratory. Or the perfect layout for a primate cage at the zoo.

That is not to say that I feel like a prisoner in my mother’s home, quite the contrary. This layout is freeing, I can hobble about with a minimum of risk. I don’t need to use my cane inside the house, I can grab the back of a chair or press my palm against a door frame to steady myself. And when I feel motivated, I can dust and vacuum and scour out the bathtub. Those tasks take all day to complete, but the economy of space in my suite makes these activities manageable. They make me feel useful.

It is important to feel useful. My mother is 80 and suffers from macular degeneration. I drive her to her eye appointments, do a little grocery shopping, perform clean-up after she has cooked for us. I like to think she needs me because I like to feel needed. Seven months ago my husband insisted I leave his house, I had become an unnecessary burden. He didn’t need me, I needed him, and the guilt I felt had driven me to spend hours in front of the computer while he sought a more interesting life elsewhere. Things feel better now, my mother needs my company and my help. This arrangement feels better for both of us. I should say it feels better for the three of us. My husband visits regularly and we all get along quite well.

It would be easy to say that developing MS shrank my life both physically and psychologically. After all, I can no longer take impromptu walks around town or fantasize an expansive future full of accomplishments I can enthusiastically work towards now. The rules have changed. For example, what little exercise I can do does not make me stronger; the problem isn’t in my muscles and exercise does not repair nerve damage.

Retirement on a fixed Social Security income guarantees me a lifetime of poverty and medical debt, which considerably narrows my future plans. I have no wakeful dreams that are not defaced by the graffiti of my disease. When I watched the movie “Avatar,” I interpreted it as a cripple’s ultimate escape fantasy, the story of a paraplegic who permanently flees his broken body. Before I developed MS, I would have watched it like everybody else and applauded Sully’s superhero rescue of the Na’vi’s home from the jaws of military industrial exploitation. Whenever I go on a first date with a man, I overcompensate for my limp and the presence of a cane by standing up straighter than usual, and, with a superhuman (and physically risky) burst of initiative, I hobble so quickly through the restaurant to the exit after the meal is over that the poor guy has no chance to open the door for me. This seems to challenge the inspirational narratives within the MS community. I have MS, but MS doesn’t have me. I am not my disease.

Can I deny that MS has me by the ass, tighter than a shark’s jaws on a hunk of flesh? But, on the other hand, how much has MS really changed my inner landscape, my unique thoughts and motivations, my temperament and daily habits?

I would like to claim it has not. I think and behave as I always have with the addition of a couple of 75-pound iron anchors strapped to my body and mind. Having MS has nudged me farther along the chronological continuum. Having MS is like suddenly becoming elderly when you are still young. I am a creakier, more deeply wounded, less impulsive version of my former self. Despite having memory problems, mental fatigue and focusing issues, I have no symptomatic brain damage. Really, how different am I?

The fact is, I have always paced the cage. Always lived intensely in my head. Never ventured far from my rooms. Always built up self-imposed inertia until I reached the combustion point and then burst into a frenzy of productivity. Always and never. Such qualifications are false narratives, just as I have MS but MS doesn’t have me and I am not my disease are false narratives. I tell myself a great many things about who I am. It seems to soothe me, these declarations of selfhood. I’m convinced I’ll forget who I am if I don’t recite these narratives.

The problem with such recitatives is that they are static concepts. Life is not static, it changes, it decays and it dies. So, too, identity. The notion of perfection, for example, is a static, fixed concept and therefore of no use to a living thing. Any attempt to describe our identities is paradoxical. The moment we say who we are or state how things are, the thing said is no longer true.

Having MS can cause rapid, sudden changes, often unpredictably so. We push against these changes by insisting we have not changed. I have MS but MS doesn’t have me. I am not my disease. But the disease is indeed an inseparable part of who we are and MS does, in fact, have us, just like experiencing the death of a loved one changes us forever, just like breaking up a marriage obliterates everything we thought we knew about love and commitment. We are not the same afterwards, nor should we be. We become, for a time, members of a select group: the divorced wives club, the middle-aged people who have lost their first parent club, the patients-in-MS-purgatory club who have had one attack but still no diagnosis. The longer we live, the more club memberships we accumulate. As worthless as I might feel on any given day, I can soothe the sting of self-loathing by reviewing my memberships. It feels even better than showing off the Girl Scout badges on my green sash when I was in fifth grade. Things might change from day to day, but what has already happened is as eternally frozen as a broken watch.

Sometimes, when I’m pacing across my three rooms at five-thirty in the morning after a night of sleeplessness, running a narrative in my head of how useless my life is and that I really need to get on the stick and do something to save my pride and self-worth, something makes me stop. Sometimes it’s the sound of a bird singing as the sun starts to rise. Sometimes it’s the sound of our renter in the apartment above as she stirs from her sleep and gets ready for work.

The sounds of life waking and stirring. For a few moments, it’s enough.