Above, Cindy gets creative as she receives immunosuppressive drug infusion therapy for lupus.

My love of the visual arts extends as far back as I can remember. I have always loved creative activities. When I was young, I had a wood-burning set which I used to sear designs and pictures onto small pieces of wood. I can still recall the pungent smell of burning wood wafting through my childhood home. I took painting lessons when I was around ten and one of my paintings was selected to travel the world in some type of exhibit. As a native Floridian, naturally I painted a picture of an exotic bird. Come to think of it, I never saw that painting of a cockatoo again. Perhaps it is still traveling the world 50 years later! In Junior High School I learned to needlepoint in Home Economics class.

A few Christmases ago, one of my daughters gave me an adult coloring book. Honestly, every time I took it out and started to color in it, I felt guilty; as if I should be doing something more “worthwhile” with my time. Then I started coloring when I was on long conference calls which required more listening than speaking (thank heavens those on the other end of the line could not see me!). This simple activity proved to be a great stress reliever. When I spent some time in the hospital following back surgery and recovering from surgical complications, as soon as I could sit up in a chair, I had my coloring pencils and my coloring book out. I colored almost all day. Coloring feels almost meditative to me. Time and stress both evaporate. I can’t tell you the number of hospital employees who came into my room during my stay, looked at my work, and then said they might start to color again.

If you follow me on Facebook, you know that my life has recently been challenge-filled. My husband has been diagnosed with cancer and other immediate family members are facing their own difficult times. Needless to say, all of this stress has made it difficult to keep my lupus under control. Every month, I spend two long days back-to-back in the infusion center receiving drugs in an attempt to quiet this stubborn disease. During these infusions, I pass the time by coloring. Most recently I have taken to lugging along my watercolor paints and painting in my coloring book. I’ve threatened to bring my easel, canvases, and acrylic paints and paint “for real,” but that hasn’t proven to be very easy to manage. So, I sit with my ear pods in, listening to a book as I color or paint. It is amazing how much this helps me get through what otherwise might be an ordeal.

Several years ago, I began to pursue painting in earnest. I took watercolor and acrylic painting instruction and discovered that I could do more than paint images of exotic birds. But my “real” painting as an artist has taken a bit of a back seat lately due to the stressors in my life. Now, I plan to remedy that very soon and turn back to my true passion of painting. My creative spirit is unsinkable and has been sitting quietly in the background. She’s settled for coloring books long enough! Now, she’s now ready to come out and play again in full force. What might be created on that big artist’s canvas sitting untouched in the corner of my office? Coloring in the lines is good for the meditative, quiet times we all need to cope with stress, but there is truly nothing like putting the first brushstroke of color onto a pure white canvas. Who knows? If I start feeling very brave, I might even get active on the Instagram account I created (cindyconeyart) before life became so stressful and invite you to you follow along on my journey back to painting!

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Image by Denis Doukhan from Pixabay

I love the smell of rain. It has a distinct smell—clean and crisp and unlike anything else. On my walk recently, I got a whiff of the smell of rain as dark clouds loomed in the distance. Now, mind you, I was out walking without an umbrella or raincoat, so dark and looming clouds hold some significance here. Not being a great judge of distance (or age, for that matter), I misjudged just how far off the approaching storm was and walked right into the rain shower as I made my way toward home. The good news is that it was 90 degrees when I meandered into the rain and there was no lightning. All good! In that moment, I decided to simply enjoy the cool shower from above. I was close to home and could change my soaking clothes shortly.

What struck me was the power of my perspective. I could choose (and we almost always have a choice) to dread getting wet and think of all the negative consequences it might hold, or I could walk on and enjoy the rain. I chose the latter. And you know what? It was actually pretty nice! The rain cooled my sweating body, the brown grass and flowers I passed were perking up, and the air went from hot and muggy to cool. It wasn’t a hard rain, so it was more like being under one of those fancy showerheads that imitates a rain shower. I allowed myself to, literally and figuratively, soak in the moment, stop fretting about getting wet, and smile. Yep, I was the woman on the sidewalk you might have passed walking in the rain with the big smile on her face. (No worries there; I’ve been thought of as a bit crazy in the past, so long ago stopped worrying about what others think!)

But back to my perspective and my power to choose. I’ve decided I’m going to employ this now-remembered trick in some other areas of my life. When I take my medicine in the morning, instead of thinking of all the negative side effects, I’m going to focus on the healing benefits it is delivering to my body. When I feel overwhelmed with medical decisions, I’m going to stop and refocus a minute and think about how lucky I am to have all of these choices. Now, no guarantees I won’t slip back (I am human after all) and occasionally notice that perhaps I’m soaking wet, but I figure it is worth a try.

So, in looking back on my walk today, I can honestly say I was reminded of a great deal simply by being caught in a rainstorm unawares. First and foremost, I do love the smell of rain! I also now remember that clothes dry, my perspective can change a negative experience to a positive one, and that my neighbors might consider me crazy—but hey, that’s half the fun of living!

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It’s the holiday season and everywhere we look we see pictures of smiling faces. As the Christmas carol goes, “It’s the hap-happiest season of all.” Yet, I know this isn’t true for everyone; in fact, it can be an extremely difficult time of the year for many. For those who have lost loved ones, those suffering through divorce, or a myriad of other challenges, this time of the year can bring great sadness and despair.

Having been diagnosed with lupus over three decades ago, I have known this sadness. For patients, coming to terms with the loss of our pre-illness life can leave one feeling sad, depressed and hopeless. This is particularly true at the holidays when expectations can run high. Illness can impact our finances, relationships, careers, energy levels, weight and more. Over the past few weeks, I’ve read numerous online posts from people who have been affected in these ways by illness. As patients, how can we emotionally cope with what sometimes seem to be insurmountable challenges? Reaching out for support from friends, family, or an organized support group is always a good idea. Yet taking just a single action, no matter how small, can alleviate some of our feelings of powerlessness, loneliness and despair.

This past year has been a rough one for me health-wise. Beginning with a trip to the emergency room and hospital stay last year on Christmas day, I have since dealt with a host of sometimes overwhelming health challenges that are still hanging around a full year later. I’ve had some days that have been tough to get through, yet I refused to quit. In the many years I’ve lived with lupus, I’ve learned from experience (unfortunately) and other patients that a single action on my part can shift my feelings and perspective.

Around the holidays each year, I commit to posting “Today’s Smile” on Facebook (for the whole story click here). This involves finding one thing, no matter how insignificant it may seem, that brings a smile to my face each day and then sharing it with others. This simple action keeps me moving in a positive direction and, hopefully, encourages others. This exercise did not begin because I was sick or feeling blue, it began because I refused to get caught up in the craziness of the holiday season and be angry at the person who cut me off in a parking lot. Yet, this year while suffering through numerous health challenges, it has served me well. Even on the days when I might not feel like smiling, I’m forced to look for something so that I can post it. I cannot tell you how much finding one small thing to smile about can shift my mood.

For those of you going through challenging times this holiday season, my heart goes out to you. I offer the following as a gift and one small step out of your darkness. Think of one single positive action can you take today. Perhaps you might write to a friend, call a family member, or make a list of the things that you are grateful for in spite of having a chronic illness. Or perhaps you’ll join me and write down your own smile or share it with me on Facebook! This small act can be a stepping stone out of the darkness and into the light.

For today, I’m sending you a great big virtual hug and hope it brings a smile to your face.

Photo Credit: Coffee-Cinnamon Smile image by Firdaves used under CC0 1.0 Universal

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I’m a big fan of the television sitcom I Love Lucy. Yes, it is old. Yes, it is in black and white, but who cares? The situations two of the main characters, Lucy and Ethel, find themselves in just make me giggle—probably because I can relate! I, too, have had my share of embarrassing life moments and I usually find them hysterical.

I vividly remember attending modeling school around the age of 15 (of course my mother, and probably many mothers for that matter, would send her five-foot-ten-inch, thin, teenaged daughter to modeling classes). Unfortunately, the next great Twiggy or Kate Moss I was not! One day, as a group of us were modeling the latest fashions (think late 1960’s era hot pants and go-go boots…for those of you who are young, pray this look never comes back!), each model was to walk across the stage, make a 360 degree turn, and return from the direction she had come. With the audience staring and the announcer describing my outfit, I walked across the stage, made a lovely 180-degree turn, and walked off the wrong side of the stage straight into a closet! Now, confronted with only two choices (okay, maybe three if you consider dying of embarrassment a choice), I had to decide whether I would stay in the closet and forget the rest of my appearances, or walk back across the stage to the laughter of an auditorium full of people. I chose the latter. Trust me on this, there is no sneaking across a stage unnoticed when hundreds of people are in the audience. So modeling was not my calling, but I still laugh hysterically when I think of this today.

I could go on (and on) with embarrassing moments taken from real life. And if I run out, I’m sure my family would be happy to toss in a few, because don’t think that you can live with me for years and years and not get caught up in an embarrassing moment yourself. No, my family has not been spared. But, here’s the interesting thing, I have no problem laughing at myself. Honestly, I usually get tickled in these situations and start to giggle and make the situation worse. You see, I learned a long time ago (probably sitting in that closet stage left) that I cannot take life too seriously. I love to laugh and smile, even at my own expense… thank goodness.

I find that I’m least happy when I get all caught up in perfectionism. My controlling, serious perfectionist mode is just not nearly as much fun as my I Love Lucy mode. I’m much happier laughing at the silly, crazy things that make up a life. I’ve learned that to get through the tough stuff doesn’t necessarily mean I need to get tougher. Sometimes what works best is to take myself less seriously and look for the humor in the situation. When things don’t go as planned and I feel stressed, I remind myself that—even if I’m not laughing in the moment—I will laugh about the situation later.

My friends and family know how I love to share tales of my own life’s hilarious moments. I’m even happy to share some of my husband’s, although he doesn’t always find this quite as amusing as I do when the laughter is at his expense. He’s more easily embarrassed than I am, so I try to honor this (although it is not always easy when I’m s sitting there giggling). So, here’s to taking myself lightly and continuing to laugh at life’s (or at least my life’s) idiosyncrasies, imperfections, and sitcom-worthy moments.

Ethel and Lucy, I’m sorry we weren’t friends; my husband could probably use some sage advice from Ricky and Fred, or at least some consolation.

Photo Credit: Lucy & Desi image by Skeeze used under CC0 1.0 Universal

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I’m overly conscientious. Some might think this is a good trait, particularly when they happen to be on the receiving end of my hyper-conscientiousness. I will always arrive on time (or early and sit in my car and wait until the appointed time), deliver whatever it is I promised you, return your calls, and you can count on me always to do what I tell you I’m going to do. Sounds great, right?

Here’s the flip side: If I’m not careful, Miss Conscientious’s evil stepsisters—Inflexibility and Guilt— sneak into the picture. I do try to remain relatively flexible in life and not hold others to my own high standards, but I struggle with guilt. Over the years, I’ve learned that my lupus has a bit of a twisted sense of humor. First, she lets me commit to things, knowing just how conscientious I am. Then, when the day or appointed time comes to follow through on whatever is planned, she steps in with her wicked little laugh and says, “Not so fast, Miss Cindy. I think today will be a pajamas-all-day day.” And out the window my plans fly, hitting Guilt as she makes her way in when I have to call people and tell them that I won’t be able to do what I promised.

I realize this isn’t rational. In my head, I know that people understand when I am sick and can’t show up, just as I understand when the same thing happens to them. But I don’t like it. No matter how much I try to sugarcoat it, letting other people down just feels crummy to me. This unpredictability is one of the things that make living with chronic illness so challenging. And it is compounded by the fact that the disease is invisible, because often on the outside we look fine and like we should be able to do what we promised.

This presents a huge dilemma. Do I regret invitations and not accept responsibilities because I might not feel up to them when the day arrives, or do I accept and then cancel if I don’t feel well? I am sure there are millions of others struggling with this decision as I write. It is especially important because if we start to regret everything, we can become lonely and negative things start to snowball. That’s when I begin to feel that lupus has Cindy, not that Cindy has lupus. And, for me, I refuse to let this happen. I refuse to let lupus run (or ruin!) my life.

So, here’s what I’ve decided: I plan to keep being actively engaged in life, especially with people who know and love me. I’ll make the plans, I’ll accept the responsibilities and will do my very best to do what I promise. But, and this is a big but, my health does come first. If a pajamas-all-day day happens to hit on a day I have plans, I might have to reschedule. And you know what I’ve learned? Life does go on without me (hard lesson to my conscientious little soul) and it is a whole lot more fun being with me when I feel well. I’m leaving Guilt behind and bringing Smile and Humor to the party!

Photo Credit: Park bench image by Pepperminting used under CC by 2.0

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Note to readers– I wrote this post in November of 2014. It has been sitting in a file labeled “Blogs Ready to Post” for almost 4 years. I have to admit that I never published it because, like so many others, I was a bit ashamed of acknowledging that I once suffered from depression. I kept it well hidden behind a smile on my face. In light of the recent deaths from suicide of Kate Spade and Anthony Bourdain, the time seems right to post it. My hope is that, one day soon, depression and other illnesses will be thought of and talked about the same way cancer, heart disease and other illnesses are shared, because only then will people who are suffering get the help they need! Cindy

I live a wonderful life; not always an easy one, yet one where I find joy and HappYness. When I look back over the years (yes, there are many!), I remember the happy times—the laughter, the adventures, my family fun and all of the good times we’ve shared. But, if I look very closely, there is also a little island of depression that I once visited on my journey. I’m thankful that I had a round trip ticket and, with love, support and treatment returned from the darkness. I’ve been fortunate as depression has not been a recurring battle I’ve had to fight. The stigma of mental illness runs deep in our society and, unfortunately, often makes it difficult for those suffering to get the help and understanding that they so desperately need. I’m sharing my personal story now because I know that many, many people with chronic illnesses (and many without) are suffering silently with depression. It is a dark and lonely place and my heart goes out to them.

Living day in and day out with chronic illness is not easy. As the limitations of the disease mount and life as we know it slips away, patients like me who are already struggling to cope with one illness may find ourselves facing yet another as we tumble down the slippery slope leading to depression. Not to mention the medications used to treat the disease, which can have a whole set of side effects including depression itself. And here’s the part that can get doubly challenging: The illness doesn’t take a little vacation when we need to deal with the normal challenges of life. No, unfortunately, people living with chronic illness are not exempt from divorce, infertility, financial stress, aging parents and all of the other difficulties that people encounter. So, you can see that life can get a bit overwhelming if we are not very, very careful. My one visit to the dark little island of depression was enough for me to realize that I never wanted to return. I missed my zest for living, my spunk, my smile and my quirky ways. They seemed to be sleeping under a heavy blanket, waiting for me to wake them up and reclaim them. And oh, did I miss them! What those who are fortunate enough to live life without a chronic illness don’t realize about those of us who do is that we don’t want things to be the way they are. I can tell you that I want to be healthy and happy more than anything in the world. I like myself better when I’m healthy and happy and have the energy to enjoy my days.

I can also tell you that we often turn to those closest to us to make us happy. I remember looking at my husband when I was depressed and desperately wanting him to make me happy; to lift the depression and give me back my HappYness. Unfortunately, I had to learn that it doesn’t work like that. He had not hidden my HappYness away. I had to find my own joy, my own HappYness and my own way off the island of depression. Others might support me in my recovery (and would have at the time if I had told them), but ultimately it was my responsibility to reach out, ask for help, and take the treatment steps necessary to reclaim my joy and live my best life.

Thankfully, my encounter with depression was brief. As with many parts of learning to live with chronic illness it goes into the bank of life experiences from which I’ve learned a great deal. For me, life had more sparkle and joy after my bout of depression. It was like coming out of a dark movie theater and immediately reaching for your sunglasses because you realize just how bright the sun is. Today, I know that when things get tough for me and lupus limits the things in life that I enjoy, I must focus on the things in my life that remain… those things that warm my heart and make me smile (new shoes anyone?). I know that depression lurks at the edge of chronic illness and, if I’m not careful, will suck me in. Thank goodness, over the years I’ve learned to recognize this and take steps to prevent it. Today, my little unsinkable spirit simply refuses to play in the darkness!

My wish is that each and every person suffering with depression will speak up and seek out the help and support they need to recapture their joy in living and see the sparkle in life.

Photo Credit: Island image by JPLENIO used under CC by 2.0

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Okay, I’ll admit it; I obviously like a plan. Since my lupus diagnosis several decades ago, I have lovingly referred to my “new normal” (although not too new to me now!) as my Plan B life. Plan A did not include a chronic illness and Plan B does. I never thought too much about my planning until recently, when, twice in one week at the end of doctors’ appointments, each doctor looked at me and said, “Oh, you want a plan?” I think a plan is my feeble attempt to control health issues that otherwise sometimes feel that they are spinning wildly out of control. And let me be clear, I KNOW that I have very little, if any, control over the course of an illness or recovery. Still, a plan gives me assurance that if one thing goes wrong, or doesn’t turn out or work the way that I expect it to, there is something else beyond that to try. That “something else” out in the future is what keeps my hope alive. It keeps me from getting down-hearted or depressed when the first attempt to treat me doesn’t work or the test results show something that the doctor and I did not expect.

I don’t think doctors always understand fully the importance of reassurance and hope (aka: a plan) in helping to keep the patient’s spirit in the game. I need to believe that I will feel better and the doctor is going to stick by me until we come to some type of resolution of an issue that I’m currently having. For the past six months since my back surgery, I have been dealing with the results of a rare medical mistake that has left me in uncharted waters medically. The surgery itself was successful and the two level fusion in my back is healing beautifully (thanks again for all the good thoughts and prayers). But the tiny, unseen mistake that was made during surgery has caused many challenges for which my husband, my medical team and I were totally unprepared. I try very hard not to focus on this, but there are times when new issues pop up and must be dealt with. The two doctor’s visits where I asked for a plan were two such times. Yes, in this new, uncharted territory, I want a map….a plan! I want my doctor’s to relieve some of the worry that my husband and I deal with on sleepless nights and say something like, “I got this Cindy.” That’s the feeling a plan gives me.

My husband (he’s wonderfully supportive and I’m incredibly grateful) and I left both recent doctors’ appointments with “a plan.” We know what the next tests will be, we know what to expect if results are positive and what to expect if tests are negative. We have follow-up appointments and a sense that all will be okay. I sleep better at night knowing this. I know I cannot control the results of the tests and I might not like them, but I know that there is a next step. I also know that tests can show totally unexpected results and I’m confident my medical team will help me deal with that, too, should it happen. I feel that once I have a plan like this, then I’m better able to operate with flexibility within it. When I prepare to give a speech, I create my presentation, study it a few times, then show up without notes and am able to be completely spontaneous and have a good time. Same with vacations; let me get the rooms and travel in place, then we can do whatever we want to fill the days. I’m not ever looking for a tight, confining plan, just a basic sense of security on the outer edges of my life that allows me to live fully within my life.

So, I plan (pun intended) to keep making the most of my Plan B life and to keep looking for a healthcare team who understands me enough to give me a plan that offers the hope and reassurance that things will be okay.

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This is a cautionary tale about rare medical complications. As many people who follow my blog posts know, I had spinal surgery in mid-December. After undergoing many, many procedures including prior surgery, acupuncture, chiropractic, massage, yoga and every other therapeutic modality you can think of, it was the consensus of my doctors that the only remaining solution to address my chronic pain was to fuse two lumbar discs at L4-5 and L5-S1. I had avoided this for over 7 years while trying everything else, but the hope of regaining my former quality of life finally moved me to opt for surgery.

Unfortunately, my surgery was followed by an unexpected complication considered “rare” (according to the available medical literature I was able to find). It’s a reality that surgical complications and drug side effects sometimes occur. Still, it concerns me that, as patients, we do not always have the information we need to recognize and report these adverse events. Interestingly, patient-reported outcomes are now, thankfully, becoming part of numerous drug trials, yet many patients like me don’t know where to report their own experience.

This presents a dilemma for me and all patients because it means that, unless the medical care provider reports the information in a way that it will be aggregated and made widely available to both doctors and patients, our literal pain and suffering may not be counted. These unreported events result in information that may under represent the true risks. How is a patient and, for that matter, a doctor, to know the possible risks and what to watch out for—especially in cases of rare complications—if that complication has not been previously reported with any accuracy in the medical literature? If it goes unreported, it goes unpublished.

But back to my operation. It was decided by my spine surgeon that I was a good candidate for an anterior (front of body) approach to the two-level fusion (ALF). If you follow golf, Tiger Woods had the same procedure to fuse one level of his spine. Going in from the front requires a vascular surgeon to make an incision in the stomach, move all of the organs out of the way, and basically expose the spine for the spine surgeon to replace the discs. During the operation, if the spine surgeon feels the screws won’t hold the new discs in place on their own because of soft bones, the patient is flipped over and additional implementation is added to secure the fusion. I understood all of this going in and was delighted to wake up in recovery to find that I had only needed the initial anterior surgery. This from-the-front approach is preferred since the spinal muscles aren’t cut, resulting in less pain and a quicker recovery for the patient. Because I’d had a prior neck surgery in which those spinal muscles had been cut, I was onboard with this conservative approach!

Following surgery, I was thrilled to be up and wandering the halls of the hospital the very next day and home and walking around the block in less than a week taking only Tylenol for pain. I considered the surgery a huge success until Christmas Day, eleven days post-surgery. I was suddenly racked with excruciating pain under my ribs and in my back and diaphragm. The pain was accompanied by vomiting that occurred when I tried to drink something. My husband rushed me to the emergency department at a nearby hospital (which is also a regional trauma center) and I was immediately given pain medication and triaged care. The scans and tests the hospital ran revealed a very large accumulation of fluid in the retroperitoneal area of my body. My organs were being crushed by this fluid and that was the cause of my pain.

After being re-admitted to the hospital, the trauma team determined that a drain needed to be inserted into my abdomen and I was ultimately relieved of 750ccs of fluid (as my family pointed out, this is the same amount as a bottle of wine!). The following day, while waiting for the results of the fluid analysis, the drain was emptied frequently and the fluid measured by the nursing staff. For the following four days I was in the hospital, 1000ccs/day of fluid was emptied from this drain while teams of doctors worked to reveal the source. I was allowed to go home for New Year’s weekend and empty the drain myself, with the promise that I would be back in the surgeon’s office at 7:30 a.m. on January 2nd.

I continued to drain 1000ccs/day of fluid and so it was that I found myself in the surgeon’s office being told that the drain needed to come out and something else must be done. Because I am immune suppressed due to the medications I take to control my lupus, the drain itself could be a source of infection (and an infection I did not need!). It was determined this was lymph fluid I was producing and that most likely a microscopic lymph channel (one of the tubes that connect our lymph nodes) had not been moved out of the way before the spine surgery. In other words, a tube had accidentally been cut. This complication and the fluid accumulation that results (lymphocele) is what is identified as “rare” following the type of surgery I had.

As a patient advocate, I speak frequently to patients and medical professionals about lupus and other diseases. Part of my advocacy work includes raising awareness in order to prevent the preventable and educating patients. Patients need access to accurate information in order to make informed decisions about their own treatment and care. Had I known more about the possibility of surgical error and post-surgical complications and symptoms, I might have been better prepared to deal with the aftermath; I might have gone to the hospital sooner and suffered less post-surgery. Yet I believe my experience was not uncommon.

My saga has a relatively happy ending. I had a second surgery called fenestration to reroute the fluid that was collecting in my back to flow into my abdominal cavity where my body can learn to absorb it. I am two months post-op from that second surgery. I still have lymphedema in one of my legs and wear compression hose, take a diuretic, and lie with my feet elevated as often as possible. I have been told this might take a year to resolve. It is now an inconvenience and nothing more. As for the spinal fusion? It was a huge success and I have very little of the original pain. My quality of life is once again where I want it to be and recently included a flight from Tampa to San Diego with very little pain. That would not have been the case before the fusion.

I was fortunate this time because I recovered; I’m okay. I know I can’t single-handedly prevent other patients from going through an experience similar to mine, but I do hope that in sharing my story with others I can make a small difference. Mistakes do happen; complications arise. Yet in raising awareness by sharing our patient experiences, we tilt the odds of a favorable outcome in our direction because knowledge really is power. I would welcome a new era of informative public service announcements and education directed at teaching the general public (because everyone’s a patient at some point) how to report medical complications. Only then can a truer picture of medical errors, complications, and side effects be developed to provide patient consumers the information they need to make informed decisions.

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“Of all the virtues we can learn, no trait is more useful, more essential for survival, and more likely to improve the quality of life than the ability to transform adversity into an enjoyable challenge.” 

Mihaly Csikszentmihalyi, Psychologist and author of Flow: The Psychology of Happiness

I first read the above quote in a little book, insBEARations: Warm Words of Encouragement, by Ron Winnegrad. Along with a teddy bear and body lotion, a truly wonderful and caring friend delivered this adorable book to my doorstep the day before my recent back surgery. As I unwrapped her present, my friend’s generous spirit and thoughtful gift brought tears to my eyes. I was deeply touched by this unexpected act of kindness.

I’ve shared on my blog and Facebook that the past month has been incredibly challenging for me as I’ve fought to overcome surgeries, hospitalizations and trips to the emergency room. What I initially believed would be a relatively short recovery from back surgery has been mired by complications, leaving me and those who love me reeling and stressed. I’m honestly not sure if I will ever be able to view this period of adversity as an enjoyable challenge, as the Csikszentmihalyi quote suggests, but I am able to look at this period of time and see that my experience has had positive aspects.

Sometimes it’s just so hard to know what to do when a friend or family member is facing a serious challenge. In the past few months, as a patient and on the receiving end of kindness, I’ve realized there are three very effective ways to offer help to someone who is struggling.

1) Be Specific

Like so many people, I’m an incredibly independent person who finds it difficult to ask others for help. When friends and family generously make the offer of “Call if you need me” or “Let me know if there is anything I can do for you,” I am very unlikely to call or ask for help. Yet, if someone says, “I’m heading to the grocery store; what do you need me to pick up for you,” I’m likely to tell them what I need because I don’t feel that I’m imposing on them. I had a neighbor who, after one of my previous surgeries, sent me a text which read, “I’m at the grocery store and the watermelon looks great, may I bring you some?” Of the many offers I received, this was the only one I accepted because, again, I did not feel that I was imposing on the person. Instead of asking friends in the future, “May I bring you dinner,” I plan to say that “I’m picking up dinner for you” and ask which night works best. It’s a subtle difference but an important one to me because I don’t like to inconvenience other people.

 2) Short Visits

I’m not one who likes a lot of visitors when I’m in the hospital. Honestly, there aren’t many people I’d want to see me with my unwashed hair, hospital gown and IVs. I prefer visits once I’m home and feeling stronger and more rested. The caveat is that I want these visits, whether at home or in the hospital to be short because I may not have the energy to “entertain” my guests.

3) Unexpected words and tokens of affection

The gift that was left on my doorstep the day before my surgery meant so much to me because it was completely unexpected. Another friend made a very brief hospital visit to bring me a pair of fuzzy slippers that said, “Happy is the new pretty.” These two gifts and the many cards and flowers I received let me know that other people were thinking about me. They made me smile and eased the burden of the challenges I was facing. Let me be clear, it was not about the specific gift that I received; it was about the caring thoughts behind the gifts. I found the comments and words of encouragement left on my Facebook timeline and email messages with words of support to be extremely comforting; these buoyed my spirit when I would awaken at 4 a.m. in the hospital, unable to fall back to sleep. I truly believe that all of those thoughts and prayers pulled me through this experience.

So, the next time I have a friend or loved one who is facing a challenging time, I’m hoping I can make his or her journey just a little easier by recalling the lessons I’ve learned from those who have loved and supported me on my own healing journey. Hugs to all who did this for me.

Photo Credit: Image of woman with cup by Silviarita used under CC by 2.0

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This morning I went for a walk around my neighborhood. In my younger and pre-lupus days, I was a runner. Post-lupus diagnosis, I became a walker. One of the things in life that makes me happy is a morning walk. I enjoy being outdoors, seeing the beauty that nature has to offer and also getting in a bit of exercise.

But this morning’s walk was different. It wasn’t fast and it wasn’t far, but it felt like I had won the lottery. Why? Because for the past four weeks I’ve either been in the hospital or recovering indoors. First I had back surgery, then I experienced complications and spent five days in the hospital followed by another surgery. I have missed my walks.

During my hospital stay, I would stand by the window and watch the sunrise (because we all know you get no sleep in the hospital!) and wander down the hallway to another window that had a view of Tampa Bay. I simply wanted to be outside and resume my normal daily activities. I wanted to wake up and eat the granola that I like, I wanted to feel the sunshine on my face, and I wanted the freedom to come and go as I wished.

Over the years, I’ve read all of the books on simplicity and happiness and the importance of appreciating the little things in life. I’ve talked about this in speeches I’ve given and I’ve truly worked to appreciate the small things in my own life. Yet, this morning on my short walk, I was struck by how deeply happy and appreciative I felt as my body propelled me forward along the sidewalk and the sun shone on my face. This was no regular walk; my feelings went beyond enjoyment to joyful gratitude.

Throughout this healing journey, the kindness and generosity of spirit others have shown me has brought literal tears of happiness to my eyes. This entire experience has deepened my belief in the ability of the small things in life to make me extraordinarily happy. Small gestures and kind words from loved ones buoyed my spirit and got me through this rough patch.

As much as I hate to admit this, I also believe that growing older has deepened my appreciation for the little things in life. For so many people, the energy of our younger years is spent striving. Yet, when I look around at older people, so many of them are content, glad to be alive and living a simple life that brings them happiness. Once life slows you down a bit, it seems there is more time and space to fully appreciate the little things and put everything else in perspective.

I certainly would never want to repeat the last four weeks of my life. It has been incredibly stressful, not only for me, but also for those who love me. But I can tell you that going through challenging and stressful times certainly makes for a deeper appreciation of the little things that make me smile…and today that smile is wide!

Here’s to good health and all the little things that make you smile in 2018.

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