'What Does Not Kill Me Makes Me Stronger, But I Reserve the Right to Resent It!' -- Cindy Wells Tells Her Story

THRIVEnet Story of the Month - May 1997

My story differs from many survivors. Some of the ordeal I've been through I still deal with on a daily basis. I have a variation of Systemic Lupus which is specifically manifested in the central nervous system, making it similar to Multiple Sclerosis. (I was diagnosed with MS first and some doctors still wonder.) The fatigue and exhaustion I deal with everyday disables me to a large extent, yet my triumph has been to develop a rich, full and rewarding life from within those confines.

At least now I have the use of my mind again. I had all the earmarks of genius intelligence since very early on. I knew what a polygon was and could point them out at age 1 and began reading at 2 1/2. At age 8 I tested at an IQ of 156. By 14 I had gotten almost of the way through 3rd year algebra. Then I was struck down with the illness. Slowly all of the academic talents I had cherished so much began to disappear. Math was the first to go. An enormous haze set down over my brain. Soon writing, reading, and even holding simple conversations became too much for my brain to process. I came close to being in a coma at one point. Worse yet was that none of the doctors except for my Mother (who has an MD and was carefully observing the process) would believe the severity of the problem until spots showed up on an MRI. My father was sure it was all emotional.

I missed all of high school because of my condition. The emotional pain of losing my whole source of self-esteem and having doctors and many of my relatives turn against me was indescribable. Yet somehow in trying to cope with the pain and find some kind of a life for myself, a remarkable transformation occurred. During that time, much like a caterpillar in a chrysalis I began to recreate myself. I discovered a new source of self-esteem, found out who I was, what my dreams were, and developed a creative side to myself I never knew existed.

Near the end of what would have been my Senior year the clouds parted. I had been on Prednisone for a year and a half (it probably would have happened sooner if the doctors had been willing to give me a higher dose), and miraculously most of the neurological difficulties were reversed. I began to read books voraciously. The joy and vigor with which I went through whatever books I could find was incredible. I even dug up my sisters' college textbooks.

I eventually managed to get the courage up to try Community College, even though I had very little of formal high school. I spent two years going half-time with straight 'A's. I then finally fulfilled one of the cherished dreams I had developed during those long insomnia-filled nights: I applied to and was accepted as a student at Reed College. As I still only had limited energy I was only able to make it there one year part-time before I crashed physically, but oh, what a glorious year it was!

Since then I have busied myself with Desktop Publishing and Web Publishing: I work when I can, which isn't much of the time, but working creatively is probably one of my greatest joys. My life may seem insignificant to others, but the joy and richness I have found with my relationships, and in all of the artistic projects I devise for myself, makes my life full indeed. I have found that the purpose of dealing with chronic illness is not to necessarily get well but to live well, and to stop comparing my life to what most people believe is normal and just savor every moment. Ironically, even with this illness I am probably more alive than most people will ever be.

Over time I have developed many strategies for dealing with chronic illness. During the time when my mental ability varied greatly from day to day, especially in the worst of it, I used to keep books, projects and activities scattered throughout the house. Each had different requirements of brain function and energy. This is a strategy I still use on a regular basis. As soon as I my processing got better I could immediately take advantage of it while it lasted. Every opportunity for using my mind was taken advantage of. It made for a messy house, but it was worth it. The activity could be as simple as lying down and listening to music or as complex as reading a book discussing the inherent misogyny within the Medieval cult of Courtly Love.

I have found that illness provides a unique opportunity to explore and learn new ideas and skills. When I run across a subject that interests me I buy books and learn about it. In the case of software, I buy it and then play around and experiment until I've got the knack. This started out as a result of not having enough energy to make it to classes on a regular basis. However my general success has made it a habit.

Illness also affords the wonderful luxury of time to think about spiritual matters as well as pursue dreams that might have seemed frivolous in the past. It has been a very different mode of living. Separate, but equal with its own benefits and disadvantages.

Although I have been very creative in educating myself, it's hard sometimes as I don't have the usual signposts to chart my progress. I don't receive degrees or certificates or grades. However, the rewards are remarkable even if nobody recognizes it externally. The whole process of dealing with the illness and finding myself has opened an unending fountain of creativity bubbling up from within me and I'm always looking for new ways to use it. While I would love to follow up every creative urge and dream that I discover, the retribution for overdoing activity is swift and severe. My mother has often commented that the world would not be ready for the dynamo that would hit it if I did have all the energy I desired.

It wasn't until the illness that I learned that there is a definite difference between physical energy and energy of the spirit. I can be exhausted and still glow with vitality. Because of this very few people who meet me think I'm sick. They just usually don't have to be around to pick up the pieces when I crash or witness the days of rest I saved up before I saw them. Because the dynamics of auto-immune diseases are so different from those of other diseases I had to devise a way to manage my energy and deal with everyday activities. Through observation I even came up with an original theory of how the body uses energy. For instance, I can sleep 12-14 hours of sleep a night and still show up as sleep deprived on a lab test (growth hormone has been shown to be an accurate indicator). It feels like being a sieve energy-wise: you keep pouring rest into your body and it keeps slipping out. However, the price of letting it run out is terribly high. Much of my life has been spent in the process of just barely surviving. Just making it from day to day has often been a remarkable accomplishment. There have been long periods of time where getting out of the house once every two weeks was about all I could manage. Obviously I come closer to the edge physically than most people ever do. However, I've watched some of the dynamics of what happens near the edge with fascination.

As a result of all I have gone through I have acquired profound wisdom and regained a child-like curiosity. Another intrinsic side-effect is a profound affection for silliness, even when it applies to the illness. Nothing is sacred. An example was one time when I went to dinner with my mother and sister at a medical convention. There were medical sorts sitting at the table as well as their families. Each person at the table was telling what they did for a living. I felt tremendously left out. I was 18 and was not going to school or working, so I had nothing to say. My anxiety started to grow as it became closer to my turn to describe my profession. Suddenly I got a twinkle in my eye and a smile when I finally figured out what to say. When it became my turn I replied "Actually, I'm a professional invalid." My sister was mortified, but one of the women doctors laughed and was delighted and we became quick friends.

If there has been anything that has been a prime lesson for me, it has been compassion. I have been often misjudged as to whether I was sick and how I was dealing with it, but almost never maliciously and the majority of the time good-naturedly. I stopped judging anyone or anybody, and began to trust that whatever way anyone was dealing with life was the right way for them. What was right for me went against most everybody's opinion except, thankfully, my mother's who gave me complete control.

This holds true especially with auto-immune diseases as the symptoms and indicative blood tests vary vastly from patient to patient as does the ideal way to deal with them. I have learned through the process of dealing with severe chemical depression and grief associated with the illness that what are called "negative" emotions can often be tools, as are all emotions if you listen to them. With chemical depression especially I had to learn what these strong emotions signified, and realize when feelings of rejection or annoyance were not valid. I had to try to keep myself from acting on them. I still couldn't help but feel them: the emotional turmoil caused by chemical imbalance is too strong to avoid. Although it is difficult to not be able to control these feelings, it has always been crucial to me not to let others be hurt in the process. While diagnosing a disordered brain using a disordered brain is not an easy task, you have to try.

Another reason to observe and not repress emotions is that you can gain clues as to all sorts of subconscious undercurrents through them. They fill out an extraordinary rich and varied portrait of who you are, as well as detect possible problem issues before they even come up. It's not what you feel, but how you act on it that matters. You can hold onto it and let it stew, thus letting it control you consciously. You can just push it down, and in the process let it control you subconsciously. Or you could hold it out at arms length and observe it. Once you find its source it will often dissolve, leaving your actions untouched. If it doesn‚t dissolve you‚re dealing with a legitimate problem, and your emotions were an important signal as to what needs attention.

I get frustrated often, but I have an agreement with God: if I do the best I can with my life and try to leave as kind, gentle and compassionate a mark on earth possible, I can get as frustrated as I like non gratis. Humans are remarkably limited and fragile really, with much less control over their lives than most ever realize. When you learn to accept this and judge your actions on intent rather than outcome you're on the right track. I'm fortunate in that I've learned to bend my knees and thrive in chaos.

I think one of the things that sets me apart from much of the people writing about illness is a heavy dose of reality and ambiguity. I did not start out having a survivor personality. I was actually quite contrary to that: I was a born perfectionist, and my exquisitely perfectionist sisters were even less so than myself. Everything had to be a certain way or everything fell apart. In Myers-Briggs terms I was most definitely a Judgmental. When the illness hit it was an enormous shock, especially as my mental abilities were taken away. At that time there was considered to be almost no hope of my ever regaining them again. My unintentionally self-destructive approach was to keep deciding what it was that I was going to do to be normal again. These things were inevitably way out of my league energy-wise, and I would crash horribly when I attempted to do them.

"I want to die" was practically a mantra with me, and I even spent much time being annoyed with God because I just wouldn't die. I envied cancer patients greatly as they would either get well or die and not stay trapped in a hellish limbo.

Because of this I have an enormous respect and compassion for the despair that illness creates in a person. I understand the weakness and vulnerability that the process creates, something few health professionals have an appreciation for. Just trying to "think positively" is much like trying to put a Band-Aid on a fractured arm. You may think you're doing something to help it, but you need to deal with the real issue to heal, and resetting isn't a pleasant process.

It is hard for me to pin down a turning point as there were many things that confluenced together, but one incident had a remarkable impact. It was during some of the worst of the disease, and as I was not under any medical monitoring I cannot tell you whether it was a near-death experience or just a remarkably vivid dream. I left my body and started zooming up and away towards the heavens at an enormous speed. I had expected that death was what I wanted and hoped for, but instead I felt an overwhelming sense of panic and knew I didn't want to die and it wasn't right for me to die. Once I decided I wanted to live I immediately went back into my body. I realized then that no matter how much I despaired and thought that I wanted to die, my spirit truly wanted to live.

My personality type currently is a most resounding Perceptual on the Myers-Briggs. I am now the least perfectionist person in our family. I am actually a learned survivor. My entire personality has changed vastly in the process of trying to have a fulfilling life with whatever low levels of energy I'm dealing with. I have gone from being the most rigid to the most flexible person I know, something which is quite a feat. I don't think I would have survived otherwise, and am much happier as a result of the change.

The interesting thing is that the intensity, determination and strong will that made me fight the reality of the disease in the beginning have been transformed into what has given me the strength to survive and keep my heart and soul alive even though much of my life feels like treading water. Most of the things that I've learned and done can be attributed to the constant process of devising dreams and projects that will keep me looking forward to another day, even when life gets difficult. If one way is taken away due to illness I simply find another that my physical state will accommodate.

My primary emotion when I look back to even the worst of times is that of gratitude for all of those who supported me, the strength I was given to get through it, and all the opportunities for growth I pursued as a result. I must admit though, that hindsight has a much rosier effect on the whole process.

It has probably been in the last year that things have really come together as far as writing and telling my story is concerned, partially due to better health and some genuine serendipity. I am considering putting up a web site oriented towards dealing with the day-to-day issues that those with chronic illness have to face with a dose of humor added in. I am always irreverent when it comes to practical matters. It is tentatively titled "The Well-Balanced Invalid" although I know better than to set these things in stone. My writing and my sharing of what I have gained and learned from illness is what I have a strong sense is my life's work, so at this point I'm determined to help others through it in whatever form it may take.

When it comes to my writing I'm currently just taking one step at a time. It's often difficult. I'm like a run-down battery. I often am not operating with enough physical energy for my brain to work properly, thus writing tends to happen in spurts. My frustration with the published advice on dealing with illness is a major motivating factor for me. Most of what is available is not written by people dealing with a serious illness. There are so many dynamics and ambiguities that such diseases present that can never be understood by those not going through the process themselves.

Sometimes I have wondered if the fact that I have stayed sick has been a blessing in that the issues and difficulties that the process presents have stayed so fresh in my mind. It is too easy when one gets well to simply try and forget that the illness never happened. Goodness knows that when I have gotten relatively better I tried my best. As a result I inevitably crashed from trying to live a "normal" life, but that's another story entirely.

When I write I keep in mind the turbulent emotions and hellishness it was to be right in the middle of it. Why? The current writers on chronic illness who focus on positive attitude miss what people in the middle of this need. I have found over and over again, when I talk with people who are in the beginning stages of dealing with their illness, that it's when I talk about my weaknesses through the illness, and not my strengths, that they are especially comforted and helped.

Painting myself as a strong, positive dynamo usually only has the result of them comparing themselves unfavorably to me. We live in a society that believes that if you are sick there is something wrong with you. When most people dealing with serious illness feel these normal human emotional reactions to the situation that are termed by others as "negative" they not only feel defective for being sick in the first place, but crazy and even more defective for having these "negative" emotions. For them to know that this is what any sane human being would feel under those circumstances is almost always what they need to hear more than anything else. I've found that in the beginning giving yourself compassion is often the hardest.

One of my self-created sayings is "the greatest strength is that which is willing to sacrifice itself." It often requires greater strength to allow and accept weakness in yourself than anything else. Once you can do that and can accept the human side of yourself you're well on your way to maximizing the positive benefits of dealing with illness.

"What does not kill me makes me stronger,
but I reserve the right to resent it."

-- Cindy Wells

You can reach Cindy at esk@europa.com.

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