Copyright © 2000 Sherri Connell
As a little girl, I was energetic, full of life and loving every minute of it! I dreamed of becoming a singer, actress and Miss America. I loved to work from the minute I discovered it, as I began helping my mom with her business out of our home, when I was 7. By the time I was 13, I worked in a pet store on Saturdays and by 14 I worked part time in a clothing store. Throughout high school I worked, went to classes and was a cheerleader. By 17, I had the keys to an upscale baby products store.
Starting in high school, I had experienced a severe problem with my immune system, as I seemed to catch everything possible! I was constantly getting bronchitis, the stomach flu or strep-throat. The doctors always said it was because I was doing too much and I believed them.
By college, I was getting pneumonia once a year, bronchitis, strep and the stomach flu regularly. But, I was not about to give up my dreams and continued to work and go to school sick. I studied music, theatre, dance, was a cheerleader and thoroughly in love with the performing arts!
I worked 2 jobs, went to school full-time and performed in musicals. A normal day for me was to get up at 4:00 am, go to work, then to school, then back to work, then to rehearsal until 1:00 am. Amazingly, somewhere in between there, I lifted weights, cleaned my house, was a cheerleader and rode my horse!
After college, I went on to become a professional model, while working another fulltime job, entering modeling contests, talent contests and pageants. Often, I would go to work throwing up, with a fever and severe cough. It took a lot for me to call in sick and when I did, it was because I was so ill I could not stand on my own for days to weeks at a time.
Several years later, I realized I was only chasing after a desire to be acceptable to society and to fit into their mold of what an ideal woman should look like. My body was famished from anorexia and my pursuit of a perfect image had left my heart very disturbed by it all. I did not have the ruthless and egotistical outlook that my co-workers did and had no desire to adopt it! I concluded that starving my body and focusing on my outer image, was not pleasing to God… so I gave up the glamour and quit.
I slowed down my schedule to only working 45-60 hours a week and went back to school full-time. I was determined to get my Bachelor’s Degrees and then my Master’s. At that point, I had decided to use my talents for the glory of God in music ministry and follow my dreams of a career in management. Therefore, I obtained a Bachelor’s Degree in Human Resource Management, a Bachelor’s Degree in Christian Leadership and a Minor in Liberal Arts.
During my Christmas vacation of 1990, I caught another virus and had a severe case of bronchitis… again! I went back to work in January with a 101 degree fever and what turned into pneumonia. But the last thing I wanted to do was to miss work! I was about to start my Master’s Degree, I was looking to buy a house with acreage and my new career had just begun!
About a month later, I still had the pneumonia and fever and one morning I woke up with my left foot asleep. I went to work and spent the whole day rubbing and stomping it, trying to get it to wake up. The next morning, I stood up out of bed as usual, only to fall flat on my face on the floor!
What was going on? Now my whole left side was asleep and my back felt like it had a knife in it! I drug my leg around the house till I was ready to leave for work. It was snowing and I had to close the garage door and run under it before it shut (as I did every morning). The sun had not risen yet and the driveway was covered in snow. I pushed the button and drug myself as fast as I could; but, I slipped and fell on the driveway.
It took me about 20 minutes to get up and get into the car. Then, I was faced with a new obstacle… I had a stick shift! I sat there for a minute, then figured out that I could shift by picking up my leg, placing it on the clutch and forcing it down with my left hand, while shifting. I drove to work in downtown Denver, parked in a lot and drug my left leg behind me down the street to my building. When I came through the door, my co-worker was very angry, because I was a half an hour late; but when I told her what happened, she was amazed that I came in at all.
The rest of the day, our customers watched me hobble around with a rolling stool underneath me, to hold up my left side. My back hurt so bad, that I figured I probably just slipped a disc! However, after a few weeks of being affectionately re-named, “Hunchback,” the chiropractic treatments were not helping and I was getting much, much worse. I went to a couple of Neurologists, both of which suspected Multiple Sclerosis.
As my condition quickly worsened, I became so ill, I could hardly sit up. I was weak, sick all over, in unbearable pain and going downhill fast! I finally had to call in sick from work, because I was so ill, with the full intention of resting for a few days and getting better. Yet, I ended up in the hospital shortly thereafter, because I was numb from my ribs down, paralyzed and flat on my back from pain, unbelievable fatigue and “flu-like” symptoms.
In the hospital, they put me through MRI’s, a spinal tap, a cat scan and countless tests. I found out later that the Neurologist and Physical Therapist wrote on my chart that I was, “inappropriately cheerful.” You see, I knew I was paralyzed, but that was o.k.! I could still wheel into work and on stage to sing, so I figured I would get over whatever was making me so ill and get back to my career and ministry! No chair was going to get in the way of my dreams! My boss said he would buy me a wheelchair accessible desk, my mom was there by my side and God was holding me in His hands, so what was there to fear?
By the time I left the hospital, I had a confirmed diagnosis of Primary Progressive Multiple Sclerosis. Yet, that did not matter much to me, because I knew I was going to BEAT IT! So, I went home to rest for a couple of weeks, expecting to get better. When a couple of months passed, I could not understand why I had not improved and was still unbearably sick! Just to take a shower was an incredible effort that left my heart palpitating, head spinning, bones shaking and body sweating. In keeping a positive attitude, I told myself it was just the Prednisone making me so sick and by the time I was off of it I would be fine.
When I was beginning to learn how to walk again, I can remember standing in the kitchen with my friend, Lisa. I said, “Hey, Lisa… watch this!” I lifted up the crutches and took two wobbly steps like a baby taking their first steps. We laughed and cried as she jumped for joy! “Look at me, beating this thing!” I was learning to walk again and the next “step” was to get over whatever it was that was making me so ill. After all, I never before let being sick or paralyzed or anything get in the way of my dreams and I was not about to start now!
As time passed, I saw my friends falling by the wayside because they did not understand what I was going through. To them, it looked as if I was recovering, so they could not comprehend why I was still unable to work or even sing in the choir. Thus, I wrote my first pamphlet about MS, hoping that they would read it and stand by my side in support, rather than making me feel even worse about not being able to go back to work yet. Thankfully, my family was still there every step of the way, comforting me and believing in me!
By the time 10 months had passed, I became frustrated and upset, because I was STILL not any better! I had been off of the Prednisone for months, so I could no longer blame it on that. It was still incredibly painful to walk and took a ton of energy, like I was climbing a huge mountain with 100 pound weights strapped to each leg! Even sitting, standing, reaching, bending and just talking was unbearable, as it caused “bone crushing” fatigue, incredible exhaustion and constant pain.
I desperately wanted to escape this horrific illness, which had debilitated my entire body and was still convinced I would. I remained determined not to give up my career, hopes and goals for my life, so I continued to go from doctor to doctor, try drug after drug and research everything I could, in hopes of finding the answer.
Then, about 8 months after that, I was diagnosed with another illness, Lyme Disease. We traced it back to a time when I had been bitten by a tick at the age of 14. Evidently, when my immune system went into failure in 1991, the Lyme flourished and took over my body.
Initially, I was excited about the diagnosis, because I thought I would just get treated for it and would soon be on my way to recovery! Even so, after 4 years of IV, oral and injections of antibiotics, it became apparent that it was too late. It is very difficult to treat Lyme after a person has had it for a year and I had it for 14 years. By this time, it was in my tissues, all of my joints, organs, brain, spinal cord and cells.
For me, both the Lyme and MS cause unbearable fatigue, incredible exhaustion, organ degradation, heart problems, memory loss, cognitive dysfunction and breathing difficulties, just to name a few. Parts of my spine and brain are eaten away, which causes central nervous system failure, numbing, tingling, pins and needles, dizziness, weakness, blurred vision, pain, paralysis, parasthesia, memory loss and cognitive difficulties. As with most chronic illnesses, one disease often causes other secondary medical disorders like infections, hypothyroidism and many more.
It has been a constant challenge to lose my independence, career, ability to have children, loss of hobbies, recreational activities and even the ability to care for myself on a daily basis. I now not only mourn those losses, but it also breaks my heart that I can no longer do those things most people complain about. For instance, cleaning the toilet, dusting furniture or just stopping by the grocery store for a few items, without collapsing and paying dearly for days or even weeks!
Many people I meet ask me, “So, you are tired all of the time?” Believe me, just feeling tired would be bliss! Every single day, I am in pain from head to toe, ache all over, all my joints and muscles hurt, my head pounds and I am nauseous. I feel like I am carrying several hundred pounds of weight on my head, shoulders, arms, back and legs. I have crushing pain like someone is compressing my entire body, cutting off all of my circulation and making it difficult to breathe, until I feel like I am going to implode! The more I do, the worse I feel, until I hit a wall like a bug on a windshield. No, just being tired would feel SOOO good!
In all of this, I cannot thank God enough for my siblings and parents who were there for me in support, even when the rest of the world seemed like it was against me. Building new friendships is heartbreaking and disappointing, because people tend to avoid me, even though I try not to make my illness the focus of relationships. Yet, I have felt isolated, lonely and almost like a leper as the only comments people tend to make to me are hurtful.
People say things like, “Maybe you just have a lower pain tolerance than most” or “You just need to stay more positive.” They even try to tell me, “You’re lucky you don’t have kids,” or ask, “Gee, what do you do all day?” Often they question what I am saying by commenting, “But you LOOK good!” or “But, you LOOK like you are doing great!” Some even ask, “Why couldn’t you at least work part time?” or claim, “You’re lucky you don’t have to work.”
I never willingly gave up my career, nor would I ever willingly accept this illness without a fight! I went to work extremely sick on countless occasions in my lifetime, but this illness has rendered me debilitated beyond my will! Moreover, I would be working today, if it were at all possible! I have always been a determined person and would never have chosen to give up my career! I still have very vivid dreams about going back to work and being extremely happy. Nevertheless, I then wake up sobbing, when I realize it was only a dream!
Most people expect those living with chronic illness to look like they do when they have the flu. Though we may feel like we have the flu, we do not actually have the flu virus that causes the fevers which cause the flushing in the face. Therefore, they often become confused when we say we are ill. Even so, because of my illness, I have gained weight, my hair has turned darker, my skin has lost its color, my face is puffy and I look much older. When I run into old friends, they do not even recognize me. The bottom line is that I DO “look” sick! Yet, first of all, people expect me to look as if I have the flu. Second, I usually do a makeover on myself before others see me (I try not to look like that horrible picture in public). Third, the new people I meet have never seen me “well,” so they don’t know the difference.
Hey, I enjoy when people tell me I look nice or that I am attractive, who doesn’t? But it is hurtful when they do not believe I am ill, because they cannot SEE it! In other words, when they say, “Ya, but, you don’t LOOK sick,” I feel like they are saying, “But, I don’t believe what you are telling me, because I cannot SEE it!”
I realize people mean well, but being a “positive,” “never give up,” “never give in,” “never let illness stop me,” “never let my dreams go” kind of person, it really hurts when people assume I am sick, because I am weak, do not try hard enough and lack a positive attitude!
However, nine years, hundreds of tests, many trips to the emergency room, tens of thousands of dollars and several surgeries later… I am still researching, still grasping, still hoping and still fighting! I have tried every medication, vitamin and herb, with no relief. Even so, my doctor and I are convinced that because of all of the supplements I take and by the grace of God’s strength, I am still alive and here today.
After years of battling this illness, I have found that the mourning of losses of dreams, goals and life plans is often done alone; without the shoulder of friends and often even family. I believe this is a tragedy among tragedies! In a time when a person needs support the most, loved ones are running, avoiding, blaming and denying reality!
For many reasons, our friends and family often tend to stay in denial about illness; somehow, they think if they do not acknowledge it, then they will not have to deal with it. However, how can they be compassionate about a situation until they acknowledge that the situation exists? And, why do they insist on treating the person like they are to blame for the disease, because they need to be more positive or motivated to cure their disease?
Think about it, if I told someone I broke my leg and could not go skiing this weekend, would they say, “oh come on, you can go, just be tough!” Or if my arm was being eaten away by gangrene, would they say, “oh, you just need to think positive.” Or, if a child swallowed a deadly poison, would they say, “nah, don’t call the hospital, you are just being overly sensitive.” So, why would they disbelieve me when I tell them I have a disease, act like I lack motivation and treat me like I just need a better attitude to cure it?
I have learned that if all of those who cared about us would rally around us to say, “we are sorry for your losses and we mourn with you,” we would have the strength and desire to fight even more, because we would not be wasting all of our energy trying to explain things over and over, defending our position and yearning for their belief in us; and, in the meantime, we would feel loved just as we are and find new goals and dreams which are reachable with our uninvited limitations.
Unfortunately, some diseases and disorders do not yet have treatments or cures that work on every person; so, they are left with a body that will not cooperate with their desires! They are not giving up, they are doing all they can, because nobody wants to live with limitations! In my case, I should have died 5 years ago, but because I fought, persisted and made huge changes in nutrition and supplements, I am alive today. No, I am not any better, but I am alive! I would like to appreciate this, but most people will not let me when all they see is that I must be weak, because I am not better! Doesn’t still being alive count for anything?
In all of my experiences with debilitating illness, I have watched myself and others struggle with career losses, insensitivity of family, loss of being able to have children, loss of friends, seeing dozens of doctors, incurring tons of medical bills, trips to the emergency room, surgeries, countless disappointments, endless frustrations, bottled up anger, unavoidable depression and tragic lack of support.
Through the years of being disabled, on occasion I would write down my experiences with illness and disability in my journal, as therapy. When I first noticed my friends falling away, because they did not understand what I was going through, I wrote a letter about what it was like to have MS. I had the hope that after reading it, they would have a better comprehension of what I was feeling and going through.
Writing in my journal has been rewarding, yet frustrating and painful because of the cognitive impairments, pain and fatigue from the MS. When I was well, it was nothing for me to write a 10-15 page report in a day or two. Now it often takes me years to write just a few pages, because of this debilitating illness, unbearable fatigue, unbelievable pain and incredible cognitive difficulties. I often forget what I am writing before I can even finish a sentence. I get confused and cannot remember what I wrote and the struggle for words is a tremendous challenge. My brain is truly full of cement and locked up, as I usually can barely even remember my name and have great difficulty speaking.
My husband, Wayne, wanted to put some of my thoughts from my journal on the web. He thought it would be a good way to help our friends and family better understand my condition. He figured when people asked about my illness, I could simply say, “Check out the website,” rather than grappling for words to describe my situation to others. We figured a few loved ones and people I met would visit it now and then. Surprisingly, we quickly found there were many others who were going through some of the same struggles, frustrations and losses. There are so many people out there battling serious illness, which has robbed them of their goals in life; but even worse, their spouses, parents, siblings and friends who do not understand and refuse to love them with the disease! It is appalling and shocking how someone can suffer from an unwanted illness, lose control of their bodies, lose the ability to chase after their dream and be treated as if they are “choosing” to be ill!
Later, Wayne compiled words from my journal and printed them into a booklet format in hopes of helping others feeling the same way and going through the same struggles. This gave those with chronic conditions a tool to help their loved ones understand and the format made it easy for them to hand out. He made it available without profit.
Soon after, we became amazed at the response we received from sufferers, thanking us for “putting into words what they are feeling and thinking,” in hopes that their families will gain a new understanding and respect for them after reading from the journal. And, we have even gotten comments from “well” people saying my words were a “reality check” for the way they have been treating their ill loved ones.
Since then, Wayne took over the website and founded the non-profit organization, the Invisible Disabilities Association (IDA). He is joined by several amazing business and medical professionals on the Executive and Advisory Boards, as well as some wonderful volunteers who provide encouragement, education, connection and support through publications, resources, videos, radio programs, seminars and other events. They have an exciting business plan filled with many thrilling projects and ways to reach out to the community and partner with other organizations!
I, again, praise God and give Him all of the glory for using my story to help others! I am thankful for all the people with IDA who give of their time and love to bring comfort to many suffering hearts.