Copyright © 2005 Sherri Connell
From the time I could talk and walk, I began to sing and dance! Life was a stage to me and anyone willing to watch became my audience. I got my first horse at the age of 10 and spent many afternoons riding, racing and even performing in shows. By 13, I had a job at a pet store. Later, I was a cheerleader, worked through high school and college, sang and danced in musicals, lifted weights, rode horses, was a model and obtained 3 college degrees.
Although I had a history of a low immune system and often struggled with a cold, flu or bronchitis, I still remained active until 1991. At the age of 27, I lost the use of my extremities from the ribs down and was diagnosed with Progressive Multiple Sclerosis. To be honest, I figured I would just go home and rest for a couple of weeks and then return to work. Nothing was going to keep me down! Sure, the wheelchair was a new challenge, but I could still work and sing from the chair, so it really wasn’t going to stop me!
Despite my determination, before I knew it months passed and then years. I never recovered from the extreme fatigue, headaches, pain, weakness, exhaustion, nausea, cognitive impairments and dizziness that kept me from returning to work. It was now all that I could do to get a shower or go to the doctor. I also found out that I had Chronic-Late Lyme Disease from a tick bite I got at the age of 14. I did regain most of the use of my legs, though it was very difficult to stand or walk. I remained unable to even care for my daily needs.
I met Wayne a year after my diagnosis. He was a very nice young man; still, I was sure he would run when I told him I was disabled. Much to my surprise, he continued to call me. He even took me to many visits to the emergency room and long distances for surgeries. He had truly seen me at my worst, but it did not seem to faze him. He never knew me as the active, energetic girl I always was, but he was still able to see that I was still a worthwhile person despite the MS!
In 1994, we were married. He was my best friend, my confidant and my advocate. When others tried to dispute what I was going through, because to them I looked good, Wayne was by my side defending me to the end. You see, when living with invisible illness, friends and family often do not understand our limitations because to them we look fine. Unfortunately, this often leads to those around us claiming we must not be trying hard enough, we are lazy or we must be exaggerating. For me, because I had always been a very goal-oriented extremely active person, these claims were more devastating than the illness itself. After all, I would never willingly give up the activities in my life that I loved and cherished! Still, because to others I looked okay, people began to treat me like a malingerer.
When I was first diagnosed with the MS, I wrote my thoughts on a sheet of paper and passed it out to my friends and family in order to help them better understand my new life and challenges. I continued to write here and there over the years in my journal to help me cope with the adjustments and in effort to put into words my frustrations and fears. One day, Wayne offered to post some of my writings from my journal on the net. He thought it would be a great way to save me the energy trying to explain what I was going through to loved ones and to people I met. Much to our surprise, the message spread like wildfire, far beyond just our loved ones! It did not take long for us to discover how vital this message was to over 125 million Americans who live with various chronic conditions.
From the very beginning, we have received notes from people telling us how much the site had been an encouragement and comfort. What amazed me was that I had thought I was the only one going through these strains in relationships! Apparently, I was wrong! Not only was I not alone, but we received an overwhelming number of visitors who told us, “You have said exactly what I have been trying to say!” or “Now I know I am not alone!” One lady wrote, “Terrific insights and communicated clearly…my husband said it finally opened his eyes to what I had been trying to say all these years. Thanks.” Another even told us her husband got down on his knees and asked for her forgiveness after he read the booklet!
Wayne has taken his compassion for his wife and has reached out to all of those living with illness and pain. He has not only loved me, but has loved so many as he has gone way beyond the call of a husband to become an advocate for all who live with these conditions. Wayne became the founder and president of The Invisible Disabilities Advocate (www.MyIDA.org), which is a non-profit organization. He has been a guest on several radio programs and reaches out to the community with seminars. He even compiled some writing from my journal, edited it and had it printed into a booklet, which is made available through IDA. By word of mouth, the website have become a worldwide outreach, as it now gets over 150,000 hits a month.
We want to continue to be a voice for those living with illness and pain, for we are driven by our passion to send a message to the world. We want everyone to see the determination and fortitude in those living with debilitating conditions. We long to stand on the mountain top to shout to them, “What courage! What strength! What perseverance! We commend you! You could give up! But you rise to fight! You are heroes!” We want to let everyone know that even though our mountains may seem overwhelming, we are still climbing!
In September 2005, I was presented with the Hal O’Leary Inspiration Award at a dinner hosted by the Colorado Rockies on Coors Field. This award is given to “individuals making a significant difference in the disabled community.” I feel this award gives reason to all my losses and pain, as it recognized those living with invisible disabilities.
Although I continue to mourn the loss of my career and even the inability to do those things everyone else complains about (like cooking, shopping and cleaning), I want to thank my husband. I may no longer be dancing and singing in front of a beloved audience, but Wayne’s compassion for this hurting community has created a platform for my thoughts to complete a greater purpose: Being a voice for those living with invisible disabilities.
Without Wayne, there would still be so many lost without the words to verbalize to their loved ones what they are going through and need. Without him, so many relationships would still be broken. Without his countless hours of efforts, there would be no way my thoughts would ever reach out beyond my little journal. He is truly – The Wind Beneath My Wings.