In Oct. 1997 my world was forever changed when I was told of my diagnosis. “I am sorry to inform you Dr. Clouse, but you have OPCA (sporadic Olivopontocerebellar Atrophy). You will not be able to continue your career as a general surgeon. As your symptoms progress you will also have to find a way to simplify your life.” Of course, there was more to that visit on that day, however, like many of you, that was the gist of what really hit home. Later it was determined that I have the marker for SCA14. This is the common ground we share. We have a degenerative neurological disorder, our lives and careers were forever changed and there really is much of anything to do but go along for the ride.
And what a ride it has been. For me this ride has been reminiscent of a roller coaster. Suspended in my seat, the ride begins in the light of day, then quickly enters into a chasm where only faint images can be seen of what lies ahead. There are recurrent transitions between total darkness and varying degrees of light. The track mercilessly traverses a serpentine course with loops and twists intertwined; abrupt changes in direction are frequent. As the ride progresses my seat restraint becomes loose and I fight the forces to maintain my security, but the ride continues.
The speed increases and the changes in direction become more frequent. I fear for my life as different parts of my body impact the solid structure of my new environment with an increasing frequency. The darkness now is total and the ride plummets. With a snap turn I am ejected and land precariously on a solid surface; bruised, helpless and disoriented.
Feeling the foundation beneath my feet I discover that its surface is rather small. Slowly, I carefully shuffle my feet while turning around in the thick darkness. The dank air is laden with a heaviness with which my rapid breathing struggles to inhale. A chill runs through me as my hands find a cold, damp wall rising above me; its surface irregularly smooth. Something falls as I shift ever so slightly; echoes of its skipping impacts fill the silence as it plummets ever deeper. I am on a precipice of unknown size and strength and I stand rigid with fear. Looking up I detect what appears to be a small opening which emits a faint soft light far above beyond my reach. Then, from the depths below me, I hear a thudding shudder as the stone which I pushed from its resting place comes to rest on the bottom. I am alone. My wits, skills and imagination are all I have with me. My fate rests within myself and my abilities. My fate – is rather ambiguous. Now what am I going to do?
Fortunately, I gained the ability to reach that faint light within myself over the past couple of years, and its growing intensity is quite refreshing. I will not belabor that subject here for it is described in “My Journey.” Being difficult and frustrating in the beginning, the process became enjoyable and rewarding as time progressed. And each of you can do the same in your own right. So who am I?
Simply put, I am just another person much like yourself. Born to the rural farm lands of northwestern Ohio in 1952, my childhood was fairly ordinary for that setting and era. I went through the usual rituals then spent 8+ years in the Air Force working on fighter aircraft until an opportunity arose. In Jan. 1979 I took advantage of that opportunity and began pursuing an academic path. It was a great path to follow and it eventually led me to three graduation ceremonies. I earned my bachelor’s degree in 1982 (University of New Mexico), earned my M.D. in 1989 (University of New Mexico School of Medicine), then in May 1994 I completed my general surgical training. From there I entered into private practice as a general surgeon and I could not have been happier, or more content.
But all too soon, that day in Oct. 1997, just three short years after finally finishing my schooling, it was over. No more scalpel, no more operating room, no more surgical practice. Gone – in the blink of an eye – it was ripped away. From there I went into general medical practice but in a short while that too was taken from me. Thus came the time in my life when the roller coaster plummeted into the deep into the darkest chasm.
The next chapter in my life is what you are learning about within this website, and it happened quite un-expectantly. Here is the abridged version. I had been to the annual NAF meeting a couple of times and each time I continued to hear an under-current within the tone from the people at those meetings. This was an unspoken gesture/tone/voice which pleaded forth from the participants of the meetings. As I sat back and observed the faces, studied the stares, listened to questions asked of others and over-heard conversations, there was a recurring puzzling question. “But what about me – what about me right now? Is there anything out there that can help me now? Give me some hope, something I can use, do or take to make me better. I wish I may, I wish I might….”
I should also add that all the people I met were delightful. All the faces I looked into were smiling or were also pleasant. And the thoughts I heard expressed were not negative or condescending. Yes, the NAF meetings are attended by wonderful people coming together for a common cause, and I witnessed that. But now that I had been given the opportunity to see the grass on both sides of the fence, I could also hear and see the despair. I live it myself, just like many of you. It was during that first NAF meeting I attended, sitting in the audience for the breakout sessions, when the thought first came to my mind. We have to give them something more. We have to give them something they can use today. I do not know what it is or where it will come from, but we have to give them something more. “Can you hear them? They are screaming for it.” The time was 1998 in Virginia.
Nine more years would pass before I would stand in front of the room of a breakout session at the annual NAF meeting to present “Dancing with Ataxia.” The year was now 2007. I was honored and quite humbled to be there in that role. I had finally returned to these same people, to these same people with whom I share a common neurological condition, to present something most any of them could use right NOW to help themselves.
I had found something I could do which allowed me to move better, safer and with more confidence. I simply learned, but with so very much effort and frustration, the skills of proper movement which I had lost, forgotten or never acquired in my earlier years. These newly acquired movement skills also provided me with an improved quality of life, renewed some fun into my life and introduced me to a new life style. It was clearly evident to me that I had an obligation to share this with my neurological impaired kindred, and here I was doing just that, sharing this gift with those who need it most.
So again, who am I? I am the bell ringer, the retired physician with a voice, the person attempting to wake others up to the possibilities before them if they will only make the effort and try to learn this for themselves. This is a passionate mission for me. Being a surgeon was phenomenal, I loved it. But I have to tell you that helping someone regain themselves as you will read on this site is just as profound and important.
Restore a disabled person’s mobility, give them back their basic movement skills, and the freedom that mobility endures unto them, and you have breathed new life into them. And that my friends, that is exactly what the disabled person wants most. They want some of their normal back and basic movement skills is where it starts. Believe me – I have been there.
Of note, in the spring of 2003 I was advised by my treating neurologist that I should begin using a wheeled walker because I was quite clumsy and falling frequently. And now in 2008, I am dancing and have no need for anything to help support me as I walk. What happened? Was it a miracle? Nope! It was all stubborn me and a very bad want to get better!
So I ask you – how bad do you want it for yourself?