INNERVENTION R

‘BACK’ IN THE GAME

WRITER: JAMES COMBS // PHOTOGRAPHER: FRED LOPEZ

It will never happen to me.

Be honest. You have probably uttered those words — or at least thought them — whenever someone mentions they are suffering from a debilitating illness.

I am guilty of it. At age 37, I still maintain those youthful feelings of invincibility. Moreover, I had lost 90 pounds four years ago and religiously exercised on a daily basis. I’ve also tried to be a good person — a thorough background check will reveal that my worst offenses are several speeding tickets. Surely, a relatively healthy, law-abiding citizen like me would never be subjected to a horrible illness at this point in my life, right?

Wrong.

In December, I was officially diagnosed with arachnoiditis, a disease that occurs when the arachnoid layer of the spinal cord becomes inflamed. The arachnoid space houses many nerve roots. When inflammation occurs, these nerve roots clump together and nerves begin misfiring.

Some sufferers are permanently confined to a wheelchair and spend much of their time bedridden. In advanced stages, this incurable disease causes pain “as bad as terminal cancer without the prospect of death to end the suffering,” according to Dr. IHJ Bourne, which he wrote in the Journal of Royal Society Medicine.

Slipping into darkness

Last November, I began feeling a sensation of electrical shocks in my legs and buzzing in my feet and thighs. While lying in bed at night, my right leg would twitch out of nowhere. And the thigh muscle in my right leg became spastic. I started wondering, “What’s going on with my body?”

Standing or sitting still for any amount of time caused me considerable pain. And at work, I would walk numerous laps around the office building just to seek pain relief. When I arrived home, I spent endless hours Googling my symptoms to figure out what was wrong.

One cold November night, I stumbled across an arachnoiditis website. As I began reading about this disease, a light bulb went off in my head. I knew this was what I had. Desperate, I convinced my chiropractor to order me an MRI. The radiologist report said my dural sac had been displaced by scar tissue at the L5-S1 level, a classic sign of arachnoiditis. Through research, I discovered Dr. Antonio Aldrete, one of the world’s leading experts on this disease. I mailed my MRI films to him, and he called back several days later with the grim diagnosis.

I was back on the Internet to learn everything I could about arachnoiditis. As I read countless horror stories, my mind wandered to a very dark place. Would I lose my job and my home? Would I have to move in with my parents? Would taking care of me ruin their relationship and lead to divorce? Would I no longer be able to drive? Would I spend my future lying in bed in agonizing pain?

The more I read about arachnoiditis, the more depressed I became. I simply went through the motions of life without any enthusiasm. Pity parties became constant. And if I had a dollar for every time I asked “why me?” I could have easily purchase that Ford Mustang with the 5.0-liter engine I desired.

Into the light

In early January, I met Dr. Aldrete at one of his offices in Chipley, a small town in north Florida. I underwent five days of intravenous steroid treatment to reduce inflammation. My pain levels dropped, and some of my more annoying symptoms disappeared. He told me patients experienced the best results when they received his treatment within four months after the disease-causing injury. It had only been four and a half months since my injury, so I felt fortunate. Many people go years before they are diagnosed with arachnoiditis, let alone receive any sort of treatment.

After returning home, I joined Arachnoiditis Everyday, a Facebook support group. This small “family” of arachnoiditis sufferers shares coping tips, provides encouragement, and discusses various treatment options. For me, it made a big difference to connect with people who are going through the same struggles. We inspire and lean on each other as needed.

In February, I purchased a recumbent bike that features an adjustable back- rest, which is ideal for someone with my condition. Being back on a bike — even one that sits low to the ground — for the first time in seven months helped me experience a wonderful sense of freedom and accomplishment. I am now riding 10 to 15 miles each evening.

For me, the greatest spirit-lifting moment occurred in May when I met Karen Odom Burkley Kovacik, a Villages resident who also has arachnoiditis.

Although she is in year five of her diagnosis, Karen is a member of The Villages Aquatic Swim Team and recently won first place in the backstroke at the Florida Senior Games. This upbeat, positive, and determined woman undergoes a unique treatment protocol to keep her arachnoiditis in remission. Meeting her gave me a renewed sense of hope.

What’s next?

Other than muscle relaxers, I am not taking any doctor-prescribed medication. I continue working full-time and exercising daily. I’m very fortunate because many arachnoiditis sufferers must take multiple medications just to function at a minimal level.

I have no idea what the future holds. However, I do know that maintaining a positive attitude is vitally important. It also has allowed me to enjoy more good days than bad days. With a diagnosis of any disease, it is normal to experience a wide array of emotions. You will undoubtedly mourn the loss of your former life.

However, it does no good to dwell on your limitations. You have to get busy living by discovering what you still can do — and love doing it to the fullest. Riding my recumbent bike has helped me feel more comfortable in my “new shoes.”

Diseases do not discriminate against age, race, or gender. As I learned, it can happen to you. And if you are diagnosed with something, it does not mean life is over; it simply means life has new meaning and purpose. Embrace your new life with wonder and joy and continue living!