It was January, thirty years ago in Richmond, Virginia. My baby was six weeks old and there was something wrong. I was going blind in my left eye. It started imperceptibly like a fleeting, floating bit of gauze until it became an impenetrable curtain, layer upon layer of thick, brown fog, impervious to even the brightest beam of light.
At the same time I held in my arms my most precious infant son, I saw him slipping from my sight. I held him, I nursed him, I loved him and I cried, probably more than he did. I was scared. I began having trouble speaking. Words in my head either wouldn’t come out or they were halting and stuttered. My legs were weak and burning with an odd ice-like sensation and it felt like a vice was compressing my ribs.
It was many tests but not many weeks later that the mystery began clearing. Examination of my left eye by a neuro-opthalmologist revealed optic neuritis, an inflammation of the optic nerve caused by demyelination of the nerve. The combination of blindness, speech irregularities and my leg and rib pain eventually led to a diagnosis of multiple sclerosis, an autoimmune disease of the central nervous system that leads to scattered nerve conduction. Symptoms vary widely, depending on the amount of damage and the nerves that are affected. Myelin can be compared to the insulation on electrical wiring. When the myelin sheath is damaged, messages that travel along particular nerves may be slowed or blocked. That is why problems associated with multiple sclerosis range from minimal to severe. Its very name, “multiple sclerosis,” refers to the multiple areas of scarring, or patches of demyelination in the nervous system. There is an uncertainty to this disease that was now casting its shadow over my future.
I was thirty-years old, a new mother looking forward to this new little life. I’d been a Navy wife for nine years, an RN for six, a runner for seven, and a mother for less than two months. Hopes of strollers and playgrounds gave way to fears of wheelchairs and walkers. I’d run two marathons in Hawai’i, both of them with cardiac rehab patients. That’s where my career in cardiac rehabilitation began. That slid into the background as I wondered if I would even be able to walk when my little boy took his first steps. I was faced with an overwhelming sense of fear and loss, fear of what was to come and loss of the person I once was, of what I used to be able to do, and the question of what I would be able to do in the future. I didn’t know how yet, but I knew it was going to make my life, our lives, different.
I kept going because I had to and because I was able to, at least for the moment. I focused on my son and our move to Iceland with my husband’s job in the Navy. Since heat can be a detriment to MS patients, the climate looked to be in my favor! My eyesight gradually returned, although never back to normal, and I resumed exercising. At first I swam and then I returned to running, very gradually. It felt good to be able to run again.
Multiple sclerosis is an unfair disease. Some people are incapacitated early and cannot walk. Some can almost literally not lift a finger. It depends on which nerves are affected. I’m one of the lucky ones. I have what is called relapsing-remitting MS, periods of remission and recurrence. There are continual ups and downs. To look at me, you’d never know. My MS is invisible to most. I still experience eye problems off and on, primarily double vision. My legs hurt sometimes and I have a right thigh that is weak no matter how much resistance training I do. When I run, I have to be careful not to get too tired. I have tripped and fallen twice because that leg didn’t lift up when I expected that it would. I still experience tight “hugs” around my ribs and, at times, I am overcome with an overwhelming sense of fatigue—lead legs, heavy feet and a brain that just says “no.” Those are the days that I wonder if “this is it.” I have no choice but to lie down and rest.
On other days I keep on running. I’m sixty years old and I’m blessed. I have a chronic disease that taps me on the shoulder now and then to remind me that it’s still there. I know there are those with MS who are much less fortunate than I am. I am thankful for every step I take. I will continue to run, jog or walk as long as I can because I can. A month ago, my son celebrated his thirtieth birthday. When I visited him last April we went running together. This month, I am celebrating my thirtieth anniversary of living and running with MS.
Olivia Rossi, RN, MSN
Certified Clinical Exercise Specialist, ACSM
Certified Personal Trainer, ACSM