Editor's Note: The National Multiple Sclerosis Society states that, "While MS is a chronic, incurable condition, it is not fatal."



"Fighting MS and the World"


by Kaehla Stevens



Fourteen years ago his world crumbled to his feet as he stood, his wife at his side, in the doctor's office. Looking back, he can remember having symptoms at the age of twenty. Shouldn't he have known? How could he have not known? Those words, simple but harsh, "Mark, you have Multiple Sclerosis," would haunt him and tear at the jaws of his life for years.

Falling to the floor, helpless, lifeless, the doctor described what was to come, although he didn't seem to hear.

"Mark, it's going to be tough from now on. It's going to be hard on your family and friends also. Over the years your limbs will suffer from numbness, your eyes will gradually blur, you will experience difficulty urinating and your speech will gradually slow down as well as your thinking"
(National 10).

He heard the words, but wasn't listening. "Why?" he screamed, "Why me?"

The doctor continued what he was saying. "We think that Multiple Sclerosis is caused by an inherited immune response to the virus, adenovirus2, causing your body to mistakenly produce antibodies that attack the myelin sheath. Unfortunately we don't know how to cure the disease." (Diseases 110)

"I don't understand. How long do I have to live?"

"Right now I would say you only have until you are 40 years old to live."

It was like the walls of his life just kept falling. It was hard for him to understand something so sudden. On average women are more likely to acquire Multiple Sclerosis, but in this case it was different.

"I suggest that you avoid over exertion and emotional stress. Also try to avoid extreme heat and cold temperatures and sources of infection (National 32).

This, of course, was hard considering the fact that they lived in Indiana at the time. So, in a time of crisis they picked up their crumbling lives and moved further south. His wife was his rock and is to this day. The love of his life and the sparkles in her eyes, their children, is the reason he bothers, struggles, to get out of bed each morning. Everything happens for a reason, he knows that
and lives with it every day.

Each day for fourteen years he has taken medication to soften the effects of the disease. He takes Baclofen, a muscle relaxer, for his spasms, Ditropan, a bladder control medicine and Neurontin, a medication to help with the burning and stinging in the bottoms of his feet. He also takes an intravenous drug once a month, Solumedrol, which gives him increased strength. They are all medications that don't cure but definitely help. MRI's help to see the tissue hat has been damaged by the disease. (Stevens)

"The hardest part of the disease is the trembling due to the effects on my nervous system. There are times, I have no control over the trembling of my legs." (Stevens)

"I'm very thankful for the things the Lord has given me in this life. I wouldn't go back and change a thing" (Stevens).

If not for this disease he wouldn't have been able to watch his three children grow up every day. While he was forced to close his business fourteen years ago, he has remained active and become very competent on the computer. He is trying his hand at writing a book and spends many hours each day on the computer working.

It was extremely hard for him to reverse roles with his wife when she returned to the workforce full time to help support the family, but he was able to be at home with the kids. At the time he was diagnosed with the disease his children were three, two and two months. He is the caregiver to the children now and had to overcome his grief to be able to care for them. Over the years the family has achieved a good balance in their lives.

When they moved south, his children all took up tennis and that gave him something to focus on. He would spend hours each week on the tennis court with them, he in his electric wheelchair, feeding three kids tennis balls across the net. With his guidance and encouragement, they have all become accomplished junior tennis players. In the early years, it was a way for him to play and bond with his children and get a good workout to keep his body exercised. His upper body has remained very strong (Stevens).

He has been lucky in so many ways, he knows of other people with MS his age that are much worse, as MS affects every person in a different way. Contrary to what the doctor told him fourteen years ago when he was almost thirty-two years old, he just turned forty-six years of age. His speech has not slurred or slowed down, his eyes have not gotten any worse and his thinking is fine (Stevens).

There are days it is much harder to get out of bed or go to the bathroom. "Over the last fourteen years, I've learned that people take the simple things in life like standing up and reaching for a glass for granted" (Stevens).

Today it is very hard for him to always feel things. His sense of touch has slowly declined as well as his ability to operate and control the muscles in his legs.

"When I go into a grocery store, people stare; some ask if I need help but most just stare. There have been times that while putting my electric wheelchair in the van that I have fallen and people have walked by in no hurry to help" (Stevens).

People are afraid. The world has become a place where if someone is not the most normal person, they are rejected and labeled as an outcast. What is the world coming to? Just because a person is a little different than us, does that mean that they are less of a person than us or less intelligent or less 'normal'?

Just tonight, as I was typing this paper, that man, the one you call an outcast because he's different, proved to me that I wasn't any better than he. While I was screaming and crying because neither printer would work, he, that man with Multiple Sclerosis, was proving everyone wrong. He is more intelligent than I will ever even think about being, calmer and more 'together' than anyone I've ever met.

As I am crying, frustrated with the world, he is saying, "anything can be accomplished, but only without so much emotion and anger and frustration." He's learned to live with what God's given him and knows he has been blessed in so many ways. He doesn't take out his anger and frustration on the world, like me, the normal one, but uses it to accomplish life's tasks. He is my inspiration and my rock.


All materials published in LivingMS™ are protected by copyright laws.