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Features: Beyond Limitations

March 16, 2008

(Features is a semi-regular post in which I’ll be reposting the work I do for my Feature Writing class on this blog. These are not strictly published pieces, but they certainly have the whiff of journalism about them. This week: another profile.)

“David, I have to talk to Gloria”

“What? What’s wrong?” David asked. Hearing his cousin Kenny request his wife’s expertise as a nurse made him nervous. Kenny recently had had an exacerbation and was having trouble walking.

“I figure Gloria can help me. “ Kenny said, “The IV’s empty here and I’m trying to figure out how to get a beer into it.”

“I’m gonna kill you.” David said.

“When you can joke about it,” Kenny says, relating the story to me. “It helps to break the ice with people who are more sensitive.”

Nine years ago, Kenneth Doiron was diagnosed with relapsing-remitting Multiple Sclerosis, or MS. A disease of the central nervous system, MS attacks the myelin sheath that protects neurons in the brain. Messages transmitted to the rest of the body can be interrupted.

“Think of your central nervous system as an electrical system throughout your body” he says, “And the sheathing on the nerves or the coating on the wires, was damaged and it basically creates short circuits throughout your body. So that’s the way the loss of vision, the loss of physical ability such as walking, numbness in the hands, etcetera happens.”

Kenny first went to the doctor after he started losing vision in his left eye. In hindsight, it was the most recent of a long line of possible symptoms.

“I think if I look at things when I was younger I probably had it. Certain tiredness or being lethargic. So it may not have been prominent, nothing I ever went to the doctors for, nothing that I was ever that concerned about before it affected my eyesight.”

When he called David, Kenny was going through an exacerbation, which occurs when the lesions on the myelin sheath increase. A nurse came to set him up with an IV, and he had to administer a new drug dosage every morning. Dealing with an exacerbation means anything from loss of mobility to loss of vision, and it is hard to predict how it will effect the person each time.

Before he was diagnosed, I couldn’t imagine my Uncle Kenny as anything but healthy, and in a way, that’s still true. For an outside observer in the family, MS means going on the annual walk to raise money for research and taping the episode of West Wing that dealt with the disease most in depth. It means very little to the delicious seafood dishes Kenny makes at Christmas nor his exceeding ability to tease my mother by calling her “Auntie Cartman” (I don’t think Carmen Brown has ever watched a episode of South Park in her life). Although this probably has more to do with Kenny’s own attitude.

The diagnosis of MS came within months of first going to the doctor. He says his outlook hasn’t changed much since the beginning. “Okay, I got it. It is what it is. How am I going to deal with it, so I do what I need to do going forward.” He said. “I mean of course probably in the first few minutes or hours of me diagnosed you know fear overtakes you and you start to think, oh my God, what does it mean for me? You know, am I going to be able to walk, am I going to be able to see? What if things get really worse, am I going to be in a wheelchair? Of course you can think those worst things.”

“I would say its the same attitude…I think its like anything else. Like anybody who dealing with anything in your life, it’s like ‘Okay I’m in this situation’ and there are some people that can wallow in self-pity and make a bad situation worse or you can say okay, I’m in this situation now what am I going to do about it? What can I do?”

For Kenny, it’s the day-to-day choices that makes the difference. He has to balance what he wants to do with what’s possible to do that day. It’s still relatively new for him. “It’s new way of thinking of distance and walking and speed and leaving. I have to think about getting tired, stressed, stuff like that, stuff I would never ever thought about [before]” he said.

Treatment is a mixture of prevention and various drugs. Every other day, he takes a shot to limit the amount of lesions, to prevent episodes of numbness in his limbs and longer term effects.

“There’s no cure for MS” he reminds me, “So when people ask, is it working or not? I can’t always answer that question, or how are you feeling? I feel fine, I haven’t had any exacerbations, so I guess it’s working.”

***
“My father said ‘Don’t talk about this to your mother.’”

Too late. Kenny had already discussed MS with his mother, but his parents were generally uncomfortable around the subject.

“ I think the last thing you want to hear as a parent is that your child is sick. Because it gives you your own sense of helplessness that there’s not really much [they] can do about it. So I think it was very difficult for them at first, to understand it, and I’m not really sure if they understand the disease [now]. They’re more understanding about trying to help.”

Still Kenny feels the worst when people dance around the subject. “Some people will approach Shell [his wife] and say “How’s Kenny doing?” but don’t want to ask me directly, or don’t want to talk about it.” He says. “I don’t have any problem talking about it, you’re not upsetting me by asking me.”

For years, he didn’t feel the need to tell his coworkers about the disease, although circumstances changed. An executive vice president at The Hartford, very few around the office even knew until he had to go to work with an IV in his arm as well as a cane to walk with. “Of course everybody asked ‘Were you in a car accident?’” he said. When he told his coworkers that he had MS, they were surprised to find out it wasn’t a recent diagnosis.

In general, though, Kenny says the reactions have been positive. Friends and family have asked what they can do to help, but he insists that he doesn’t need everything done for him. “I want people to help, but I need their emotional support more.” He appreciates when family members go out of their way to understand what the disease is and how it might effect him.

Is there any silver lining out of being diagnosed with a life-long disease? Kenny thinks its easy to think of the negatives, but there’s one thing he’s gained.

“Maybe I’m more in tune with myself and I understand my body or psyche better than I ever had… It goes back to limitations, I wish I wasn’t limited in doing things that I want to do. I hate giving myself the shots. Every other day. That’s not the fun stuff. I hate going to the doctor’s all the time. But I do know that I have to do all that in order to keep it in check.”

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