The Multiple Sclerosis Tapestry: Interviews with People whose Lives are affected by MS

Merely Me Health Guide
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    Name: Stephen Harris


    Type of MS: The bad kind. actually, my neuro thinks i'm on the cusp between Relapsing Remitting  and Secondary Progressive, I think and the other neuro I saw last week thinks I am solidly into SP.


    Blog link:  One Life

     

    When I first met Stephen on-line I was still reeling from my diagnosis of Multiple Sclerosis.  I didn't know what it meant or what to do or think.  One of the ways I coped was to reach out to find others who had this disease.  Stephen was one of the wonderful people I met during that crazy time.  Stephen brings comfort in his brutal honesty.  I didn't want to read sugar coated accounts about this disease.  I wanted to know the truth about what this illness can be like.  Stephen is both honest and profound in his writings.  When I read Stephen's answers to my questions for the first time, I experienced a deep emotional reaction.  I am sure you, too, will be moved by this particular interview.

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    Thank you for doing this Stephen.

     

    When were you given your official Multiple Sclerosis diagnosis?

    I was officially diagnosed in November of 2003. I'd had a bunch of weird unexplained physical symptoms - dizzy spells, muscle cramps, etc. - off and on for twenty or so years, and when they went away, my docs and I just said, well, thank goodness that's gone. Then I suddenly developed some serious foot-drop that I could not ignore, and then went blind in one eye. By the time I'd been thru all the testing (including a spinal tap) I had self-diagnosed (after googling optic neuritis). When my doctor finally "broke the news," I already knew.

     

    Did your diagnosis take a long time?

    From when I first presented symptoms to my doctor, it was pretty quick. I guess there wasn't much doubt about it.

     

    What tests did they do to get to the diagnosis?

    There were blood test, looking for things like lyme disease and such, and the good ol' spinal tap. My wife was with me for that, and later told me it was a REALLY good thing I hadn't seen the needle.

     

    Did you know in your gut that you had MS before you got the official diagnosis?

    Yeah, I had figured it out, and I was pretty certain, so it was more of an official confirmation when my doc told me.

     

    What was your reaction to hearing that you have this disease?

    At first, I thought it was a little scary but not really a big deal. It didn't really seem to affect my life all that much. I didn't want to tell the kids, for fear of upsetting them, but I did after a day or two. It quickly became apparent that I was no longer going to be able to do a lot of things I really loved - working with a chain saw was definitely out, and climbing and hiking and skiing, and later, doing much walking at all, I just couldn't do. My legs (mostly the right) just wouldn't. So there was some mourning. there still is - a morning when i struggle to get into the shower, and have to sit down while I wash myself, I have a little cry and repeat, "I don't want to have MS any more." my son and I had gone to Acadia national park for many years, since he was a little boy, camping and climbing and hiking. Last summer we went back, but we stayed in a motel, and drove thru the park, and he said, without thinking I'm sure, that he wished we could do one of our favorite climbs. I had to tell him that I did too, but I just couldn't. That was very hard for me. So it's been a slow process, getting my head around it, accepting that, each day, this is as good as it's going to get. The things I've lost, barring any amazing discovery in remylenization, are gone. Without a support group of people who really understand ms, I feel pretty alone.

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    What sorts of symptoms do you or have you experienced?

    Mostly it's been drop-foot, my right leg is about  1/4 as "strong" as my left. I have adapted my car to be driven with the left foot. Fatigue is a biggie, too, and it is hard to explain to people that no, I'm not "tired," and a nap won't help. Three days of bed rest, if I could stand it, would be good. The fatigue is physical and mental and never really goes away. I have had cramps, or spasms, or what we call "jimmy leg," I guess it's like restless leg syndrome, since I was a kid, I think, and always thought it was normal. That has gotten a lot worse in the past few years. I get similar symptoms in my right arm - and always right when I'm going to sleep. There are balance issues. I told my employer that I had ms, just so they wouldn't think I was drunk at work when I went stumbling down the hall. I have been dealing with depression for years, so the ms was no help with that. There's been bouts of vertigo, sleep disturbance, lower digestive tract issues (to put it delicately). There's really minor stuff like the feeling that there's an ant crawling on my leg when there isn't, or persistent itches, or little pin-pricks. There is a spot on my left thigh that every now and then feels like there is a very deep bruise, when there isn't. It is still hard to remember that there's nothing wrong with my leg - it's, to coin a phrase, all in my head.

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    What meds, treatments, or alternative therapies have helped you the most?

    I was on rebif right away, and I guess that helped, though it is hard to know whether it was the rebif or just the natural progress of the disease. I went thru several different drugs to deal with the leg cramps, but I've found klonapin to work very well. Nothing I've taken for fatigue has helped - ritalin (which is essentially amphetamine) just makes me feel speedy. Last summer, my leg got dramatically worse, so I switched from rebif to tysabri, thinking that the rebif was no longer effective. But a second opinion I recently got suggested that I was into secondary progressive ms, and there would be no benefit in tysabri. That one is still under study. Other than that, ambien is great when I can't sleep. I take a few meds for blood pressure, but that is (I'm told) not associated with MS. Calcium/magnesium works quite well for the leg cramps.

     

    Do you have a personal philosophy that has helped you to cope with having a chronic illness?

    I've always been a take-it-as-it-comes person. I have never been a worrier. As trite as it has become, I believe in "it is what it is." It has been hard to accept the loss of the things I've lost, and hard to learn to live without them. It had been hard to learn to ask for and accept help. But since I was in high school, I have been a student of Buddhism and Zen and Taoism, which teach me that each day is...just what it is. This is my body, and there are some things it can't do. Whether it is ms or aging, or both, who knows. I don't know if there is a reason for this to have come into my life, maybe to further teach me about humility and acceptance and the importance of looking inward, I don't know.


  • My daughter was diagnosed out of the blue back in 2000 with an end-stage heart disease, and ended up getting a heart transplant. During her illness - which was very scary - and her recovery, we all learned to take a half-day at a time, and we followed her lead in treasuring each moment. There was an incident where she fainted and fell and hit her head, and had a mild seizure, and stopped breathing. I gave her a few breaths, and she started again, but while we lay on the kitchen floor, I went from asking her not to leave me (she was not conscious, so I don't know if she heard any of it), to suddenly realizing very deeply that none of this was in my hands - there was something - I still have no name for it - that was in control. Her living or dying was not in my hands, and I told her that if this was the time for her to go, I was ok with it, and would learn to live with it. That remains a very powerful experience for me, and guides me still. None of this is up to me. Only my reaction to it is entirely my responsibility.

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    What advice would you give to someone who has just been diagnosed with MS?

    Relax, take a breath. Then take another breath. Keep doing that. Your life has most likely changed, and will most likely continue to change. Learn how to take care of yourself. Find people you love who love you and hang out with them. Take a breath, then take another one, and keep doing this.

     

    What is the worst thing about this illness?

    The worst thing for me is accepting the loss of the things I loved - working in the woods with chain saw and axe, hiking and climbing, skiing with my family. The other thing is the uncertainty. Not knowing, when I go to bed at night, if I will wake up blind, or not be able to move my legs, is difficult. Not knowing if this new ache or weird sensation is MS or just being 50 is hard. My wife having to spend more of her free time doing household chores I just can't keep up with any more is hard.

    But the worst thing is the uncertainty. Will I end up in a wheelchair? How much longer am I going to be able to climb the stairs? The only thing I am certain of is that MS will never go away.

     

    Are there any silver linings to having MS?  If there aren't talk about that too.

    So far, I have found nothing good about having MS. The smiling faces in the MS magazines, in the ads for rebif and copaxone et al, that try to tell me how great it can be to live with MS are crap. Multiple sclerosis sucks.  Wouldn't wish it on my worst enemy.

     

    Do you believe that we will see a cure for MS in our future?

    No. I think that unless there is a complete revolution in how we live our lives - in every way - there will be increases in disease. The problem is a fundamental imbalance in almost every aspect of how humans live their lives. We go through life, most of us, most of the time, with our eyes closed, doing pretty much whatever we want, not thinking that there are consequences for everything we do. It's a homeopathic approach, looking at everything together as the body. There is fundamental imbalance in the body.  Disease (get it? dis-ease?) is just a symptom. And until the imbalance is fixed, there will always be symptoms.

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    If you could tell all the doctors and neurologists something that they would listen to, what would it be?

    What I am discovering is that I came into this disease knowing nothing about it - symptoms, treatments, any of it, trusting neurologists to steer me through it. I would tell neurologists to be more aggressive in informing their patients about every option, and every recommendation for making their lives better. It is up to us as patients to choose what is right for us, but they are supposed to be the experts. I want to be shown every door.

     

    Last thoughts?

    Hopefully these won't be my last thoughts....

Published On: November 17, 2008