MS and Me blogger Debra Gaston Brigman shares her most recent blog written last month. It is a very personal account of her MS Story.
DEBRA GASTON BRIGMAN
MARCH 18, 2018
MS is different for everyone. It’s never pleasant for anyone.
In multiple sclerosis (MS), damage to the myelin coating around the nerve fibers in the central nervous system (CNS) and to the nerve fibers themselves interferes with the transmission of nerve signals between the brain, spinal cord and the rest of the body. Disrupted nerve signals cause the symptoms of MS, which vary from one person to another and over time for any given individual, depending on where and when the damage occurs. (National Multiple Sclerosis Society)
This is MS Awareness Month. I have MS but this is the only time of year you’re likely to hear me say anything about it. People with MS don’t say much about it as a rule. Some fear professional discrimination. I have some true stories about that but will save them for another day. Others are reluctant to have their situation misunderstood. I get that. I can control what I say, but not what you hear. MS is a part of my life but it isn’t who I am. I was diagnosed a little more than 10 years ago. It’s probable that I’ve had it much longer.
There are four types of MS: Clinically Isolated Syndrome, Relapsing-Remitting, Primary Progressive, Secondary Progressive. I have the Relapsing-Remitting type. 85% of people with MS have this type, which is characterized by periods of activity, followed by periods of remission, followed by periods of activity, followed by periods of remission.
My first indication of something not quite right was in 1992, shortly after I moved to NJ with my 10 year old, very active, missing-her-friends-and-family daughter, to join my husband, and her father. (Same guy.) We were never separated by more than distance, but it was the nature of his job for him to be in one place with us often in another. We were sitting in church one sweltering July Sunday morning when I suddenly developed – for lack of a better descriptive – this visual static in my periphery. I could look straight ahead, like down a long tunnel, but it was very fuzzy around the edges. And glittery. Like the edges of the tunnel had been dipped in shiny, brightly lit, minuscule pieces of broken glass. I told my husband I thought we should leave. He told me to hold on, it was nearly over. By then, this was my thought, too. I didn’t die. I toughed it out, for about 20 minutes, and the “flashy lights” didn’t happen again for another six months. Again in another six. And another. And…
That was the basic pattern for a few years. Each time was a little less scary than the time before. I reminded myself that I hadn’t died last time and had no reason to expect I would now.
Life went on.
I thought I’d made a tenuous connection between stress and the visual static but was too busy – and not bothered enough – to collect data. Then it was gone. Or nearly. I just noticed one day that I hadn’t had “flashy lights” in a very long time. I’m sure I was grateful, but it had only been an annoyance and not a life changer, so I didn’t spend a lot of time thinking about it. I continued to do all of the things I’d always done. I wore a lot of hats: wife, mother, daughter, student, employee, friend, and neighbor. It was a very busy time for all of us.
Each of my hats came with it’s own special brand of stress. My husband worked crazy hours, which left me with a lot of responsibility and not a lot of companionship. My daughter, who’d had the run of a big farm with grandparents on one side and cousins on the other, was finding the adjustment to apartment living a challenge. (It was a nice apartment but still…) My father was a recent widower, and several states away. I was a college drop-out…times two, and had dropped back in, determined to finish this time. I kept books for my husband who, as a one-man corporation, was required to file quarterly. My friends were mostly long distance. My new neighbors were not.
Life and the list go on.
In 1995 we moved back to NC. I got a second degree, added teacher and mother-in-law to my hats, shared some of the care-giving responsibilities for my mother-in-law who was living (and eventually dying) with Alzheimer’s Disease, and took over winter care-giving responsibility for my aging father who came every winter from Ohio to stay with us until warm weather returned to the frozen North. Another busy time for all of us. And, yes, a little more stress.
Life was STILL going on.
FLASH FORWARD TO 2007.
By 2007 I’d developed a slight limp when I was overly tired or stressed. (I say slight because I was both those things most of the time but only limped occasionally.) I didn’t see a doctor about it because my theory is/was/will ever be that everybody has something. This one was mine. And…I didn’t want to be another Southern woman with a “condition.”
During an assumed-to-be unrelated follow up exam for a twisted ankle, my doctor said that, as a woman of a certain age, I should have a bone density test. I did, and although my bone density was just fine, THAT doctor remarked (in the presence of my husband) that I appeared to be somewhat unbalanced. When the cackling died down, he said he was sending me to a neurologist for further testing.
My doctors were very up front and I knew practically from day one that MS was the suspected outcome. Determined to be an informed patient, I did what every doctor tells patients not to do. I visited every medical website I could find, reading each scrap of anything that popped up pertaining to the diagnosis and treatment of Multiple Sclerosis. The news wasn’t good. I read with interest that stress, heat, and fatigue were the biggest irritants to the condition. Imagine that! There was NO CURE. I wasn’t overly worried, though. I had just enough name-it-and-claim-it in my soul to believe that if I didn’t think I had it, I wouldn’t have it. (When I was little, I thought I could turn traffic lights green, too!) The testing dragged on for months and dollars. At the time, an MS diagnosis was made only after ruling out everything else. To that end, I had every examination and test imaginable. I was poked and prodded, inspected and injected. I had CT scans and MRIs. Nerve conduction and reflex tests. Blood tests and pee in the cup tests. I even went to Chapel Hill for some bizarre vision screening test to see if I could differentiate optical illusion from reality. Really? That’s always been a struggle.
Being able to respond “no more than anyone else” to the list of symptoms I’d memorized – anxiety, balance, bladder dysfunction, bowel problems, cognitive changes, depression, dizziness/vertigo, mobility issues, walking issues, numbness, pain, Pseudobulbar Affect (PBA), sleep issues, sexual dysfunction, speech difficulties, spasticity (stiffness), swallowing disorders, visual disorders, tremors, weakness – bolstered my conviction that I did not have this loathsome disease. I did still have the occasional limp and tired easily; the “flashy lights” popped up once in a blue moon, and I’d taken a few nasty falls. None of those things were on the list – as I chose to interpret it – and I clung fast to my story that all this testing had been a huge waste of time and money.
When the jury came in – after more frustration, aggravation, humiliation and agitation than I’d ever endured – the verdict was MS. NO CURE. (Side note: I’d had a false positive for Lyme Disease early on and was thrilled because there IS a cure for that. Imagine being shattered at NOT having Lyme Disease!) My brain and spine had several plaques or lesions that, after ruling out other diseases that can cause such things (and some of those can be pretty nasty!), could only be MS. The good news was that I had no current “hot spots” and might never develop new symptoms. The bad news was that there was no way to accurately predict.
I was sent home with an armload of materials about this medicine and that medicine. More reading. And more. Again, NO CURE. The meds treat the symptoms and limit progression. And, almost all of them make you feel like you have the flu. EVERY. SINGLE. DAY. Some of them can stop your heart. I said, “None for me, thanks,” and went home to feel very sorry for myself…for about two days.
I was soon on line again, this time looking for ways to help myself. The recurrent word now was healthy: healthy eating, healthy sleeping, healthy thinking, healthy living. I set about making changes. I want to be clear that while what I have done has worked well for me, I am in no way suggesting that anyone should follow my example. I have read glowing testimonials of people who have been helped immensely by following their doctor’s directives and taking MS meds. MS is different for everyone, and care plans have to be individualized as well.
That was about 10 years ago. Today I’m fine. I know that tomorrow, next week, or next year, I may not be. I have no symptoms other than the limp that developed in 2007, and even that only when I am very tired or stressed. (I teach Middle School so how often do you suppose that is? Hmmm?) I still tire easily. I like something Anne Romney said when her husband was running for office a few years ago. She, too, has this disease. Loosely paraphrased, she said that when a healthy person is totally exhausted and an emergency comes up, they still have an energy reserve they can pull from. People with MS no longer have such a reserve. When our energy is gone, our energy is gone. I know and accommodate. I have never missed a single day of work due to symptoms of MS, though I have a missed a few for routine doctor’s visits. For me, MS wasn’t a death sentence. Just a nuisance. A very big, very real nuisance!
According to the Multiple Sclerosis Foundation, more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States. The odds are high that you know, or will know, or maybe will even be someone with MS in your lifetime.
No one knows for sure what causes MS. It’s an autoimmune disease. The body’s immune system attacks its own tissues and destroys myelin, which protects nerve fibers in the brain and spinal cord. Statistically, people in cold climates get it more often than people in warm climates. Some studies indicate GMOs, chemicals in the food chain, aspartame, red meat and antibiotics as possible reactants. No one really knows. I sometimes wonder how much my addiction to diet soda from 15 to 50 had to do with it. When the guilt of that stupidity threatens to be overwhelming I claim the “no random molecule” stance. Whatever the cause, it is what it is. I don’t eat red meat. Don’t drink soda – diet or non. I avoid junk food and city living. I wake up each day glad that I did, and try to make sure I’m too busy to think about this much. I live my life breathing in, breathing out, and repeating.
Most people, including me – pre-diagnosis – don’t know much about MS. There’s a whole slew of misconceptions. People think MS can be caught. It can’t. People think it’s recompense for bad behavior. It’s not. People think people with MS are intellectually challenged or mentally deficient. They aren’t. People think MS is a death sentence. Oh, come on! We’re ALL dying. I’ve read it will shorten my life by 10 years but I’m already 65 so it will have to hurry.
I know that I am very fortunate. MS can rob its victims of so much: vision, mobility, cognition, continence, independence, self-esteem, sense of purpose, and peace of mind. Oh, and here’s a big one! MS can rob its victims of a sense of belonging. I am a very independent person but I remember that flood of feeling at diagnosis, and in the weeks and months just after. Confusion. Fear. Anger. More than anything else, I remember feeling alone. I don’t feel that way now, and didn’t for long. Life has set me up with a tremendous set of coping skills. Some people haven’t been so fortunate. For them, the isolation of having an incurable yet often invisible disease is unbearable.
I’m not sure why I wrote today. Maybe because it’s MS Awareness Month and most people are still not aware. Maybe I thought that by putting my face on this disease I could make just one person more aware. Help pave the path for a fellow warrior. If you know someone with this disease, be kind. Don’t avoid them because you don’t know what to say. Ask how they’re doing. If they say “fine,” believe it. If they’re having a good day, let them. No one wants to be defined by a disease. If they say, “not so fine,” believe that, too. If they want to talk, listen for a minute. You’d want someone to do that for you.
Remember, it’s incurable and often invisible, but the struggle is real.