Why Are You Always Talking About MS?

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July 12, 2014 fayguilian 1 Comment

Although nobody actually has the nerve to say it to me, I am sure there are plenty of folks who are wondering why I always have to be talking about MS. So I figured it was time to make things crystal clear…about the whys, and the what fors.

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This beautiful piece is dedicated to MS awareness. Created by one of my former art students, Noor Al-Tajer.

I have been dealing with some type of chronic illness since about 1993. First it was UNKNOWN. Then it was Fibromyalgia. And then finally in 2004, it became apparent that the probable cause of all the strange symptomatic periods were related to the neurological disease Multiple Sclerosis.

There were years, between 1999 and 2004 when I really didn’t have any problems at all. I thought I had been cured…I can recall the day the change took place…It was in Barcelona, just after visiting Lourdes France. (another story)

But like many people with the beginning stages of a chronic illness I was probably having relapses and remissions.

Which meant that for 5 solid years I was able to live my life without the worry of fatigue, pain, or that incredible ‘weird’ feeling that accompanies this disease. And for those of you who don’t have chronic disease…don’t just gloss over the words PAIN-FATIGUE-WEIRD and say to yourselves, “But everyone has pain and fatigue, in fact I am very tired right now!”

Trust me, and I really do mean I hope you will have to trust me for the rest of your lives, I have had YOUR fatigue and pain, and I have had the new fatigue and pain that comes with chronic illness. THEY DO NOT DESERVE TO BE THE SAME WORDS.

THEY ARE NOT THE SAME THING.   They are as related as a dog is to a canary.

Just keep that image in mind the next time someone with MS tells you she is fatigued.

Anyway, that is the background – the chronology. And though it doesn’t sound so terrible, it adds up to more than 25 years of my life. More than a quarter of a century has been involved with either trying to get a diagnosis, or living WITH the diagnosis I have.

So what, you say? There are people with Cancer, way worse than me, right? And some people were born with disability, right? Yes …all true.

And I only have an invisible, inconvenient disease.

Which is one reason WHY I talk about it.

 

HERE YOUR EYE

You can’t pick me out of a crowd most of the time and say…”oh poor thing she has MS.” You can’t do that with the majority of people with this disease…in the beginning.

What we have is insidious. It slithers in silently, without fanfare and it runs through our bodies from the moment it starts until the day we die.   There are medicines to help us from hurting to some degree, and medicines to slow the progression to some degree, but we go to bed every night and wake up every morning knowing that nothing about our future is certain. MS can strike us down from running 10 miles a day to sitting in a wheelchair all within 24 hours. It can come with a vengeance and go into hiding just as rapidly or, it can come and not go away at all.

I travel. And I travel alone. Each time I do that it is a test of faith. Because I know that I can be somewhere, in some foreign country all by myself, and BAMM! An MS flare will start. I could be in real trouble. We all live our lives in faith that we will be here tomorrow, for nothing is certain, it is true. But I make every plan, every dream, every decision, with not just the knowledge that I am a mortal being, but with the reality that I am a mortal who has a time bomb ticking, and there is no time stamp detonator. I could go off at any moment.

I talk about MS because it is a HUGE part of my life. It has brought me challenges, and it has brought me blessings.

Yes, I said that.

I have met the most wonderful people in the world because I have Multiple Sclerosis. I have found out first hand about the caring and concern that others show to those in need. I have become more resilient, stronger, and more in touch with the realities and immediacy of life.

Most of you go along like you have all the time in the world to do whatever it is you are thinking about doing. “Oh I’ll just do it , TOMORROW.”

I know something very important that you don’t. Tomorrow ain’t always what it is cracked up to be.

Tomorrow is a very dangerous concept. Sure the world could implode tomorrow, or you could get hit by the proverbial truck, but not likely, so for the most of you, you are safe.

Me? Not so much. My tomorrow statistically has a GOOD chance of knocking me flat. I might not be as strong, or able to walk or speak clearly, or I might just be in too much pain to deal with anything tomorrow.

So if I have a dream, which I do, (many of them to be exact) I had better get on them TODAY!

Because if I wake up TODAY and it is a good day (all you MSers know exactly what I’m talking about) that means it is potentially a day for me to follow my heart and make my dreams come true.

I can spend that good day watching 12 hours of ‘Snapped’, but why not save that for a BAD day, when Snapped is more about a feeling, and less about the television show!

So you still don’t know why I talk about MS?

 

Because unless I talk about it, you will forget it exists, until you see me or someone you love in a wheelchair, with a walker, or using a cane.

Because you will not fight for me, if I don’t fight for myself.

Because, I can’t be a silent victim of a disease.

Because I am not held hostage to denial.

Because even though I have Multiple Sclerosis, I walk proud,

and I am thankful for the days I can walk.

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