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I’ve noticed quite a few articles on MS popping up on my AOL homepage recently. Some good, some bad, but almost all of them a little too…um, I guess optimistic is the word I’m looking for. Today’s MS article du jour is Living Well With Multiple Sclerosis. I admit, it’s probably not a good time to be writing about this since my MS is giving me problems right now, but I saw this article, read it, watched the video, and none of it elicited much of a response from me except maybe, “yeah, yeah, I’ve heard it all before.”

And then I read the comments and they finally pulled forth a reaction, especially the first one from someone named Dave Teems. His story is eerily similar to mine; diagnosed late in life, early retirement because of the disease, and as Dave says, “I LOL when I see this stuff”–he’s referring to the video and articles that all seem to paint such a rosy picture of dealing with MS.

Don’t get me wrong, I know it could be much worse, and am thankful it isn’t, but sheesh, I wish these people would tell the truth about what an MS patient goes through. Like right now, I’m sitting here with a patch over my right eye because my vision in that eye is…wonky, that’s the only word I can think of to explain it. Not blurry exactly, but…wonky and it’s easier to focus with only my left eye. Vision problems seem to be the most chronic symptom of my MS.

I say MY MS, because that’s what it is. Given the nature of the disease, every single person who has it will experience symptoms that are unique to them and the symptoms are rarely the same from day to day. I’ve often said the only thing predictable about MS is it’s unpredictable.

Add the vision problems to the almost daily fatigue and I’m here to tell you MS is not a walk in the park. Sure, you can live with it but at times it can be extremely hard. So, I know exactly how Dave feels and I agree totally with him when he says about the video:

“…the disease is not the pretty, cut the veggies on the board that the video makes it out to be. I LOL when I see this stuff. This may be that Woman’s life, but it’s certainly not mine.

And then further down in his comment:

“…the issues that I have with the video are similar to the issues that I have with the National MS web site. They “Paint” MS as a disease that is some how very livable, non-toxic, and more of a bee sting on your life than what the real truth of MS is on one’s life.
It ain’t all music in the background……summer breeze’s and butterfly’s out the window.  Talk about the REAL effects of the disease. Like digestive issues, plumbing issues, constant fatigue, MS pain, cognitive issues, ect.”

It’s almost as if he’s reading my mind. MS definitely isn’t all summer breezes and butterflies out the window…but the article does get one thing right, if you find the right coping mechanisms, it is possible to live a full life–well, maybe full isn’t the right word, more like, a good life. I agree with all the tips the article gives but I think the one thing they neglected to mention might be the most important thing; your support group. Having a good support group is essential because it’s the people in your life that make the disease bearable.

I read something someone wrote about me the other day–yes, this is a lot like when your mom used to tell you not to eavesdrop because you might not like what you hear about yourself–and while this person had a few bad things to say about me, the one thing they said that I objected to wasn’t negative and IMO, it wasn’t intended to hurt me in any way.  I don’t have a problem with someone stating their opinion of me on their blog because hey, freedom of speech as Karen Scott says on her blog, “It’s my blog and I’ll say what I want,” but when I read “she suffers enough every day with MS,” well, let’s just say, I went a tiny bit postal.  I even wrote a comment worthy of the worst author in the world behaving badly, but thankfully, I caught myself before I actually hit the post button.

Why, you may ask, is that the one thing in all the bad things this person wrote about me that I objected to?  Well, in a nutshell, I don’t “suffer” from MS.  Yes, I have MS, but it does not define who I am,  and it does not control my life.  Do I wish I didn’t have it?  Sure, I also wish I didn’t have Type 1 Diabetes, but I do and I’ve had it since I was sixteen.  You learn to live with it, just like I’ve learned to live with MS in the few years I’ve had it.  And, you do everything you can not to let it rule who you are as a person.

The thing is…I consider MS more of a blessing than a hindrance.  I’m not saying it will always be that way, but for now I’m, well, I can’t say I’m happy that I have it, but I will say, it’s something I can live with.  Witness, the post I wrote around Thanksgiving of last year, My Silver Lining…, which listed a few of the reasons I’ve found to be grateful for MS.  And in that entry, I didn’t even touch on the biggest reason I consider it to be a blessing; the fact that if it weren’t for MS, I would never have gotten serious about trying to attain my dream of becoming a published author.

I readily admit, I went through several months of depression when I was first diagnosed, and boy, if depression isn’t suffering, I don’t know what it.  Luckily for me, when I was at my lowest, I managed to find hope again…in the playful scampering of a cat and the beauty of the world around me.  Later that day, I sat myself down at the computer and wrote out what I was feeling and what I had seen.  In the end, I had a rather lengthy–and I’ll admit, not very good–poem.  I also had a new outlook on not just the MS, but on my life as a whole.

I’m including the last few verses of the poem in this post for you to read–I’ll spare you from the first seven or eight which deal with the symptoms of the flare-up I was going through at the time.  Suffice it to say, physically, it was the worst I’ve ever dealt with, but mentally and spiritually, it was the best thing that could have happened to me.  I was sitting on the deck on a beautiful New England fall day and…well, I’ll let you read it for yourself:

From A New Resolve:

The cat draws my attention
as he pursues a twirling leaf.
His head is slightly
off-kilter,
his tail takes a
sharp westward turn,
his ears are
no longer symmetrical.

I give up, concede the
power of the monster in my life.
Struggling with despair
as I stare at the cat’s
re-arranged body,
and it occurs to me, he is
a cubist’s crowning achievement;
Black Cat Stalking by Pablo Picasso.

My eyes lift to the trees,
fall colors, not quite in focus,
reds bleed into orange,
yellows seep into green,
daubed on a background of dazzling blue.
as if I am adrift in
an impressionist’s masterpiece,
Autumn in Maine by Claude Monet. 

A hint of hope sneaks in,
this baffling disease
may hold me today,
but with that glorious
glimpse of the world
through the eyes
of my favorite artists,
I’ve found a new resolve.  

So, to the person who wrote those words about me; while it’s true I have MS, I don’t “suffer with it every day.”  There are countless ways in this world that a person can suffer, and yes, MS is one of them for many, but not for me, not right now.  Right now I’m holding hope firmly in my heart and God willing, it’ll stay there for a long time to come.

 

I wish the same for you.

Last week was an exciting week for me as a writer.  I received my signed contract back from my new publisher, L&L Dreamspell, along with a welcome from the owners, and an invitation to join their author group.  My days were spent up-dating my web site–which still needs a lot of work!–polishing the blurb for my upcoming book, Snow Shadows–I think I finally got it right!–and writing–or trying to write–a bio for my author page on LLD’s web site.  Ugh!  I really, really, really hate doing those things!  What I didn’t spend much time doing was writing.  I only managed to churn out a few thousand words and with Thanksgiving coming up this Thursday, I’m pretty sure I won’t get much written this week either. 

That sucks, but I’m not complaining.  I consider myself very blessed to have a book–or three–coming out in print next year, to be able to spend time working on projects of this nature–okay, let’s be honest here, to waste a lot of time doing what others could do in a mere fraction of the time I spend doing them–and to…well, I won’t say enjoy, but at the very least, to be challenged by what I’m doing.

I was never much for challenges before, but these days I consider myself something of an expert.  What happened to change me?  Multiple Sclerosis.  I was diagnosed five years ago and since then, challenges have become a daily part of my life because the most predictable thing about MS is…it’s never predictable.  I have days when I struggle just to get out of bed and get dressed and I have days when I start out fine then the fatigue suddenly descends and knocks me flat.  I have days when my balance is so bad I have trouble walking and I have days when my thought processes don’t click the way they should.  And then there are the days when the monster goes into hiding and I’m not even aware it’s there.  For me, as I imagine it is for everybody with this or any other incurable disease, each day is a crap shoot, you just never know what you’re going to get. 

The thing is…whatever challenge MS throws my way, each day is also a blessing because if there’s one thing I’ve learned from having MS, it’s to value each day and do whatever you can to make it count.  It’s a good policy to have, don’t you think? 

So this year on Thanksgiving if I’m asked what I’m thankful for, MS is going to be on my list–not for having it, but for the things it’s taught me.  Maybe I’m looking for the silver lining to this cloud that at times obliterates the sun from my life and at other times only hovers on the horizon, but it’s my cloud and it’s not going to go away.  I can either embrace it or let it smother me.  

I choose to throw a congenial arm around its shoulders and make it…well, if not exactly a friend, at least a bearable companion.