I received an email from a DELIGHTFUL CHEESE reader, responding to my call for a "draft" here on BrainCheese...KARLA (who describes herself as "lurking for a while") writes the MS Newsletter for the Multiple Sclerosis community at HEALTHTALK (link will take you right to the MS site).I was very touched by her submission, which is heartfelt and expressive. It begs the question, "When do any of us really GET it...really KNOW we have MS and accept the uncertainty of our futures?" I'm still "getting" it...sometimes with ease of knowing and sometimes like a frying pan *upside my head*. No matter where each of us are in our journey with this disease, I believe we can ALL relate to her words.
So, without further blather from me, I give you KARLA:
At three years in, I get that I have MS. I even get that it could change my life as I know it. After the severity of my first attack – which left me half paralyzed, dizzy, unable to walk with slurred speech, trouble understanding things and even some hearing loss and double vision - it would be hard not to get that.
But at three years in, I’m only beginning to realize that I didn’t “get” that this is forever.
I mean, I’ve known from the beginning that this is a chronic, life-long condition without a cure. I know. But I didn’t know, you know?
Relapsing-remitting MS, it was described to me, would come and go. There would be bad days, and days I forget I even have it. And the degree to which I recovered from that first attack proved it to me – there I was just months later with a crooked smile and a nose I can wrinkle on only one side, but generally the same girl I was before. So I imagined a future using the past tense.
“That attack sucked”
“That was a rough part of my life”
But scan after scan and lesion after lesion the past tense never came. Three months at a time was the longest I ever managed to go without new symptoms. And then recently I had an 8 month winning streak – practically holding my breath the entire time – only to discover on the culminating MRI that there were no wins after all, just new, quiet lesions.
This is forever.
And I wish I had something punchy and optimistic to say about it. Don’t get me wrong, I’m not jumping out a window or anything. I knew on a logical level all along what I might be in for, and I can still do almost everything I want to. I’m damn lucky, really. But the reality – the kind of knowing in my bones - that I might never have a day (let alone a week, a month, a year or a decade) where I can forget that I have MS is just sinking in for the first time. And I’m not sure what to do with that just yet.
But at three years in, I’m only beginning to realize that I didn’t “get” that this is forever.
I mean, I’ve known from the beginning that this is a chronic, life-long condition without a cure. I know. But I didn’t know, you know?
Relapsing-remitting MS, it was described to me, would come and go. There would be bad days, and days I forget I even have it. And the degree to which I recovered from that first attack proved it to me – there I was just months later with a crooked smile and a nose I can wrinkle on only one side, but generally the same girl I was before. So I imagined a future using the past tense.
“That attack sucked”
“That was a rough part of my life”
But scan after scan and lesion after lesion the past tense never came. Three months at a time was the longest I ever managed to go without new symptoms. And then recently I had an 8 month winning streak – practically holding my breath the entire time – only to discover on the culminating MRI that there were no wins after all, just new, quiet lesions.
This is forever.
And I wish I had something punchy and optimistic to say about it. Don’t get me wrong, I’m not jumping out a window or anything. I knew on a logical level all along what I might be in for, and I can still do almost everything I want to. I’m damn lucky, really. But the reality – the kind of knowing in my bones - that I might never have a day (let alone a week, a month, a year or a decade) where I can forget that I have MS is just sinking in for the first time. And I’m not sure what to do with that just yet.
1 comment:
Very poignant ... something all us MSers "get" and can relate to. But Damn Lucky? Why? because you're still alive and capable of wiping your own butt? Truly I hope it NEVEr fully sinks in with you, because the MS vortex of Realilty Sucks. Kudos to you for remaining hopeful, because we all need Hope, right Braincheese?
A quote sticks in my mind: That through our endurance ...we might have hope.
Definitly takes endurance to struggle through the MS maze of lesions affecting our bodies; an undertow that drains our energy and seizes our minds.
But as Gloria Gaynor sings, "I will survive." -- as long as I still have Some quality of life that is :-)
As to what to do with your knowlegde that MS has taken permanent residence in your body:
Getcher body Rest, then go boogie on down the road (in other words ... keep your Ars moving and stretching to prevent MS Rigor Mortis from taking over) Oh, and NEVER FORGET TO TAKE YOUR ANTI-DEPRESSANTS :-)
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