A brief synopsis of MS in my life...

So I’ve told you a little about how all this started last year, but I thought I’d share a piece I submitted to the National MS Society about a month ago for a contest they were holding. I’m proud to say I was a finalist, but didn’t make the top five. Since I didn’t, I can share this in my blog!

Do you remember being 17 years old, and the plans you had for yourself, everything you would do when you were finally in control of your life? My plan was to marry well and throw parties.

Then I was diagnosed with Muscular Dystrophy. Six months later the diagnosis was reversed. I heard MS the first time when I was 31, when a second neurologist tested me for it, but still didn’t solidify a diagnosis. I’ve spent years denying how I felt and “soldiering on,” wondering why I couldn’t do all the things my friends did in a day, and so did my husband. We eventually divorced.

With no diagnosis, I doubted myself, and denied what my body was saying.  When I was told I indeed had Relapsing Remitting MS at 41, and I felt vindicated and relieved.  I learned the fatigue I have always felt is part of MS.

The fatigue cost me my job, and I applied for disability through Social Security. I was told I’d be denied but then to fight it. The attorney I consulted told me I would lose because I was too young. “Okay,” I thought, “I’ll just ignore myself some more.”

I worked until I could literally work no longer – last year. An MRI confirmed that I have graduated to Secondary Progressive MS with relapses – up to 80% of people with RRMS do. I was measured for a wheelchair, and I got a walker to use around home.

I applied for disability again, and this time I was approved. The government finally acknowledged my reality – now I could, too. But there is no work, my children are grown – how, in this world that promotes the notion that the best people are the “human doings,” do I matter at all?

Well, I am blessed to know I am a child of God.  I know that I am precious in His sight, so the world’s view of me matters less than it once did.  I can truly assess how I’m feeling, physically and mentally, and do what is best for me for that day. My goal every day is to “represent” well.

I have stopped thinking I “must” do anything to earn the “right” to take care of myself. I still sometimes stubbornly do things, and then I pay for it!  The key for me has been to accept myself and strive to stay in my new reality, with grace. Of course there is grief for things I wanted to do and probably never will. The nice thing is that I don’t have to deny how I am. Some days I can do some writing, and some days showering is my big “tah-dah.”  Many days, I feel like all I can say is that I grew my hair and finger nails.

 
I never dreamt I’d be divorced and disabled, living on a quarter of what I once made, but I couldn’t control those things. I do still control my attitude and the light I shine on others, and I’ll do my best at that for the rest of my days.