Member Spotlight: 40 Years with Multiple Sclerosis - Part 2 | MyMSTeam

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Member Spotlight: 40 Years with Multiple Sclerosis - Part 2

Posted on August 27, 2019

If there is a better quote that captures the pain, hurt, fights, and consequences of having MS than “I wish I knew then what I know now,” then I’ve yet to hear it. And yet the question must be asked: is that quotation about me or more about everyone I held responsible for not understanding or caring enough when I was first diagnosed and for many years after?

I’ll be 60 in January and for almost 40 of those years I had made myself a martyr to the MS cause; my MS cause. Because it was all about me. It was only ever about me. Worst of all, to my eternal shame, I never gave a thought to my parents, powerless to help their son with multiple sclerosis.

Everything they suggested, and I mean everything, I rejected. Why? Because, as I saw it, they didn’t understand what I was going through, regardless of how they were coping. I wouldn’t allow them in. I was in my early twenties and I was insufferable. My belligerence was unforgiving. For them, I am sure, it was like parenting a toddler going through the terrible twos.

They didn’t abandon me. It would be truer to say it was the other way around. Mum and dad were as scared as I was, although I never admitted my fear. My pride was a wall that wasn’t allowing anyone to break through, even though it never stopped them from trying. They didn’t always get it right and the more they tried the more I resisted.

They suggested counseling. I agreed but it didn’t work out because the therapist who specialized in MS didn’t take my side, or at least that was the way I saw it. It was their dollar and I didn’t care for it, so I stamped my foot and petulantly threw it back at them.

Everything was a battleground. We could never meet in the middle because I wouldn’t compromise on anything they suggested, starting with diet. Back in the 80s I ate all the wrong things. Because I never gained weight, I refused to try a healthier option. If it ain’t broke why fix it, as the saying goes. Given what this blog is all about, the irony speaks for itself.

My parents are no longer here and I would give anything to have them back. To embrace them and say thank you for never giving up on me. To apologize for being that child because they deserved better. I know in my heart they unconditionally loved me as they loved my siblings, a brother and sister, who I also railroaded because it was only ever about me. Because I had MS.

This article was written by MyMSTeam member Martin as part of the Member Spotlight Series. Martin has secondary progressive multiple sclerosis and is a writer who often blogs about his experience with MS.

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A MyMSTeam Member said:

I've had it for 34 years. I've found some meds that help but not much. I'm also taking 15mg of times released morphine every 12 hours. I still hurt and… read more

posted about 1 month ago

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