Sunday, January 31, 2016

Living with MS

Let me just get this out of the way. MS (Multiple Sclerosis) stinks!
This blog is for my brother Matt O. who has MS.
He said he wants to write a book, I told him I didn’t think I could write a book but a blog, I could certainly do that.  So between my sisters and I, this weekend we chatted with Matt and took some notes to share Matt’s voice- because he still has that, even if he can’t write it down for you.

A little background, Matt is my older brother.  We come from a family of six. In order:
Dorene, Paul, Robin, Todd, Matt and Kellie (That’s me).  Our father passed away in 1983 of lung cancer and our mother passed away in 2010 from pancreatic cancer. (Cancer also, stinks!)
Matt is married to Cindy for 32 years, and they have four children, Katie (married to Ryan), Joey, Andrew and Julia and with not just one, but two grandchildren on the way.

Matt has been living with MS for some time, I don’t remember exactly when he was diagnosed, I know my mom was still alive and I know they suspected it years before but was never diagnosed.
His first symptoms were his failing vision. I remember the day he couldn’t get his drivers license renewed, it was on his birthday and my mom called to tell me.  He cried. I remember going to see him that day.  He still worked for a time after that, his buddy picked him up for work.
Work became harder and harder as the vision and his balance deteriorated.  He medically retired from Ford. He is a pipe fitter.  (And one of the hardest workers I ever did know)
It took him three times to receive disability benefits although he can’t walk without assistance and now is mostly in a wheelchair and he can’t see well enough to really do anything.  He isn’t completely blind, but by the legal definition, blind.

Matt gets really frustrated with his illness and this week was especially hard.  I don’t know that any “thing” made it worse, he said the “illness is just catching up with me”.
He said he feels useless and sometimes wishes he just wasn’t here.  That’s hard for a lot of us to hear.
He just wants to contribute, but he doesn’t feel like he does.  He knows that we all have our lives and jobs and kids, etc….etc… etc… “You have a life, I get that”, he told me. And while he fights this illness my life, your life, it goes on…we keep moving forward a day at a time but for Matt, he’s stuck in neutral. He can’t go anywhere (without help), he can’t read if you send him a card, he can’t write because his dexterity has deteriorated to the point where he even needs help to eat.  He said it’s embarrassing to drop things all the time and sometimes it’s easier not to eat.
He said he still has a brain, and he just wants to talk. So we listened.

Matt said he wants people to know he is not lazy. "I really just CAN’T Do what I used to do."
(I remember once he told me he felt like a total failure, as if he asked for this….)
But he knows it’s not his fault, it’s not anyone’s fault, but he is still frustrated and tired.

Matt loves to talk to older people, because he said “They have done it all and they have something to contribute” and “I just like to listen”.  He remembers things from yesteryears, that even I don’t remember. He remembers people, even if he doesn’t always remember faces, he remembers names.

This disease is hard and it affects everyone differently and even though to look at Matt O. you think he looks ok….he’s not. You can’t see what MS does to a person like you can see what happens to someone with a physical injury or bruises, but he is bruised on the inside and it’s hard to explain.
He knows he doesn’t always say the right things, but his brain still works.
And so does his voice and Matt O…. I can listen and tell your story.