Sunday, May 8, 2016

A Tribute to My Mom, Who Makes MS Easier

Happy Mother's Day to all of the mothers out there, but especially to my mom! You may have read her guest post and seen me mention her from time to time on this blog, but I thought it high time to write a little bit here about not only just how great of a person and mother she is generally, but also about how incredible she has been throughout these last almost-10 years with MS as a support, an advocate, a caregiver, and a friend.

From The Daily Quipple. Check out today's Mother's Day quipple as well!

My mom is truly the best person I know. She's a woman of integrity who is full of compassion and love for others, and she has a fabulous sense of humor. My siblings and I had great childhoods, even during difficult times, because she made sure of it. I could go on and on with more details and stories about how great she is, but I'll move on to the MS-relevant side of things.

I realize I've never fully shared my diagnosis story or all that much about the early days with the disease on here. It's something I plan to do soon, in conjunction with the upcoming 10-year anniversary of my diagnosis. But I'll talk a bit about those early days right now. I was going into my second year of grad school in Michigan (12 hours away from home in Minnesota) when I knew something was wrong. I really had known something was wrong for months, but it wasn't until just before the school year started that things were getting worse and I knew I couldn't deny it any longer. I called my mom and told her what was going on and I went to clinic on campus that day at her behest. The symptoms weren't super active at the time I was at the clinic, and the doctor I saw pretty much just sent me home. A few days later, my mom was there with me. And she saw me very rapidly deteriorate before her eyes. When I went back to the doctor a few days later, I failed the neuro exam spectacularly and was told I needed to see a neurologist and have an MRI immediately. The diagnosis was pretty devastating to both of us, perhaps especially so because neither of us knew much of anything about the disease. My mom checked out every book in library about MS and we both did a lot of reading.

She was with me through the first steroid infusions and put up with me during my extremely agitated and sleepless steroid state. She drove me 12 hours to my home state to see an MS specialist neuro (at the recommendation of the local neuro).  She drove me back to Michigan. She saw me through more steroids. She ended up taking a leave from her job and essentially moved in with me in Michigan for several months, because I was unwilling to quit grad school despite the doctor recommending that I maybe should. Since I was having trouble walking and having trouble with my vision and with my bladder and everything was just exhausting and hard (and grad school is exhausting and hard to begin with) and I needed help, she was there. To support me in continuing to pursue my dreams and goals even when it was sometimes feeling pointless. To support me in dealing with my new life and this new strange thing taking over my body. She wasn't with me the whole year, but she was there quite a lot, and I don't think I could have done it without her. I finished the school year, having earned my Master's degree and a few extra honors to boot, largely thanks to my mom and her support.

That was only the beginning, though, and my mom has been just as vital since then. She's been there as I tried drugs that didn't work, and she's helped me as I made decisions about what drug to try next. She has stood up for me to those of the "but you look so good" camp. She's really the only one, other than my neuros, who saw me at my absolute worst, and plenty of my not--the-absolute-worst-but-still-bad times. She's the only one in my life who really, truly knows what this disease looks like, or can look like, up close. She has born witness, which feels like an important and powerful thing to me. It makes me feel less of that certain kind of lonely that life with this disease can make a person feel. She's in this with me, and has been from day one.

Thanks, Mom. For being awesome and funny and the best mother. But also for being with me on this wild MS ride, and making sure I don't fall off. For sharing the load, and then some. For laughing with me and crying with me. For continuing to support me as I follow my dreams and I pursue my goals. I desperately hope there's a cure for MS someday, certainly, but in the meantime my greatest hope is that all people with MS have someone like you in their lives. It makes it a whole lot easier.

Sure, I could have shared a nice picture, but I chose this one for a few reasons:
1. What am I doing?! Apparently turning around to look at something
my mom is pointing at. But why in such a weird, theatrical way?
2. This picture is taken in our favorite place in the world, Colorado.
And on a trail with especially important memories.
3. I didn't ask permission first to share a picture of her, and I figured this one
would be safe, as it's not too close up, and the focus is on my weirdness.
[But I'll take this down if you want, mom!]

1 comment:

spencer said...

I really appreciated reading this post!