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

Connect with others who understand.

sign up Log in
Resources
About MyMSTeam
Powered By

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. Read Part 1 & Part 3 to Martin's story.

Do you want to be a part of the MyMSTeam Member Spotlight Series?
Let us know here: support@MyMSTeam.com

Posted on August 27, 2019
All updates must be accompanied by text or a picture.

Become a Subscriber

Get the latest articles about multiple sclerosis sent to your inbox.

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

Related Articles

Dani had just started a new job when she was diagnosed with multiple sclerosis.“I had to advocate...

My Advocacy Tips: Taking Care of Future Me With MS

Dani had just started a new job when she was diagnosed with multiple sclerosis.“I had to advocate...
In a recent survey, 81 percent of MyMSTeam members reported that multiple sclerosis (MS) negative...

Stress, Affording Treatment, and Quality of Life With MS: See Survey Results

In a recent survey, 81 percent of MyMSTeam members reported that multiple sclerosis (MS) negative...
YogaVista.tv and MyMSTeam have partnered to bring you these mini-lessons or "yoga snacks."

Easy Movement Videos for People With MS

YogaVista.tv and MyMSTeam have partnered to bring you these mini-lessons or "yoga snacks."
After getting her official multiple sclerosis diagnosis in 2022, Karina Llamas decided that inje...

How I Got Over My Fear of Needles To Have My Best Shot With MS

After getting her official multiple sclerosis diagnosis in 2022, Karina Llamas decided that inje...
In partnership with GoodRx
As time goes on, we encounter a staggering number of changes, and we feel the growth of our new w...

Ask the MS Warrior: How I Explain My ‘Bad Days’ to Others

As time goes on, we encounter a staggering number of changes, and we feel the growth of our new w...

Recent Articles

Meet Dani, Todd, and LaTasha. Real stories from real members.

MyMSTeam Stories: Real Stories From Real Members

Meet Dani, Todd, and LaTasha. Real stories from real members.
Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...

Preventing MS Flares: Jenny’s ‘Goldilocks’ Self-Care Checklist (VIDEO)

Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...
Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...

How an MS Symptoms Diary Helped Jenny Get the Right Care (VIDEO)

Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...
Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...

How Diet, Stress Reduction, and New Treatments Helped Reduce My MS Flares (VIDEO)

Meet Jenny | Meet Dani | Meet LaTasha | Meet Todd | Return Home Sponsored content appears before ...
Learn how to manage MS symptoms and prepare for your doctor appointments.

Relapsing MS Playbook

Learn how to manage MS symptoms and prepare for your doctor appointments.
Here are the top questions Dr. Nicholas is asked about MS symptoms and treatments, along with her...

Managing Relapsing MS: Frequently Asked Questions About Symptoms and Treatments (VIDEO)

Here are the top questions Dr. Nicholas is asked about MS symptoms and treatments, along with her...
MyMSTeam My multiple sclerosis Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close