Saturday, July 16, 2011

What Is Your MS Motto?

I was presented with  this question the other day and immediately the response that jumped to mind was a line from a really corny movie Tim Allen starred in called "Galaxy Quest" back in the late 90's.

"Never give up; never surrender!"

But as corny as it sounds, as cliche as it is, I guess it really is what I try to live by.

I mean, if someone admits to having an MS Motto you've got to expect what follows to be pure corn. Who has a motto anyhow?

So now I've admitted that I have adopted this one, so I better make sure it's got food and water and I walk it every day and play with it and get it all its shots...

I never was very good with nurturing stuff. My oldest son accused me once of "trolling for victims" when I was browsing the garden section at Wal-mart. It's a miracle my 2 kids have survived past the needy diaper stage, but somehow they did.

And now I'm 50 and I have a motto.

So, to all you MSers out there who need encouragement, all kidding aside, never give up, never surrender.

It was only 4 years ago that I got into the TRANSFORMS trial in Jacksonville FL for what we've come to know as Gilenya (but it will forever hold a place in my heart as Fingolimod). In the years and months leading up to this leap of faith into the lifestyle of the lab rat, I had some desperate moments.

My granddaughter once saw me in my bathrobe when she was quite tiny and not the master of the English language that she is now at the ripe old age of nearly 9. Instead of asking if I had just woken up, she asked "Did you just come from the darkest part of your day?"

I've never forgotten that and back before the trial it seemed like all the parts of my days were the darkest. I didn't see any glimpse of hope in any ray of sunshine peeking over the horizon. I was relapsing all the time. I'd get hit by one wave of attacks and slowly start to gradually recover when BOOM! I'd be hit by a new attack all over again. I never got a chance to  relax and calm down and catch my breath. Every day seemed a struggle that kept my anxiety level on *overload* worrying what was going to come next. I daydreamed about what might be the least painful way out.

I look back on that period in my life, from 2005 to 2007, and I really think if I hadn't been such a chicken and scared of death, I may have done something drastic and ended it all. I was mentally and physically worn out from just existing. My son was 7 in 2005 and he needed  me. That, I think, was a big part of why I kept going.

Now, 4 years after starting the trial, without a single relapse since my first taste of Gilenya, I look back and realize what all I would have missed out on if I had given in and given up. My son will be 13 next week, we've moved in with my elderly mother to help her out (I resist saying "take care of her" because she's fiercely independent), and I've gotten to see my granddaughter blossom.

No, I haven't used the time to do anything especially wonderful with myself. My greatest donation to mankind, I think, is that I agreed to be part of this trial. If not for all the desperate MSers out there at our wit's end looking for something that would work to slow this monstrous disease, there might not be a pill on the market. Being part of that felt good.

So if you are reading this and ready to call it quits, please be a procrastinator like I was. I was in an awful place then, but THINGS DO CHANGE. I am living proof.

I had 2 canes and a walker I relied on back then. I don't even know where they are now.

Now, I'm not touting "G" to be a miracle cure or anything remotely like that. Heck, there might even be hideous long-term side effects I have yet to realize. But just getting to the fork in the road where, if I go one way there's a bullet with my name on it, and if I go the other there might be more forks, more choices, more hope. That's all that Gilenya gave me. I took that path and have now enjoyed 4 more years of paths and forks and choices.

Whatever your fork path choices are, choose to try something new before you take the Dead End.

Things can get better. Reach out to someone who will lend an ear - post a comment right here if you like -- but don't give up hope because research in MS is moving at the speed of light. Your  magic bean might be right around the corner.

This didn't start out as a motivational speech trying to save the suicidal among us, but it wasn't until I started typing that I was taken back to that time and reminded of how desperate I felt. I know I'm not alone, and feel a sort of responsibility to hold my hands out to help catch the others who are about to fall down and give up.

So, in 5 words or less, try my motto on for size...

Never Give Up, Never Surrender!


P.S. It sort of creeps me out how this post evolved since it's not my usual style. I do believe that all things happen for a reason. I just KNOW someone out there who reads this needed to hear this at this exact time in their life. For that reason, I'm letting it stand as is. No trashing the post for the excessive corn content. :)

If you know me and read me often, I'll get back to the meaningless drivel promptly, I promise.


  1. Yay, Jeri! I loved this post--and the few others I have perused since you sent me that message over at faceplace--and I am charmed by your writerly voice. First things first: I am so happy for you that you have had an opportunity to trial a drug that has apparently so positively suppressed your MS--bitch of a disease (is it a condition or a disease or a...what?), and it sounds like you have come really, really far. I am happy for you and for your children and grandchild and sweet mother.

    Second things second: I will follow you here; there is much, much more of you I want to read!
    Look for a reply on your specific question over at the faceplace, and KEEP. WRITING.

  2. Thank you so much for writing this post. It has almost brought me to tears. I was recently diagnosed in April and just started Gilenya this past Monday. It seems like every time something changes with my MS...good or bad...I am a total mess the entire next week. My emotions are very raw and I still am grieving my old life and what I could used to do. I just started following your blog and I'm hooked. :) Thank you for sharing your words of encouragement!

  3. ahh yes indeed that relentless 'anxiety overload' factor - thanks for this post.

    Starting on the 'G' in September - reading about yr first hand experience has been an absolute boon.

    cheers muchly

  4. Tonya, maybe you are who it was meant for. {{hugs}} Hang in there, honey. This disease sucks but here's hoping Gilenya helps you!

  5. Che koala, glad I could help. :) Hope your experience with G is every bit as good as mine has been.


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