I have a family member with Multiple Sclerosis. She just learned an article she wrote will be published in Multiple Sclerosis Magazine Winter Publication. I think it is insightful on many levels and wanted to share it.
MY MS COGNITIVE REALITY by Chris Noellert-leader of the MS Invincibles support group
The cognitive effects of MS are often over looked and under discussed with our Doctors. For MS patients like me it’s a good news/bad news reality. Our brains aren’t displayed with a cane, wheel chair or scooter. Having invisible symptoms on the outside might make us feel and seem well “stuck on stupid” an MS term we use.
A tolerable acceptance strategy I use is laughing instead of crying for myself. Often non-MS folks seem to nervously chime in with your laughter. Kind of like a Lucille Ball moment! Just call me Lucy!!
I had a Neuropschye Evaluation last year. Boy was that a big pill to swallow! I felt like I was back in grade school knowing full well that I was failing the test! It was undeniably a pathetic episode for me!! Having been a smart person in my previous life (BMS-before MS) has brought my brain dysfunction right to the surface. That was a true test of my denial skills. I kept waiting for his unavoidable facial reaction.
The Neuropschye standing up with all my evaluation papers in tow saying (in slow motion) “I think we’re done here. Your mental capacity is…well so… deteriorated!!
Making peace with that reality was very, very difficult for me!
I decided in that moment that laughing instead of crying about myself will be my chosen coping method!
#### everyone who doesn’t understand what it’s like to have your brain power slowly diminish!!
At least when I do the on-line brain scramble games I’m by myself and can marinate in the reality of how things are changing for me.
On a brighter side, I must remember that I’m not dying from MS.
A problem free life is promised to no one! Everyone faces challenges in their life. (physical, emotional, medical, relationships, financial, etc) Looks like MS is the challenge I got! Why?
It must be that I had to learn this particular lesson. Imagine if you had no challenges in your life! No challenging experiences to learn from!
Imagine if your spirit life form kept sending you back with the same issue to deal with?
As someone who believes that in each lifetime you must learn how to handle certain challenges, I don’t know but for me one lifetime of this MS crap is enough.
Is this my new life form with MS because I didn’t get the lesson the last time round?
Who knows? My MS life is what it is!
So maybe I should throw out my “pity stew” and start over. You know, add the good ingredients this life has given to me.
I’m privileged to know that my perspective on my MS “Life Challenge” strikes a chord with other MSer’s. I’ve spent a lot of time trying to rationalize my illness. This chosen perspective makes sense to me and has helped me to understand the “WHY?” factor. I feel that everything that happens in life has a reason and a purpose. You just need to figure that out for yourself.
What has helped me the most is starting my own local MS Support group last November. We are called the MS Invincibles in Northern Nevada. Our members are all heroes in their own way. I wanted to create this support group that operated the attitude of “now what?” after our MS diagnosis.
I have attended several other local support group meetings since I’ve was diagnosed with MS in 2003. I always ended up being more depressed when the meeting was over. Honestly they were structured like another certain meeting format I’ve heard about.
Scene: Everyone sitting around a large table discussing how this MS illness has ruined their life and the sacrifices they had to make “Hi my name is ______ and I have MS. It was like attending a pity party…with out any balloons! It was not OK with me to proceed with that kind of attitude. My attitude is more like “yes I have MS and now I want to move forward with my life”.
I’m very particular and guarded with the MS Invincibles group members. I made a pledge to only add members who are positive and ready to move on with their life! I have 28 full time members now who are fully committed to the principles of our group mission.
I invite featured speakers to each meeting. These presenters all offer a valuable service to our members. No drug reps. pitching their product is allowed! These speakers are representatives of companies who offer valuable MS services and resources that assist our members in living their best life with MS.
I also created an MS Invinciples resource web site (msinvincibles.org) that is loaded with information links within 28 MS categories. The site features information and answers to many MS questions.
This is a chosen path for me. Helping others with MS! When I help others it gives me a responsibility to others and takes me out of my own MS box. I feel great about what I have created and knowing it helps others MSer’s like me!
That’s a wrap, Chris