MS Journey #33

Dear Christina Applegate

Last night I came across the Today report about the Vanity Fair interview.

I confess that I don’t know how Multiple Sclerosis (MS) affects you specifically. I know nothing about you other than you are an actor and have recently been diagnosed with MS. I don’t know about your life, family, friends, your loves and desires. What I am learning though is that you are angry and I get that.

I also know that you are a famous Emmy award wining actor whom happens to be in one of my all time favourite SNL skits. You broke character and did what the rest of us humans were doing – laughing.

MS is a disease that does not show itself to others it hides within the host. For most of us it’s not visible to others and therefore it frustrates us on top of all the other hidden shit that MS is doing to us. We have to explain to others that yeh we are really ill. It’s almost as if we have to prove that we are sick. Sometimes I don’t want to go out to the pub, or to shop, or go for a walk, or do something that I would normally like to do. And I’m tired of explaining that MS is the reason.

I loved seeing you get your star on the walk of fame in your bare feet and you explained why you did that. I never wear socks or shoes while I’m on my property. I even do house construction projects in my bare feet. I need to be in contact with the floor, it’s the best way to keep my balance. You told the world about that little symptom fact that I share with you.

That may seem like an insignificant fact but it made me feel justified or at least understood. You explained something about what made you feel better – being barefooted.

You have a platform and you used it that day. I know the anger of this disease. It takes away our potential and for me that has been the most difficult aspect of my personal journey. And constantly having to explain why, is at the very least tiresome.

I know that advice from friends or relatives lacks the understanding of what MS does to us. I often have been the recipient of well intentioned but ill informed advice – even from medical professionals. And I, whom has had MS for 26 years, may not experience what you are experiencing. This fact that MS affects us all differently is on its own frustrating.

But I’m going to pass on some unsolicited possibly unwanted advice that may piss you off. I hope that it doesn’t.

You have the power and it resides within. Do not give up, find something anything that makes you feel good. A cup of coffee, a smile from your child, watching a good movie. You have the power to not give up. I see you use your power to tell the world about MS and the anger you are feeling. But pivot. Anger is a waste of your energy which could be used for good. And as I’m sure you’re aware energy is a scarce commodity for us MS’ers. Continue to let the world know about this terrible disease and channel that energy to help solve this problem.

Love to you.

Be safe