Trevis's blog - speaking of MS

“My name is Trevis Gleason and I live with Multiple Sclerosis.”

I’ve started countless speeches with that opening line. From small gatherings of people living with the disease to, in the case of recent events, fundraising luncheons attended by over a thousand.

It’s not easy to get up and tell our stories; sometimes it feels a bit vain and self-important to think that someone would actually want to know about my life with MS.  At the same time, I feel that it is my responsibility to speak up, when asked, and sometimes when I’m not …

Here in America, it’s not uncommon to be asked about an “elevator speech” (I guess that would be “lift speech” in the UK?). You get into the lift and the doors close. You’ve got until the doors open on your floor to get your point across. I believe it started as a business term for busy executives one might be trying to impress. I am of the opinion that each of us might need to hone a Lift Speech for the occasions we have to speak to someone about MS.

According to the UK MS Society website, “Multiple sclerosis (MS) is a neurological condition which affects around 100,000 people in the UK.”  The US counterpart’s site reads, “Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves”.

I, quite frankly, don’t see either of those ending up in my lift speech.  Both are true, both are factual, both are accurate.  Both are also woefully clinical.

Each of us must come up with our own definition of MS before we can build a speech around the topic.  For me, MS is a thief … a thief who comes in the night and steals what is not its to take, and leaves behind symptoms unwelcomed. MS can – and has - affected most every part of my body which is controlled by or through the central nervous system. MS is my enemy.

Now, that’s something I can build a speech around.

Day in and day out, we are given the opportunity to avoid speaking about our disease or to speak out about it.  We needn’t choose to talk about it every time the chance presents.  We should, however, have at least a lift speech prepared for the times we decide appropriate.

Do you have a standard response about MS?

Wishing you and your family the best of health.

Cheers

Trevis

You can also follow us via our Life With MS Facebook page, on Twitter and on the EverydayHealth.com Life With MS blog.

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Here in the UK we're famous for liking a drink or two - that's my point of reference. I explain to people that MS makes me walk like I'm drunk (even though I'm NOT) and I often feel hungover (exhausted, headache, dizzy) although I haven't been out partying. It's something a lot of people can relate to & sympathise with - not in a "Poor you" way, but more a "I understand how bad that feels" way. Or maybe it's just the company I keep...happy2

 

Love the idea of having to restrict a response that explained MS to the time spent in an elevator. The analogy is quite profound really.

It is always already uncomfortable when trapped in the confines of an elevator, usually with people that you don’t know at all, that feel it necessary to say something, anything, to break that uncomfortable silence.  Wouldn’t it be nice to explain that MS is like being stuck on the elevator, watching the doors open and close, different people getting on and off, but never reaching your stop to get off! 

tounge

Trevis ~ We very much enjoyed this post!  It has made us think about sifting down all that we could say to fit into a "lift" ride!  Choice!  :)  It also make us think of what really is important...what message do we really want to share?  How would what we could have to say affect the listener for the better?   Possibly awareness?  To be more compassionate on others in lesser health?  Or, just to vent ourselves and force them (during lift ride) to sympathy?  I think that maybe it would change how we internalize, and that, ultimately, could affect how we view our disease and maybe even our health would be improved!  At least, our attitude would improve?  Thanks so much for these thoughts!  Makes us think!  Shirley & Glen

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