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The Media and MS Awareness

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MS Awareness came to my little town last year in the form of a kind of unexpected media interest. So unexpected that I didn't even see it until the reporter sent me a copy! Which is actually fine with me. I am not real comfortable when attention is pointed in my direction.

Yesterday that same reporter AND the local newspaper contacted me regarding this morning's monthly MS Self-Help Group meeting. since last year's initial media involvement in MS Awareness Month, I spent time training to be a group facilitator through the National Multiple Sclerosis Society. The student in me really enjoyed the weekly "conference" call instruction. This training was invaluable in the organization of this group.

Groups are not for everyone and I have discovered first hand the challenges of maintaining or gaining interest in such an endeavor. Upon initial diagnosis in 2001, my mother found a group (In fact, the one that my own replaced.) that met near by. Being at the mercy of someone else, I found it difficult to argue when she arrived at my door for one of the first outings after a week long hospital stay. 

My brain was so full of questions, fears, and depressing thoughts, I figured anything had to be better than going it alone.


The mental brakes were probably heard in my neighborhood five miles from the meeting place on the other side of town.

The following is an excerpt from my own book I Have MS. What's Your Super Power?: A Common Sense Guide to Living With MS. (Names have been changed to protect the identity of participants.)

After nearly 15 years battling the MonSter, I am finally figuring out how to sort through the kryptonite. Support groups come in all shapes and sizes. Upon initial diagnosis, I was encouraged to actually join a physical MS support group. I did, but it was too soon for me. Although I was greeted with open and loving arms, the reality of my situation crashed around me with dread. Linda, the president of the county Blue Ridge MS Group, is one of the sweetest people ever. Her concern over my recent diagnosis was evident. And she was sincere.
But she scared me.
As did Tina, who bowed quietly over her wheel chair lap tray as her husband fed her the pretty snacks arranged on a side bar in the bright hotel conference room.
And there was Roger, the brother of one of my dearest friends, whose sister also had been introduced to the MonSter several years before. Both of his walking sticks (one for each hand) rested neatly against the table where he sat alone.
Probably the most frightening member of this group was the one who appeared the most normal. Jen was a young mother of two. She literally bounced around the room, pony tail flying, dong her best to greet every one and monopolize individual conversations. Her excitement over the arrival of someone new to the program and possibly closer to her own age was a visible cloud that followed her movements.
Beneath all that excitement to be there; beneath the wall of her cheerful words and sincerely interested questions; hidden behind those bright eyes…I saw FEAR.
And that FEAR raced through the air to lodge itself in the exposed nerve endings of my own dying myelin. (Okay, that is rather over the top. But, my inner Super Hero was in its infancy.)
By the conclusion of the meeting, Jen was bouncing up and down in her seat between my mother and me, anxiously holding out a post it note that held her phone number and home address.
We were to be besties for all time.

With this as my introduction into support groups, I reluctantly agreed to return for a second meeting, but finally convinced Mom that this was just too much. This group was NOT for me.

It has taken fifteen years for me to come full circle on the group thing. I still do not look forward to the meetings, mainly due to the lack of interest and the fact that I am truly not a social person; but, I hear the gratitude in the voices of those who do attend. And I really do not have to do much. I open the meeting, offer cake and coffee, and sit back for the discussion to take its natural course. Because, it always does.

That's the deal with group interaction. Someone is always willing and anxious to share. And, it is not necessarily medical talk. We learn how to cope physically as well as emotionally. We share hobbies, books titles and movies, new experiences, and restaurant recommendations. We always have a wicked snack and we always leave with good intentions to be positive in our disease.

So, today is meeting day. The press is actually attending to cover this year's month of awareness. I will post the results of that covere as soon as it comes available.

For now, please take time to view my 2016 efforts to raise awareness of the MonSter.

Until tomorrow,
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