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Wednesday, April 20, 2016

New MS Warrior Support Group. Help me, help you.

                        




Okay. Point your finger at me and give me that pathetic head shake. Grumble a second or two. Roll your eyes and spit at my feet. Tell  yourself that you will never look at this blog again and that I am officially on your Yuck List.

Get it all out.

Right now.

'Cause I'm going to say it.

And I really, truly mean it.

Ready?
                                      
                                 I LOVE MORNINGS!

Although I retired from my beloved teaching position in June, I continue to set my alarm in order to be up and about when my husband goes off to work and my son readies for school. There has been a time or two when I cuddled up on the couch with my favorite blanket, doused the living room lamp, and dozed to the sounds of Matt, Savannah and Al. I actually did crawl back  into the bed one morning after answering a school delay phone call; but this behavior is extremely rare.

Apparently the majority of persons with MS prefer morning to evening, when spasticity (According to spell check, I just invented that word; but we know better, don't we?) interrupts comfort at bed time. I notice that my legs ache and I cannot get warm at night.  Many Warriors complain of morning stiffness and aggravated balance. I understand, but push myself through it. Six of one and half a dozen, right?

By evening I am totally wiped out and ready for a long winter, spring, summer, or autumn nap. 

I do my best thinking in the morning. This is when I write after a good stretch to wake up my stiff appendages. A cup of coffee laced with my chosen creamer of the month at my side, I invent characters, imagine scenarios for the next America's best selling novel, and surf the web for information about pertinent issues. Before the conclusion of the local morning news broadcast, I have  set the foundation for a productive (hopefully) day.

This morning, I am not concentrating on my personal writing, though. It appears that I am soon to be responsible for a support/self-help group in Marion County and my mind is abuzz with ideas. 

My personal experience with MS Support Groups is not a particularly pleasant one. The group was fine. The people were really nice; maybe too nice. I just wasn't ready to be part of their life. I hadn't realized that it was my life as well.


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.

I haven’t returned to Support Group and often feel very guilty about that. I really do intend to revisit sometime and I hope I find the welcome just as inviting and the spirits as hopeful.




I is time to put my big girl panties on shove insecurities under the 

aside. If I am to be the moderator/administrator/hostess of a 

Multiple Sclerosis Support Group, I feel it is my ultimate 

responsibility to off a safe, friendly, nonthreatening, FUN 

environment people want to visit.

That's where you enter the picture.

Those of you who have support communities are my experts at this 

point. Even though the group that I will be overseeing probably 

will not be up and running until early summer, the planner in me is 

planning.



I welcome all ideas, suggestions, thoughts, stories...whatever... 

concerning MS Self-Help/Support Groups. I sincerely want to this 

group to work.



Now, I am a realist, and in reflection, I KNOW that the group I  

attended upon my initial diagnosis was not as horrible as I 

remember. That was a dark time in my life and actually my 

cognitive recall is quite dim. My memories are sketchy; but I am 

certain the group's goal was to offer that safe, friendly, 

nonthreatening, FUN environment of which of I speak.



I just wasn't ready.



In retrospect, no none is. No one is ready to accept the existence of 

something as intrusive as MS. There will be folks coming to this 

group feeling as I did. My biggest fear is that my group will scare 

them away and no amount of sugar cookies and lukewarm coffee 

will fix that. The members of that group I visited were just as 

scared as I and desperately in need of making me feel comfortable.



I know that now; but it doesn't erase my foggy image of the event.

Martha Stewart is famous for proclaiming that "presentation is 

everything" so I need a desirable (irresistible?) presentation.



I am certain that NMSS will offer legit guidelines for the creation 

of this group during my month long training in May, but we all 

know that textbook knowledge vs. true-life experience is often 

rather skewed. That 's why I ask my fellow Warriors and friendly 

blog followers for assistance. Your advice doesn't have to be MS-

related. I am not nor have I ever been much of a party planner, so 

put your best Martha Stewart face on and bake me up some 

suggestions.

I look forward to your expert thoughts.

Until then, get out there sand enjoy your morning! Sunshine calls 

me...or is that the sound of my stomach gurgling? Oh, yeah, it's 

breakfast time. Banana smoothie, here I come!

Lisa









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