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Out With the Old. In With the New. MS Spring Cleaning





Okay, my OCD friends, do not freak out on me. Yes, I changed the appearance of my blog page as part of my spring cleaning project. Out with the old and in with the new. Yesterday  I released a large amount of negative energy and am in need of a powerful cleanse to restore harmony in my life.

So, allow me to pretend for a while this morning that I am perfectly fine.

In fact, the pretense isn't all pretend. My much anticipated ambassador training began at 1:00 yesterday afternoon. That's right. I am training to become an ambassador. Ooo, la la.

During a delightfully informative 90 minute conference call, trainer Lou Ann Pierce talked a group of volunteers through session one of a four week program to ready us for something HUGE.

Upon completing this training, I will (hopefully) be qualified to facilitate a self-help/support group in North Central West Virginia. I am very excited and extremely nervous.

My support group experience is limited as well as tremendously intimidating. In chapter 9 of my book I Have MS. What' Your Super Power? http://www.amazon.com/Lisa-A.-McCombs/e/B005ELC3FU/ref=dp_byline_cont_book_1


As I re-read this passage, my eyes fill with tears and my stomach clenches. The fear, the uncertainty, the absolute feeling of helplessness returns.

My goal in becoming a group facilitator is to do my darnedest to not let someone else experience this horrible memory.


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. In this time of social media, I am more comfortable in front of my computer conversing with the masses all at once. Face Book is awesome as long as you are wary of the allure to predators.

(By the way, I am still pissed off, but planning my next mode of attack.)I describe my first (and last) visit to an area support group meeting. I hate that this sounds so negative, but it is what it is. 

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. In this time of social media, I am more comfortable in front of my computer conversing with the masses all at once. Face Book is awesome as long as you are wary of the allure to predators.


Being the ever preppy, brown-nosing student that I am, I cannot wait for next week's session. We even have homework!!!!



Okay, maybe that emoticon is a bit cheesy and abundantly exaggerated, but I want so much to be a good little facilitator. 

What did I learn yesterday?

Well, let me report that the number on mantra is "As an ambassador, we do NOT give advice." One small statement that packs a big punch. Isn't this what we all want to do in the face of conflict? 

One role I will serve in this new ambassador capacity is that I will not be mistaken as an expert medical figure. 

I also will not refer to any Warrior as an MSer, nor will I use words like victim or handicap. I know, I know...a bit specific, but I understand the need for explicit terminology. It is not just PC, it is common consideration. 

Also, religion in no way will be part of this support experience. At first this made me rather nervous since the chosen meeting location for my group will be in the basement of my church. It is just a building, though, and my church is probably the most welcoming, non-denominational atmospheres in existence. It is the perfect place: handicap (oops) accessible, easy to find, available kitchen and bathrooms, casual. This will work.

I am already planning speakers, baking cookies, and practicing my public speaking voice. But it's not all about me. I am just one cog in the many-faceted machine that will become a comfortable, safe sanctuary for Warriors and their families. I have so much yet to learn and I will keep you posted. I welcome ALL comments, suggestions, and advice you can throw my way.

Well, it is time to swallow one more dose of the wonder drug, Ampyra...You know... the one that  I make too much money to finance through patient financial support. The one that will end in two days, forcing my legs to return to that Charlie Gordon (Flowers for Algernon) vegetative state I thought was in my past.

(Yep, I am still pissed off; but scheming. MS -and motherhood- has made me fearless.)

Have a good day,
Lisa


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