Monday, May 16, 2011

This Is Why I Am An MS Health Activist...

"What kind of MS do you have?"

"I don't have MS..."

This answer of mine usually takes patients and MS Health Activists a moment to absorb.

"Why are you involved in the MS community then?"

There is a little story that goes along with my answer....

Once upon a time I had a horse breeding business.  I also sold horses, and one day I received an email from someone who had seen one of my geldings on an auction site that I owned and ran.  She was in love with him and wanted more information.

I am very picky, and not everyone who has the desire and the cash for one of my horses just "gets" one.  I check out potential buyers for my "kids".  This time was no different and I took my time checking her out.  I was impressed...

ES Royal Valentino photo copyright Aaron Schnakenberg

Sharla and I spoke on the phone and emailed for months.  I took the gelding off the market despite the fact that she had not yet purchased him.  She was a good person and the right new owner for my gelding - I just knew it.  I was willing to hang onto him for however long necessary to see that she would get him.  Over a year later I was finally sending him off to California on a trailer to go to his new home with her.  I wasn't so sure that was going to happen though.  You see, I had become good friends with "S", and at one point I received a sad phone call from her that she had gotten a diagnosis of MS.

Eventually, her MS had progressed and she was depressed and overcome with the journey ahead of her, and one day had called me up to tell me she was making good on a promise she had made me the day I shipped gelding off to her... if ever she felt that she needed to find him another home because things got overwhelming for her health wise or otherwise, she would let me have a chance to purchase him back from her.  Her phone call that day didn't tell me I could buy him back from her, it told me she was shipping him back home to me again - at her expense.  She had made good her promise, and then some.

Now I ask you, how many people would do that for someone they had never yet met in person?  I was the one that was overwhelmed with gratitude, and I had to meet this wonderful girl I had come to love as a friend.  (To date this is the best gift anyone has ever given me)

My husband and I were going near LA for a conference, so this seemed like the perfect chance to meet this extraordinary person.  We made arrangements for dinner for the four of us - she and I and our hubbies - and we met at an Outback Steakhouse.  We recognized each other and immediately hit it off and spent the next day together.  It was an awesome visit with a really fabulous person.

We have known each other now for several years.  We speak regularly and our conversations can get long.  She calls my husband "Chad" (his real name is "D") just to tease him.  Through this time I have watched and listened to her as she struggles with RRMS... the struggles with her relationships, her horses, her job, herself.  I've listened with concern as she talks about her doctor's office visits, her medications, her symptoms.  I've listened to her laugh and cry, and joined her in both.

When I was approached to help WEGO Health with their MS community, I was thrilled.  I am still learning about the disease, but I am fairly well-versed at working within health communities, and enthusiastic about doing whatever I can in the MS community. I am also an autoimmune patient myself, as are many members of my family, and there are many things MS has in common with other autoimmune diseases - an area I'd really like to explore.

There are some FABULOUS MS Health Activists and I enjoy chatting with them online on Facebook, Twitter, here and other places.  MS crosses many boundaries.  There are many co-morbid conditions that are frequently found in patients, and although I don't suffer MS myself, I often am all too familiar with those other conditions.

I am on the outside looking in, and getting involved just the same.

Working with MS Health Activists is a passion because I love my friend.  I don't have to be here - I'm here because this is where I want to be.  There is no ulterior motive for me.  I want to see MS obliterated from the planet, but until that can happen I am content to helping do whatever I can in the way of education, spreading the good word of hope, and exploring conversations that can be helpful to the MS community as a whole.

Now you know my story... now tell us your story - why are you an MS Health Activist??!  Feel free to include links that will help us all get to know you and your place in cyberspace...

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