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It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Friday, June 20, 2014

Insight Into The Lesser Known

It is important that I remember why I started this blog.  When I was first diagnosed with MS, I had a friend tell me that I should learn all that I could about the disease.  This was during the "soft diagnosis" period, before they had done the spinal tap and confirmed that I--in fact--did have MS.  She said that if they found out later that what I had was not MS but some other neurological disorder, well, then I would have some knowledge about something of which I had no previous knowledge and I would be glad for that, at least.  She went on to explain that if I was diagnosed with MS, then I would be better prepared once the "concrete diagnosis" was in.  She was right.  And I can now apply that line of thinking to many other things as I have learned and grown.

See, what I discovered when I was first "soft diagnosed" nearly ten years ago--when that calloused neurologist joked "at least you don't have a brain tumor" --was that there wasn't a lot of personal information available on MS: the experience of having it, living with the effects of the disease, coping with it, dealing with (at the time) the limited drugs and their side effects, the barriers in treatment, the stigma in admission to employers and co-workers.  In a decade, a lot has changed.  Still, it was what I discovered then about MS, or should I say what I realized was missing in the field of knowledge that led me to name my writings "Insight Into The Lesser Known."

I remember scrambling for information.  Certainly the facts we available at their base level.  MS is an autoimmune disease.  MS is a hyperactive attempt to control disease in the brain where antibodies attack the Mylin (the protective layer) around the brain's delicate nerves, thus causing short circuits in the body of the MS victim.  I saw the word 'victim' a lot more back then than I do now.  But I digress.  The point is, what I was looking for was personal experience.  Where were the blogs, the stories, the insight into the intimate places where those with MS suffered or didn't suffer? How could I learn about the emotional side of this chronic illness, the effects on families, the loneliness of this disease?  Well, I decided, I would start to share my own experience, from the very beginning.

At the time, blogging was a limited field.  It is wonderful to see who far we have come without social media.  I know some may frown upon this decimation of personal information, but for someone like me, someone looking for insight into the lesser known, blogging has been a great tool.  It has enabled me to not only share my own insight but to also learn so much about the personal experiences of others.  And now there are social media sites that are just for those with MS.  I have found these places to also be very helpful.

When I started writing this all down, I promised that I would share the good and the bad.  My goal was to reach those with questions and hopefully provide some answers.  This continues to be my goal today.  Sometimes the question is, can I get through this depressing dark winter or stressful time?  And the answers have filled these pages.  Sometimes it is about my struggles with heat and diet and exercise.  Often it is about overcoming the odds.  Triumph!  Winning!  But I am also honest about my setbacks and struggles.  That is only fair. 

And all along, I have been engaged in running.  I have run trails and hills and marathons.  My readers have come with me on each step.  I have shared the difficulties and the joys of each big race, of each event.  I have written about my children and running with them, running with my husband, with friends, with memories and ghosts and strangers.  And I have written about running with MS.

This is something that I feel deserves a written record: running with MS.  You see, if one of you reading this has MS (and I know of several now) and you stop and think to yourself, "I bet I can do that too" even for a small minute, a fraction of a second, giving you a little insight into a subject that I found no written word on when I first started, then I have done my job.  I will continue to do my job.  I write to you, to grant you this insight into the lesser known personal struggles and accomplishments of having MS and living life anyway.  I write to grant insight into the lesser known MRIs and the lesser known finish lines, and the lesser known defeats, and even insight into the lesser known triumphs and joys of victory.  See the path, my friend.  You can come this way too.  And maybe when you share your insight into what is now the lesser known, you will describe new wings of glory flying through the sweet enraptured sovereignty of a cure.


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