Sunday, February 12, 2012

Survivor's Guilt or Living Forthright...

     Recently, I became aware a second cousin of mine was diagnosed with (wait for it...) Multiple Sclerosis this past fall.  Within a matter of months, he spent a full month in a hospital and is now unable to walk.  He has to catheterize himself several times a day, attends PT several times a week, has struggled with his insurance company just to GET the care he needs paid for, and yes...he is younger than me.  We both come from a similar genetic background (or perhaps "cesspool", depending on how one feels about having faulty disease-producing genes!), we both grew up in the same region of the US, we are both diagnosed with MS, and yet our EXPERIENCE of the disease is starkedly different.

     If you are someone who has followed the several years of blather on this blog (and I question your sanity if you HAVE!), you will recall I was diagnosed with Multiple Sclerosis in 2003 - the first five years post diagnosis were quite traumatic as I struggled to come to terms with what I believed was impending disability and a lifetime of misfortune.  I tried the many "remedies" available, which only seemed to worsen my symptoms and I prepared myself for the worst.  In 2008, I stopped all DMD treatments and adopted a personalized wholistic approach to my wellness...it has worked out well for me (but not something I recommend for YOU because MY way could kill YOU...just sayin').  Two months ago I had a MRI and neurology check up...my disease process has stabilized and there are no new or enhancing lesions in my noggin'.  My neurologist (Dr. She Who Will Not Be Named...yes, she still exists!) shakes her head at me and mumbles under her breath, struggling with the conflict between being PLEASED I am doing so well and her inner unrest in being WRONG about my particular treatment (which she will not admit, I might add).  I have only minor residual symptoms and only occasional flair ups which do not even constitute *relapse* in my book.  I continue to work full time, maintain a yard and home, chase the P.O.D. (the Princess of Darkness, aka, my evil kitty), and have walked the Seattle 1/2 Marathon for the past 3 years each November (and that would be THIRTEEN POINT ONE PAINSTAKINGLY GRUESOME MILES...ehem).  Wow...ain't life grand?!?  I have no real complaints...well, at least only the one about losing weight and why is it so freakin' difficult or why is my hair turning Seattle-Sky-Gray, but I digress.  :-)

     ~~So why do I feel such a knot in the pit of my stomach whenever I think about or talk about my cousin?  And why do I very privately tend to want to avoid being around other people with MS who's symptoms are prominent or who's mobility is profoundly limited?  And why do I quietly think I SHOULDN'T *flaunt* (aka, discuss) my wellness lest I be excommunicated from the "MS Club"?~~

     There is a psychological phenomenon called "Survivor's Guilt" (when severe, called Post Traumatic Stress Disorder) which often plagues people who outlive, overcome, are left behind, truly "survive" catastrophy, when others don't.  Most practical definitions of this syndrome go something like this:
 
 Survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.

     This syndrome was first noted post Holocaust in those that made it out of the horrific concentration camps, but it has also been identified in persons living through combat, natural disasters, loved one's of completed suicides, broad employment layoffs (by those remaining employed) and so on.  And, it is also seen in those that "survive" traumatic illness, such as cancers, heart attacks, etc...and...it can be felt by those that overcome symptomology of diseases when others they identify with who share similiar diagnoses do NOT stabilize or who continue to worsen in prognosis.

     OK, let me first explain, I do NOT suffer from clinical "survivor's guilt"...the above examples I provided in questions within the ~~ ~~ paragraph are extremes in thinking, but they are not questions that cause me to avoid or change my functioning.  I provided the questions above as examples for any reader who might be having similar thoughts, but unable (or God forbid afraid) to say them outloud.  And I have heard others with MS voice common themes...those that are doing well with their disease and by those that have been able to overcome great obstacles in symptom management.

     As human beings, we tend to gravitate toward what is familiar and toward those that share similar experiences.  Because Multiple Sclerosis knows no common theme, it is sometimes difficult to share comfort with people who's experiences with the disease are drastically different.  We can end up feeling alone, different than, or even *guilty* when we perceive others having it worse off or better off than we do.

     I haven't written much on this blog over the past many months...in part, because there hasn't seemed to be an *MS story* in my life and in other ways, because I've been doing so gosh darned well, I've been filling up my free time with other activities!  But I think I may be returning to dabbling again in a bit of face-stretching-yawn-type-blather here because I only have LIFE to write about these days...that OTHER thing we all share besides Multiple Sclerosis...that day to day activity we can either refer to as SURVIVAL or we can refer to as LIVING...

7 comments:

Michelle V. Alkerton said...

I may have started reading your cheese because of the MS connection, but it's your views on life and humour that have kept me coming back and checking on you to see if you feel like sharing with the rest of us strangers in the cyber universe. You have had a profound impact on my state of mind :). I am sorry to hear about your cousin, but so pleased to hear you're still doing so well.
Stay inspired!
Michelle
Brain Angles - Invisible Ink

msguidedjourney said...

Since beginning my blog this week, I have been perusing the web for other people's stories to read and I find myself shying away from the stories about people who are worse off than me. This survivor's guilt syndrome appears to hit the nail on the head. I am still on medication but have been exploring holistic approaches as well over the last two months. I'm anxious to read more to see what things you are doing. Don't feel guilty, just share your successes proudly.

GG said...

I hope you continue to post again. You've been missed and should not feel guilt with doing well. Your sense of humor and life stories has always been refreshing to hear about.

Webster said...

Welcome back, Cheese. It's nice to see your post. I'm sorry to hear about your cousin and his unfortunate case of MS. That's tough.

But YOU, m'dear, SHOULD be writing about LIVING with MS. I don't care that you're doing better than I am. I got out of bed today just as you did; probably a lot slower, but still... so write on survivor! Tell us of your escapades.

kmilyun said...

Well Hello there!

I have never taken the DMD's nor can I claim to doing a holistic thing either. Once in while I wonder if I am gonna regret this (usually after doc visits).

I sure can not run a marathon but how cool that you can!! I am with Webster all we each can do is write about how we are living with MS.

Comparisons, guilt, etc. yeah I experience it reading blogs, at my PE class . ...

Hope your going write here more again and sorry to hear about your cousin.

Jan

Have Myelin? said...

Actually I'm thrilled you're doing well! It's exciting to me to "see one of our own" making a neurologist crazy.

Heh.

Bec Hoover said...

Hi,

Your post saying Two months ago I had a MRI and neurology check up...my disease process has stabilized and there are no new or enhancing lesions in my noggin'. My neurologist (Dr. She Who Will Not Be Named...yes, she still exists!) shakes her head at me and mumbles under her breath, struggling with the conflict between being PLEASED I am doing so well and her inner unrest in being WRONG about my particular treatment (which she will not admit, I might add). I have only minor residual symptoms and only occasional flair ups which do not even constitute *relapse* in my book. I continue to work full time, maintain a yard and home ... ." is great. Many others have had the same experience.

I think ultra healthy living is key to beating MS and I have heard your story so many times. When folks stop taking the meds and start living ultra healthy, get get better. That is why I write:

http://intelligentguidetoms.wordpress.com

Rebecca

P.S. I am so glad to hear you are doing better.