Thursday, August 23, 2018



What I realized About My Illness After The Sudden Death Of A Friend     


    I have a story to tell.  And it’s not just about me or my illness.  It’s about all of us and all of our illnesses and how they have made us view the world.  And it’s about one who was not one of us but who should have been and her illness and how it should change how we all view ourselves and our illnesses forever.

    I have been a part of several support groups for many years now.  For the chronically ill, chronic pain, incurables… However you want to label it, we are sick, we hurt, and we will never get better.

    I have read stories, written stories, and responded to stories.  We vent, we cry, we celebrate, and we lift each other up. After all, no one can know how bad we have it but those like us.  Spoonies, chargies, chronically ill, invisibly disabled, chronic pain patients that experience things “normies” never will. And we live our lives despite it, even though we are depressed and tired and hate the hand we’ve been dealt.

    That’s the point of the support groups right?  To commiserate? To ask advice or tell our stories to others who know our unique frustration with our lives and the havoc our diseases wreak on them?

    But what if I told you we have all missed the point and that every day we wake up and can feel our pain is another day we have to just be.

    You see, I just heard that the mom of my son’s friend died yesterday.  She died. This wasn’t just another middle aged soccer mom who ate too much fast food because her schedule was so overpacked with her kids’ activities that she couldn’t take a minute to do anything for herself, she was probably the exact opposite.  

    She could be spotted running every single day, and in Western NY, that is quite a feat.  She didn’t have an ounce of fat on her, ate clean, and to top it off, worked in healthcare.  Yet even someone like her could not avoid chronic illness. Hers was just relentless, fast and FATAL.

    Think about that.  While our conditions are relentless and painful and just plain awful to deal with, most do not carry the 80-90% fatality rate within 1 year of diagnosis that hers did.  She was the epitome of health yet she developed CJD (Creutzfeldt-Jakob disease), an extremely rare and highly fatal brain disease.  There are treatments but there is no cure.

    I have known this woman for 18 years.  I have been sick for 23 years. She was sick for only one.  ONE YEAR. Yet she is now gone from this earth and I am here, in pain, writing while trying to make sense of the unfairness of it all.  

    But that is exactly my point.  We who are chronically ill are often dealing with so many health issues one after another after another that it can be hard to even breathe much less smell the proverbial roses.  And even when we do get days when we feel good, it seems we have lists of so much stuff we have to do because our diseases usually prevent us from doing stuff that we’re really not smelling anything are we?  It’s no wonder we are filled with such negativity.

    And I am one of the worst offenders.  I have been deep in my disease lately.  I have been frustrated, achy, overworking myself and snarky.  All because I want to keep my house clean and wash my dishes but doing so exhausts me and makes me hurt.  Guess what, my friend lost the ability to even HOLD a dish months ago because her brain was essentially being eaten.   
   
    I have allowed myself to wallow in self pity more than I realized.

    I will never look at my illness in the same way again.  

    None of us should.