Ill fit

I haven’t been posting as much of my personal writing because I am working through a lot of things.  It is hard to think about and hard to write about.  2015 was an incredible and powerful year for me, in both good and bad ways.  It seems impossible that all of the events of 2015 are bound together by time.  It was exhilarating and triumphant and horrifying and so, so costly.

I am very good at minimizing and compartmentalizing, especially when it comes to my own health.  My health care is like business for me.  The actual process of managing my physical health is stressful and difficult but it has never been the hardest part of this experience.  That hardest part is all the things I feel like I lost. No amount of struggle can force those into discrete pieces to be boxed up and pushed aside.

The loss of those things hurts more now that I am more stable and things are less emergent. I am no longer living in one continuous crisis. It has given me some distance to reflect on my life and my health and all these plans I used to have.  I used to write about them every night before I went to bed, quick notes on moving toward a goal or long essays on all the things I wanted to do.  Then I went to sleep one night and woke up the next day and none of those things ever happened and I stopped trying to make them.

I think a lot about the life I used to have.  But for the years in between, it is, in many ways, not terribly different from the life I have now.  Every day, it feels more and more like I was never the person who wrote those journal entries.  I remember her, but that’s not the same as being her.  I don’t even know when she left.  A new season, then two, and suddenly it has been seven years since that girl even existed.

I’m trying to pick up these pieces she left and recraft these dreams, to remember the way they made me feel.  I am trying to fit into the space I occupied before I got sick and I just don’t anymore. It’s like forcing something into a place it doesn’t belong, hitting it hard with the flat of your hand until it splinters and your hand hurts.  Anything can fit if you hit it hard enough, but it will never be whole again.

February 29 was Rare Disease Day.  I wanted to write something positive because I’m a very positive person and because I am hopeful and I want people to be hopeful, too. But the truth is that every sick person has been traumatized by their disease and there will always be days or hours or moments when they feel that keenly.  We can overcome and live good lives but this history follows closely and it takes very little to run your mind over it.  Sometimes it is hard to get out from under that.

I thought all day about a story that could make people understand what it means to have a rare disease, to see what I see, but I don’t think that story exists.   There is no rare disease story, just like there is no systemic mastocytosis story, or Ehlers Danlos story.

There is only my story. So that’s the one I’m telling.

10 Responses

  1. Julie March 1, 2016 / 1:33 am

    Very well said Lisa! I am saving this post to share with my family. I think it will help them understand where I am at….

  2. Camille March 1, 2016 / 4:31 am

    When I was forced to leave my job because I was unable to work full time and was violating dept of labor laws by being there part time… I knew I was leaving a huge piece of myself behind. I struggled with feeling like I was two different people. Before and after. It had been a long road to get to my ideal job, with huge obstacles, major health problems, etc and it felt like years of hard work was gone in a moment. I still can’t go downtown Seattle where I worked for years without a huge weight being placed on me. How could I be the girl that road the bus downtown? The girl who wrote code that was elegant and technical? How could I graduate at the top of the class and have Bill Gates Sr. search the crowd and find me at graduation? Now a days I couldn’t find my way on a bus if I tried. I can’t remember what happened in any movie I saw all year. I’m lucky if I remember that I saw it. So it seems obvious I can’t be exactly who I was. I can only be who I am now.

    A Dr. told me I was still the same person I just needed new ways to show the world who I was. That clicked for me. I might have a crappy memory, spend more time unconscious than conscious, but I’m still standing. I have survived hospitals, Ers, crappy mean drs. I’m survived meds, more meds, steroids for over a decade. But damn it I’m here. I have little pockets of joy. I find ways to be me. Even though things are even harder it helps to take moments to show who I am behind the tubes, meds, flushing, hives etc. How I do that just has to change and adapt.

  3. Kate March 1, 2016 / 6:30 am

    Thank you for your courage. I am truly humbled by your guts and your thoughtful telling of your tale. All of it. Layer upon layer. I have benifited greatly from your knowledge and expertise. As well; your obvious – deep compassion for others.

    Vios con dias

  4. Kristin Elam March 1, 2016 / 8:14 am

    I love every word you write – honest, raw, and from the heart.

  5. Judie March 1, 2016 / 8:15 am

    Everything you said is so true, but I have to tell you watching you triumph this last year traveling internationally and not given up on your dream has helped reinforce my positive attitude and push forward even when if is difficult. Mast Attack is a wonderful contribution to our “rare disease group” and you bring a scientist helps all of us understand more than we would without your contribution.
    Thank you for all that you do, I sometimes wonder how you manage it all, perhaps your youth but I am grateful for the energy you share with the rest of us.

  6. lori March 1, 2016 / 12:35 pm

    You are a brave, extremely intelligent and caring woman. We can always celebrate what we do have, even when it’s pretty tough to do. All of us with this disease certainly have a right to have our down days as well. I appreciate you!

  7. Keeya March 4, 2016 / 8:25 am

    Thank you for being honest. I completely understand how the wave of reflection hits you after life starts to get a little more stable. It feels like a double whammy.

  8. Robin March 13, 2016 / 7:28 pm

    This is a beautiful post. I could have written every word. If I dwell on what I’ve lost it is overwhelming. I too am a positive and hopeful person despite it all. My faith has grown tremendously these past few years. And as difficult as it is to say, I truly wouldn’t change the path at all b/c I can’t imagine being that person I was, lukewarm in my faith and without the perspective I have gained. My body is weaker but I am stronger in so many other ways.

    Thanks for taking the time and energy to share your journey. 🙂

  9. Yvonne April 12, 2016 / 8:48 pm

    Lisa, yours is by far the most useful and informative blog I read about living with mastocytosis. I’m 69 and see masto affecting my ability to paint–certainly how often I can paint. I cannot imagine the grief that you younger masto patients feel about losing careers, identity, friends and sometimes, spouses.

    You are contributing to the anecdotal (with a scientific bent) body of literature surrounding mast cell diseases, so you are certainly making good use of life and illness. Thank you for your writings, and I hope your tooth extraction misery is soon over.

    • Lisa Klimas April 13, 2016 / 9:24 pm


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