The other kind of hope

I am an optimistic person. My optimism borders on religious; when I despair, it is all that I have. I am good at finding silver linings, at genuinely feeling fortunate or lucky or grateful for the little upturns of bad situations. I enjoy talking to my father when he has to drive me to work. I like snuggling with Astoria when I have to spend the day in bed. I am grateful for my awesome friends, family and coworkers who help me out. All of these things happen because I am sick, manifestations of the impact my illness has on my life. They give me hope that I can keep doing this.

But there is this other kind of hope, more insidious and malignant. I woke up this morning on my own after sleeping for nine hours. This is the second night in a row I have done this. I felt okay when I woke up. Some bone pain, but overall, better than normal. And then it happened, that dangerous optimism – maybe I’m getting better. Maybe this is when I start to get better.

It never is. I know logically that two days of good sleep doesn’t mean I’m headed for a remission. I wish I didn’t feel these things so intensely. But I do.

Even after all this time, I still can’t believe that I will never get better. I can know it in my mind, but my heart just won’t accept that this is anything but temporary. This hope for impermanence can be so painful.

Sometimes I wish I weren’t so hopeful. It is just so hard to live with the perpetual disappointment.

3 Responses

  1. healy32@gmail.com November 18, 2014 / 3:25 pm

    This is today, hope is kicking my ass. Thank you dearest Lisa,

  2. Abby November 18, 2014 / 11:30 pm

    Hi! I am waiting for my appt with Dr. Afrin in January to confirm my MCAD diagnosis. I am a little shocked— you can’t go in remission? I understand you can’t get rid of mast cell but “remission” isn’t possible? I figured if you got it under control like very good control that might be remission. I’m new to this, so I’m still learning. Is there anything that can reverse excessive amounts of mast cells?

    • Lisa Klimas November 19, 2014 / 1:44 pm

      Mast cell disease is incurable. Some achieve remission of symptoms, but not of disease. You can feel well, but will always have mast cell disease, and will always need to take associated precautions. In patients whose lives are threatened by mast cell infiltration and organ dysfunction, chemo can be used to decrease mast cell numbers. However, it is not a cure.

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