“This is hard because we don’t know how to deal with it,”
one of our friends told me. “With you, you’ve always been sick, so we expect
that you’ll be sick. But we don’t know
how to deal with this.”
I knew what she meant.
I felt the same way. “I like it
better when I’m the one who’s sick,” I answered. I feel like if I have to live with pain and
vomit and the shudder of anaphylaxis that it should shield everyone I love from
serious illness. I would take all of it,
for everyone, if I could. But of course,
that’s not how it works.
I have talked a lot recently about how important the mast
cell community is to me. I am so lucky
to have all of them in my life and I would never exchange those relationships
for anything. I am grateful for them
every day.
The flip side of belonging to a community like this is that
you gain a lot of sick friends. On a
weekly basis, I hear that someone is in the hospital again, or someone needed
multiple doses of epi, or someone had an increase in their serum tryptase. Every time I learn something like this, the
utility of my experience living with chronic illness is apparent. I can take pretty much any medical news
without flinching. No amount of bad
blood work or organ damage fazes me. I
am glad that I can support these people when they are having a hard time, as
they have supported me.
While all my masto people are special to me, there are some
that I feel a particular kinship with. I
call them my people. I have girlfriends
who text and call often, a constant source of bidirectional support. There are
a couple of little girls who I feel a sort of responsibility toward. There is a teenager who reminds me a lot of
myself. I worry about them, but I take
comfort in the fact that I am still here, and so I believe they can make it at
least as far as I have.
And then there are the people whose disease is more
advanced than mine. When they suffer, it
feels like looking into a crystal ball and seeing my own future.
I have been fortunate to meet someone whose journey closely parallels
mine. We talk on the phone and tell bad,
dark jokes about our health and laugh.
It is a very bare relationship. We
experience the turmoil and sadness and anger in the same way. The gift of companionship on this road cannot
be underestimated. Some days, it is all
you have.
Finding out that any of my people are in trouble is
physically painful. It feels like some
clawed creature tore the flesh off my chest and my heart is exposed and
unprotected. I worry about them all the
time. It is the only thing I can
do. There is a lot of wait and see in
the mast cell game. There is a lot of “we’ll see how this turns
out.” You never know how people are
going to emerge from this latest crisis.
Even if they aren’t in mortal danger, they could lose their house, their
job, their marriage. I feel all these
possibilities acutely.
One of my people is in a world of trouble right now, several
thousand miles away. I was talking to
someone about him today. She noted that
it is a double-edged sword, belonging to a community like this. You both have validation and support and also
are guaranteed to witness the suffering of those who are close to you. She is right.
But if that is what I have to take on in order to have these people in
my lives, it is worth it.
I love you guys. I
mean it.
It is an honor to share your pain.
It is an honor to worry about you. I will never stop.
This pain it evokes in me, I am protective of it. It reminds me how much I care about you. It reminds me that this journey we are all
taking matters.
I hope that we all live long and happy lives in spite of
mast cell disease. But if that doesn’t
happen, I will be with you, until the very end.
Stay strong.
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