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Blind at the end of the tunnel.

So, I left the hospital “Against Medical Advice” on Friday.
Don’t worry, they still legally have to take good care of me, and gave me three antibiotics to take home with me, two which are IV
through the plug in my chest that they trained me to self-administer.
The eye is getting better, and I’ll see an eye doctor tomorrow.
It’s not great, but it’s getting better. I still have some signs of infection,
but, time will heal.
I’m a bit emotionally tapped out, folks, so I don’t have
much to say about what’s going on or how I am.
I’ve asked a few people to simply come and sit with me as a
sort of “study hall” this week, meaning I need to get some logistical things
done, like reply to some emails, open my taxes documents, and I know other
people have stuff they usually need to do and push off too, so we can sit here
and do it together.
I don’t really need entertainment right now, I just need
companionship. People to hold the space for me while I do what it is I know how
to do, and can do.
That said, I called a woman yesterday who sort of speaks my
spiritual language, and has also been in Cancer World for a long time. A friend
put us in touch back at the end of the year, and I knew I needed to speak with
someone who got it from all angles. She was really helpful, and said something
interesting: Sometimes you need to let people do the things you can do, so that you have the energy to do the things
others can’t do for you, like heal.
So, yes, I can take my garbage out, but if there’s a friend
here, ask them if they can. What she said was that we feel like it’s a big deal
to ask someone to do something like that, because to us, it is a big deal to take the garbage out, but to them,
it’s not.
I had a good friend come by yesterday, and simply sit with
me while I called my chemo case manager and leave a message, knowing she’d get
it first thing this morning. I was feeling so disconnected from help from the
hospital, and so overwhelmed by the bureaucracy, that I needed a mediator. So
my friend sat, as I went down my list on this woman’s voicemail, a woman who
has always been very attentive and responsive to me. And, lo, today I now have
appointments with an eye dr tomorrow, and another doctor on Thursday.
I’d say, “It’s not okay,” how all the Kaiser rigamarole is, but it’s just more like, I’m too
tired to deal anymore. I am at the end of this, in the darkest before dawn
phase, in the last mile of the marathon when the runner’s feet are bleeding and
their lungs are burning. I’m having to ask for help differently now, but I honestly feel too tired to ask. I’m worn out, and I don’t know how to not be worn out anymore. I’m tired, I
feel isolated in facing the behemoth that is Kaiser (the case manager just
called me and told me I have to go through the online email system to ask a
doctor a question about my medication that’s causing me splitting headaches, and at this point, it just feels like too much), I feel
alone in having to treat my eye, my fever, the headaches, the self-administering of IV drugs. I feel tired.
And I don’t really know what to do. What will help. What I
need.
I’m glad I’m alive and all. This morning, I wrote a gratitude list, and a forward-looking “Now that I’m healthy, I’m so glad I get to …” But it’s still hard. And
I’m so damn tired of it being hard. 

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