Sick and Dying on the Midnight Express


Doc says the vomiting and gastric infection is a gamble you take with immunosuppressant therapy. Keep hydrated. Go to hospital if dehydration gets worse. Take two of these and leave me alone kid. It’s Saturday night!

Very hard to stay positive. Very hard to stay happy. Very hard to stay anything at all.

The world keeps moving and I keep slowing down. Even after an ok week, I now end up here. Impossible not to ask why.

Mae thinks I’m dying. Told me she wants me to live forever. I told her that sounds good in theory, but think how crowded the earth would be if no one ever died. Plus — You can’t become the stuff of legend if you live forever! :)

I told her that dying is part of life but that I had no plans to do it just yet. We talked about how it would most likely be a pattern of me sick. Then mostly well. Get sick again… Wash. Rinse. Repeat.

I say things to comfort her. I try to make her smile. I’m just so glad she’s my baby.

Sometimes we play a game where I tell our future. Miranda has no patience for it. Her path is her own and she has no time right now for the decrepit and ill.

This game of imagination is always happy and there is no downside… And I always tell her it will change next time we play because, well, it’s a game. :)

Sometimes, she runs off to the circus and becomes a graceful aerialist. Sometimes she is a doctor, saving mankind. And sometimes, she’s a mother who loves her children very much.

Those kinda make me cry. How do I show her how much I love her at such a young age? If I died tomorrow, how would she remember me when she’s my age? Would she really remember me at all? Or this shell of who I was before? A caricature. A vessel. A pod.

Being this sick on top of everything else scares me. Terribly.

People don’t get it. I can’t hurt you. I don’t have that in me. Not anymore… Probably not really ever. But you, even if you don’t even know you’re sick, can kill me. You can slay me with a hug or a sneeze or an unwashed hand. Life is just that way for me.

I try to explain there is no cure. Just lots if hard decisions, none of which are very palatable. Hell, most the time people don’t even understand what’s wrong with me. Of course, I have my handy-dandy over-zealous soldiers and hungry rats at the ready for explanation. It’s how I define my disease to the children… It also works great for adults. :) Ask me sometime… If we’re sharing hospitality, I might even pull out the plastic army men! :)

There are the dismissers, always. The ones who know someone or met someone and the “But she looks fine” folks. I guess if I could wear my glowing brain on the outside, you’d be happier with how my disease looked… Maybe if I lost my hair or was completely unable to walk it would be more recognizable to them as something truly painful.

The flavor of treatment this time around was 5 days of high dose immune suppressing IV steroids, followed by DTs, then an oral course that was supposed to help with those. The oral course continues through Monday.

Then, of course, it’s back on the walking death that permanently makes my body a tomb and systematically knocks my immune system down to about 25-33% of you fine, normal, healthy people.

t’s a nasty little bastard. Has stopped hearts, caused convulsions, caused skin cancer, caused unusual birth defects and late term abortions. It is really awful.

And if it didn’t do exactly what it is supposed to do… If it didn’t have it’s one benefit, I wouldn’t touch it. But it stopped my disease from progressing when others hadn’t. And that means, I’m stuck with it. Like the drunk relative at the reception, bad jokes, lewd comments and all.

However, right now, I’m just plain sick. Rotten, muscle-cramping, gross, stomach flu: sick.


My brain up & down

Inside My Head: Literal Version

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