“Life shortening.” The phrase I live with. It means I could die tonight or it means I could live on for several years. When I am likely the third or fourth most expert person with my disease west of Chicago and I will say it plainly, “Haven’t got a clue.” It is impossible that I should still be here, and yet here I am.
How am I? A question I haven’t answered in a long while. I wake every day in pain, which usually means nightmares too (brain interpretes pain into the dreams, today I was run over by a train...but it was a very nice old steam train). I take sedation and pain killers to get my eight hours of sleep. Within two hours I will have passed out again, the slight increase of heat is draining a lot of my strength despite us having two air conditioners going along with fans. Today I woke with a full body scream as my leg muscles went into full spasm/Charlie horse. Luckily Linda was leaving and was able to calm to leg and give me a muscle relaxant. She saves me, so many save me.
I have been in pain in the muscles and the bones, as well as pain on an almost cellular structure. I cannot lie or sit still due to the pain and yet passing out is the only way to stop it. With three different pain killers I can sit enough to read sometimes or focus. Right now I am turned sideways and trying to type through the haze that the pain is bringing; I took these pictures earlier fighting against the nausea and pain before finally falling to the floor to writhe before curling up. That part of that day done.
It doesn’t seem much like living but I am working to keep at it. I have things to look forward to, like the 10K this weekend. They tell me I must not fly. I tell them I fly or throw myself off the railing enough to make it look like flying. I don’t care if it takes all day, I will have this.
Physically, um, lets see, I have much of my right ribs and inter-costal (sic) muscles ripped due to seizures, so that makes it hard to breath, I feel under a weight of stones, buried alive sometimes. As for how my muscles feel, do you know how in gym classes they shout at you that you can do “just one more” until your muscles collapse in quiver. It is always ‘just one more’ and I drop a lot of stuff. But I am not crying, well, not today, or yesterday. That’s just pain, and passing out, and stuff like that. And no one really knows what it is like to be me, or you, do they? They tell us that pain is relative but I never listened enough. Pain and situations are relative and what I have other people think they could not survive (well technically no one can) but I think of what they have endured for years and think, “How do they do it?”
Not just those with disabilities but the AB’s, those who risk themselves, their heart, their emotions in new ventures, in confessions of love, in confessions of limitations. “I cannot do it alone.” Is one of the hardest statements to say. Here I am, according to Linda, with Cheryl and Linda to watch over me. Not exactly the picture I have of myself.
Now this is how I tend to see myself: I am all three, I am the ‘serious’ one trying to get some reading done, I am the one calm and serene with the parasol (notice that one is small and far away) and I am the wild child who has gone crazy on the sunny day with a hose of water. Woo Hoo! Why is everyone such a party pooper!?
With 15 years behind me and new friends coming up and passing the one year mark I have to wonder how much can the lion and the lamb live together, the cat and the mouse. I think, that perhaps some things, like caring, like having desires and wanting someone who gets those desires is universal. Of course, I am the cat here because I have the rocking jewelry. And because Linda has something to eat (hazelnut cheese!).
I am coming to terms with myself, or rather making friends with isolation. I have always been one to jump into things and when I can’t, I instead plan what things I am to jump into. Now, I lie on a bed, propped up and listen to the rain, and try to breath, try to read a little. I try to dream but after a year of trying to remember, it is easier to look backward than forward.
And yet there are people, those with chronic illnesses, who have learned to make friends with themselves and their dreams. So there are dreams that are slower, are more meditative. Maybe they can teach me how to live out the ‘shortened life’ in a way that is different. People didn’t understand what it meant to love something and lose it of choice. Well, see, you need to love yourself enough, that while you caress yourself, you are also strangling the life out of yourself. Because THAT you has to die so the new you can live. How can I learn to shower with assistance, to need help on and off every wheelchair and toilet, need assistance in these things in order to spent my thirty or sixty minutes outside a couple times a week? I choose where I spend what little reserve I have, and I can’t do that by being Elizabeth Fucking McClung. I love her, but her vigor is killing me, her ‘my way, even if it kills me…” WILL kill me.
So I choose to stay indoors most days,I choose to stay in bed some days, I move very little and get as much help as possible so that I do have a choice left. That is what it means. I CAN go out with Linda and Cheryl because I learned to love them enough to realize what real selfishness was: wanting it all without paying the price.
That said, as we took these pictures, Linda said, “Oh, I don’t think I would look that good in a tux.” My heart leapt! “Uh….well, I don’t look good in green.” I mumbled.
“You look great in green!” she said.
“I think you would look great in a tux.” I said. We looked at each other and Linda said, “You know, there is a bottle of champagne in the fridge!”
We were, alas woken by night care. I asked the night care worker, “You aren’t able to assist us with sex are you?” She sort of stared. “I mean moving me to different positions?” I amplified.
“We can’t do any lifting!” she said with a “WHEW!” little laugh. DARN.
Linda is talking about moving to an apartment where I can have a kitten. I am for this except for the packing part. I don’t know if Linda has thought this through since, she is likely to sort of end up with TWO kittens, as hey, if playing with string looks fun, why shouldn’t I do it! Of course, a kitten might mess up my elaborate preparations to meet Linda at the door as she is coming home!
How am I? I am achingly lonely, even when I am surrounded by people who need information whether it is workers or doctors. I think of too much. I think about how these are the same workers who were there when my grandmother’s oxygen wasn’t turned on, and she was suffocating. Are they the ones who might work for me? I think about how she isn’t coming back, not another story, not another question answered. It bounces around in the head. Just like how I went on the MSA and autonomic failure websites and forums and asked some questions and gave some comments and was roundly ignored because…I was a freak. Even for those with autonomic failure, my rate of decline is 3X to five times faster than them. I am younger (people are there to talk about taking care of grandparents...and parents sometimes), I have done everything they say to to: seen a neurologist, seen a specialist of autonomic failure who can say for sure that no, this isn’t the “nice” kind of autonomic failure. But She owns the clinic, has seen thousands if not tens of thousands of people with central autonomic failure and I have that and a bag of fun more and yet...she doesn’t know what this is. That bangs around in my brain, and I am the one outside when everyone else is indoors where it is warm.
You really want to know what I feel like? Once my parents left and I think my brother was supposed to be watching me, or somehow everyone thought everyone else was supposed to be watching me and I was playing with the other kids and then one by one they went home. They had homes. And it started to rain. Until eventually I was alone. And every time someone asked I said, in slightly more hysterical tones that THEY were coming for ME. They weren’t going to leave ME! They were COMING! I was going to go home and be warm and be fussed over, and I wasn’t going to be out here, on the saddest of all places; a playground with no one to play with and pelting with rain. But they didn’t come.
I guess that is part of the looking forward/looking back thing I need to work on; I am trying, and until then, Linda and Cheryl, who know what it is like to have a child, a teen, an adult and an person who can’t understand why they can’t be an equal (Right before they go into a seizure and forget the last two days) are taking care of me. They know what can keep m occupied (sometimes even happy), and sometimes it is rather simple and sometimes complex. But I always try to have cool and matching jewelry! I guess that is the honest answer to “How am I?”
Er....so..um...how are you?
7 hours ago