This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).
The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.
Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.
I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.
I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.
We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.
This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.
“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.
Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.
In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.
Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.
I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.
In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.
The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?
Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.
The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.
I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.
‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.
“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.
Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.
When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.
I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.
“Enter the Hero”
12 hours ago