When I take risks and succeed, everyone is happy about it, me greatest of all. When I take risks and they fail, everyone walks away, silent. I cannot walk away.
The time it will take you to read this post will be 1/30th of the time I spent in full body seizures yesterday. It is less than 1/100th of the time I spent in pain, incapable of converting enough oxygen, unstable, perhaps unlivable in the body that had those seizures. It is less than 1/100th of the time today I spent as the cost, recovering for what I hoped was to be 8 hours yesterday as a fun sentient human being with friends, but ended up as only 4 hours of time.
That is what is on the table, rationality, the ability to speak, to be understood, and to live without medical intervention or at all. It started with muscle spasms. Independent spasms in my right quad which I was later to find out were indicative of a lack of oxygen. And then, up on a ridge with a temperature close to zero, with snow on the ground and gusts up to 40 miles per hour, I began to burn. I was a de-compensating body; unable to convert oxygen in my lungs, unable to stabilize my heart and my heat. Every comment, joke and story I told in the car on the way down took me further away from humanity, falling down the blue well, as my nails and then lips turned blue. The pain in my bones, in my thigh increased. By the time we got to a house, it felt that there was a cancer in my thigh bone, burning with acid. I would have willingly broken that bone with the muscles in my leg, which were starting to spasm as well, if it would stop the pain. It was too much to sit, I had to lie down.
As the muscles in my body lost oxygen and nerve conduction, they weakened. My soft palette fell across my throat blocking my airway, so when I opened my eyes from my daze, while I might now have the desire to breath, I could not. It was like someone holding their hands forcibly closing my nose and mouth. As each second went by, I could not communicate, I could not breath, I could only feel the tension in my throat as the frenzy to breath grew stronger. My arms, what movement they could make, flailed as they tired to catch or find something to pull myself upward, a task that was too difficult for my weakened muscles. I think I managed to hook Cheryl’s face and as each second of burning in my chest, in my heart, screaming for oxygen, she understood, and lifted my head enough that I could suck in air.
This was to be one of the milder incidents that day. Or that hour or more spent on the floor. I screamed during that time, more than once, I believe. But most of the time I wasn’t there (I was away in the darkness) and when I was. There is no horror film that scares me because I was surrounded by three people who cared for me, who were TRYING to understand me, and couldn’t understand the universal message I was saying over and over again; I said it until I couldn’t speak, I begged it with my eyes and even tried to write it and yet, they just looked on with friendly puzzlement, while I tried yet again to say: “Help!”, “Help me!”, “Help!”
I was helpless, in agony and though people were there, completely alone. They were a foot or more away and yet no one could hear my cry, my whisper, my BEGGING: ‘Help’
It went on and on, my only relief was passing out, from which I was brought back time and again because I had stopped breathing and if I didn’t breath I wouldn’t live. If I didn’t live I wouldn’t hurt. I was fatigued from attempting to live. But then the rigor started.
I didn’t know what it was but just that “something” was happening, from my dead feet up, my muscles were seizing, locked in rigor, not slow, but not quick either. I don’t know if the rigor was done over minutes or seconds, I just remember feeling it hit my quads and then my lower abdomen. I remember Maggie saying something like, “Try to move her legs, try to bend them” and someone saying, “It’s already here, they’re totally locked.” And I couldn’t feel my hands, only as it crept upward and I lay there wondering what happens when it his my diaphragm? My ribs? Am I going to drown, to suffocate in a body that has become my casket. Linda said that it went all the way up to my neck. I couldn’t move anything but my head a little.
I started to cry and say no, no. They could understand me now. What was wrong? I couldn’t bring myself to say it, because like the creeping of the rigor I was feeling the same creeping over my bladder control. I was going to pee, piss through my clothes, on the carpet, everywhere, in someone else’s house. I was a guest, and I was going to lose bladder control. And now I had to say it out loud. It was, to me, the ultimate act of loss of control and humiliation, to lay there, feeling the urgency rise, as the barriers slipped away, unable to move, trapped in my body. Even after I left, I felt ashamed to talk to the people there, the person who owned the house.
In the end, I didn’t wash the floor with pee, or my only jeans, and panties. It stopped, though I don’t know why, and the rigidity started to loosen. The seizures weren’t over, but that one was.
When it was done, and I was done, broken but still conscious, I was put to bed. Put to bed while the rest of world kept spinning. Linda, Maggie and Cheryl talked, chatted; the very simple act that I wanted, the sitting around talking that I risked it all for. It went on without me. I had been the creature on the floor, and now I was asleep and life rolled on. I was woken in time to be driven to the boat.
I took a motion sickness pill. A porter pushed me up the ramps. I talked to the couple next to us. The crossing was rough, and though I had plans of writing the blog there, whatever small reserves I had created were gone, and I had to lie down again. Linda was elsewhere and the Purser asked if there anything he could do; I said that my oxygen was now empty, did the ship have any? He needed to get the EMT trained person, who happened to be the helmsman, second in command, who put me on oxygen without questions after seeing the blue of my lips. I guess another hour passed, I know I lost my speech after another seizure, and finger-spelled to Linda, who had returned. Then there was another seizure. The helmsman who was also a volunteer firefighter wrote so just Linda could see, did she want the EMT’s/Ambulance called to meet the ship at dock? Linda told him our car was across the street and we had another oxygen bottle in it. They wanted to give us the oxygen bottle. Linda assured him we could make it to the car.
I was able to be moved into the wheelchair by the porter and the helmsman came with us all the way down to customs, and Linda helped me to the van, which I could not transfer into unassisted.
This afternoon, I slept a long time and woke, again, with my right side paralyzed, having to knock and wait until Linda came. She was able to lift my legs over the bed, something I can no longer do, and with the one arm around her shoulder, I was lifted clear of the bed.
This is the real cost of trying to go and see friends for a day, only it wasn’t a day, as more than twice the time that day and three times the time today already spent in peril or recovery than I spent being a upright human being. This is what my hand looks like, my “good hand”, the one that isn’t paralyzed as I write this, I call it my zombie hand because, would YOU want this coming through the mailbox in your house with the groans and moans which cannot be understood as human speech? Because that is often how I sound in seizure, or afterwards. I am the THING of which horror films are made of.
So THAT was what the last two days were like. And yes there were a couple good hours and I have pictures of that, but I have no intention of cutting the good bits out to construct a story, like taking usable organs from a corpse. THIS is the story; that I took the same precautions I take normally and more and it failed, and now I am in pain. I am humiliated, I am alone. There is no look of defiance, there is fatigue, there is looking ahead and realizing that this is what “life” looks like, most likely from now on.
Linda and I talked about pupil checks during seizures and TIA’s and I told her that if one of my pupils is blown, or rigid, to not take me to the hospital. Because that would mean that there was enough blood on the brain for major brain damage and that the chances I would survive, and then pass the time of rehab to allow me to speak to her again before dying is slim.
But I am not dead. I mean, yesterday either enough oxygen wasn’t getting to my fingers or enough blood had pooled during the rigidity that I had black tips. My palm is a giant bruise. So while I may not have ALL my digits or limbs working, I am not dead. Which means that I go on, whether I desire it or not.
I just don’t know how. How do I apply for a job after yesterday? I am either having or recovering from a seizure every day now. The fact is that there may NEVER be a better, that this IS the better.
I am sure I am supposed say or it will be said to me, “Don’t give up!” Give up on what? There is no cure, there is no remission, there is just tomorrow. Even the helmsman on the ship knew that. I cannot go from point A to point B without medical assistance: to transport, to move, to eat, to breathe. Soon, I guess to excrete.
And maybe that wasn’t the “adventure” you came here to read about, but I can assure you, it is riveting watching EACH day another thing you thought was part of the automatic control in being human burned off, taken away.
Will I try again? I honestly don’t know. I used to go wheeling long distances but after being taken to hospital from here and there and having to have Linda pick me up from different places I learned that it just wasn’t worth it anymore. That wheeling down to the mall to get a Orange Julius by myself isn’t worth dying or worse, the 8 hours in the hospital before you are released to spend three days recovering at home.
Dying doesn’t scare me. Living scares me. Because everyone, even Linda, is very far away, on the other side, watching me break and scream instead of doing it. And then putting me to bed as she gets on with her life, her future, her job, her career, the excitement she has over a project that will be coming to pass in two years.
I am cared for, so that she can live, so that life goes on, while more and more, I am behind the glass, next to the air conditioner which keeps me conscious, and breathing. I see the blue sky but not the sun from where I live. Not the sun.
I guess now I’m not playing at being a goth, I’m living it. But people reach this part, and they go on, some have futures and some do not. I don’t know how to do that, to go on.
I have always hated that saying, “Whatever doesn’t kill you makes you stronger.” Which was said by a guy who lived with his mother. “Whatever doesn’t kill you leaves you with scars.” Lots of scars.
So how do I go on? There is no plan, no adventure up ahead. That was it: a month in the planning, and 36 hours of pain.
I don’t know. I think I am in what they call “recovery.” And if that doesn’t make interesting reading, or that isn’t the Elizabeth you have come to think you know, I have no apologies. If I am human, allowed in the classification of human, then I weep, I sob, I suffer, I mourn, I grieve. Don’t take that away from me, or walk away because I do it publicly.
My helplessness leaves you helpless too, I suffer and you can do nothing. I scream and you can do nothing. I cry for help and you do not understand. So it is not what you wanted. Witness it for me. Witness it and when you don’t know what to say, say that. If I can bear it, you can bear to watch it. Or you can leave, for a host of reasons. I wish I had that option. Believe me, I want off this ride more than anyone.
I’m asking, if I am a human, then as one human to another. Stay with me. Stop running and look. Maybe I will get up, maybe I will try again, maybe I will keep falling. I don’t know how to go on from here. I know what tomorrow brings, statistically, a TIA, pain, brain fog, fear, confusion. There is no hope here.
But still, stay and witness.
2 hours ago