Last Saturday and the piece of sky and trees

Another seizure, and now I was conscious enough to see a little out of my right eye. In this last seizure Linda said my head had been so violently slamming up and down it was then that I had pulled my main left neck tendon. That throbbed. My head, supported by pillows lolled and a little drool came out. When I could make sounds, it was barks of pain, heart pain.

Cheryl checked my heart with her stethoscope and found that it would beat, beat again and then just start to flutter for a while before resuming beating. The other side had a different irregular beat. Between them, it felt like my heart was the pavement that the fist of God was slamming against over and over. My blood pressures' diastolic, only a few hours before had been 50, and now was post-seizure 143. My veins had constricted to create so much pressure it not only backed up my heart but also made my kidney throb.

Before I had regained the control to talk, I would scream; scream and scream from my heart until it was a prolonged series of sobbing from the pain.

I could not see out of my left eye, or feel anything on my left side. My right kidney was in so much pain, even just touching my outer skin caused me to scream louder than before. It seemed like the high blood pressure was stressing the kidney to the limit.

That morning, early, I had woken from four hours sleep with heart pain, Cheryl had found my heart was missing every fourth beat so I took some beta blocker heart meds to make the rhythm consistent and went back to sleep. Now, a hours later, even with Ativan, a dilation for veins, they weren’t opening, nor were the seizures stopping.

Linda or Cheryl would wipe the tears that ran down my face after another seizure. This was when I could not speak or move. You can feel the pain yet be paralyzed, but you can still cry, silently.

Through a sliver of window was the sun shining on tree tops tossing back and forth in the wind, and a bit of blue sky and white cloud.

My life, my real life, was out there I understood now. My eye followed the movement of the trees intently because I had realized that this was all some horrid mistake. That I wasn’t supposed to be HERE, helpless, in agony, with pain which seemed unending, facing a future which took being in endless pain if I wanted to live. This, people were trying to say, was my life.

No, no, no, no, no. My life was OUT THERE. It was waiting for me. I was supposed to be kneeling on the grass, the wind in my hair, on my face, then I would get up and Linda and I would bike off for our day trip, the picnic packed in the bags. Out there, in the sunshine, in the breeze, where people walked and talked was where I was SUPPOSED to be, not here, in a little room, surrounded by air conditioners, where the only relief was others dabbing away drool and tears.

Then my hands went, very quickly. Turning to purple and blue. Not the tips or the fingertips but the palms, the inside of the thumb and not in hours or tens of minutes but in a few minutes. There was a keyboard on my lap and I started typing “help me, help me, help me, help me,” because what I saw was the progression of my own death.

I had been prepared for a quick heart attack or massive stroke but this agony of an hour, then another of pain and now, not the slow creeping but the fast moving dusky colour which indicated that I had either stopped converting oxygen significantly or that the oxygen was insufficient. Either way, if that colour reached my shoulder, where the blood split to go to the brain, I would suffer brain damage, or death soon after. I could not stop staring at my hands, my wrists, because in those moment I realized I was going to die.

My heart and brain were on a cycle where the weakness of the heart, the pain and lack of oxygen would trigger a seizure which would make the heart even more erratic, more weak. I was on 3.5 liters of oxygen, Linda asked if it should be turned up. Cheryl said no, and mentally I agreed. Cheryl said the problem wasn’t the lungs not getting the oxygen, but not converting it, or circulating it and more oxygen would just give me further nose bleeds (which I had already from the blood pressure of the seizures).

Should I go to the hospital? There was a machine there which could put oxygen into my blood. However, it would destroy several organs to do it and I would be on dialysis and have a very limited life span. Not that, at that moment, it didn’t seem like that already. It didn't seem worth the effort and pain either. If now was it, better here than a machine destroying me even more.

I wrote that I should take another heart pill to try and regulate my heart, and stop the cycle, and that we should use the hospital bed to elevate my feet and get as much blood to my brain and heart as possible and see if that worked.

In the end, it took five hours on Saturday until I was stable enough, and my heart beating regularly enough to leave the bed. Three hours of emergent care at home, two hours of sleep. And almost 50% of my day gone, still in severe pain, as the Lyrica doesn’t work on my muscle pain, which come from the seizures or the deprivation of oxygen to muscles like the heart.

I lay there, looking at the fading sun and I knew, I knew that THIS WAS NOT MY LIFE. I was not a bad person, I was, as much as I could be, a morally good person, a person who was kind to the point of being hurt repeatedly by those who are cruel or selfish in this world. Did I deserve this? Did anyone deserve this? Body pain so drawn out yet every second newly minted, unbearable until it hit you, washed through you and I found I was still alive. Alive to wait the next few seconds, and the next wash of pain, all individual intensities yet blended together. I had cried myself into dehydration. But now, I could see the sun fading.

My life or not. So with the curtains open to the evening sun, Linda brought the hospital tray and I took pictures. Pictures so I could write a “nice” blog. So I would not let people down. So I had time, because I did not know how to understand or accept the sympathy or pity of others when my body and hands still shook from the pain, when I turned over my hands to check my palms and thumbs, unbelieving that they where not blue or black. In one mind, I could not believe I was still alive. In another mind, I was with Linda, walking down a lane, or watching the sunset over the ocean on a bench in the park. Because that was my life. Not this. I was alive, but nothing had changed.

Instead I took pictures, pictures like this of the beauty of the Japanese artist Oga,

the other two postcards that we bought, sight unseen from a man we simply gave over a hundred dollars to and never heard from for 10 days when the message "items sent" arrived by email. But having been to Japan we trusted him. We hoped to trust him. I took the pictures from the hospital bed. Linda and Cheryl steadied my arms when it was needed. Because while I could not understand how this WAS my life, I had to do something to go on. I wanted to believe that what I did mattered. Mattered in a way that transcended myself. It was why I pushed myself so hard, why I worked constantly. Because the postcard project and the surprises needed to mean something; or at least I wanted them to. I wanted people to be reached in ways that people are not used to; to care, to develop relationships, to understand that someone cared about them and to change the way they lived, the way they saw themselves because of that.

Because if THIS was my life, THIS horrible, painful, existence where dignity, control, security, independence and human consciousness were all slowly stolen away. Sometimes they were gone before I even knew it, but sometimes brutally ripped off. Yet already here for moments, for hours and moving forward into a chaos that eventually for the rest of my short life, I would be but a beast in pain, without memory, body control, just pain, and function failure.

When I can do nothing but scream, will I be more than a beast?

So if this WAS my life, the postcards were failing, if they did not achieve what I hoped, I had tried, I would keep trying, I would go on. Because there was nothing else to do, unless I wanted to lie and rest where no one would visit me, where I would have no contact, waiting…for what? So I took pictures of the rare original postcards put out over a decade ago with the movie Totoro, the Ghibli classic film.

It had taken three months of developing a relationship with a particular dealer in Japan before I was offered these, and I had to pay a discount but still a significant amount. Collectors Item’s, where this is the front, we think originally blank in the middle for calligraphy. They too will be sent out. Weeks waiting, months in looking and talking to people online, this is how I find my postcards.

So I took a photo of them. And this week I will likely start sending them out. Trying to match the right person to the right card. I get complaints daily, telling me I have failed. Some days, about 15% of the days, the only emails I get are ones telling me I haven’t done things correctly or the card received wasn’t as good as expected or the gifts were in some way wrong, and I felt wholely inadequate (and sometimes emails explicitly told me why and how).

Those days would crush me, and yet, I go on. I know my energy is spent in a project that has not created the effect for which it was designed. I write a blog on which I cannot ascend and yet I go on because that sunshine and that wind in the hair, that life which SHOULD BE MINE is not. I do not stop. I cry, I burn out, but I continue because if I must live in pain and die; which it seems as much as I do not want to, that I must: I will leave knowing I am a failure. But I will leave knowing that I tried to do what I believed. I believe that caring and trying to be there for people even far away is good, and far better than the alternative. That I failed does not mean I was wrong, it just means that I, Elizabeth, was unable to make that difference.

While I live or when I am gone, I do not want statues or plaques or benches or anything except this: to know that a person went on, that human suffering of some people was and is a drop less because of me. That is why I still work 12 hour a day. So it seems I am God’s vessel of suffering and I expect absolutely nothing for my afterlife. I am unimportant.

What is important? Give Linda happiness, give Cheryl happiness, give all my adopted family happiness and have it so people are happier because they knew you. So some people are less afraid of connecting to other people because they knew you. Help people believe that a deliberate kindness to themselves and others is an act worth doing.

I have, so often, been blessed by acts of kindness, deliberate planned kindness: by visits, by gifts, by emails. Somehow, when the pain is all I see and, when that small bit of sky and trees and green, seen hazily through one eye seems so far, far away: then it is easy to focus on what is lost.

I comment only for myself, but acts of genuine kindness, of generosity, of showing in ways ordinary and extraordinary (I am thinking of you Collette, and Dr. T., and all the others) have demonstrated that I matter, perhaps even to them.

In these acts, from all these people, I have changed as a person. I have more joy, I have more belief, more trust in people, I am willing to risk more, to act more, to give of myself, to reveal more because of you. Because of you I go on. Becuase of Linda I go on. For those who tried, who risked, who gave or opened themselves to me. You succeeded. You changed a life. Admittedly, a rather small and short one.

I will keep trying in spite of being unable right now of seeing that bit of sky and green, that view from my window which represents all that is not mine, will never again be mine. I will keep trying because that is who I am. That is who I have become.

I wish that I should not have to go through this. I wish that no one should ever know or feel the kind of things I feel. I wish that caregivers did not have to stand by helpless, watching; sometimes the witness of the agony and the repeating, “I’m here, I’m here” the only comfort they can give.

I finally understand some of the things those ladies said to me as I sat with them on palliative watch as a teen, they on less pain medication than I am now (nice crazy cult). Some things said to me, some things they said to God. I understand better now why they said them.