Life and Death

I really am going to try my best to make this a short post – I really just wanted to get this idea down before it flew off into the vault of Beth. I think those of us who have severe chronic illness have a very strange relationship with death – I think that relationship becomes even more “unnatural” the more “ill” someone is or the more “severe” the condition is for someone. Whenever you have an illness that poses a real chance of death, there is something that happens in our minds that I think is very strange – for me, that showed up very early on in my childhood when my then-undiagnosed Primary Immune Deficiency put me face-to-face with death several times every year except for my 2nd grade year. I was never personally scared of death. There were, in fact, times during my adolescence in which I actually found great comfort in thinking that perhaps one day when I died, there might be just a quiet nothingness that ended all of the pain and suffering that I endured and that I saw in the world all around me.

I think personally that sense was also heightened by the fact that I saw some of my family members (not immediate but my mom’s biological mother, for instance) die HORRIFIC DEATHS; things I’m not sure adults are really able to cope with and things that I know from experience that children are NOT able to cope with. My biological maternal grandmother died from ALS, or “Lou Gehrig’s” Disease. I really hope none of you have had to watch someone die from this illness because it is absolute hell. The scenery is forever painted in my mind – the few times I would go in to visit her (I did get to know her bit when she was well, so I knew how bad things were on top of the obvious) I remember being absolutely overwhelmed by the smell of disinfectant and death at the in=patient hospice-type residence she stayed at. I remember walking through the double doors and hearing her moaning and trying to speak but only getting out these ghastly screams from far down the hallway. I saw her go from a healthy older woman to a living, contorted, in terribly obvious pain corpse that could, at least for awhile, only communicate via a computerized voice. I could go into much more detail but I really don’t want to here and now and I’m not sure that I am even now okay with remembering these things.

With all of that said, despite the fact that I have not really feared death when it has rapidly approached me, I fear it HORRIBLY in those I love. Perhaps this is a result of growing up having one older family member after another die absolutely horrific deaths (ALS, Parkinson’s, just terrible mental problems and strokes and clots and … just things kids really shouldn’t be seeing in elementary or middle school). Perhaps it is because of my own isolation having been very much excluded from society for well over a decade trying to get somewhere near “back on my feet,” a process that continues. But I do not deal well with the death of others. That is even true with the deaths of others who are not close to me. When I was in high school, we lost one of our classmates (we lost many, actually, but this particular one haunts me terribly) because he had been street racing and took a very hard turn ramp too quickly and died. We all talked on AIM back then; he was my “friend” and although the calls were going around that he had died, his name was still on the screen … he couldn’t have died. I even tried calling his phone and although it didn’t pick up, it still rang. I kept telling myself that he couldn’t have died. He had a girlfriend in high school at the time and she had gotten pregnant and did end up having the baby but he died before this. There are two distinct things I remember about this death: 1. The way the girlfriend stood at the back door of the memorial service laughing with other friends while everyone was sobbing – he was also a volunteer firefighter and a really important and well-liked person in the community, even at such a young age – and the turnout for his services is unparalleled in my many funeral experiences. I was disgusted by that kind of behavior. I wasn’t even that close with him (although we had always been friends since Kindergarten and we were in the same homeroom in High School and he would always sit and talk with me when no one else would). And 2. I can never forget the absolute pain in the sound his mother made when she just started wailing (there are no adjectives that can explain that kind of absolute sadness and loss in a vocalization) when they did his church service (the church was also completely packed.). That wailing, that “my baby has died” SOUND haunts me to this day, 17 years later.

I cannot think too far about the future because I cannot imagine a world in which I exist and my family does not. I tell them all the time that I wish I would go first because I really don’t know how I would be able to get by without them (I really don’t.). That is not codependency, that is finally finding some safety in relationships that were never “secure.” That is a beautiful thing, to be able to go back and work all the sh!t that I had to go through in my childhood and adolescence because of my parents and to have really gotten through it. But to think about the future alone … it is terrifying. I don’t think even the “alone” is terrifying; it is the “alone” in a world that is very literally falling apart before our eyes ALONE that is terrifying. And honestly, I do not know what I would do without my family. I just don’t. I really don’t have anyone else. And that goes back to safety as well … because EVERY OTHER PERSON I HAVE EVER MADE A GIGANTIC LEAP OF FAITH TO TRUST HAS DONE HORRIBLE, HORRIBLE THINGS TO ME.

I cannot stand suffering. I almost lost my mind a few years ago when there was a cat I found at PetSmart whose adoption agency was not doing well for the cats and this poor baby was sick and every time I came to visit her she would follow me like “take me home.” At the time, I absolutely couldn’t do so – I didn’t have the money, I didn’t have the ability to do so having to take care of myself which was nearly impossible in and of itself, and I could not bring a potentially ill cat into a house with my cat who has congenital heart disease. You have no idea how many calls and how many shelters and how many vets I called begging them to help this cat out … but nothing.

That feeling has left me feeling … like if a normal person’s emotional world is the size of Lake Erie, the size of mine is that of all the oceans combined (I hope that makes any sense). I don’t know how one could potentially attempt to define how MUCH one feels, but I can tell you I am sitting here sobbing so badly because of what I have written so far and the fears I have about the future and me being in that future.

There is a lot written here, I know – more than I mean to write. But I was just thinking of the topic and I was wondering how other people with severe chronic illness or other disabilities deal with death – both with their own coming to terms with dying one day as well as their emotional reaction to those around them dying … and perhaps why. I really would like to know a lot of things because I think there are a lot of areas those with very severe chronic illness have in common and I do think this is one of them.

If you would like to share a story or two or more, please do so! You can always comment here (I check when I can!) or send me a private message or email. But I really would like to know how this goes with others who have had to face death more times than they could ever attempt to count. At any rate, I hope you are all well and having a happy and healthy day or night wherever you are in the world! As always, thank you for taking the time to read this – I really would love your input! Thank you very much again and remember – MY HEART IS ALWAYS WITH YOU….

❤ Always, Beth