Think about a time in your life when you felt utterly and completely alone. A time when the world turned its back on you. When the vast number of people on a street or in your house faded like an echo. Hope dried up–like a cracked riverbed in the desert. You felt the reality of isolation as acutely and as infinite as one soul laid bare in a raging, howling winter storm, standing, the only one in the world, frozen and dying on the middle of steel-frozen lake. No one cared–not one person is 7 billion. This was a time when you finally understood that ending your life wasn’t what you had thought it was–it was a siren’s song, an alternative to trying to continue to endure what had become unendurable. The people in your life (if you had any) were not there, your family was silent as the grave, and for the first time in your life you understood the full meaning of loneliness.
Now, imagine you’re not just alone on that frozen lake–you are not just an one entity in a selfish, cruel and unkind world. You are just as alone but you have the added bonus of being trapped in a malfunctioning machine that is backfiring and assaulting itself. This machine is falling apart and injuring you with every second that passes. You are you, but you’ve been reduced to a snarling animal inside a locked cage. Your mind is screaming at you to run–to get the hell away from this machine that is slowly and deliberately trying to destroy you.
Now, imagine that machine that’s trapped you is not mechanical, but biological. It is your own body that has trapped you–your own body that assaults you, causes you debilitating pain. That is what it is like to have a faulty body made for a purely physical world. A body that attacks you–a body that is against you. All this because of faulty genetics. It is purgatory descended into hell. Being alone is something we all deal with but being alone, trapped in a body that can’t keep itself together, is a whole new type of hell. One few people will ever experience to the extent that I have.
I don’t know how it is possible for my body to produce and contain this abject pain and suffering. How it does it–how my body can handle that intense pain and excess stress I really don’t know, and that’s on a good day when the pain fluctuates between a normal-six or seven out of ten (ten being the worst pain you can imagine). The last three days for me I’ve been at a constant level eight pain. But yesterday the pain started spiking towards level nine. And today the pain has not dropped below a nine.
I’ve taken double of everything today and that hasn’t touched the pain. So to say I’ve had a bad day is a dramatic and insulting understatement. I think that having this pain is not something that I will ever get used to–I don’t think it is something anyone can get used because some days, on days like today, it is very easy to forget that life is actually worth living.
Just admitting that, breaks my heart.
But, I know two things for certain.
One, some part of my spinal column has shifted, creating a bulge on my spine–the pain caused by that is unimaginable to everyone unless you’ve been through something similar.
Two, I experienced a bowel prolapse about a month ago, since then normal human functions have slowed to a stop, and if I eat–I throw up, so these days I live on a diet composed of mostly liquid and toast, and I try to have at least half of a normal people meal.
When I say I am utterly alone, I mean I live in a world incomprehensible to most people.
Because of all these terrible health issues, I’ve pretty much living in a state of constant terror. As it seems, I may not only have EDS Hypermobility Type, I may have another type.
I am terrified because on the 20th I have a big appointment; one where I have a sinking suspicion that surgery is going to be brought up. I don’t know what’s going to happen next.