I suppose I shouldn’t blog tired and in pain, but then I wouldn’t blog at all. I’ve talked to a few people and they seem to feel that people just don’t “get it.” So here it is, I do not have a chronic condition, which is one which is fairly stable or stays somewhat the same with dips and remissions.
I have a degenerative and terminal condition, I have several secondary conditions of which a couple if left untreated, which they seem to be, are terminal as well. I have several conditions which are conditions from the secondary conditions (tri-conditions?). Any of these conditions would be considered BY ITSELF, a lifetime disability. We don’t really talk about these because they are so unimportant to the main fact; that I continue to degenerate without a single remission. Yes, I have some drugs which hide these effects, or minimize them showing, but do not slow their degeneration.
I have reached the part where I have a path in front of me and I have to make choices, which is somewhat ironic because I have dementia. Remember that people with Alzheimer’s have dementia for a couple years sometimes before being found out. The woman that cries because no one will give her toast because she can’t remember eating the piece she had 2 minutes ago, is looking at people eating toast, making deductions (“They have toast, but I don’t!”) and acting on those deductions. Just because I am intelligent doesn’t mean there aren’t day I don’t I know what year it is, or day, or what city I am in or that I don’t need to be watched to ensure I don’t wander off.
I don’t know how long the path is, or where it goes but I know from what I’ve seen that it isn’t that great after the first bits, and probably has a few monsters along it. Linda and others are saying that I’ve lived enough of my life for other people and maybe it is time to live for me, for them. I think near the start of the year I asked for a family, a genuine family because mine has left me, and people responded. I guess some thought it was a bit like getting a bunny or goldfish because some have drifted off, their AB lives moving too fast to accommodate me, or they keep their distance, which is pretty much I expect from family to be honest. Some others, took that seriously. Some people wanted to be there for me, and have been.
I am alone, I am in pain, I am frightened. I have no medical assistance even to the level of painkillers which I got from a walk in clinic. I spend most of my day TRYING to get a better quality of life so telling me what I “should” be doing, unless you happen to work with Canadian paperwork (remember it took a YEAR, and several 14 page documents for them to determine I would never work again, am likely terminal and without income and due to a lapse of an agreement with the UK, would not be helped by the Canadian Government), please stop telling me how I can instantly improve my life. Because I am tired of failing everyone by not being exciting enough or not in pain enough, or not improving enough.
You want to help me, convince me that I am not alone. No, not that you will continue to watch while I die but that you will hold my head, that you will hold my hand, in one way another. I know that in the next few months with US thanksgiving and Xmas that people will be too busy to care anymore, they have their ‘real’ families, and real friends and the online film of Elizabeth’s Death just can’t compete. First off, I do not want a single Xmas card. I don’t keep Christmas. And if you need to WAIT in order to show you care about someone, then I have failed. I am in my own way ruthless because what I demand, not ask, demand from my friends and family is CHANGE. It is what I demand from myself. And if you have a habit of only showing that you give a damn about other people at Xmas, and you try to include me in that, it will be returned to sender. Because, what, you can’t look back over the last week and see a human being in emotional, physical and every other kind of anguish? There are two types of people, there are those who act (a.k.a. you change how you act!) or those who keep walking.
I started the postcard project because I wanted to believe that humans could care, would care about other people if they were just given a chance. Some, about 4 to 5% met that challenge. About 50% we never heard from. And because I don’t know which person NEEDS those postcards, I just keep sending. It isn’t my purpose to judge. Except now I don’t have the energy to continue. And I as I have said before HELP! HELP! HELP ME! MY GOD HELP ME!!!!! Apparently some might have missed the earlier notice. I haven’t received a single e-card or the like.
I guess, it isn’t just the Christians who say they will think of you and then stay away. I am in the equivalent of a burning building. And I’m terrified. Don’t you get that. I don’t have head control some days, I pass out frequently, I don’t have hand control. And I am here, past midnight, spending all the time since I got up writing to my friends. Because you are my friends right?
See, the point of this blog is that I am not only just like you, that I AM you – I got a disease that ANY of you could get, I am where any of you could be and I am being treated like ANY OF YOU COULD and will be. And how you treat me and the others who come across your radar, remember because that is how you will be treated. But now, while you are AB, your life, like other’s lives fare from the reality of where I am, will always be urgent. And yes, I know I come behind the milk you just ran out of, and the shopping list that needs to be done.
I can’t return all of the 20 emails, hate mails and demands every day. I try, but I can’t always, often. Sometimes because I am on the floor making the funny dance. Sometimes because I am staring into space. This is how my world ends. I have kept every promise that I have made and sent out a card to everyone who requested it; that will probably change soon, just out of physical need. We did, the three of us, 128 postcards in 9 days, and excluding one person received back, um, 4 (see 4%!). It cost us about $500. That’s the plain reality. I have no money, and I don’t spend it, what allowance I get I spend on others.
Okay, so my life isn’t how I planned it. I have a terminal disease just when I was going to be the bee’s knees, I had won award, I was doing not bad in national sports and hoped to move up to mid-rank in the US and Canada in my sport in the elite level. Sometimes you TAKE the road less traveled and sometimes it comes for you.
Sure, I would love to spend my time as an AB again, doing a full time job and having fun and reading 5-10 books a week, it was fun, it was exciting, it was disappointing, it was LIFE. Right now I have life too, but one that seems out of synch with everyone else. One where the people I get along the most with are those who are out of synch WITH me.
Do you know the only times I am truly at peace? It is when I am racing. Because there is simply no what anyone could reach me to save me in time if my heart went. And I have two choices, to push, and finish or to quit, and I won’t quit. So I either finish or die. Every time I go out, I know that is my choice: finish or die. What else is worth five days of pain so bad I can’t sleep for two days? But here, with everyone telling me what I need to be doing, what I should be doing, I am confused, I am often incapable, I am this girl. And that isn't a metaphor, I am THAT vulnerable, I am that pleading for someone to come and help me, because I need to be held. If not more.
I want a life where there is fun again. I haven’t really smiled in probably a week. I want to smile again, I want my life again. I want to LIVE and know the joy of living, and yes, dealing with the consequences. But I can’t do if I am spending so much time recording my best two hours in a week and taking photos and then thinly spreading them out over the rest of the week in my blogs. I can't LIVE if I am lying to everyone about okay my health is because they don’t want to deal with it. Okay, I am very ill, I can’t move by myself often. And that is with my pain masking drugs. I think Linda describes it on her blog. I wish it was a different way, I wish I bounded out of bed looking forward to a new day, a new day of action. Truth is I use dialogue as a way to focus against the pain and to stop myself from passing out. I want to be the impish girl who is trying to make the world conform to her, but I gave up that illusion long ago. Without help, and I mean people help, that isn’t going to happen. In fact, I can say, “Suck it up, Buttercup” and “I’m going to take back my life.” But the truth is that I am going to exercise tomorrow because I am trying to do something to extend my life a few weeks, because I made promises to people, that I would try until the end.
And I keep my word, as much as any human can. I will be here, still trying, waiting.
I guess the question is, where do I apply for someone to care about me, just me, for three full hours a week?
13 hours ago