Hard Times: children, Seattle trip, some joy

I was going to talk to you about suicide and how, in the next week or two, I will be using a 9 millimeter hollow point to blow off about half of my brain. Because I am in hell, and I have been in hell for what the record shows as a month. But for me is so much longer. But we can talk about that later. Becuase I’m going to talk about pregnancy instead.

This seems to be the day or time when everyone is having a tough time, stony ground, some sort of global shit storm. Bosses mad, bosses down on people, people down on people, people down on themselves, a tough time for everyone. It took me a while to get out of bed because there was nothing I could find in my life that made me want to get up for it. And the thing is even if you are surrounded by people, or in my case, when you are not, there is such a sense of isolation, of being alone, of people just not understand what you say. That somehow, you have been pulled out and are far away, from the people who care, or there is no one left to turn to, and you wonder, not “why am I stuck here?” but “Does this ever end?” and you can’t see how it would.

Due to a trial offer I may be going to Seattle sooner than the Blue Cross paperwork and ordering. They are trial offering their concentrator so people will buy one (never mind that I’m TRYING to buy one). Of course that is supposed to be good news. Because we will take the tests down and what? I have sort of three possible scenarios. 1) They tell me some more things I have – no one has yet, come up with an auto-immune disease that eats axons of nerves, or what is causing my anemia. They tell me what type of autonomic failure I have. They tell me I am going to die. 2) They tell me that I have the one type of autonomic failure that doesn’t die right away and maybe they have some sort of idea of the two autoimmune diseases I have, the anemia, the neuropathy and well, hoping they get everything is a bit much, except if they don’t any of the ‘little’ diagnosis so far could kill me too. And the worst, 3) They don’t know either. See, even if they say, well 50% of this is from some form of conversion disorder, that still leaves about 6-8 things that could and will if left untreated kill me, and no one as yet knows why they are happening. So, I am REALLY trying to see the upside because everyone wants Seattle to be the answer, and maybe it will. But if this was you, would you want the answer? Unless it is, “and then we expect remission” I don’t.

Which brings me to having a child. Because for the last two years Linda and I have had repeated talks about having a kid. And Linda was always going to be the one pregnant (have you SEEN her hips!). And she had people at her office do IVF and they recommended some places but Linda doesn’t want that. Not now and probably not ever. Since we talked about how if we had a child right off, like starting April 2007, they might have some memories of me. They might. But my desire for a child hasn’t diminished, but rather increased. Which is odd and I feel very uncomfortable talking about. Is part of that because the studies showing that for MS and other auto-immune diseases pregnancy often causes remission? I don’t know. Is it because I am desperate now for meaning and would want to give my body as a sacrifice for a LIFE.

But of course, I can’t have a child, ignore the $5,000 cost of getting IVF I think, and the fact that with anemia and the other conditions I would not be giving the child a very good chance at growing, and that I am a carrier for SMA. Besides that, well, there are other problems involved. Maybe if I was totally healthy and I was over in Vancouver and I went to the women’s hospital and said, “I need help having a baby.” Maybe they could help me come to term. Or close enough for c-section birth. But that isn’t going to happen. Not with me right now. So why does it matter to me so much? I had a friend with PCOS and after not having a period for many years she started getting help to try and see if she was viable for fertility, for a child. And what a BITCH that first period was. They couldn’t say, but she had to try. I understand that.

Look, I know that I can’t fully take care of a child, I can breastfeed, I know that (another day for that story), and that I may be wanting the child for all the wrong reasons. And this isn’t a puppy and this isn’t something that you say “I wanna!” and that’s good enough. And with my particularly genetics, I couldn’t have a child who wouldn’t have at least a 50% chance of SMA. And looking at my family, I suppose it best that we die out. But a child is the a creation which is unique, singular, eternal in their own way.

We moved back from the UK so we could be near our nieces and nephews. Linda has seen hers, played with them. I want her to go back again this year. I want her to be part of their lives.

This is going to be one of the odder blog posts. Disease and wanting a baby. Knowing that isn’t possible. Knowing just like I knew three years ago. But it was different then because it wasn’t KNOWING. I shouldn’t think about it, I shouldn’t torture myself. I have tried for 11 years to get a cat and never lived where I can have one. As someone said to me, “Plush Bears don’t have babies.” No they don’t. No children, no grandchildren. For me not even neices or nephews.

I want to distract myself. I want to do something to be happy, for that moment. I just don’t know what to do. I need someone to come and help me. But that isn’t going to happen either. For all those who it is bad times, find a little joy somewhere with someone. Because you don’t know when that will be taken away.