First the good news. On Sunday I went to my best friend Saira’s baby shower — in theory she had plenty of time to wait still and I think they’d just (almost) finished their baby renovations days before. But theory with babies is just that and the next day she said to Michael, “I think we need to go to the hospital”, and not long after a little four and a half pound healthy baby girl was born that they’ve named Kiran.
The bad part of my entry is not unexpected (other than, as with the baby, in timing), and it’s why I have to apologize for not posting very much lately, and unfortunately I think that may well be a trend that stays that way. I’ve hardly been able to do anything for the past month, being bedridden for the majority of the days, just barely able to drag myself up and “activate” for the times I need to be there for Nefarious. I think it’s been particularly difficult because the pain and weakness in the muscles surrounding and including my shoulders becomes more pronounced as the dystrophy spreads there (something I’d been warned was already showing up on the tests, so I knew it would happen some time). Having the problems in my arms as well as my legs make everything dramatically harder, not just because you can’t offload strength tasks from your legs to your arms, but because it creates a whole-body malaise that’s hard to shake, to say nothing of pretty much everything being so painful, tiring, and physically difficult that after only a few minutes of work or activity one feels very overwhelmed with pain and nausea.
Getting back to the baby shower, even though I didn’t feel up to going, I really wanted to be there, and I did manage to make it. However, about ten minutes after Caitlin, Nefarious, and I arrived, I started feeling more and more horrible, and told Caitlin I had to leave and asked her if she could find me some plastic bags in case I was going to be sick in the truck. I made a hasty escape, but not hasty enough, and stumbled only to the door of the truck before I started projectile vomiting — something that’s rather embarrassing to be doing on a pleasant Sunday afternoon on a quiet residential street (thankfully it rained not long after). It took me a few minutes to gather myself before I could crawl into the truck and slink out of there, stopping once on the 90 second drive home because I didn’t feel safe. I’d thrown up my only meal of the last week, half a crepe. I lay down and barely moved for the rest of the day.
With all of this having gotten worse and worse over the past month, I could have sworn I was moving into my final days, or at least wished that I was so that the pain would end. Other than the guilt of leaving my responsibilities, I have no fear of dying, and am very aware that it’s the part that leads up to dying that’s the part that sucks. I imagine that dying is the easy part and don’t give it much thought. But anyway, I spent a week not even being able to hold down water if I drank it too quickly, and completely unable to eat, with even pills being difficult. The good news though is that yesterday I managed to eat a quarter of a bowl of rice and vegetables and felt pretty good for it, and I’ve been trying to drink fruit smoothies since I can’t hold down anything else. I still feel horrible but not as horrible as I have been, so I think I’m on an upward curve again. I feel like I’ll be able to eat a little tonight, and I’m drinking a strawberry/banana smoothie right now to get some nutrients and energy.
Nonetheless, I know that this is just a temporary lull and the odds of things getting better in any big picture sense are extremely low. With less and less strength available to me, it’s quite likely that I’ll be posting sporadically at best. Don’t worry, it’s because I’m investing my energy in living as well as I can, rather than investing it in the internet. Don’t get the wrong impression — my life is still a happy one, all things considered, and were it to end tomorrow I would still feel blessed.
I am however getting very sick of what feels like lying around here waiting around to die, and within the constraints of my responsibilities, I feel like there are things I can still do to make the most of my time, and more importantly, maybe inject some life into me that the medical industry seems unable to find. Before my legs gave out I wanted to walk across the country (something that a Google search tells me a remarkable number of people are doing). I do still love driving though — for example when I picked up Caitlin’s Mustang from the shop today it was very freeing being able to move easily and feel strong by proxy through the car — and I’d love to rent an RV for the summer. Or longer. Or moving to a beach in Costa Rica. Or something… anything other than waiting around to die.
Finally, I wanted to apologize to folks for not replying to my emails or comments or messages as much as is reasonable. Every day I get really wonderful really heartfelt and really touching messages from people from both the distant past and the present, and I just wanted to say that even if I don’t reply I do read all these emails and I can’t begin to tell you how much they mean to me. Thanks everyone.
