I’ve talked recently about sometimes having to transplant hope into dark places. But what happens when you look around and can’t find anything to transplant?
I’ve had a request from a reader to talk about what a day might look like for someone with a PID (primary immune deficiency). The idea here is to show how difficult it can be to live within a body that fundamentally doesn’t work the way it should, so that others struggling with CVID, or any other immune deficiency, will not think they are the only person in the world with difficult days. Knowing that you are not the only one out there can be profoundly healing.
So. Here’s a synopsis, with some background. Knowing that I would be 4 days late in getting my infusion upon returning from France, my doctor and I decided that the infusion I received before I left would be 120% of the dosage that I normally received. So far so good. I did wonderfully while I was in France with no infections or other signs that my immune system had to work extra hard. (That is, above and beyond the extra work it has to do on a daily basis.) I got my regular dosage of of gamma globulin upon my return, and all seemed to be well for about 4 days. I then came down with an infection, which is highly unusual right after an infusion. First signal that something was wrong. Since then, my immune system seems to have gotten further and further behind.
This Thursday will be the fourth infusion since I have returned from France. During the 3 weeks since my most recent infusion, my immune system has gotten less and less happy. Suffice it to say that for the last 3 weeks I’ve had all kinds of skin problems that haven’t been this bad in a year. I won’t subject you to the gory details.
Now on to today. Didn’t sleep well last night. Never do when my immune system is struggling this hard. I consider it to be one of fate’s cruel jokes, and will have a word about this with God when I die. Woke up about 8:00 and couldn’t get up. Went back to sleep. Woke up at 9:00 and still couldn’t get up. Repeat. Woke up at 10:00, let the dog out of her crate so my husband could feed her breakfast and decided that standing up was literally too difficult for my body to handle right then, so lay back down. Had an interesting conversation with my body about how I would really, really appreciate it if it would work a little better for me today because it was (is) my birthday and I felt so crappy that I hadn’t even remembered it was my birthday until my husband said “Happy Birthday” when I woke up. My body and I went back and forth with this conversation until 11:00, at which point my 88 year old mom called me on face time to wish me happy birthday. Her first face time call ever. She saw that I was still in bed and was white as a sheet, so this was her first sentence all at once, “Happy birthday dear oooohhhhhhhh you’re not doing well.” “No mom, I’m not, unfortunately.” We talked briefly and then hung up. I was hungry by then and so that necessitated that I get up to fix and eat breakfast. Then had a lovely phone conversation with a friend who also called to wish me happy birthday, but had to cut it short because I needed to move from the sitting up position to the laying down position again. Got up after awhile, took a shower and ate some lunch. Then went to my therapy appointment where I proceeded to cry while I talked about the fact that I have this darned immune deficiency, the skin on my feet won’t even stay together like it does on any semi normal person, and I really, really don’t feel well. I rarely allow myself to do that, but today it just felt overwhelming. I’m glad I did, though, because it actually made me feel better than I had all day. So I stopped by Trader Joe’s for some lettuce and bought some irises as well because I love irises. I came home, turned on the sprinklers briefly, put the irises in a vase, and then sat down to write this post, hoping writing this would make me feel better still. The jury is still out on that. Tried to make this paragraph somewhat humorous because humor is one of my coping strategies, and because I didn’t want this post to be so depressing that no one would read it. The jury is still out on that as well.
My therapist suggested that I postpone my birthday until the weekend. I think that is a really good idea, especially since we have theater tickets for Saturday night. Hopefully I’ll feel well enough to use them.
When I was a girl, I loved climbing trees. I didn’t have the opportunity very often since we frequently lived in places that didn’t have trees either in the yards nor lining the street. So when I was visiting somewhere where there were trees to climb, I seized the chance. I loved climbing up the tree. My muscles felt good, the climb made me feel strong and in control, and if the tree was tall, the view from up high was fantastic. I loved climbing so much, I would climb up and up until the branches got too thin to hold my weight. I would survey my surroundings, and feel like I was queen of all I could see. There was only one problem. I was afraid to climb down.
Climbing down is completely different than climbing up. Climbing up I could see and reach for handholds and footholds. Climbing down….. not so much. I could glance down to get the general location of the lower branch, but then I would have to look back up to see where I should place my hands and I would have to feel around for the next available foothold. That was the frightening part. I had to trust that my body moving through space would know what to do. Space and I don’t have the most comfortable relationship. My depth perception isn’t completely accurate due to my vision, my balance has been a little off because of repeated severe ear infections since I was a kid, and my sense of volume in space flat out isn’t reliable, and never has been. I can train my body to move through space accurately if I practice enough: driving, dancing, sailing, yoga. But something like gymnastics where I might fall from the parallel bars? Not a chance.
So climbing trees was an interesting thing to love doing. This was never a case of “Oh no, what have I done?” I always knew when I started the climb that I would have trouble getting down. But the climb up was so exhilarating that I almost always chose to climb anyway. Among other things, I knew that I couldn’t stay up in the tree forever. I would eventually need to eat and sleep, and I could do neither while up in the tree. So I knew from the get-go that I would eventually force myself to climb down. But the climb down never got any easier nor less frightening.
I’ve thought a lot about why I loved it so much, because it was more than just the exhilaration and the view. I think it had to do with the feeling that while I was up in a tall tree, nothing bad could get to me. As a child, I couldn’t depend on my environment. It would be nurturing one minute, and 5 minutes later it still might be, or it might not. I retreated into fantasy worlds based on fictional characters and settings from the books my mom read to me. I excelled in school, mostly, and that also became a retreat. It took me awhile to figure out how to read (I’m moderately dyslexic), but once I did, then new worlds became available to me any time I opened a book. Worlds where there might be danger, but worlds in which I knew that everything would eventually turn out all right. The characters were so brave in those books. At least once I progressed beyond “See Spot run.” (Spot was a dog, for those of you who didn’t grow up on those readers.)
Here’s the important thing, though. Everything turned out ok in those books because the main character was frightened of something bad, and she faced it. She (or he) not only faced it, she did something about it. It didn’t mean the fear went away. It didn’t mean she just resigned herself to evil. She fought against the bad thing, whether it was a monster, an evil stepmother, or a thief. She fought against it (usually with help from a friend), and she kept on fighting against it until things were put right. Those books of fiction I read when I was a kid gave me the courage to keep putting one foot in front of the other with the hope that one day things would be better. I think climbing down from trees even though I was afraid was part of that. I think it was a tangible way that I could prove to myself that I could be brave, even if only for an hour or so.