I know I haven’t posted in a while. It’s been eventful in the time in between.
I got sick in July. Pain and tension and cramping got into my body, my bones, my tendons. Some days I couldn’t even open my hands for hours at a time. And the pain was so great I barely slept. We saw doctors and had tests (14 separate vials of blood taken is TOO MANY), and ultimately discovered that I have an auto-immune disorder which has led my immune system to attack me in every joint it could reach.
They put me on medicines to suppress the immune system, balancing dosages with what side-effects I could bear versus how long they took to kick in versus what took the pain away. For a couple of weeks, a friend who tested negative for Covid came to stay with us just to help out. I couldn’t grip a plate, or hold a cup sometimes, or put on my own clothes. It was exhausting in every way. Not just the not-sleeping due to pain, but the strain on my body of being in constant pain, and then the strain of adjusting to the drugs. I slept more than I did anything else, I think.
But the one thing that held up was my spirit, actually. It was so profoundly unpleasant, but only a little scary. Because I learned that even if I couldn’t bend my fingers, I could still think and tell stories. I could sing. I could listen to music. I could talk Sarah through panic. I was still me, wholly and fully. Loss of mobility made it harder, but I didn’t lose myself along the way. I knew that if the worst happened and my body was about to change dramatically and permanently, I would be okay. Because I would remain. I am more than the sum of flesh and blood and bone.
Now that I’m starting to come out the other side of it all, as we slowly decrease the doses of drugs and see what I can tolerate and what causes me to relapse, it helps to know that this was something I could endure. Something I beat. Something I didn’t allow to cut me down.
Today is hard for a different reason.
I have trouble with birthdays. Mine are always complicated. The birthday parties I mostly remember from childhood were never simple. Always there was some kind of drama, some kind of thing that went sideways. As a very little kid, teachers will make sure to celebrate a birthday kid at school, make treats happen, all of that. But because mine is so close to the start of the school year, often the first or second or third day of a new year, teachers didn’t get that sorted out right away. And I got forgotten. Later, as my birthday celebrations became less a gathering of family that included cake and more deliberate parties with friends, the drama got worse. People fought right on top of me, sometimes leaving me to retreat from my own party. And after eighth grade, no one really celebrated with me anymore because I didn’t have friends then. It took the building of my core of people in college for birthdays to mean something new.
Birthdays, if you ask me, are the times when we look at a person with whom we share the world and reflect on how glad we are that they exist. And I’m as bad as the next person at remembering all the important days of all the people I love. They’re in my calendar, but sometimes they get lost anyway. So I can’t resent anyone or be upset when I get forgotten, too. And I don’t.
Birthdays are the worst day to feel lonely, though. And with Covid, with the fact that I haven’t seen the people I love since fucking March, the fact that I’ve only had a few hugs since then, loneliness is never far away. We’re all stumbling through as best we can, and we’re putting our own safety and that of the people around us first, and that’s all good and important.
Those conflated feelings, though, of being alone, of not being wanted, of not being celebrated, they don’t play well in a Covid world where I can’t hold the people I love close.
What adds a dimension of complexity to all this is that I really just don’t like being the center of attention. We’ve held parties before, notably last year when stuff was so hard, and I find myself shrinking away from standing in the center. It’s one thing to lead, to organize, to communicate and coordinate. But there is something else about actually having everyone’s eyes on me, being the focus of all that interest. In so many ways, I would rather be a stage manager than the star of the show. As badly as I sometimes want to be seen and heard, the majority of the time I just want to make everyone else shine and hide in the dark doing my part to make them glorious.
So of course I could have organized something for myself as I did for Sarah’s birthday a month ago. I could have set up a CAH game online, or a chat, or a shared watch-along movie thing. But the burden of standing in the spotlight is just too much. I’m so tired still from being sick for two months, and I’m worn down by the lack of true interaction. Even if we could be physically in the same space, I wouldn’t probably want to be putting together the day and coordinating the fun. I just want to curl up with the people I love and be held for a while. That’s pretty much it. I want to know that I’m not alone, that I’m not forgotten or overlooked, that the people I love haven’t found reason to quit loving me because I’m not there.
Some feelings stay with us our whole lives. Mine, I think, more than the trauma of specific events, is the pervasive cloud of loneliness that marked every day for the first twenty years or so of my life. That constant isolation. And while I have come far enough to know that it was not deserved or earned, that there is nothing about me that warrants abandonment, those feelings remain. I don’t have to blame myself or think that I am awful and that is why I was unwanted in order for the old cold of loneliness to find its way to me.
I wish we lived in a world where I could run around and get a million hugs today and every day for the next month. I wish we lived in a world where I could be there for everyone else going through hard times, worse times, stressful times, as more than a voice over a computer or lines in an email. I wish we lived in a world where today’s rain didn’t have the chance to bring out the melancholy in me because I would be doing something with people.
I wish I lived in a world where Covid never jumped to humans, where my immune system didn’t go haywire and need to be punched down into submission, where birthdays were reminders of love and friendship rather than isolation and apathy.
But the good thing is that “this, too, shall pass.”
Someday, we will have a vaccine for Covid that works and saves lives and allows us to gather in person again.
Someday, my immune system will chill the hell out and quit trying to bite my joints in half, whether by the flare up ending naturally or the medicines stabilizing it.
Someday, even if birthdays always carry a bit of a cloud over my heart, I’ll have the choice to spend them celebrating and enjoying time with the people I love.
Someday the world will look brighter. I have to believe that. I have to fight for it. I have to stand up and beat down the circumstances of the world just as I beat down the destruction of my ability to move for myself. And, I still believe, that if enough of us hold up the good, hold it up unyieldingly, hold it up not in fear or anger, but in hope, that the storm will pass and the rainbow will herald the sunshine.
I crawled out of a lonely life into one filled with people I love and who love me in return. I dragged myself through pain that made me cry just to open my fingers from their cramped claw shapes. And now I’m going to take my evening and, rather than wallow in what can’t be, build something new.
I’ve been writing in a quantity I haven’t seen since the fall of 2016, and this time my energy shows no sign of abating.
If I feel melancholy, I’ll hold onto all the good things. The good days to come and the ones I’ve already been granted. If I feel lonely, I’ll poke Sarah for hugs. If I feel hurt and weary, I’ll sing my way back to cheer. I can’t control what is, can’t help the fact that it’s a rainy, grey day without any company but Sarah, but I can control me. And if I can’t manufacture better feelings, then I’ll get them the old-fashioned way. I’ll fight for them.
Because if there is one thing I can ALWAYS do, it is rise and soar above any cloud.
The Sunday after there was laughter in the air
Everybody had a kite
They were flying everywhere
And all the trouble went away
And it wasn’t just a dream
All the trouble went away
And it wasn’t just a dream
In the middle of the night
We try and try with all our might
To light a little light down here
In the middle of the night
We dream of a million kites
Flying high above
The sadness and the fear