Birthday Post 7

Birthdays, for me, are not a time of celebration, but a time to feel the weight of life’s length. I remember when years felt long, and now I feel so old as they shorten. I don’t know how much strength I have in me to double this time I’ve spent so far, and keep counting. I fear losing count.

29 is a weird number for me, because it always makes me think of the time my mom turned 30, and everyone, including her, continued to insist she was still 29. Now that I am actually 29, I know that I don’t want to do the same – I want to be honest about how old I am.

Honesty is so much more than telling the truth about other people. It’s also telling the truth about yourself, and that is a difficult thing. I do not always want to be honest with myself about my own behavior and motives. I do not like carrying the burden of my baggage. I’m breaking under the weight of trying to hold back the results of what I have inherited and experienced. I berate myself for not trying hard enough, not being strong enough.

Secrets loom in the shadows of my memory, and the more I shine light into them, the darker and sharper they become. I mean to tell it all, but I am not the hero of my story. I am someone who tried to hold it all together while caring for everyone around me.

I appreciate the support and the opportunity to write. I am finally being paid to write my book, and with many tears and jarring re-visualizations of memories, I am spending as much time as I possibly can working on it. There is much to tell.

I don’t want to face my existence today. The plan is to share today with a small gathering of vaccinated people, so I will try to do something I struggle to do much: just relax.

Standing Time

How long can you stand up? For most able-bodied people, the question usually comes up when evaluating work. People who can work on their feet are expected to stand for hours at a time. People who work sitting down may have the capacity to also go to the gym regularly.

For me, it’s less than an hour to a few hours, depending on the day. I can walk to run an errand or two and take the bus there and back, but I’ll be exhausted and in pain for the rest of the day if I push myself beyond that. For instance, I shouldn’t run an errand and try to do dishes on the same day. That’s too much most of the time. I can take a shower without worrying about feeling like I’m going to collapse, but I have to make sure I don’t overdo it.   

For my partner and roommate, it’s mere seconds. They cannot use the microwave for themselves, and must rely on me and frozen convenience around the clock when I am out of energy to cook. Showers are practically impossible.

Thankfully, we now have groceries delivered so I don’t have to destroy my body trying to go out and shop myself. A kind patron sent us the funds to cover a Walmart+ account, so delivery with EBT is free now.

Here’s the situation with disability benefits: my roommate receives benefits. My partner has been trying to apply for years, and officially hasn’t been able to work since July of 2019, but that was not long before the pandemic started, which put disabled people even further back among priorities.

As for me, I make too much money through Patreon and direct gifts for disability benefits to apply to me. I also have to get help with taxes in six months and I’ll likely lose my EBT benefits soon. This is a good thing! It means I have a reliable income and I appreciate every dollar that almost 100 people pool together to help cover my bills every month. It’s not covering everything yet, but it’s a good deal more than I could count on in the past. So I can apply for benefits, but even if I fight through the entire process, they still see me as working, even though I’m not pulling nearly the workload I once could.

I would much rather have an income through my writing than get benefits, because I’d make even less. The question is, am I working or aren’t I? It’s not that simple. I can’t do the kind of work that would mean I get paid by the hour using my body to do manual labor. I am running a blog and writing a book, and I’m getting paid to do that, which is work, but that doesn’t mean I could just go get a job if I needed to. I can’t stand for eight hours and work anymore. This means I am limited to using what I have to get by, and for me, I am lucky enough to have writing. I am therefore extremely grateful for all the kind people supporting me.

The reason I haven’t posted in over two weeks is because I’m seeing a psychiatrist (at last! This is great news!) and the first med we tried has not worked well, and it has made it nearly impossible to focus or do much of anything but sleep. I have been trying to write as often as I can, and I’m working on two different subjects, homeschooling and being a disabled caregiver.

My birthday is on Saturday. I’m planning on writing a post then about turning 29. Thank you all for everything you’ve done to support my recovery.

The thing about disability is that people always ask questions, but they don’t want to hear the simple answer that nobody cares about disabled people. It’s assumed that somebody is taking care of us. People don’t realize that we have to buy our own access, like wheelchairs and hearing aids, which can cost thousands of dollars. My disability is one that makes activities not impossible at this point in my life, but they come at a cost. I have to really think about how I’m going to spend my energy, because it is limited, and I will be exhausted and sore if I push myself too hard.

I remember what it was like to be able to go to the gym three times a week and work at a desk job and attend school. That’s how I lived ten years ago, and I was doing far too much then. I was not succeeding at any of the things I was trying to do. My present life is less stressful, but my capacity to do what is necessary is limited.

How long can you stand up? How long will you be able to stand up for as long as you can now? Do you rely on your body’s capacity to stand and move, carry and lift, bend over, and twist? For some of us, these are not things we can do.

Our entire lives are impacted, and that often means we lose the ability to provide for ourselves months or years before we are recognized as “disabled enough” to qualify in the eyes of the United States government for help. If help is acquired before you die on the waiting list, it is minimal.