In a way, becoming disabled is like being a plant that has been viciously pruned back. Because of how much is changed, you have to grow in new directions. Well, that or you sit mulling over everything you’ve lost all day long, but that scenario doesn’t really get you anywhere.
In the past year and a half of being disabled, I’ve tried to find some new equalibrium. I’ve found that just as hard as it sounds. There have been big physical changes – crutches, bracing many of my joints, new medications. There have also been lifestyle changes. I don’t even try to do things in the morning anymore if I can help it – I know precisely how (un)successful that is. I wake up at 10:00, but I often don’t get out of bed until 10:30 or 11:00, because I hurt too much until the morning medications kick in. I’ve learned that I can’t do the same thing for hours at a time, but must break my life into blocks and take breaks to stretch, walk around, get more water, so on. I take far fewer classes. I have trimmed down my commitments.
In the end, that leaves a very different world. I do more crafting than I used to, because I can do that even when my mind is too muddied to think. Oh yes, the costs of this disability are more than the physical ones.
Somewhere between the disability and the medications, I’ve lost a great deal of my ability to be mentally sharp. I have to be ‘on’ for my classes, as I am a law student and law classes are rather infamously taught using the Socratic method (which can be humiliating when you aren’t at your best). On bad days, just getting to class is a struggle. Fortunately, I have had sympathetic professors; because I choose to participate more than anyone else in the class (by a longshot) when I am mentally on top of things, they leave me alone when I’m not. I just have to remember to keep my mouth shut, which I am not very good at.
In the end, learning to live with a disability is learning how your body is willing to let you live life. For me, it has meant slowing down drastically. The wild bouncing-off-walls, always doing something Brilly that existed before…can’t anymore. Everything has to be planned, oftentimes down to stupifying levels of detail. I have had to let go of control of a great many things in my life. Ask for and accept help when I would not have before.
It also means a lot more time by myself. I was quite the social butterfly before I became disabled; I’ve become rather stuck in my house now. In part because of this, I now have a great many plants. If I’m going to be stuck inside, at least it can be pretty.
A piece of good news: I’ve been paired with a service dog. This summer, Hudson will be joining me. My boyfriend and I are also trying to figure out the logistics of attempting to move in together, while he finishes his PhD and teaches at a college almost 100 miles away. I can’t be moved away from school, or I will miss a great many more classes than I already do, so he will have to slog all the way out there. Thankfully, he is willing to do that; I’m not sure what we would do, otherwise.
Brilliant Mind Broken Body 
Hi
My daughter has Ehlers-Danlos and has suffered with pain since she was very little.
I am curious to know which type you have.
I either have classical type or vascular type. It’s more likely that I have classical, but because of my family history, we’re going to be testing me for vascular…just to be sure.
Hi Kali –
I’ll try to not spam every post with comments, but I’m really enjoying reading your blog. I can relate to everything you say, especially in this post. It’s so hard to be in grad school when I feel like I’m 10 steps behind everyone else because of my EDS. I’m so mentally foggy, so exhausted, and I need more sleep than anyone else I know. One question – how did you get paired with a disability dog? I would really like to seek that out, but I’ve heard they are thousands of dollars, and I am quite poor from medical bills!
Hello, Jess! Please, feel free to respond wherever you like. I know it’s terribly isolating to have a disability and be doing advanced degrees – at least for me, there were just three of us in a class of about four-hundred who had visible disabilities. We’d get together and kvetch about disabled life vs ‘normie’ life. Two of us had been very suddenly disabled – my friend S was paralyzed in a car accident and I just woke up sick one day and stayed that way. I believe he’d been disabled for about a year when we met, and I’d been sick for just a couple of weeks, so we were both still in the adjustment phase.
As far as finding my dog, I went to Assistance Dogs International (assistancedogsinternational.org) and looked up the member schools in my area. I had heard about one of their member schools that sounded promising, but the wait for that school was 3 years, and I didn’t want to wait that long for help! So I read up on the schools, and decided to go to one near where I was living, largely because I liked the look of the program. They were training dogs for exactly what I needed.
Service dog expenses through ADI schools aren’t bad – they have to be charities and can’t put the majority of the fundraising on the candidate. Be suspicious of anywhere that wants to charge you large amounts or requires you to do fundraising! The school I went to does require the payment of a fee that is no more than 10% of your income or $1000 as the minimum. That covers your dog, your harness, your leash, your collar, your halti or gentle leader, and any other equipment that is part of the dog’s performance as a service dog (for example, when I went through training, we were using pinch collars, so I have one of those, and I have a waist leash I can use when I’m having trouble with my hands). You do need the money to cover relatively expensive dog food (my school has a set list of foods we can feed, and they’re all the pricier ones), vet care, and the odds and ends of having a dog like food and water bowls, bed, etc.
If you’d like to know more about my particular school, please drop me an email! I’m brilliantmindbrokenbody at gmail dot com. I do very strongly recommend the school – I think they produce great dogs and have a really strong follow-up available, including help with any additional training you need. The graduates of the school are a great community, too.