Semi Demi Hemi

I want to write down some thoughts about being semi-verbal. I’m sure that many people close to me would balk to hear that, but SURPRISE! I’m naturally a semi-verbal person. I hate talking to most people. I prefer not to do it. I’m not usually bad at it–in fact, people tell me all the time that I’m well-spoken or eloquent. The effort it takes, however, is tremendous. This is why:

When I talk to most people, I have to go through several burdensome processes to participate in conversation. I have to process what they’re saying which is often very difficult. Then, I have to formulate a response and modulate it to be appropriate to the context. Everyone does that! you say. Yes, of course they do, to some extent. But my natural mode of speaking, as Mr. V and the few other people with whom I talk without these filters will attest, is very different from how I talk out in the world. I’m excitable, logorrheic and often abrasive. I repeat myself a lot and I will go on and on about something without noticing the interest level of the other party or, sometimes, letting them get a word in. Stereotypically speaking, the way I naturally talk is pretty autistic.

OK, so if you’re so talkative, how can you say you’re semi-verbal? Because I’m only like that with people very close to me. People I trust implicitly and who are fairly tolerant of my quirks. What it comes down to is that talking to most people is anxious, tiring business and I simply prefer not to do it. Under the best circumstances, I can do it convincingly well. (I can seem totally NT.) In others, it takes me forever to respond to things, I can’t get words out, I get worked up and frustrated or I say bizarre things that I may not mean. When I’m very emotional, I sometimes can’t do it at all.

In education, I obviously have to talk a lot to people I don’t know very well. I have to respond to very random questions and comments. I have to endure all manner of small talk and decipher a lot of weird neurotypical mannerisms and speech patterns. It’s exhausting. Part of me can’t wait to get out of K-12 just to be able to spend less time navigating verbal communication. Most fields involve some degree of speech, but there are definitely more opportunities to be freely semi-verbal in some than in others.

Outside of work, I’m trying to allow myself to be less verbal. To not engage in social or speech-related endeavours when I don’t feel up to (or interested in) them. It’s one of a few of my autistic things that I’m trying to let into my life. That’s all making a big dent in my anxiety and emotional fatigue, so yay for that!

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The Way You Are

Regret and shame are awful feelings. Lately, I’ve been hardcore regretting not going into biological sciences when I planned to, almost 15 years ago. It’s hard for me to forgive myself for going so far away from what I wanted so many times and for so long. There are reasons for why I did. Totally valid, understandable reasons. But as I prepare to restart college at 34, I have to say that it does sting a bit.

I don’t generally like YouTube because videos are often not captioned and I have a lot of trouble following what is said in them without that. Sometimes I get on there, though, and it is amazing how many young people are on there doing phenomenal stuff. I find myself thinking about what I was like in my early twenties, and I definitely wasn’t organizing grassroots activist movements, hosting workshops, publishing stuff, collaborating…I was extremely isolated and doing very little visible to the outside world. I was in an abusive relationship for almost all of my twenties; I was being gaslit into thinking I was severely mentally ill and overmedicated accordingly and I was, as I still am, extremely anxious around other people even, at that point, on the internet. It’s hard sometimes to see the awesome accomplishments of younger people, especially in the disability community, and not compare my own progress. That’s a sure path to demoralizing yourself, I know, but I can’t always help it.

So I have to remind myself that I haven’t wasted my time. That I did the best I could with what I had. That I’m still here and that I have done some pretty great things and am working to do more of them. And my way isn’t worse than others’ because it may be slower or less visible.

I also have to remind myself that not everyone struggles with the same things the same way. Not everyone has the same resources or the same priorities. Again, my way isn’t worse than others’ because I couldn’t or wasn’t interested in doing things as they might.

In the age of Instagram and whatnot it’s easy to fall into the comparison trap. But it’s not the truth. You’re valid, you’re worthwhile and you’re doing your best, which is what matters. You’re the only one who can judge your best, your most. Be fair and be kind. Be forgiving. And remember, you’re still here. Nothing is over until that’s not true. While you’re here, you’re free to make the most of it however you can and however you want.

Backbone

I visited a spine surgeon today to try and figure out what is wrong with my back. As usual, the doctor was dismissive. He ordered an MRI, but he seems to think physical therapy is the answer. Since muscle relaxants, heat, ice, anti-inflammatories, stretching–since none of those things had any effect, I’m not inclined to agree with him. I guess we’ll see. Whenever that happens. The office has to call me to schedule the MRI and then a follow-up with the doctor after that.

I have preliminary diagnoses (hypermobility syndrome and paroxysmal tachycardia), but I’m back to waiting on pretty much everything as far as determining exactly what is going on and what can be done about it. I don’t see my rheumatologist or cardiologist again until the middle of next month, and I have no idea when I’ll see the spine guy again. Still waiting on a referral for urology and can’t afford physical therapy. Gastroenterology was a dead end that I’m not willing to go down again unless I have another dangerous or disastrous episode like I did last year. At this point, I’m done waiting for doctors, and I’m done believing them when they say it’s probably nothing serious and will go away if I keep pushing to do things normally. In the last few months of doing that things have just gotten worse and worse to the point where my quality of life is basically crap.

I’m going ahead with my plans to explore strength training, massage, acupuncture and gentle yoga. I’m going to keep exploring ideas I get from the spoonie community. And I’m staying in my chair. My GP is probably my most receptive doctor, so I am going to try to push him to write a prescription for a manual chair so that I can get one eventually that actually fits me. I’m getting a brace for my left shoulder so that hopefully I can reduce pain and wear in that joint and keep wheeling around as much as I can. At some point, I want to have brace or splint options for all of my most troublesome joints.

My physical condition is not dire. I’m not claiming that it is. I don’t dislocate major joints every time I walk and I don’t pass out (near syncope all the time, but I don’t actually faint because, thus far, I have enough time to sit down before I collapse). It sucks, but it’s not nearly as bad as it could be. However, I don’t want to get to that point at all if I can help it and certainly not any faster than may be inevitable. I’m not willing to completely erode my life and lose all independence just because some doctor who knows nothing about CTDs or dysautonomia doesn’t think what’s going on “should be” that disruptive.

That’s the really insulting thing. Doctors, for the most part, are abled people mostly experienced with very routine problems. They seem to think that unless you are dying RIGHT NOW, you should be able to do whatever. “This shouldn’t cause…” is the most infuriating phrase. Like, maybe it shouldn’t, but it does. Doctors are so unwilling to believe their patients that it is mind-boggling. Medical professionals in general are so arrogant, so dispassionate that they honestly believe they know your body better than you do, even if they’ve never experienced anything like what you go through or even had a single other patient remotely similar to you. If this syndrome is as rare as you say it is, how the hell are you so expert in it that you can tell me what it is or isn’t like? How impactful it is or isn’t?

So screw you, medical profession! I’m staying in this chair and doing whatever I can figure out to make my life manageable until you get your shit together. If it takes 25 years for you to determine that I’m not lying or exaggerating, then so be it, but I’m not sacrificing myself any longer because you don’t believe I’m a puzzle worth solving.

Tahiti 80

I saw a cardiologist for the first time yesterday after a year of other doctors telling me that it’d be a good idea. He was initially dismissive, but after poking around a bit and actually testing me for orthostatic intolerance (surprise, surprise, blood pressure dropped, heart rate climbed the further I was from supine), he grudgingly agreed to order the ECG my rheumatologist suggested. He doubts he’ll find anything, since I don’t have a heart murmur and no one else in my family had heart issues this young. (Though it’s impossible for me to know much about that, as I’ve written before.) He also went on and on about dehydration’s SERIOUS IMPACT  since I “didn’t seem to have much in the tank.” (Of course I didn’t. I knew it’d be a limited potty break kind of day, and since I also have a urology referral in the works, I decided to drink less water than I usually do, which is a lot because I live in a freaking desert.)

I also had to listen to him explain to me that connective tissue disorders usually don’t have anything to do with dysautonomia issues like POTS. It is so exhausting to be told by doctors who haven’t read anything about your rare condition since med school (in this guy’s case that was almost 30 years ago) that your experience, the experiences of many people with experiences like yours, the literature you’ve pored over…none of that is accurate. Many people with HSD, EDS and Marfan syndrome have POTS and/or other dysautonomia issues. Of course correlation doesn’t imply causation, but there is so little research on the matter and so few doctors even seem aware that there is correlation that it seems absurd to claim that they definitely aren’t related.

Anyway, I have another month of waiting before the ECG and the follow-up for it. That’s frustrating, because I want to exercise. I’m no gym rat, but I’m getting frustrated with not being able to do much of anything, even when my pain levels aren’t ridiculous. Exertion = tachycardia, lately, and since we don’t know what’s going on, the advice has been to take it easy. I was supposed to start physical therapy tomorrow, but they want to charge me over $400 for the initial appointment, which I simply do not have. So much for rehabbing my shoulders. That sucks, since I’m planning on wheeling around a lot at work.

Well, I have a gym membership, so I’m thinking about getting a session with a trainer to figure out things I can do to stabilize my shoulders and strengthen my upper body that won’t make me feel like I’m going to drop dead. I also registered for a gentle yoga class at Local Community college, along with my other classes. My mom is finding out who her friend’s acupuncturist is, since apparently that has helped her a lot with RA-related pain. Finally, I’m looking into options for massage, since it does help me a lot. It doesn’t really relieve pain, but it does help me relax my muscles, which is something I have trouble doing, as I’ve written before. Being constantly tense or rigid definitely doesn’t help with pain. My spine consult is tomorrow, so I’ll definitely be asking about these ideas as I don’t want to make that worse.

That being said, I’m definitely more active in the chair than I had been. Oh! And I got a new chair! I don’t think I mentioned that in here! It’s new-to-me, not new, but I like it much better than my first one. It’s a Quickie 2 Lite. It’s customized for someone smaller than me, but I still fit into it OK and it is so much easier to get in and out of my car. Plus, it’s more maneuverable and easier to push myself in. I’m very glad I was able to find one through OfferUp, since Quickie’s–like most ultra-light chairs, as you may know–are incredibly expensive and I don’t think my doctor would write me a prescription for a chair. Anyway, My shoulders give up slower, for sure. I enjoy wheeling around, for the most part. I get tired going all over campus at LCC, but I think that’s just going to be a matter of building stamina. Also, sitting for long periods of time is tough on my hips and butt, even though I have a really nice cushion, but it is so much better than having to stand or walk for my back and my heart that a bit of soreness is well worth it. Plus, gentle stretching and heat seem to help ease that significantly.

A post is percolating about wheelchair accessibility and how abled people (myself definitely included, before now) don’t realize how inconvenient if not downright impossible some things are for wheelchair users. Many wheelchair users have written and spoken about it countless times before, and I will include links to some of their words as well if I write such a post. I just want to put down my own perspective as a person who is newly physically disabled.

Looking Good, Feeling Good

Yesterday, I posted a selfie on Twitter for #DisabledandCute and today, I made a (terrible) aesthetic board for #DisabledAesthetics. I’m not really big on pictures of myself, but I’ve come to realize that, for me, an important part of getting through the day, even though I feel terrible, is feeling put together.

Put together, for me, doesn’t really mean anything super complex. I don’t wear makeup, and I have always avoided clothing that is complicated or uncomfortable, even at my goth-est. Still, I feel worse when I think I look sloppy because it makes me embarrassed and depressed. I worry that other people are talking or thinking about it. Also, when I’m up and dressed, I’m more likely to do something with my day, even if I’m limited by pain or fatigue. When I stay in my pj’s all day, I tend to do what you do in pj’s: sleep, watch Netflix, whine to myself about the State of Things. Of course, the fix doesn’t always work–sometimes, I’m dressed and looking fabulous and I can’t do anything. Still, I’m less mopey when I don’t look like a dumped girlfriend in a rom-com.

Rarity_everypony_laughing_S1E14

Rarity from My Little Pony wailing in a pink bathrobe.

Also, wearing stuff I like makes me feel more like myself, like I haven’t lost everything to disability. Plus? Shoes that I trip over or fall down in (creepers, heels) are doable in a wheelchair! I used to be able to walk just fine in these, but since my ankles and feet have gotten more lax and I get woozy from standing for too long, I can’t do it anymore without risking falling and hurting myself. Heels are still not always a go, since I have angry feet and they don’t like being contorted like that for very long, but I can wear them for short periods.

I love the message of #DisabledAesthetics, #DisabledandCute, #HospitalGlam, #UpandDressed and so forth. Being disabled doesn’t mean you can’t or shouldn’t care how you look. It doesn’t mean you’re unattractive. It means you’re disabled. I’m glad that there are so many people blogging, vlogging, selfie-taking and so forth to prove that. You are all cute and amazing and I am so grateful that you’re out there! (And, of course, if you don’t care how you look, or you don’t subscribe to other people’s views of cuteness, that’s fine! It’s more just that there shouldn’t be any reason for you not to feel good about how you look.)

Here is my board, by the way. I called it “Rose Bride at the Library.” I never make these, so it’s really rough-looking. (I tweeted earlier that I’m not a very visual thinker, so I usually imagine aesthetics by writing about them. Still, I thought it’d be a fun challenge.) I enjoyed myself anyway:

aesthetic

Clockwise from top left: aqua ear defenders, pink flower chew pendant, black and white Utena t-shirt, aqua driving gloves, the cover of Banana Yoshimoto’s Lizard, a wheelchair with a pink frame, black creepers, a blue neck pillow with pink roses, black leggings and a pair of black socks with white swords printed on them.

I know Himemiya Anthy’s color is purple, but I like pink and teal better. The original plan was Sailor Neptune, but I got distracted…

Push It

I was scrolling through my Twitter feed of yore tonight and saw that about a year ago I was all excited about my bike. I was biking or walking to work at the time. By the end of the night I was sore, and my feet, knees and hip always ached, but I didn’t think much of it. They always had, after all, and this wasn’t that much worse.

Today, I could barely manage a few steps from the car into and out of a fast food place (which I had to leave when I discovered there was nowhere to sit). I used my wheelchair all day outside of the house. Even that had my spine and hips feeling disgruntled. I didn’t feel completely horrible when I got home, so I puttered around a bit and…now I feel like my spine is being somehow crushed by my pelvis. I can’t imagine riding a bike.

I’ve been trying lately not to push myself too hard, to be gentle with myself, but it’s very difficult for me to figure out what the line is between gentle and lazy, between accommodating disability and using disability as an excuse. This is especially tough when I feel “better.” If I’m not in excruciating pain, so tired I can’t think straight or feeling like I’m about to drop dead from a heart attack, it’s hard for me to keep holding back, even though I know that doing things like I used to do them will put me right back at square -10 and it’ll take me days of doing pretty much nothing to get back to square 1. Also, I have less and less days where I feel like what used to be normal, so it’s hard to resist making the absolute most of them. I don’t know if I’m running out of them, you know?

Anyway, Mr. V is picking up ice cream on his way home, and I’m trying to relax and find ways to deal with the pain until he gets here.

A Meditation on the Star

So I dabble a bit in tarot. I’m sitting at Mr. V’s workplace, waiting for him to be done. I felt my anxiety whipping itself into a frenzy. Normally, I’d just stuff it down, try to ignore it. Instead, I decided to draw a card. How can I stay calm? I asked. How can I get grounded? The answer was, The Star. 

Uuuggghhh. I hate the Star. It is my least favorite card. It makes me want to run away and throw up. I see the Star and her beatific, childlike face and I just want to scream. I’m in a place of business, though, so I can do none of those things. Therefore, I’m examining why I hate the Star so much. 

The Star represents hope and rebirth, rejuvenation. In the deck I used, the card shows a nude woman knee deep in water, surrounded by pussywillows and holding a pitcher in each raised hand. Above her head are stars and torrents of water streaming down to either side of her. The Star seems to say, “It’s OK. Put that down and get in. It’s safe, I promise.” I know she’s telling the truth since the Star is honest if she’s anything. What gets me is that she doesn’t give a shit about all the stuff that makes me scared to wade in. I tell her all the things that happened, all the scary stuff I went through, everything that led me to believe and she just shakes her head and smiles and tells me what I already know. That stuff isn’t true. That stuff can only hurt me now if I refuse to release it. I get indignant with the Star. I want my suffering acknowledged. I want closure! I want…something!

The Star laughs at this and asks me how I honestly can expect anything good from something so bad. Let it go, she says. C’mon. All you have to lose is stuff you don’t even want.

This is why I hate the Star. She calls me on my bullshit, the excuses I make to save me the trouble of growing. And she’s so goddamned sweet about it. She’s patient, because she believes I’ll get in when I’m ready. She believes in me, because deep down, I believe in me, and the cards just show you what you’re trying to pretend you haven’t thought about. ✨🌟✨