(Not a) Damsel in Distress

"I'm a damsel, I'm in distress, I can handle this."

-Meg (Disney's Hercules)

Something happened yesterday that was a new experience. My wheelchair broke on me. I should clarify that my wheelchair broke on me while I was ass high up in the air. You see... I was trying out the tilt feature on my chair as I've only used it for little tilts, not mega tilts and I wanted to see how far it would go. I felt like I stopped it even before the max limit. I laughed with my mom as I laid there, until I realized I was really stuck.

My mind quickly went into problem solving mode. I'm the girl you want with you in an emergency. I realized I couldn't do anything about the situation laying on my back like that. So I asked my mom to help me get out by removing the side arm and letting me brace myself on her arm. Fortunately I have legs that go on for miles, so I was able to very carefully shift to the side and wiggle my way down. I was up very high, so I was ultra careful. I moved gingerly to keep my center of gravity in the middle of the chair as it could very easily tip over.

Like a wounded ninja I slunk out of my beloved Dory and made it safely to the ground. Step one was complete. I knew it was some kind of mechanical error because the control panel would switch on, but just stay on the home screen. I had no control over it and could only switch it off and on. My first thought was to try and reboot the electronics, but I had no idea how to do that. I started looking for some kind of button, or way to unplug it from the battery. 

Failing both of those I knew I had to call my wheelchair company. My dead phone disagreed with that decision. Mom to the rescue again! Thank God I wasn't alone. I would have just been laying there calling for help. And thank goodness I still had some mobility. I don't relish being rescued by the fire department. 

First I called the main number, then I was transferred to my local servicer, then to the voice mail of my "service manager." Not to be waylaid I called the local number again and this time I reached her. Then I was transferred to the main corporate service department for tech help. The "expert" had us install an app so he could see the "problem" via live video. Now I was hoping for some actual help! Uhhhh... no. The guy told us about the "secret button" to restart it, but it didn't work. (But now I know where it is.) As I was on another long hold I was examining Dory and seeing what could have gone wrong. Then I saw it.

Right in front of me I saw the hinge that rotates when the chair tips back. Pinched in that hinge was the small, black power cable that connects to my control box. The cable was pulled tight and right away I knew what happened. The cable became caught in that hinge when I was tilting back and the more I tipped the tighter it was pulled. EUREKA! But when the tech got back on the line he sounded dubious and doubtful. He put me on hold again. My mother and I figured out a way that we could create a little slack on the cable by lowering the arm rest and turning the control box to the side. It worked! We had enough slack on the cable that it came out of the hinge.

I tried turning the chair back on and nothing happened. I turned it back off and rubbled the cable a little where it was pinched. I think we all deserve a nice rub after a traumatic experience. Well, I must have magic hands just like my husband because Dory turned right on and I had controls back. "Mr. No Help" came back on the line and I explained what just happened. He acted like that was the end of the call. I told him directly that I would be needing a service visit and a new cable because this one was obviously now compromised. "Oh... Ok" was all he said. (Jesus give me strength!)

So with zero help from my wheelchair company I discovered the problem and fixed my chair myself. Jeeeeeeeze. I won't bore you with more details of what happened this morning when it looked like Dory wasn't charging, but suffice to say that I'm getting a loner chair delivered in 3 days while a new controller with cable is being ordered.

I felt horrible for people with no mobility who really would have been stranded. And why had my 60K chair not worked 100% right the first time I used tilt? I JUST had work done on it. It should have been tip-top. And what about people who aren't skilled at getting what they need over other phone? Or who just don't have the energy to be persistent? Or who don't have a strong Mama with a full phone right there? Or who can't afford a 60K chair to have it break down on them in the first place?

Disability is hard enough not to add cruddy companies on top of it. I shouldn't have had to find the problem and fix it myself. They should have not screwed up when putting my chair together so it would happen in the first place. 

People have an emergency number to call if their car breaks down, so why not an even more important mobility device? Why aren't they insured by the companies who provide them (at an insane cost I might add.) 

The more I live my life as a disabled woman, the angrier I get at our broken system. At people parking in the disabled van spot. At the lack of affordable equipment for people who need it. At the crazy long waits to get anything done on repairs. At the total lack of any oversight and quality control. At the lack of accessibility and representation I see everywhere. I wish I had more spoons to actively fight these injustices. 

Being Frank About My Fat

There's something that's been weighing on my mind (pun intended) for a while. Well, since I'm a woman I'd say my entire life. W e i g h t. The size of a woman and what she "should" look like has been with me for as long as I can remember. But as a disabled "woman of size" it's on my mind now more than ever.

I am fully aware that the more I weigh the more stress there is on my joints and weak muscles. I'm also aware that my weight being well over my personal preferred size does no favors for my health. However there is a constant tug-o-war that happens in my mind. I can know both those things to be true and lack the motivation and will power required to do something about it. Simply put... I LOVE FOOD!

I love to eat. I love to think about what I'm going to eat next while I eat. I love to watch TV shows of people cooking as I eat. I'm not so fond of cooking, but that's where my husband and mother come in as they are both very skilled chefs. 

I tell myself that I still look good (true), am still sexy as hell (also true) and if it makes me that happy then I should indulge. I also tell myself that if I can't have an orgasm I can absolutely replace that joy with food without guilt.

But there is guilt. Because I know that attitude isn't what's best for my body and boy does she let me know it! My pain is only getting worse along with my mobility. If it turns out I need help eventually getting into my chair or bathing, how fair is it that I have extra mass to contend with as well?

So here we have two completely conflicting emotions. The logical, sound reason that I would be much better off if I were to drop at least 80lbs. Then the heartfelt yearning for the taste of yum and more yum (and more...)

What's a cripple girl to do?

Magical Mermaid Moments

I've always been in love with water. Well, my mother tells of a brief moment when I was a baby screaming so loud in swim class that they politely asked us to leave. But as long as I can remember I've been in love with the water. Maybe that's more accurate? All water. Lakes, the beautiful ocean, ponds, puddles, rain and my beloved swimming pools.

I was a very fortunate child to always have access to a swimming pool. I spent all summer, every summer in my Grandmother's pool. In high school I was even briefly captain of my swim team. Brief because my math grades were so bad they took me off the team. Horribly cruel. I think anyone crazy enough to swim 2 hours before school and 2 hours after school every day should be allowed to be on any team they want. But I digress. 

Water is my second home. I'm always at peace in her embrace. It's a constant wonder to me even still. Every time I slip in to any kind of water I breathe that sweet sigh of release, of being safe and held. We love each other and I'm never tense or frightened, no matter what form she takes.

I'm most fortunate to still have access to a pool during quarantine. I talked about it here when my Mama and I were first able to go in her pool. Since then we try to go as much as we can. Typically 2-3 times a week. Not only do we swim, but we also love to play around like a couple of kids. We laugh endlessly and it nurtures our bodies and spirits. And every single time I tell myself how lucky I am.

Lucky to still be able to swim. To have access to water. To be able to get in and out on my own. To laugh and enjoy my time. Water has always been one of the biggest blessings in my life. Almost like another mother. So there is something good about summer and all the hot weather after all. I'm able to enjoy the water's embrace on a regular basis. 

Botox Injections for Migraines - Take 2!

I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.

With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.

No shame in listening to your body!

Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.