What I Have to Think About Before Going Out With My Disability

Since my illness progressed to where it’s been the last few years, going out has become a completely different creature for me. I can no longer just randomly run out the door without much thought.

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There are so many things I have to go through in my head as I get ready to go, and then many more while I’m out, not to mention the “consequences” I will probably face if I push myself too hard trying to have fun or be productive. It’s a huge checklist, full of many questions I have to ask myself.

Before going:

First I have to think of how much energy I have, how long I’ll be out and what I’ll be doing. Am I going to the store? Am I going to a friends’? Am I going to a public event? Each venue has different aspects that will affect me in different ways.

How crowded will it be — will people bump into me in the hustle and bustle that comes with multiple bodies? How many dislocations have I had this week? Will my body be able to stand the pain of another couple if someone accidentally runs into me, or gives me a friendly pat on the back or a firm handshake? Will my depth perception problems cause me to accidentally step on people’s heels or run into things?

If it’s a big place that requires a lot of walking, are there benches or anything to sit on at all? Should I bring my rollator/walker? Are the streets cobbled or is the ground uneven, bumpy or rocky? Because if so, I’m better off with just my cane. I’ll sit on the floor when I need a rest, and try not to worry about what I look like as I attempt to get off of the floor without hurting myself.

How have I felt this week? When was the last time I had a really bad episode or bout of paralysis? Is it too risky to go out? I would really hate to have my out of control symptoms in a public place, especially if I’m alone.

Wait, wait, slow down a moment — am I getting ahead of myself here? What do I have to do tomorrow? Will I be able to use tomorrow to recover from today? How many days will this outing zap from me? Should I even be getting ready to go out, or do I need to cancel or postpone this thing?

Why am I going out? Is it to celebrate a friend’s birthday? Will they understand that I can’t 100 percent RSVP until about an hour ahead of time? Will they get upset with me if I have to decline right when they ask me or cancel later? Will this make them want to stop inviting me to things?

OK, I think I’m feeling well enough! All systems are go, now I can start to get ready!

Do I need to bring any pillows to help me if the chairs are uncomfortable? Which medications should I pack? Time for a quick body scan — what hurts the most right now? Is everything in place and where it needs to be, or do I need to pop some unruly joints back where they belong before I go? What braces should I put on? Which ones should I put in my bag, just in case? Should I wear any compression garments? Do I need water? Electrolytes? A small snack? My TENS unit? Do I have a tennis ball in there? That could really come in handy if I’m having a hard time getting some things back in place.

OK… now that I have everything I need in my handbag, is it too heavy? Am I going to be able to carry it without it pulling on my shoulder too much and causing another dislocation?

Once I’m out:

Now it’s all a matter of how much walking there will be, how long and bumpy the commute is, how loud it’ll be, how long it’ll last, who I’ll be with, and probably a few other factors.

Every time I’m out, I’m constantly keeping an eye on my energy-o-meter.

I’m extremely aware of my rising pain levels, and I try not to let them take away from the experience. I also keep an eye out for any of my most concerning symptoms, the ones that spell Trouble with a capital T, the ones who tell me that it’s very likely I might end up paralyzed within 30 minutes or less and pretty much unable to see what’s going on around me, or sometimes even talk. These symptoms are the ones that make it very scary for me to go out.

Am I taking public transportation? If so, how often does it run if I have an emergency and need to get home? If not, who’s taking me and do they know I may need to duck out early? If a friend drives me and we park in the accessible spot with my accessibility permit, will strangers nonetheless feel the need to stop and scold me for using this spot because I’m not “disabled enough” and “too young” to need it?

Can the people I’m with tell how much I’m hurting? Can they tell I’m distracted? Do my meds seem strange to them?

I just met this person, will they judge me or get annoyed if I can’t keep up? Will they understand that I tend to switch between a cane, rollator, and wheelchair, or will they think I’m just being lazy or dramatic?

The last time I hung out with this old friend, I was pretty healthy and quite able-bodied, will it be weird or painful for me to have to tell them that my abilities are different now?

The thing about having my disability is that even if I plan for every possible health incident and bring everything I could possibly need with me, that doesn’t mean a trip out will be a success.

In fact, there are countless times when a trip out ended up being less than ideal, so here are 10 examples of that:

1. On a day that felt like a great one with really minimal symptoms and low pain, I went out to a restaurant with my two sisters. The instant our food came, I felt it: the sudden bricks to my back, the spikes through my neck and spine. I could see the world start to double and shake, morph around me as I started to lose control of my eyes and they rolled in and up. I tapped my fingers to see if the paralysis was starting to spread yet (it usually starts with my left hand). I made a mad, limping dash to the car with one sister, as the other one waited to ask our server if they could pack up our food in boxes.

2. Once I ended up paralyzed while on the bus. Leaning against a window, I had a lovely view of my destination as I passed it twice before I could manage to get off.

3. Another time I had to get off the tram a few stops from home because the jostling was making my symptoms progress too quickly and I needed to take a break in order to make sure I’d be able to make it from my stop to my house.

4. I had yet another public transit issue when I tried to leave a friend’s apartment and get home before my symptoms really kicked in. That plan didn’t really work. I needed two friends to practically drag me from the tram stop back to their place and then up a flight of stairs so I could rest a few hours before trying again.

5. Using a wheelchair, I made it about three quarters of the way through shopping at a warehouse grocery store with my parents when it hit me hard. I told them my warning symptoms kicked in full blast and we needed to get the heck out of there.

My mom said there were only a few items left on the list and asked if I could hang in there. I had to reply, “No, if I don’t leave this instant, most of me will be paralyzed before we get to the car.” With their help I made it just in time, with just one arm and leg immobilized as I got in the car. However, the half hour it took to get home just made my symptoms worse because of the motion of the vehicle, and then it was practically torture trying to get into the house and have them carry me to my bed.

That was the first time they saw me have an episode that bad. I’d moved away from home a few years before then and I kept them updated on my health problems, but it was different for them to see me hurting like that. It was extremely painful for me to see the sadness, fear and pain in their eyes as they helped me through that
episode.

6. All of the days one semester in college when my schedule was less than ideal. Twice a week I had a three hour break halfway through the day. It took too much energy and made me too sick to go home and come back, so the library became even more of a sanctuary for me. (I have always been a bookworm who loves to get lost in the adventures between the pages). But instead of reading, I would use my time at the library to rest. I found a quiet corner where I would lie underneath a table and shut my eyes, allow myself a bit of a reprieve from the long, physically demanding day, and just hope that the worst of my symptoms could hold off until I got home after my last class.

7. There was the summer holiday party at my sister’s place. I probably shouldn’t have gone. I felt sick beforehand and knew I’d have to climb three flights of stairs to get there (a massive task for me, especially because I was transitioning out of a wheelchair at the time). I had to keep lying down throughout the evening in order to keep going, but that didn’t prevent me from having an episode.

I ended up collapsing in the doorway just as I was leaving.

Suddenly I was unable to move both legs and the left side of my body. None of the tools and interventions I had with me worked to slow it down or stop it; it just seemed to get worse.

I was also surrounded by people I didn’t really know. I knew they’re nice because my sister loves them dearly, but I was still terribly embarrassed by the fact that people I barely knew could see me like that. I didn’t want to be carried through the party to a spare bed like that, and I was too nervous to ask, so instead my brother-in-law and his friend carried me down all three flights of stairs to the car, which caused other issues and made that episode last several hours longer than it probably would have.

8. Then, there are the public places that only have bathrooms up a flight of stairs, which I can’t usually manage. And there were the other places where my wheelchair didn’t quite fit.

Oftentimes there were boxes stacked right in front of a business’s only accessible entrance and trash cans placed in front of the elevator buttons, making it very tricky for someone in a wheelchair to reach them.

Another time, the tire popped off one of my wheels at a fair that prided itself in being wheelchair accessible, but had poorly maintained dirt paths with potholes, erosion damage, and extremely steep grades.

Once I didn’t have any problems entering a restaurant, but when I tried to leave, the door I came in was locked. After a certain hour, patrons were only allowed to use one entrance/exit because of liquor laws. A waiter stopped me and led me to that other door. After winding my way through a good chunk of the restaurant and out to the patio where the exit was, we suddenly realized that there was a massive step there, and there was absolutely no way I could safely use it. I then had to go back to the original door and wait a few minutes for staff to come unlock it and move the bench they had blocked it with.

Sometimes it’s the words of others that end up affecting me more than the symptoms and accessibility issues that come from my disability itself. I’ll share two of these moments that really stung me, because I believe that I need to include them in order to portray an accurate description of what going out is like for me.

9. I was leaving the grocery store once when a young, perhaps overly-helpful employee stopped me to ask if she could help and wouldn’t take no for an answer.

I had my rollator with my grocery bag on its pull-down seat and I had it handled. I just wanted to get to my car before I needed to sit down. My left leg was dragging behind me and expending any extra energy standing, talking or turning my neck to look at someone would just make it worse. I said I was fine and kept moving, but she put her hand on my walker to stop me and kept asking and asking, saying that she really wouldn’t mind helping.

I told her I had it and would really just like to keep moving. She replied, “Well, you really seem to be struggling. I’m going to walk you to your car, I don’t want you to die in the parking lot.”

I was completely shocked, but decided the easiest way to get this over with was just to go with it. When I got to the car, I sat on the edge of the van door and folded up my rollator, put it inside and used my cane to get into my seat.

All the while, she stood there awkwardly watching me. She didn’t leave until the car pulled away.

It was a really unpleasant realization that just existing and going about my daily life looked like “death” to someone, and they didn’t even seem to realize that what they said to me was a bit unpleasant.

I will always take an offer to help when I need it, but sometimes help is unnecessary and possibly more of a hindrance. I also like to maintain the independence I am capable of.

10. When leaving an overcrowded bar, someone waiting in a line outside said very loudly, “Finally, we can get in! What is a cripple even doing out this late anyway?”

First off, “cripple” is an offensive term. Also, I wasn’t aware that there was a mandated curfew for all of us people with disabilities. In case it’s important how late it was, it was 9:15 p.m. And guess what? It was my birthday! That’s right, I had to spend part of my 23rd birthday listening to drunken slurs about what I should and should not be able to do, simply based on the fact that I was in a wheelchair.

That seems like a fairly negative note to leave this on, so I do want to say that I do have
some very lovely, extremely positive outings as well. I even managed to go to my first rock concert this year! However, as you can see, there is a lot that goes into each little trip out. I love that I can still make it to different events, but sometimes it can be extremely stressful, painful, and even dangerous for me. All of my outings include almost all of these questions, safety-checks, and several little moments of fear. I believe if other people knew that all of these things exist for me, they would maybe understand a bit more what my life is like.