You had a bad day.
I did. When not peeing my pants in public was the best thing that happened to me in 24 hours.
I am feeling very happy to be back writing after last month’s comeback. This month I dusted down a piece I originally wrote back in November, but didn’t manage to finish at the time.
As autumn approached, I was running low, but making extra efforts to be more social outside of my own walls. It’s good for us stay-at-home-a-lot people to get out more. Combats isolation, feeds connection with the world and others, creates a sense of belonging.
Or does it?
My lovely friend and neighbour Rachel was singing and playing guitar; an afternoon gig at a bar in town. I’d be there. Aware from previous experience that it’s never a good idea to leave accessibility to chance, I did my due diligence a couple of weeks prior by calling the venue. I was assured there was a toilet with step-free access. Not a fully accessible toilet, which was poor if you were coming in a wheelchair. But I was reasonably confident, as my mobility aid of choice for the day was my rollator. If things became dicey once in the loo I could wing it by holding on to the door handle, basin taps, toilet roll holder, hand dryer, etc., for extra support if necessary. Disability parkour if you will?
Jase, my chauffeur/husband/general love sherpa, already had plans to go a record fair out of town with a friend that day (how dare he). So I would get a taxi, door-to-door. Drop off should be pretty easy.
This was going to be just what I needed. A beer in a chilled-out bar soaking up the music.
It was a little unusual for me to venture to an unknown place, alone like this. But I figured with the research I’d done I would be ok.
But the fun and games began before I even got there.
Rachel’s gig set didn’t start until 3pm. I was up by 9am, so I had plenty of time. I would keep the remainder of the day’s schedule clear to allow me to preserve my energy, and rest in advance. I wouldn’t be doing any of the things people normally do on Saturdays; like fly around doing the big food shop, take part in the local park run, or start building a gazebo. FYI I never do these things.
Still in my pyjamas, I chatted with another friend on the phone, did a few of my daily-ish stretches (come on it was the weekend), and a little meditation.
However, despite the half-arsed nature of my exercise session, I was struggling physically. It’s how most of my days begin. I ever-so-slowly got dressed. But then, an extra obstacle: I got stuck in a jumper. I’d managed to get it on, and it did look very nice. Whilst admiring myself in the mirror, I realised it might just be a bit too thick for a gig, and had the potential to make me too hot. Heat intolerance is a well documented pain in the butt for many people with MS and I am one of them. Even a very small increase in temperature can cause symptoms like fatigue, loss of balance or problems with cognitive function to worsen. The jumper needed to come off and be replaced with something cooler. I wrenched my arm out of one sleeve, but remained buried alive inside the rest of it. (It’s ok to laugh.) With no one to rescue me, I spent the next 20 minutes in a WWE style bout with myself to remove the offending item. I eventually succeeded, not without becoming the hot sweaty mess I was trying so hard to prevent. Better for it to happen at home, I suppose. I would need a time out, and an extra rest. The effects of the jumper wrestling continued. As I struggled to move around the bedroom, it started to dawn on me that this trip out might now just be a little too much.
But, it was an almost clean hair day and my recent salon cut and finish was still holding pretty well. It would be a shame to waste it. My eyes were on the prize: the vibes, the beer, the music. I carried on.
I ordered an Uber Assist taxi. These cars have a driver who knows you may need some assistance due to disability. They have in the past always worked well for me.
Having faffed around with indecision about whether to go or not, my ETA was now 2.58pm, but Rachel texted that she had saved a seat for me near the door. I was on my way. Maybe I would have the beer after the set, but I could still make it.
As the driver pulled up nowhere near the drop-off I was expecting, he announced that he couldn’t go down the road where the bar was because of traffic restrictions. I wondered why he didn’t think to tell me this as soon as he saw how long it took me to hobble from my back gate, down the drive and onto the street to the car with my rollator. To become an Uber Assist driver, you have to complete disability training. Of course this doesn’t preclude you from being a prick. I’d already picked up an undercurrent of anger from his attempt to talk to me about the state of the world, and when the rage spilled out as he was cut up by another car, I felt quite afraid. As I tentatively negotiated with him to get closer to the venue, I could feel the blame, it was my fault, because I just couldn’t walk far enough. I wondered whether it would be better for me to simply get him to drive me back home, but that left me feeling even more defeated.
I did a quick calculation: how far would I need to walk from where he was prepared to drop me off, to the bar? The answer filled me with dread. I’d started the day with the right mobility aid for the job, and now the job had changed. My trusty rollator could make it, I wasn’t sure about me.
But I hadn’t come this far only to come this far. I could do it.
I had felt so utterly vulnerable to be physically dependant on an angry person who it seemed was blaming me for his unwillingness to get me to where I needed to be. As I got out of the car, I was a little buoyed by my liberation from a very stressful and scary situation.
I couldn’t do anything but go very slowly, a forethought for each step. I stopped at intervals. A tide of jolly daytime revellers came towards me, music blared out from another bar, the whoosh of a bus came out of nowhere. Physical and sensory overwhelm. As my head spun, I tried to focus on the seat and the beer that awaited me. I saw a couple of other Ubers come down that very street, and pull up outside where I needed to be. WTF.
I made it. I saw the last 10 minutes of Rachel’s solo set which was beautiful, and there would be a break before she played with her group, so I’d see all of that.
I went to find the loo. I didn’t really need to go but I wanted to check out the step-free toilet. On the way, a self-styled comedian. He told me the way I was handling that [my rollator] gave women drivers a good name. After my earlier encounter with the Uber driver, he was easy meat. I’d heard similar before. I didn’t let it bother me too much. I told him it was one of the funniest jokes I’d ever heard. And moved on.
The “step-free” toilets were upstairs.
There were no others. And they weren’t just any old stairs. Haunted house of horror stairs, steep, creaky, a long, winding and unknown path to the loo beyond. I can do stairs, my own stairs, in my own way, and some familiar others, but there was no way I’d make these. The folks behind the bar were kind, and couldn’t comprehend their colleague’s understanding of step-free access when I’d made the call a couple of weeks before. There was another bar over the road with a real accessible toilet they said, but when we looked at how I would get across, there were no dropped curbs close by. I’d drained my energy battery down to the red getting here, I just couldn’t do it.
Still no beer, but on reflection a godsend for my unpredictable bladder. I still didn’t need to go, but decided to cut my losses, and get home. The taxis I’d requested came and went; three times. I watched the cartoon cars on my Uber app arrive nowhere near the venue, and leave just as quickly. I messaged them, explaining my predicament. Radio silence. All this while the band was playing, yet I was in my own private world of rising panic, where there was a very good chance I would wet myself in a room full of people before the afternoon was over.
Abandoning Uber altogether, I managed to get hold of Jase. He was already driving back and wasn’t too far away. He would come, along with the friend he’d been out with, and rescue me. A knight not in shining armour, but with my gleaming yellow walking bike (thankfully we keep it in the back of the car), now the right mobility aid for the job. Hopefully before the floodgates opened. But the bladder gods must have been smiling on me that day, because I remained in a not-really-needing-the-loo status. I really don’t know how, and never will.
There was to be an after gig gathering at Rachel’s house that evening. After my ordeal I was probably too tired to go really. But she lives just around the corner, and the pull of good company, autumnal food and mulled cider seemed like just the tonic I needed.
After the events of the day, I could finally relax.
As I sat there, plate in hand, I felt a pair of eyes on me.
The man opposite me, with whom I’d had a harmless superficial chat when we arrived with my rollator, decided he wanted to take it up a level:
👨🏼🦳“So what happened to you then?”
I braced. I’ve done this before.
🙍🏻♀️“Oh… I’m not really sure how to answer that.”
Wishing for a better retort than this, I could feel the room quieten, it wasn’t a loud or busy get-together; people would have heard what he said. The clocks stopped. Tumbleweed bounced across the room.
He kept coming for me:
👨🏼🦳“Well, you know, just one or two words of explanation will do.”
Jesus. Eyes and ears were on us.
💁🏻♀️“Well I do have a blog about it so you could read that.”
I dug my heels in. I wasn’t going to give him the direct answer he was looking for. And yes I know I write a public blog about my life with MS, essentially “what’s happened to me”. But there is an ocean of difference between my choice to publish that, and answering casually posed but offensive personal questions from some rando I’ve just met at a party.
He still wasn’t letting it lie.
👨🏼🦳“Oh, but please just let me know if there’s light at the end of the tunnel.”
🤦🏻♀️ “…. ..”
Folk in the room were on my side and that helped. Another neighbour locked incredulous eyes with me. Thank you. I was on the home straight. I don’t remember how I ended it but eventually he desisted, and I think I caught a glimmer of regret in his eyes.
What a day. I hesitated about publishing this account of woe. We all have bad days, disabled or not. We all encounter idiots. But I wanted to highlight that everything I had to deal that day was because of my disability. They are examples of what happens to people with disabilities or chronic health conditions frequently, and are always part of the terrain. Inaccessibility and ableism are alive and well.
I can’t help ending with some positives, even from this dumpster fire of a day. I showed up, I tried, I kept going. It was no mean feat to attempt this trip out alone. I got out of my comfort zone. I saw friends. I heard music, I problem solved. People helped. I got some great material for this blog.
And eventually… I had my drink.
And I did not pee my pants.
Thank you for reading.
Jane 💛
Oof. I w had days like that. So glad it ended well…
Yay Jane! Congrats on persevering and getting the prize(s). The drink, personal satisfaction, and keeping your dignity. I've been there but not done quite so well. Maybe next time I'll push through to my prize!