I’ve been quiet the last couple of days because the best way I could imagine starting off a new year, my own special entry into 2022, was to schedule a colonoscopy – a twisted sort of New Year’s party. Yesterday was the actual event where my insides were scoped, observed, and cleaned up – good now for another five years.
I did not intentionally schedule this to coincide with the beginning of the new year, it just was a lucky bonus and I’m hoping it’s not an ominous portent of the year to come. So, for the last couple of days I’ve been eating all soft foods then clear liquids, then then full evacuation through the lovely gift of Golytely. I will spare you any more details.
This may not seem related to MS or my upcoming HSCT, but it actually is really important to do diagnostics to make sure you are cancer free. Most of the preliminary studies that will be done on my body when I get to Mexico will be to rule out any underlying diseases, infections, viruses, and yes, cancers to make sure the treatment won’t exacerbate existing problems and make me more sick. Having it done now eases my mind just another little bit.
One thread I want to touch on throughout this blog, as I encounter it, is intersection where ability issues encounter the built world around us. There is a great episode on 99% Invisible about this exact issue.
When we left the hospital we first stopped to get food (I hadn’t eaten in over 24 hours), then we headed towards the ferry. Currently, the ferries are down to one boat service meaning they have half as many sailings as they usually do and as they need. This means that they get very full and there is typically a long wait for driving on.
When we got there, we had been driving for a long time and understandably all had to pee. We had just missed the boat that was there when we arrived (it was full), so they directed our car down to the lower lot which is quite far from the public bathroom in the upper lot. I had Kira, who was driving, pull our car to the far right lane where it would be closest to the single bathroom down at the end of the lot. I was needing to strategize how far I would have to walk to get to a bathroom, what terrain I would need to cover to get there, and how much energy I had left after the last few days of prep and treatment. I slowly got out of the car, my legs particularly stiff and weak, grabbed my trekking poles and slowly began to walk the, I would guess, 200 feet to the bathroom. My right foot and ankle were particularly stubborn in stabilizing my ability to stand up and my movement was pronouncedly slow.
Just as I got close to the stairs to the bathroom, a ferry employee came out and said, “oh I’m sorry, this bathroom isn’t working, we don’t currently have water. There is another bathroom in the terminal behind you.” I almost cried. The terminal entrance was easily a football field away. I looked at her and said, “what am I supposed to do?” I wasn’t being snarky, I was literally asking what am I supposed to do? There was no way I could walk that distance and I had to pee, simple fact.
She was a very kind human and said, “my car is right here and I can drive you to the terminal entrance.” She drove me over and I walked up to the doors leading into the building.
Like most municipal buildings, this one had an automatic entry door for people differently abled with the pushbutton that makes the door swing open. This one was broken. This was my predicament, I have both hands on my sticks, so I don’t have hands, or balance, or strength to open and hold the door while I walk in. Luckily, there were two people exiting the building just as I got there, and they held the door for me. As I was leaving, the same employee who had driven me there opened the door and apologized for the fact that it wasn’t working and then drove me back to my car.
I was incredibly lucky that I had people able to help me. Washington State ferries could’ve very easily brought in a porta potty while their toilet was out of order for just such an occasion – easy fix. And when an automatic door isn’t working, it’s a big deal, fix it right away.
When you are differently abled, every activity you undertake has to be thought out in great detail as to how you will interface with every aspect of your environment; how you will get from A to B to C to D. I will likely talk more about this in detail later, but every step of my trip from leaving my house, to getting to the airport, to getting through the airport, to getting on the airplane, to getting off the airplane, has many detailed steps that have to be thought through, and I’m sure I’m gonna miss something. But, I’ve gotten pretty good at it and thankfully, there are many services available to help you if you think to ask.
