Saturday, September 12, 2020

Having Time Is a Privilege

 This is a story about going poo.

I am so unsurprised that disabled people can talk about toilets and needing toilets and using toilets with such unabashed abandon. I think it's because, in a sense, they rule our lives, our bodily functions need a place to function. It's like what would happen to you if you went to a bar and discovered that both toilets had broken down. Besides touching yourself in a manner of a 5-year-old, you'd talk about toilets.

Fridays Joe does volunteer work at the Food Bank, work he loves, and on top of that he really likes all the people there and enjoys getting out of the house - and I'm sure he also enjoys a wee break from me. We recognized after I fell on Friday and was on the floor for over two hours before he came home and found me covered in sweat and blood. So, we got me a phone.

What I usually do, note the word usually, is put the phone in one of the pockets of the walker and take it with me wherever I go. Well, this morning I was up and fully dressed by 6:30 because when Joe comes home we are rushing down to see the Van Gogh exhibit. I had to go poo so I got up and grabbed my walker and forgot to take the phone.

When I had done my business I pulled my pants up to my knees and suddenly felt something scraping my toes. I looked down and found that my suspenders (braces) had lodged themselves between my big toe and the one next to it. I tried and I tried and I tried getting it out. I simply couldn't do it. I had no phone to call for help and even if I did, this seemed like a silly reason to call. Finally, I decided to unclip my suspender (brace) and let it fall to the floor. I reasoned I could stand up and then pull the suspender free.

That did work, it flew behind my food and then I put my foot back down my heal right on the head of the suspender (brace) and pain shot through me and I fell against the wall and began sliding down towards the floor. The idea of laying for hours in front of a toilet that's just been used was beyond me. So I grabbed out at the bar, ceiling to floor, that we have for a grab bar and it held my weight and suddenly I was standing again. I made it back to my chair, completely exhausted and overwhelmed. My mind was full of:

1) fear of falling

2) a worry of what-ifs

3) loathing of dependency

4) relief that I was done

That's a lot.

I'm reminded here about people with intellectual disabilities who have days or situations when their mind thusly fills. Frustration upon frustration, disappoint upon disappointment, everyone experiences that, but people with intellectual disabilities might experience that a little bit more in ways that are invisible or unthinkable to others. Many of you never have to worry about pooing, about mobility, about falling, and hospitalization. I'm also reminded that they, unlike myself, have staff whose job it seems at times is to push and prod them, we call it encouragement, they might experience it as cruelty. How many times have all of us screamed, "I'VE HAD ENOUGH, LEAVE ME ALONE, I NEED A SECOND TO GATHER MYSELF". We all know that there are times when being left alone is the most powerful gift we can give someone.

Once my mind had settled I was able to move on. I put my phone in my walker, I came here to write this blog and my day moves ahead. Because I gave myself the time I needed to pull myself together.

Time that belongs to me.


Liz Miller said...

Thinking of you. Thank you for telling us about your experience.

Jenni said...

Hi Dave

Sorry to hear you've been 'living in interesting times' as Terry Pratchett says. Unsolicited advice ahoy - please ignore if it's not helpful to you, but perhaps it will help some of your other readers?

I'm in the UK and I have a lifeline - a unit on the wall in the hall, plumbed into the landline phone, that links to a button on my wrist. It's provided by and monitored by the local council. So if I have an emergency when by myself, I can press the button, speak to someone or if they can't hear me they will call my emergency contact (husband). When we're on holiday at holiday cottages (pre-covid), obvs I can't take my lifeline with me! So then I have a cheap kids smart watch with an SOS button, which again calls my husband if he's out by himself and I need help. I have this one

I decided that having a phone wasn't a good enough answer because I could drop it, or if it was in the armrest bag on my wheelchair and I fell out I couldn't reach it. I also know that if I'm stressed out/having a brain fog day, I'm not necessarily going to remember the steps to use a mobile phone. But it's a lot easier just to press one button on my wrist and something really very serious must have happened for me to not have my own arm with me!

I hope this is helpful

Cammie Mathers said...

This is a fantastic blog....
It helps us to understand the frustrations from
those who are living challenges...

Thank you for sharing.....

ABEhrhardt said...

It's SO good to have your intelligent commentary on life with challenges back.

You have been missed.