Pain Fog: Living in spite of Chronic Pain
  • Home
  • About
  • Blog
  • Resources
    • Body Scan
    • Trial and Error
    • Relationships
    • Parenting in Pain
    • Mental Health
    • What the Doctors Don't Tell You
    • Travel
  • Contact

Day 136. Sneaking Doubt, and Speaking Out. 

7/11/2015

0 Comments

 
I have maintained that this surgery would be my saving grace. Whatever I had to do I would do to make this work out well for me and our family. I've kept up a strong healthy approach to Physio and anything that has been suggested for healing. It's been over six weeks and process is good but it has slowed down quite a bit. It also has good days and bad days now. And of course it is getting very tiring and mundane. I know attitude is everything and I work hard on that as does everyone around me.

I'm having difficulty planning for the near future. There are things in place for people to visit and we have invitations to visit others as well. I can't predict what I can expect for my mobility and energy. It's frustrating and disappointing at this stage.

I read an article in the Toronto Star yesterday that made me think. 

I have had two stages of my life in which I have been in a wheelchair for a period of time. I have also had to use a walker for periods of time and finally several times I have used a cane. Otherwise my disability goes unnoticed to those around me. That's the way I like it for the most part but it is a very complicated thing.

Those of us who are among those with a invisible disability want help, and consideration at times without being questioned or judged. Yet we want to walk around and live our lives as normally as possible. Generally we stay home when we are not our best, and don't look our best. Therefore even a neighbour could not know you are dealing with a disability unless you tell them.

On the other hand I have been in a wheelchair and clearly have a disability and have gone to advertised assessable places and have not been able to function properly in that space. The article in the Toronto Star is a good one. It shows how it doesn't matter what kind of a state of the art building you are in, how much money you have; people with disabilities are an after thought. It is not on purpose, at least I choose to believe that. I think they have designed the buildings without having had a person in a wheelchair check it out before it is built. In the case of the article the person with a disability had their view blocked by others.

My examples are not as long lasting (for me) or expensive but they were as frustrating and embarrassing. I went into a Metro, a well known grocery store in Toronto while in a wheelchair. We did our shopping and when we went to check out we noticed a handicapped sign on a check out aisle we chose that one. We loaded our groceries onto the conveyer, I went through. At least I tried to go though. I got stuck part way though and scraped my hands on the side of the aisle. The wheelchair was stuck. I am not a big person, so neither was my custom made chair. It was a problem. My family had to walk around and while I kept my hands in my lap the pulled me though. All the while my wheels were touching. As you can imagine that everyone getting checked out at that time had their eyes on me. It was not a good experience.

The second experience like that one is a little more difficult to explain and was more concerning. We were in a mall. We went to specific elevators for handicapped people to get to the next floor.We got into the elevator and went to the floor, got off and the doors closed. There was a set of five stairs to the mall floor. We sat dumbfounded. It didn't make any sense to us as we looked around for a ramp. There wasn't one. Completely frustrated we went back to the elevators. There was a set of two. Each time we pressed the button, the doors opened to the set of elevators that wouldn't take us to our car. So we couldn't get onto the mall floor and we couldn't get to the car. As my family worked to outsmart the elevator system I sat wondering if I would ever be independent again. At that time it wasn't clear if I would ever walk again. I remember holding back tears of frustration. By the time I got myself together they had outsmarted the elevator by the girls getting in the other elevator as Barry called the one we needed. We all met at the car. If I had been alone, I may still be there! There were countless other incidents. We called many restaurants and were assured they were assessable, only to get there and washrooms were down a steep set of stairs. Another constant was in the summer are flower pots and such placed right in the path of an entrance which will block a chair or walker from getting by. In the winter, it is snow or worse still slush. We had a difficult time going out for my birthday shortly after my first surgery. We finally asked, are you assessable for a wheel chair, is there an assessable washroom on the first floor. Having gotten a yes to those questions we happily prepared for a much needed night out. Parking was tricky as we couldn't get as close as we wanted to the restaurant but we gave it a go. Barry was pushing me on the sidewalk downtown Toronto through the snow when we hit slush. It clung to the wheels and made it very hard to move. It was almost impossible. We looked at each other and all we could do was laugh. Oh my God!

The constant things people with disabilities deal with usually go unspoken, and unnoticed by others most of the time. When you see an article such as the one in The Star, I want you to know he has dealt with lots of other things before being public with this. People will judge and have all kinds of opinions about him speaking out. Some will dismiss him because he's a billionaire; but what he is asking for are for his rights, and common decency to come into play. I ask you to read the article and think about yourself in that same situation. and What would you do? More importantly, how would you feel?
0 Comments



Leave a Reply.

    Picture

    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

    About

    Archives

    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015

    Categories

    All
    Bad News
    Chronic Pain
    Crisis
    Daily Life
    Depression
    Doctors Appointments
    Family
    Fear
    Focus
    Friends
    Frustration
    Goals
    Help
    Insomnia
    Laugh
    Learning
    Leg Pain
    Meditation
    Memory
    Mindfulness
    Nap
    Neurosurgery
    Pain
    Pain Management
    Planning
    Preparing For Surgery
    Rehabilitation
    Risk
    Serenity
    Service
    Sleep
    Stress
    Strong
    Support
    Surgeon Appointments
    Surgery
    Toronto Western Hospital
    Travel
    Waiting

    RSS Feed

Powered by Create your own unique website with customizable templates.