When you first have the pain/illness you say I can't, or your family says you can't. Then comes a time when you realize you cannot keep saying I can't or life with get away from you. What came next for me was trying things cautiously. What I found was all focus was on me, my comfort, my risk and everyone had an opinion. They did, and they should have at that time, because they were all greatly invested in my well being. If you are asking for help, understanding and people to accommodate you daily, then yes, they do get to a say in what they think you should, and shouldn't do. It's another one of those things those of us with disabilities must accept.
One very clear example was recently we visited a friend who has been dealing with chronic pain for about three years. It has greatly affected her life and the lives of her husband and family. It has been a very long arduous process. She is finally feeling more like herself, but is far from pain free and does require quite a bit of assistance mainly from her husband. During our visit another friend was texting her to ask if she would consider parasailing. I honestly don't think she would actually do it, but she wanted to consider it. The thought of it actually petrified her husband and he could see all the hard work going down with her sail.
I decided to speak up. I understood both sides completely. I know I love to ponder things. I know in my heart that there are a lot of things unavailable to me now, but I still like to ponder the idea. I also know the hard work and compromise it takes to be a partner of someone in chronic pain. It must be terrifying to see what must look like a cavalier decision.
What comes with pain, is the need for others to help, compromise and adapt. What they need from us is sincere appreciation for those things they offer us selflessly. In conjunction there needs to be an innate mutual respect for each other's needs and dignity. It is a complicated dance. Nobody wants to be told what they can and cannot do; however it is important to feel you're in control of your own decisions. It takes careful consideration on both sides. Bottom line is we all want to feel normal; do normal things, dream normal dreams, but we also need to live within the confines of what life has brought us, while pushes ourselves daily, with love and respect for those around us.
Yesterday was spent walking most of the day. It included walking through the streets of Old Montreal, walking downtown Montreal standing listening to the music of the Jazz Festival and shopping. All were difficult, but I loved it. I decided ahead of time to try not to talk about my needs, to just do my best and naturally find places to sit, and to rest when I could. It worked out pretty well. The one area that is often a problem is sitting in cafes and restaurants with hard chairs. When we stopped for dinner, the cafe did have booths which are ideal, but we were lead to a table with hard chairs. I decided to have a rest room break and when I came back all was solved. We were seated at a booth and it was comfortable. I felt like I accomplished what I set out to do. Everyone had a fantastic time. We left maybe earlier because of me and my legs but it was still a very full, happy day.
Before I published my blog I asked my friend if she would read what I had written and agree to me publishing about her and her pain. Here is part of her response. As always friends are key to helping us through anything. They are our mirrors, our support team and our cheer leaders.
"We were just taking about this - we still need to live and keep our bodies moving or our world becomes too small. Look at what you've done this year; Florida, Newfoundland several times, Ottawa several times, Toronto several times, Montreal, boating, family visits and meals (I know you) and soon Italy and Greece. I really need to gain more courage and learn from you.
This is all in the year you had 3 back surgeries. What the HELL?? Unbelievable. You have kept your world alive and HUGE. You have assessed, prepared, made accommodations and then gone forward. That's how to do it my friend."
That was her answer to me. You see sometimes you need a friend like this to point out all that is right, all that is going well and how you finally have gotten to be able to assess and accommodate most things.
I feel oppressed daily by the little things and sometimes quite lonely, but when I look at the big picture it isn't so bad now is it.
Who cares if I can't stand in line at the bank or the Vatican for that matter. I CAN do a lot of things. And I'm willing to take the time to find out how.