I am amazed and delighted that my last post, Who Am I, resonated with so many of you! I try my best to negotiate each day as a free spirit, unencumbered by my body, whilst at the same time, factoring in the need for rests and a regime. I am sure that those of you with physical challenges can relate to the following scenarios. Our local movie house has a ramp, from the ground level to the 2nd level. One has to stop at the first floor to get tickets and snacks. There is a lift, but it operates with a key which is often hidden under detritus in the office. Trying to negotiate the long walk with tickets, drink, popcorn and a walking stick is arduous. I don’t want to hold up my friends by waiting until the lift is available. I don’t want special treatment, or to draw attention to myself.

The second scenario is when you have your day planned. It may be a day in the city. I have a regime drawn up, stating what time I will be at particular places and when I expect to leave. My body holds me to the promise of pain relief and rest at particular times. If I am held up, there is hell to pay. It is a different way of being; engaging with the world, whilst having limitations. A fine juggling act.

I panic if I am home later than I anticipated. I know there will be hell to pay. It may be no sleep that night, or vomiting because I had to take extra pain relief and the side effect is nausea. The danger with the pain relief is that I am agreeable to most things, and the pain is discounted. I am floating! I sure come down to earth with a thud when it wears off!

I still hold to the theory that I am not my pain, nor my body. Do you suddenly become a car because you are driving one? It is just that my vehicle is a little rusty, and has to be treated tenderly. Perhaps I will wait for the lift at the movies, to make life easier on myself.

2 thoughts on “Negotiations

  1. Don’t make life harder than it needs to be; e.g. the ramp. Choose the lift instead if that is what is necessary. Don’t worry about holding up your friends…true friends will wait for you and be patient about it. True friends will understand it might take a little longer and the extra time can be factored into plans without drama. In these circumstances, the only one you need to answer to is your own body!
    I totally understand about getting held up and the stress it causes…the consequences snowball across the rest of the day and the following day(s). Other people don’t understand how an extra 15-30 minutes can make a huge difference to your level of functioning. My immediate family realise that when I say I need to leave NOW it means NOW! It used to catch me out a lot but I am much better at planning now, keeping visits short.
    Take care and lots of hugs to you always xxx

    Liked by 1 person

  2. Exactly, Raphaela! We are not even the thoughts we think. We are what gives life to that body, thoughts and actions! But in the end, we are what is left when that body has died!


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