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Month 25.  Shame and Disability 

2/24/2017

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What happens when you have worked so hard to get to where you are after an injury; surgery, or chronic illness, and you realize it isn't enough? Or worse still, someone tells you it isn't enough.
Those of us who have dealt with this for many years avoid these situations at all cost, but for those new to it, you may still be going on trial and error. When you think you have built your strength up to an event or activity, and it works, it feels fantastic.
If you are not up to the activity, or worse still, you go ahead and do it, and it leaves you feeling terrible afterward, the disappointment can be devastating. And in rare occasions, I realize as I'm doing something that it may be too much, but I choose to continue and pay for it later. It's worth it to me at the time. These are usually life events like weddings, funerals or special events. Or it can be a gathering that is so much fun you can't force yourself to leave.
For those of you reading this with a chronic condition you know all too well what I mean. However if you do not, or it's a loved one with the condition let me explain further.
When I got out of rehab after my surgery I was five weeks post op. I was feeling pretty strong. It had taken a lot of Physio and was walking with a walker, able to dress myself and do most of my daily activities at the hospital. I still had someone with me most of the time, but I was so much better. One morning as my husband was showering, I noticed he had made coffee. I decided to pour myself a coffee. I lifted the half full carafe off the burner and my whole arm started to shake with the pot in it. My low back burned and as I quickly tried to replace the carafe my legs just about went out from under me. I was shocked. I sat in the closest chair and collapsed into my misery. I couldn't even pour myself a coffee. Thankfully I didn't spill it all over myself, but I might as well have for how miserable I felt.
What I now realize is, it has taken a beating on my self confidence. I was always that person who wasn't afraid of anything, spontaneous and game for just about anything. Having a disability has taken some of that away. I can no longer leap before I think. I must think and preplan a lot in my life. So it has in some ways robbed me of the person I may have been. I see groups of woman gathering going to third world countries doing mission work, and know in my heart that would be me if I was healthy. Every group I want to join I have to consider so many things, the chairs, the timing, and if it is accessible and comfortable for me. Spontaneous Maureen has left the building.
I don't want to sound as though I am not grateful for the level of ability I have, I am truly grateful I am able to walk and have healed well enough to resume my restricted mobility. Yet while I have worked hard and can walk daily I am not a fast walker, nor am I a long distance walker. That is fine with me. It was at least until it was pointed out to me by a friend of a friend. When my friend asked if I would like to join them for a walk, the other woman quickly made it clear it would be a power walk.
I felt like a kid in a school yard being bullied, by the bigger, more capable kid. It was as though my disability was being held up to the light for all to see. It didn't feel very good. She wanted her power walk for the day and didn't want me to slow them down. So I declined and walked away. She was aware of my disability. I didn't say anything to draw attention to my hurt feelings. People can choose to include me or not. It's my reaction to it that needs to me examined.
The thing is, it stuck with me the whole day. It's been about a week and every time I think of it it makes me sad. I'm not sure why I let it get to me the way it has, but I'm sure she has not even given it a second thought. It likely wasn't meant to be hurtful.
The vulnerability one feels when you have a disability is great. I felt exposed and not good enough. There's a great quote by John Powell.S.J. That goes something like this. Why am I afraid to tell you who I am, because that's all I have and if you don't like it I have nothing else to offer. Those with disabilities do not have less to offer, just different offerings.
People with disabilities are oppressed all the time in different ways that on the surface does not look like oppression. Just as those of other minorities are as well. When we can all look at each other, and ourselves though a lens of kindness the world will be a much better place.
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    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.

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