During the last few days I have been thinking about some of the changed Colin has had to face.
He is no longer the master of his own destiny, and it breaks my heart for him. He cannot simply get himself a drink or snack, or even feed himself anything other than things like grapes or biltong that he is sometimes able to grasp with much effort. He cannot have a shower, shave, or even just go have a nap without asking for help. He can’t even scratch his own head or face or arm.
I was getting lost in a mire of self-pity at how much I had to do and how many more things have been added to my plate, and then I came across a picture that made me stop and think very carefully. I am ashamed of my selfishness, and have been appropriately chasitsed by some annonymous person on the internet who didn’t even know she would speak directly to me.
I saw this picture:
and I cried like a little girl.
This transition is taking its toll on us, and despite Colin’s incredibly positive attitude and resilience and strength, this is still something that is not settled and will take more time to come to grips with.
Reading all sorts of inspirational and quadriplegic info, I came across the Spoon Theory. I believe this is the original person’s blog and article on Spoon Theory:
The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com
I forgot for a moment that all is not as it used to be, and I need to remember that Colin no longer has unlimited spoons. No matter how frustrated and tired and put upon I may feel, he feels worse. He does not complain, and is my number one supporter, but he is no longer able to just do as he wishes. Today we were watching Masterchef and he sort of got that far away look in his eyes. He said one of the things he misses most about not having his hands is not being able to cook anymore. He is a tremendous cook, and has a gift for just putting in this and that to make something really yummy. Now he has to put up with my ham-handed attempts at his favourite foods. He always eats what I make, and never complains, but I can see that he sometimes wishes to have something else. I have learned a lot from him, and can even make a pretty decent curry now, but I am not a chef.
When you are healthy, you completely take for granted that you can do things. You take it for granted that you can just quickly walk outside, and go do something. You take it for granted that you can walk down to the shops at the end of the road. You take it for granted that you can just quickly go get a nap, or a shower, of fix yourself a sarmie. You take it for granted that you can get a drink or water or a cup of tea. You take it for granted that you have endless energy and ability, even though we all complain all the time about how tired we are. You take it for granted that you can just reach over and pick up a glass or a pen, or a lipice, or your phone. I certainly take this all for granted, and I don’t like it when I am forced to look inwards and find things about myself I don’t like.
Colin is enormously positive, enthusiastic about every little win we experience, encouraging, and generally upbeat. It sort of shames me into remembering that he is the one with the disability and not me. I am sure he has his moments when also rages against the machine, and we are certainly luckier than many others – that is a story for another time – but I am so proud of his attitude and general bearing.
He is an incredible man, and I am humbled and proud to call him my husband.
Today I am grateful for a wonderful family (immediate and extended, blood and not) and am so incredibly lucky and pleased to have such a wonderful support structure.