The first thing I’ll tell you is it does getting better and it does get easier. The initial shock becomes more and more distance at the years go back, the celebrations and milestones happen. We began to see each other as each others shoulder to lean on. He was mine and I was his. We were open and honest. I learned that it was okay to cry in front of him. To express my sadness and frustration and it surprised me. Some days he would cry with me too.
There is no doubt that the system around caregiving is a failed one. We get tired, brunt out, resentful at the people who don’t show up when they say they will. I found myself standing in a room completely spinning wondering HOW did this happen?
Why doesn’t HomeCare show up?
Why are family and friends not showing up?
Why are outings inaccessible?
Why is the condom catch blowing off in the middle of our dinner date?
Where is the accessible taxi? It’s been 2 hours!
And, I still cry out of frustration because life for our partners shouldn’t have to be this hard.
We, made some tough decisions. We decided that we wouldn’t show up to outings that weren’t accessible. We wouldn’t break our backs for the comfort of others.
Dan went back to school. Going to school allowed him to have his medical supplies, wheelchair, even Baytec was covered. THIS one was huge.
I stayed because I saw the light at the end of the tunnel and him pulling for us gave me a new found admiration for how hard he pull for himself.
He’s supported me emotionally more than anyone I know. And it didn’t happen over night.
This community allowed me to find women near and far who have also come together and given a treamendous amount of love, advice, sisterhood and a listening ear. When Dan was injured, WAGs of SCI didn’t exists. I didn’t even have an English speaking Dr explain to me that what had happened to Dan was a serious injury.