Hope

Hope, something that I rarely let myself feel… it came barging into my home today. Hope with a guarantee! I had my wheelchair assessment today. The assessment with a physical therapist that I had to fight tooth and nail for. I had to face shame, I had to face the rejection of my humanity, and yet I did not give up. I couldn’t. The times when I almost could, I knew I had a way to get support. I have a list of people that I can talk to or email when I need help. Those people came to mind when the caregiver lost her temper. Those people came to mind when I wanted to just cry. We did it.

The physical therapist just left. She was funny, and she respected my knowledge about my body. She noted something new too. I have symptoms of Lupus, beyond just the Ehlers-Danlos Syndrome. Some of the flexibility issues and the circulatory issues are related to Lupus. My mother has had symptoms of Lupus, and yet has never been diagnosed. Her ANA is always high enough it’s just not a diagnosis she has managed for herself. Some of this is fear on her part, fear of the label. I can help her now, this information means I can help her. I have tried to show her for years that labels don’t make barriers unless I let them and can be helpful.

Between jokes, which helped me relax a bit, and questions that no one wants to answer but I had to it became clear that I have always needed a better wheelchair than what I had. She said it was something that angered her when she saw a useless chair wasted on someone with a greater need. This is something I have been aware of for a while. I got to educate her about the Lemon Law, a federal law with state modifiability that protects me from being stuck with a useless wheelchair. Getting it enforced is another matter but the law is there.

Not only does this woman have a really great personality for her job but she made it clear with in moments that she knows I am a person. I am a person of value. It turns out that she did my assessment for free, because the insurance wouldn’t pay. She gave me this gift. Not only is that rare but, I am honored. I told her she should still bill them. I still feel this is an advocacy win, because the insurance will not win. I will. My doctor, the physical therapist, the wheelchair fitting specialist/salesman, me, and a dozen other people will keep fighting until I win. In fact, with the assessment today I was told I should have a chair with in three months. That’s pretty fast for my insurance.

I can taste the freedom. I can smell it. It’s Saint Padraig’s day and I am feeling as free as ever. I finally have hope. My heart aches a bit with the strangeness of it. It has been so long since I dared hope. So here is a blessing for you. Since I am Scots Irish pretend it’s a traditional one if you so desire:

May you hope. May you dream. May you have all you need. May the struggles make you stronger. May you know love.

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