A difficult pill to swallow 

Recently I had my reassessment for my state waiver that pays for my in home services. It’s always a difficult time of year. In some ways, you want to fail the assessment because it means you get the help you need. In other ways, it’s disheartening to gradually with your health fall apart.

I had been assessed in 2013, and was deemed to not need further care after my back surgery. By fall of 2014, I had been accepted into the waiver program and fall of 2015, my services were even further extended. Anyone who knows me will tell you I’m fiercely independent,   stubborn enough to give a mule a run for their money, and have an irrational hatred for asking for help.

But I now have multiple providers coming to my home a week. And while part of it is a relief that I’m not juggling everything on my own and I have the help I finally need, it’s so incredibly hard to accept that age 28, I need nursing home level of care. It’s terrifying that I’m so young. So many fears play tag with each other in my head – will things get worse? Will I need actual assisted living? Will I ever improve enough to get the degree to be a hospital chaplain that I’m just one and a half semesters away from? At that, will I ever get the seminary degree I outrifht covet at this point? Above THOSE, will I ever get a job?

My renewal paperwork also stated that I don’t want to work. That’s the furthest thing from the truth. I find that it’s those that actually cannot work that desire to work the most. I would love to have a job. I would love to have a life outside of video games and Facebook and movies. It isn’t how I saw my life 10 years ago, as a senior in high school.

But I’ve come to realize these aren’t the things that define me. The fact I have a great need for care doesn’t mean there aren’t things I still can’t do for myself. The fact that I cannot work does not mean I am not a productive member of society. And the same goes for you if you’re reading this. You’re not a failure if the most productive thing you do today is get up and go to the bathroom. You’re not a burden on society if you need extensive in home care.

You’re still funny, beautiful, and enough. Some days, it is enough just to say “I woke up this morning and I made it through until evening.” Some days it is enough to say that yes, I had extensive supports today but they helped me make this day the best I could. Some days it is okay to say that wow, today sucked and was the worst day in a long time, but I made it, and that is enough.

It’s a difficult pill to swallow. It’s difficult to leave my hopes and dreams behind. But instead of leaving them behind, I’ve watched them morph into something new and something I still never dreamed of. And that’s what life is – making the most of the unknowns and going forward every day.

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