Learning some tools

Many years ago, I had what one calls juvenile arthritis. In some circles, they say cystic fibrosis-related arthritis. It started at 12.

For me, the best-educated guess I have is that I absorbed everything and held everything in. Now – mind you, in some ways, it didn’t seem like I had a choice, at least holding everything in part.

When I was quite young, little 2,3, 4, all the way up until double digits really, there was this ever-pressing fear that I would get sick and die. My mom broke down a lot in the clinic, and while with my doctors and nurses’ best intentions they did what they could. They asked how I was and I always said, “fine.”

I was fine until I wasn’t.

My emotions did not match the event. I never cried or showed anything with the big stuff. Stoic. The small things, I would get upset, cry. I was over-reacting and then not reacting. Displacement.

There was always a social worker, but I was a kid, 6, 7, 8, I didn’t know how to express myself, use my words. Then, there was mom crying over there.

At home, my brother was neglected at times. How could he not? We were doing two hours of therapies day. My mom cooking and feeding me relentlessly. The counting of the calories, the medications. The mist tent I slept in for years.

My brother acted out, while in my world, everything was “fine.”

Who the fuck knows?

When there is a child in the family with a difficult condition, frankly I don’t know how anyone makes it out alive.

The house rules, and in my house growing up, CF was the house. Everyone else had to play by its rules. We just didn’t have all the tools nor the know-how.

I am going to go against the disability myth, trope, stereotype of overcoming or compensation – meaning if you just work really hard you can do it.

What happens if you can’t? You fail. You are a failure. That is really bad for your psyche. And you do not need to overcome everything – fuck that.

What do you do?

You move on through.

You feel the things you are supposed to feel. I had a lot of fear – fear of dying, fear of living, fear of not knowing. The anger grew from that fear, which grew into all that other stuff, depression, then arthritis. I don’t blame myself at all – too much for a kid to handle.

I had to move on through.

I had no choice. I was in pain because I was in pain.

I had a breakdown at 20, and I moved on through. I breathed. I let go. I read this book called The Tao of Inner Peace. – Diane Dreher. It really helped.

Now, I sit with what I need to sit with and allow it to move on through. I don’t hold it inside.

In fact, my body does not have the capacity to hold anymore. I will just cry.

Thank you.

Because I learned the tools. I can’t hold that stuff inside. I allow myself to feel and not shove down all that energy.

Sometimes I look at my hands and open and close them without pain. Wow, Tessa, you did it.

I moved through. I am still here with CF, and no matter what I keep moving. I wish – because my health feels strong and good, I wish I didn’t have to do so many treatments still. So much energy –

I wish I could travel to so many places and walk and walk and walk and see things. I will travel and I will walk; I still have to move on through the spaces CF allows. It still rules.

I am not going to work towards a Ph.D. It is too ableist and it doesn’t make sense for me at this time. Twenty years ago – if I had this medicine, this wonderful and beautiful cell corrector that has changed my life –

I am here. I will keep on writing. I will teach. I will do good work, and I will continue to move on through.

Many blessings. Much love.

post-script: they say keep an eye out for the sensitive child in the house. They absorb the stuff in the house, in school, they are the kids that have those stomach aches. Without moving on through, it can grow. Just needs a time-out to learn some tools.