Days Twenty-One and Twenty-Two

Oh wow. I don’t even know how to begin.

Yesterday, Sunday, I was still really scared. Scared of coming back to the program and being expected to do too much. Scared of making my major flare-up a massive flare-up. Tired of avoiding, I took a walk to the park and went for a swim at a public pool, ordered a burrito and ate it sitting in the restaurant. But still really scared, scared of today.

Then today happened. I told people about my weekend, but I didn’t have a one-on-one session with my therapist. Then we went for a shopping trip to the grocery store and I felt so frustrated and angry with everyone encouraging me not to avoid, not to lie down, just giving me these full schedules and not always listening to me about my ability to pace, that I walked to the grocery store, shopped standing up, and walked back home with the OTs and the other patients. Massive pain in my knee, a tremendous amount of fear. I felt like I would rather be dead than feel this.

I have experienced that feeling before, but it’s been a long time since I felt that with the knee pain. Like a year ago. That deadly dread, a feeling that I’m afraid to be alone with. A long time.

I went into the bathroom, lay on the floor, and cried. It felt like everything I have worked so hard for this year–my hard-won 30 minute walks (up from 1 minute!), my gradual returns to standing and sitting, and all the progress I’ve made in this program, like my amazing zoo trip with my wife and baby and my ability to sit for a solid hour–were destroyed in the space of an hour. I felt destitute. Completely alone.

I think what I’m afraid of is going back to the time in my life where my knee pain was so bad that I couldn’t even make it to the bathroom in the middle of the night. I would pee in bottles in my room. That kind of aggressive limitation terrifies me, especially after all the gains I’ve made this year. I am deathly afraid of losing what I have gained. And I don’t know how to recover without being afraid that I will lose it all again.

After the last class of the day, I talked with two friends in the program. They heard me as I talked about my overwhelming fear. One hugged me. We all cried together at one point. I feel so vulnerable. So much pain in my knee right now. But talked to them helped. Being messy and not making sense and just saying whatever was coming up, and being listened to in that situation, felt healing. It made the fear feel not quite so menacing.

So that was my day. I am afraid to be alone tonight. My knee pain is at a nine out of ten.

But I am still here, supported by the kindness and generosity of others.

I am still here.

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