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Alone Together

This is how I’ve looked with a person in the room since 2013. When caregivers are in the room briefly to bring me necessities and change urinals, hookup new food bags and IV saline bags, etc, I have to hold completely still and use earplugs plus earmuffs over them to isolate myself from sounds made by them in the room. I also have to cover my eyes with a towel to reinforce visual isolation and reduce stress. My eyelids don’t feel like enough protection from human presence.

The only exception is when I go to the bathroom for #2 and get natural adrenaline that allows me to walk 5 feet to the bathroom (which hurts the muscles in my legs) and tolerate human presence and even move with someone in the room so they can help clean my feet and change my socks (which I haven’t done myself since 2013) and bring me ice to put on my stomach (it gets sensitive when I go to the bathroom and ice helps protect it from getting worse) and other necessities.

In the last 6 months or so I’ve made some improvement to this sensitivity to human presence and been able to have my caregiver in the room without going to the bathroom to bring necessities to me in bed like a new food bag and a new IV saline bag without the earmuffs or towel over my eyes. But only briefly and because it is necessary. And I still have to stay in bed. My body releases adrenaline to make it possible. Which dissipates quickly when she is done and my sensitivity to human presence increases again. Voices are induce so much stress they are like shocks of electricity.

I still cannot talk to them and can only tolerate brief trips into my room once or twice per day. Social visits are still too much for me without taking great risk to my health.

I know others have similar sensitivities and are also alone like I am.

We are alone but we are alone together. Connected by a great ever reaching silence.

I love all of you.


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