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Connection To The World

For me, it’s not the smell in the air or new buds on the trees and flowers or the date on the calendar (when I was extremely severe I had no way of knowing), but sunlight streaming directly into my room through my sliding glass door window that marks the beginning of spring. It peaks in right now for the first time in the year and slowly moves deeper into the room through the summer when it shines right on my face and pillow for a period of the day, until moving out of reach in the fall.

In the winter the overhanging second story above blocks all direct sunlight from this window. I have to keep the other window in front of me covered with a layer of aluminum foil and a brown sheet over that to completely block out light because I can’t tolerate looking outside for more than a few moments without crashing and there’s no way to look away from this window in front of me.

I remember before I got so severely sick I had this window uncovered and during a certain time of year direct sun rays would light up a line along the wall next to me. It was always very beautiful.

It is a challenge to find ways to stay connected to the outside world with severe ME/CFS. I feel almost completely disconnected from things like the seasons, the weather and the outdoor temperature because I’ve had to isolate myself from them. The only time I smell fresh air is for a moment when I go to the bathroom to take a crap! (the window in the bathroom is open to keep oxygen flowing). And of course when I’m drugged on Ativan and go to the hospital every 3-4 months I get brief moments of fresh air while I get wheeled to and from the ambulance. I always make them stop at some point briefly so I can just have a moment.

When I was extremely severe I had no knowledge of news or politics. I didn’t even know who was president until I went to the hospital for the first time and overheard some nurses talking about it.

I live in Palo Alto which is pretty snobby and not the kind of place I ever imagined living, especially at this age. There are a lot of tall fences and very little community. People generally stay inside their big homes. But a new young couple moved in across the yard on the other side of the block from us when I first started getting really sick. They have a swimming pool and kids who I imagine are in the 8-15 age range. They play in the pool all summer and their parents had pretty frequent parties with music and lots of people chattering. Somehow the combination of not knowing them and the distance and separation from me over the fence made these sounds tolerable for me if I didn’t really focus on them too hard. It brought unbelievable joy and sense of connection to my life. Just getting to hear those sounds of humanity; It helped me remember. Someday I will thank them for being there and bringing life into my world of lifeless darkness.

There are little ways in which the world safely makes its presence known to me and for all these things, while few, I am grateful.




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