Acceptance
Earlier today I was in a cab to a doctors appointment, the driver of the cab was an older woman and had a very colorful personality, it was a lot of fun talking with her. She was pretty vulgar and that's something I admire being a vulgar woman at times myself. As in any conversation she asked me basic small talk questions but this time it was different.
"So what are you doing with your life?" she asked. "Wow 21st birthday! the rest of your life make it count! Make sure you explore the world" she commented after I said my birthday was coming up.
Usually those simple harmless sentences would have cut right through me, being 20 years old and not having college or a job due to chronic illness often comes with a huge amount of shame for "not being productive" Alot of us feel like we aren't doing anything with our lives and as if we are wasting them. When it's not our fault. & There's the fear of the future and wondering whether or not we will ever get to join back in that world. Not to mention chronic illness often robs people of their youth we miss out on the things that seem like essential parts of being our age whether your a small child, a teenager, or an adult. It's all stolen and replaced for pain, illness, isolation, medications and doctors appointments.
But I've come to a place in acceptance of my conditions where I have pursued new dreams and new goals that are feasible for my abilities. I feel fulfilled and purposeful in my life because of my writing and videography. I don't get paid for it, though I hope one day I do but it definitely makes me feel like I am doing something with my life. I used to feel this gaping hole of "what am I supposed to do now" "what purpose do I have?" "What do I do with the rest of my life in case I'm never able to work?". Now I still fear for other aspects of the future and I still thirst for better health and continue to work on it but I have learned that I can not live in a future that is not promised. A friend of mine said this to me about disability "It's good to want independence, bad to expect it" I don't know whether or not I'll be able to achieve the health I want in life or if I do and I'll be able to keep it.
I remember when I was younger constantly dreaming and scheming of things I would do when I became healthy again, I had a whole to-do list and I fantasized of all these activities.
The crash that came down with the realization of limitations that would be long-term and possibly permanent came with a pain I can not describe. In the movie unrest Jennifer Brea described the experience as if she had died and was forced to watch the world continue on without her.
I did not think it was possible for me to feel any sort of acceptance about living a life inside a house. Nor did I ever think I would ever live this way, when I was able bodied I questioned if it was even possible to be so sick that you could barely leave your house. Don't get me wrong it can be extremely soul sucking but sometimes I have my happy moments, sometimes I have moments where the little things in life mean so much to me and sometimes I have moments where I think that I may be able to make this work.
When she asked me what I was doing with my life I finally had an answer that didn't leave me with sorrow, when she told me to explore the world i didn't feel sadness because I have plans to order a google cardboard virtual reality headset so that I can do exactly that from my home. When she said make it count, I thought about all the goals I hope to achieve through writing and videography. I thought about the many ways that I try to make the best out of what I have. I thought about the platonic and romantic relationships that I made from home online and experienced in person. I thought about all the times I brought outdoor experiences to my own living room or bedroom and felt almost like a normal 20 year old. I thought about I can still live my life even within these 4 walls.
"So what are you doing with your life?" she asked. "Wow 21st birthday! the rest of your life make it count! Make sure you explore the world" she commented after I said my birthday was coming up.
Usually those simple harmless sentences would have cut right through me, being 20 years old and not having college or a job due to chronic illness often comes with a huge amount of shame for "not being productive" Alot of us feel like we aren't doing anything with our lives and as if we are wasting them. When it's not our fault. & There's the fear of the future and wondering whether or not we will ever get to join back in that world. Not to mention chronic illness often robs people of their youth we miss out on the things that seem like essential parts of being our age whether your a small child, a teenager, or an adult. It's all stolen and replaced for pain, illness, isolation, medications and doctors appointments.
But I've come to a place in acceptance of my conditions where I have pursued new dreams and new goals that are feasible for my abilities. I feel fulfilled and purposeful in my life because of my writing and videography. I don't get paid for it, though I hope one day I do but it definitely makes me feel like I am doing something with my life. I used to feel this gaping hole of "what am I supposed to do now" "what purpose do I have?" "What do I do with the rest of my life in case I'm never able to work?". Now I still fear for other aspects of the future and I still thirst for better health and continue to work on it but I have learned that I can not live in a future that is not promised. A friend of mine said this to me about disability "It's good to want independence, bad to expect it" I don't know whether or not I'll be able to achieve the health I want in life or if I do and I'll be able to keep it.
I remember when I was younger constantly dreaming and scheming of things I would do when I became healthy again, I had a whole to-do list and I fantasized of all these activities.
The crash that came down with the realization of limitations that would be long-term and possibly permanent came with a pain I can not describe. In the movie unrest Jennifer Brea described the experience as if she had died and was forced to watch the world continue on without her.
I did not think it was possible for me to feel any sort of acceptance about living a life inside a house. Nor did I ever think I would ever live this way, when I was able bodied I questioned if it was even possible to be so sick that you could barely leave your house. Don't get me wrong it can be extremely soul sucking but sometimes I have my happy moments, sometimes I have moments where the little things in life mean so much to me and sometimes I have moments where I think that I may be able to make this work.
When she asked me what I was doing with my life I finally had an answer that didn't leave me with sorrow, when she told me to explore the world i didn't feel sadness because I have plans to order a google cardboard virtual reality headset so that I can do exactly that from my home. When she said make it count, I thought about all the goals I hope to achieve through writing and videography. I thought about the many ways that I try to make the best out of what I have. I thought about the platonic and romantic relationships that I made from home online and experienced in person. I thought about all the times I brought outdoor experiences to my own living room or bedroom and felt almost like a normal 20 year old. I thought about I can still live my life even within these 4 walls.
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