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Breath & Shadow

A Journal of Disability Culture and Literature

Winter 2013

Volume 10 Issue 1

 

 

Jealous of the Freedom of the Able Bodied

by Afal Awen

Jealousy and I made friends when I was about 19 years old. In NYC where everyone is famous and creating history nonstop, I decided that instead of being jealous of the elders in the tribe, I’d just be INSPIRED.

I hate competition. It’s one reason I hate grades. I got straight As and others felt bad. I hate sports for that reason too. Feminism at an early age taught me about how society sets women up to compete for male attention, so I avoided that. I didn’t want THAT kind of male attention anyway, the superficial kind.  I grew up with the notion that if it is not win-win, if there are losers, it will never work.

Also growing up in punk rock pre-zines, pre-Hot Topic, pre-iTunes, the point was never to be cool or “make it” or have “success.”  Those were mainstream things no one ever thought about.  It was more about making statements, life as performance art, and scorning those who “sell out.”That time is long gone. Everyone wants to be a superstar now.  Back then we wanted to kill and eat superstars, in a metaphoric way. Nothing mainstream impressed us.

The more I did stuff, the easier it was to do more stuff. Coming from a very broken family, having no socialization and being feral, I broke a lot of rules I had no idea existed. I got hurt really bad many times, and I also had amazing opportunities, all because I didn’t know better.

And then people were jealous of me.

I had no sense of limits. At 18, I decided that since at age 14 I said I was going to move to Ireland someday, due to the bands Stiff Little Fingers and Undertones, I just did it. I’m not a fan of people who lie or don’t follow through. Get ticket, pack bag, leave.  Burnt out from teaching homeless kids? Call James Gauerholtz whom you met once at a dinner where you explained why you don’t like William Burroughs and ask if William Burroughs Communications needs any help, and be hired.  See someone litter? Chase them down a street with it in your hand screaming “Sir, I think this belongs to you, sir, you dropped something!”

Now I have limits. I have chronic fatigue. I cannot walk very well. I have short term memory loss. Verbal processing is difficult. I have limited range of motion. I have blurred vision. I cannot be anywhere that has chemicals or petroleum or smoke, which is everywhere, unless I wear an uncomfortable mask. I am a shut in who cannot even do much in her one room prison of safety due to pain and exhaustion. I use my limited energy trying to use the ADA to get social service and medical help I am being denied from the state of Vermont for having multiple chemical sensitivity while seeking sources of money for the crazy medical needs I have. I do not know the weather or even the month.

Meanwhile my friend Rachael is flying to Kona to do private vocal lessons, playing guitar, having her art in People magazine, and teaching art workshops in hipster stores in Portland. Justine is overwhelmed with the berry foraging season, attending a Pagan drawing class, emailing with people I really wanted to have like me and they didn’t, and having animist experiences with slime mold. Ceredwyn is visiting with the woman who was her foster daughter, Ceredwyn then being 24 and the foster girl being 17, a runaway in Ceredwyn’s scene back in the day when social workers and cops gave homeless youth one way bus tickets to nowhere. When Ceredwyn returns she’ll have her chickens, her loving husband, and various adrenalin rush emergency service trainings in her strong, loving, EMS community. Adrianna is teaching permaculture, bringing in the harvest, playing drums as her friend hula hoop dances, making herbal medicine, and discussing starting a free school and an eco-village with friends. Glen, in less than one year, got 100% free housing, medical care, utilities, an amazing psychologist trained in actual third generation CBT, free furniture, and tons of support from his UU church. Glynn has typical free Irish housing, and at 42, decided to take Ireland up on its free University program, majoring in Art. The more he learns about the States and my terrible anti-social services, he keeps asking me why I don’t come home, to where crips like me even get free transportation. Denise’s gallery in Galway is doing great and her art is selling. Lisa is writing for the Huffington Post, walking to raise money for various causes in LA, wearing designer hipster clothing, traveling to New Orleans to see her Vodou mambo for guidance. Catharine’s sex change is going so well she started dating for the first time, and when I hear her talk of her first kiss, I am so giddy thinking about love and sex until I remember I have multiple chemical sensitivity.

I’m sorry, but those are supposed to be MY lives.

I don’t want to be bitchy or snippy with my friends. It’s not their fault they are so amazing and DIY and active and involved.  Rachael did not go to the beach yesterday to make me feel sad. Justine did not find gypsy mushrooms that she cannot show me to make me feel sad. Ceredwyn is not doomer homesteader writing fan fiction to make me feel sad. Adrianna is not creating permaculture as community, not just agriculture, to make me feel sad. And so on.

I hate them so much for these precious, common, everyday moments they are lucky enough to still have. And I want to hear all about it. I vicariously live through them.

Confused, I feel a weird gap between me and my friends. I am in crip world, an underground. MCS is Morlock level underground subculture. I am stressed about survival all the time. I don’t want to burn people out by the MCS constant crisis way of life. Since starting PTSD recovery, I have opened myself up to my anger and grief for the first time. There is a lot, both in the present and the past.

I know that life is not fair, but hearing from a friend who just had her first kiss made me sad. I do all this freaking rape recovery ,and feral child/street punk PTSD recovery, and Deke marriage PTSD recovery, gain my sense of self, have an idea of what healthy relationships feel like, and I cannot have sex. Ever again. How would I meet a guy?  I don’t go outside and internet romances are bad news. Why would he take the time to be totally unchemical?  What birth control could we use?

I am sad that I don’t have any hope for romance again. Not a relationship even, but romance. Dinner, movies, concerts, outings, sex.

Touch.

Eyes to see into.

I want to eat takeout food.  To forage usnea and burdock root. To swim in the lakes. To go out to see bands and art. To wear clothing I like. To hold Tarot cards.

Who am I without Tarot? I do not know.

What did I offer as a friend? Tarot readings.  Nomadic tales of adventure. I don’t have that anymore. I am not that anymore. My life got cut short. I am not really jealous of my friends, it turns out. They do not have my life. I lost my life.

Becoming a crip, especially with MCS, mobility issues and no human contact, limits your choices. I always felt so unlimited, that anything was possible. I was never locked into anything, aside from being married, but my 2 ex-husbands didn’t feel the same way about vows as I do. I saw a future when married and based my life on that. Then it was ripped away. I fell into no man’s land. Alone, dealing with PTSD recovery and cerebral palsy issues, my mother suddenly appeared back in my life, against my wishes. I lost control of everything. Powerless, vulnerable, dependent, trapped. Hopeless.

See, when I became this disabled, I lost the power to make my own life. Now anti-social workers and my mom and the mental health people and rare doctors who can help me do it. But there must be, somewhere in the limitations of poverty, isolation, pain, imprisonment, sickness, there must be something I control.

I do make choices. I choose to pray with Glen on the phone several times a week. I choose to build a website for persons with MCS trying to get their home together. I choose to advocate so social workers give me what is mine by law. I choose to research and write letters about the ADA to my landlord. I choose to sell things. I choose what safe things to buy. I choose to search out safe things. I choose to meditate and do yoga. I choose to sew. I choose to write a blog. I choose to donate things. I choose to be nice. I choose to be self compassionate and let myself grieve even though our culture is grief-phobic. I choose to keep up my PTSD recovery work. I choose to work on being the daughter of someone with borderline personality disorder and someone with Asperger’s. I choose to forgive myself for being normal, human with feelings.

Like jealousy. I don’t want my friends’ lives. If those were the lives I wanted, I would have made them happen. Instead I made my life happen. That is the life I am jealous of not having.

With such intense limits, I am not sure what to hope for, what to expect. I don’t know how people live this way and are happy. MCS doesn’t seem to allow happiness. People’s lives sound like old cautionary fables, modern war stories, and/or futuristic prophecies. Not much joy. Like prison camp.

I know how to have a meaningful life that reflects my values. But I am not sure how to have a life I enjoy.

I have to figure out a new way. I guess I am jealous of those of you who don’t. Who can get up today and be who you were yesterday. Eat what you eat, go where you go, see who you see, do what you do. I don’t know how to live. I’d go to the psych ward, but my MCS is so severe I’d never get emotionally stable in that chemical cesspool.

I was reading this Buddhist thing about how the glass is already broken, so don’t worry about breaking the glass. Eventually, it will break anyway. So it is broken. Enjoy it now. Impermanence.  Don’t worry about breaking it. If not you then someone else will. Or a chicken. (Thai Forest monk.)

But when it comes to the body, and it breaks, what do you do with the shards? Or do you just enjoy what isn’t yet broken?

I don’t have any leads on how to create a life I want to live and be someone I want to be in these new circumstances. I wish I was jealous of some MCS people and other crips, not because of their crip activism, but because of wanting to live like them. Then I’d have inspiration. I’ve always been an activist. Happiness is much harder!

I have no mentor, no role model, no heroine, no idol to model my new self on, no one who created any direction, or even made a start. There is something very lonely about having to recreate yourself with no guide. Nothing I have read or seen or heard has provided me with inspiration. I have never known of any crip where I said “Wow, I am so jealous, I wish I could live like that!”

I fear I’ll lose friends because I am pathetic and cannot do anything we had in common now. Or I am so filled with rage and grief about things they truly do not understand. Or I have nothing to offer. Broke, tired, experiences so limited to fighting for survival, what common ground do/will we have? Will they leave with my old self? Back to the Buddhist Thai forest monk: How do unbroken glasses hang out with a broken one? Why would they? What if I accidentally cut them?

Who is my new self? I want to have fun. How do you do that with MCS and being a crip all alone?

I’m confused about self. I am jealous of me. Of who I was. That person had no idea how great she had it.

And I hate her for it.




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