Sunday, June 26, 2016

Things I Want In My Life

I have a lot of goals and dreams and hopes. It's a little bit ironic since I've spent the massive majority of the last THREE YEARS living in a bedroom. Isolated to a degree that is flat out inhumane. And the thing is, I'm still here, in that bed but I'm hoping and fighting for this shit to change.

My List, in no particular order:

  • To stop living in this bedroom
  • To move into an apartment
  • To buy a new car, somehow (how is it the most basic things in life cost so much but disability payments are so low?)
  • To travel more
  • To eventually make it to Israel
  • To volunteer some way or another with Tzipi Livni's campaign.
  • To actually get to sit and talk with Tzipi Livni and not have my stupid illness ruin that for me. Maybe I'm wrong to see a kindred spirit and a role model in her but I don't think so. There's really not so many places I can look and find Jewish female role models and representation is important. Beyond even that here's one who seems to share a lot of my values and interests and even outlook, another optimistic realist, a strong but feminine, wicked smart, intelligent, caring, and even introverted person. I've spent a lot of life, even before my illnesses feeling like an outsider, unique but sometimes in a bad way, weird, so to find anyone at all who makes me feel a little less alone and who helps me believe women can be strong and do anything, that matters. I think that's what feminism is about. That women shouldn't have to act or dress or behave a certain way, that we can still be feminine but successful and strong. And no doubt there's many other women doing this but Tzipi is the one who resonates with me and for so much more than just that we share a name (though certainly I love that too- makes me believe a little bit that things happen for a reason, people come into our lives for a reason, that a Jewish soul is a thing...). And if nothing else this is one person who has shown me kindness when she didn't have to and who treated me like a valuable human being when I was in a very dark place and when frankly many others did not see me the same. A few minutes of kindness can go a long way.
  • To reach some level of fluency in Hebrew. To make Israeli friends, be able to write to Tzipi in Hebrew, to be able to participate in the political discussions that excite and fascinate me.
  • To go back to school, to a good school that challenges and excites me.
  • To work, somehow. As delusional as it perhaps is I want a real career, something I'm proud of and somewhere I get to use my brain. Someway, somehow though I sure can't serve in the foreign service even if I miraculously were basically cured, maybe just maybe there's a place for me in the foreign affairs world. Maybe. I'd like to hope. 
  • To quit smoking. I'm not ready yet and it is much more difficult since quitting makes me fanatically hungry and there's not a damn thing I can do about that.
  • To build up a support system of friends, advocates, doctors, nurses, everyone I can.
  • To find better doctors who will fight for me and with me and who value my quality of life above all and listen to my ideas and input.
  • To date, to fall in love with someone who loves me back. To find someone who sees all the spark and light, nerdy and silly, playful and bold, full of life, intense in the best ways, big-hearted, soul of me. To find someone who sees me as worth it, as so much more than my severe illnesses, who treats me with the love and kindness I deserve and who is worthy of all I still have to give. May she be Jewish and passionate, a traveler, a dreamer, a doer, smarter than me, and as fierce and fiery and dedicated to me as I will be to her.
  • To find a purpose, some kind of meaning, something so much more than pain and suffering and longing and unfulfilled needs. I am alone in a world not built for me with no clear path, no one to follow or look up to who has been anywhere near where I am and where I want to be. It's scary but yet who knows what I may do if I am the first of my my kind. I want to stop fearing death and to chase and embrace life and go to sleep satisfied and full instead of anxious and afraid.
  • To heal a lot of hurt and pain from my past, to feel worth it and worthwhile and worthy. To fully embrace that I am not responsible for other people's problems and issues and that their mistakes are not a reflection on me or my ability to be loved.
  • To build a family of sorts, not so much to have kids or anything because I don't feel that's in the cards for me but I guess relating to the support system thing, I want to find people who are there for me and who don't use or abuse me, to build up a family of my choosing to make up for the deficits and pain from my past and the things so sorely lacking from my actual family. So maybe it won't hurt so much anymore and I will know people have my back.
  • To find my own voice again, to not back down or give up. To fully embrace and build back up the fiery confident woman I was and know I still am inside. To deal with my shit, the big, the mundane, all of it. To not let anyone push me around or down. To not be intimidated. To show people how strong I still am and not merely just for showing up, for just living disabled and all. I don't want to be somebody's inspiration porn. What I want is to be so bold and authentic and vibrantly me that maybe they stop seeing the disability so much and instead see me for me. And I don't want to be afraid anymore or to feel like I am less.

I just want to live a life that is worth it, that I am proud of, that makes me happy. I've been through far more bullshit and hard times than anyone deserves and I think it's time for the good. For once something improved in my health instead of worsening. I'm still struggling hard and very sick but I choose to have hope.

I have been so isolated and alone and doing so very little that it's almost as if I am infant with so few connections to people or places. I do not know my own potential. We live in a world that doesn't seek to find or maximize the potential of people like me yet we simultaneously love happy endings and the inspiration porn thing where to see a sick or disabled person do a basic human thing is to call them an inspiration. I say bullshit.

Why are we content with or surprised to see a disabled person living their life? Why don't we build a more accessible world and more accessible healthcare system and seek to improve quality of life. Why don't we ask disabled and sick people what it is they want to achieve and help them find ways to do it, eliminate some of the roadblocks and misconceptions? Why don't we expect more?

I want more. I choose to claim more. I will do whatever it takes to get as much as I can. Because why should it be enough that I got out of bed or that I have a positive attitude? Why should that be enough? For me it is not enough. I want so much more and yet in so many ways I also want so little. I just want the basic things all healthy and able-bodied people take for granted. I don't want special treatment. I don't want fame or fortune or a bunch of physical stuff. I just want to be happy and fulfilled and challenged. I just want to thrive and to push the limits and refuse to be content with my life as it is.

 Sure I could sit and think about all the obstacles and problems and how short my life may turn out to be and I've done that, damn it. I have done that. It is a miserable life. I don't want to do that anymore. I don't know what I am capable of or even how realistic all of this is but it is what I want, what my heart cries out for. I could focus on all the problems and limits or how few disabled people, especially those with severe chronic illnesses (which are in so many ways more unpredictable and discouraging and limiting than an injury or stable type of disability) I see doing things. I don't even know what's possible. And I am not dead yet. So I'm going to focus on the potential, find comfort in these unknowns by choosing to reach for them and fight for them and seek finally all the help and resources I can get. Here's hoping for something so much better than I have because I have been living at rock bottom. It can only improve from here.