Stable Disability, but an Evolving Self (Part 2)

Warning: If you see us together, The PARTY has arrived ;-)

One of the biggest positive influences to my self-worth during college was the distance I had from my family. As harsh as that may sound it was great for me to make all of those day-to-day decisions on my own: figure out when I needed to rest, how much could I handle (alcohol, school work, all-nighters etc), what accommodations would I need, the best way to get around the snow, and how I was to advocate for myself. The biggest change in this sense was that I felt productive and purposeful within my own life; by taking charge of these details I had finally got to a point where I was literally taking charge of my O.I. and O.I. was no longer the perspective through which I saw the world. My self-worth was no longer defined by the differences I saw between me and my peers, and it was no longer bogged down by the things I could NOT do. Because now I was in college -- and college was a place of learning, of being involved in the student community, of leadership, of having a positive impact in the community, and the overall growth of a person. The focus was no longer what I was unable to do, but what I can do and how I can do it best.

In some ways this was good and bad. It wouldn’t be much later till I realized that by throwing myself head first into being engaged in the student organizations and my life as a young adult – I had effectively boxed everything about O.I. into a crate and locked it away in my head for four years. Aside from some minor accessibility issues and a two or three broken bones throughout my entire four years, O.I. stayed hidden, muted, and I crammed every aspect of it in some dark corner of my brain. I was focused on the school paper, then it was Students for Social Justice, then the women’s center, then my semester away in Washington D.C., then my internships… I was a research assistant to one of Obama’s foreign policy advisor’s, then worked on a national campaign for volunteer service, had a role in policy changes, and learned about how warfare was striving to be more cautious of protecting human rights. In my student club I was teaching other students about human trafficking, the importance of human rights, attending U.N. Days, getting involved in Amnesty International, raising awareness of homelessness and poverty issues, and inviting guest speakers to campus…
Through all of that I honestly didn’t feel like I had time to “be disabled.” I know that it may sound odd because you’re probably thinking but it’s in your GENES, Sandy. You are ALWAYS disabled. 
BUT! If I were able to give every O.I. person a gift it would be an extended period in their life when broken bones and other related issues just Shut. The. Hell. Up. It was a time for me to experience life as a young 20-something – the whole scene that involved drugs, drinking, partying, clubbing, dating, making na├»ve mistakes, pulling all-nighters, pushing my body to its limits, and all the while enjoying the time I shared with my friends through all of the ups and downs.

Who doesn't have one of these pics from college??

 My self-image during this time was wrapped up in what I was capable of doing, not physically but mentally. I also learned how to have an impact through my presence, through the issues I wanted to teach others about, and the awareness I wanted to spread. I became confident in my knowledge and over the years basically swapped that with my otherwise unconfident person. I hid behind the human rights stats, and the policies on homelessness that our country was failing to change. I was still uncertain about myself as a person and who I was, and so I clung to the issues that I was so curious about and wanted to have an effect on.

After college was over I was accepted to law school but was uncertain of whether it was for me. I didn’t know what type of law I wanted to focus in, and quite frankly wanted a break from all of the classroom learning. So I did a year of AmeriCorps service and continued to bolster my self-worth through my year of service at a local community college in Boston. In this position I created a mentoring program and was able to further hone my leadership abilities and threw myself into the work. Our corps was always busy and I was always swamped during the program development phase; I fell in love with the work and even became incredibly interested in the education field – not as a teacher but on the policy side. I always questioned why so many of my students were so unprepared? How come my students were always underperforming? What was causing this? Where was the money going? How could this be changed? How would finding them a mentor best help their future education? More specifically I wanted to know, how was going to change all of this some day?

My friend and I showing off our AmeriCorps gear

Of course, as the saying goes -  all good things come to an end. And as wonderfully challenging and rewarding as my year was, my year with AmeriCorps eventually came to an end and I had to move on. I had no idea what I wanted to do… and found myself shuffled off into this grad program that I more or less wanted nothing to do with. I lost my sense of self, a sense of purpose, a sense of reason, and like a ticking time bomb that crate I had locked away in my head five years ago burst open. For the sake of privacy I would rather not get too much into the details but needless to say I was deeply depressed. It was awful. I hung out with no one, I stayed home, plowed through my day-to-day routine, self-medicated inappropriately & dangerously, until one day when I was finally working through some of my issues a friend of mine said:

“You know what you should do? You should start a blog and write about your O.I. I’m sure it would be really helpful to the parents of O.I. kids who don’t really know what they’re getting into or are learning how to handle things for the first time.”

And here we are today. I am a MUCH happier person, more confident in who I am, and for the first time in my life am dealing  with all of those things I locked away in a crate. And while I feel like some of those things are still so underdeveloped – I am playing a rapidly fast game of catch-up and am having so much fun doing so. I am learning a lot about myself, about YOU (my readers), about the things that make me uncomfortable, about why they make me squirm, and best of all I am now able to say that I don’t need the locked crate anymore. It’s okay to work through things, in fact it’s more than just “okay” – I’ve learned that you need to otherwise you’re not really living life, you’re just sitting on the sidelines pretending to play a game. 

So thank you, reader, for being so patient with me because whether you realize it or not you're actually on a journey to Who Knows Where with me. And I am slightly scared and very nervous, but having you along for the journey makes it so much better and extremely comforting :-) 

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2 Responses to Stable Disability, but an Evolving Self (Part 2)

  1. Just wanted to say that I have been reading and enjoying your blog. For a long time I wished for someone with OI to write a blog about living with OI so I could compare experiences. My experience of living with OI (Type I) is a little different because I don't physically appear to have any physical issues. I'm 5'9" and able to walk, and most people assume there's nothing wrong with me. Despite the differences in our outward expression of our disability, I find that your experience is very similar to mine in a lot of ways, in particular, thought processes that revolve around living with OI and how we see ourselves.

    Anyway, I just wanted to say, thanks for writing, and I hope you will continue.

  2. Hey thanks for stopping by & for the comment!

    We were hit by Hurricane Irene which interrupted things a bit but now the regular blog posts will continue to resume. :-)


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