Showing posts with label depression in people with disabilities. Show all posts

So I Blamed it on Myself

By | Published Thursday, August 16, 2012

Alright, I will try. I will try to explain myself during those moments I have had as a child, as a teen, and as a young adult. Maybe it will aid in clarifying the fog for that other person. Maybe it will help you understand why your spouse, child, friend, grandson is thinking these thoughts. Enough with the maybe's already, I won't know until I try:

"It's my fault that mom cries so much..." "It's my fault that we can't go anywhere fun this summer.." "It's my fault that dad has to work so much.." "It's my fault that we are taking so long.." "It's my fault dad has trouble lifting me and the cast.."
Why did I do this? Why did I think these thoughts? Because it was, and is, so easy. It happens with such speed and ease that when I really think about what just crossed my mind - it is a little disturbing I can get there that quickly.

When I was a child it was the simple explanation that would morph into some uglier thing in my head. The simple explanation was usually something like, "it's not safe for you to do this..." and of course somewhere in my screaming tantrums that translated to: "you have brittle bones and the consequence is you cannot do this." That wasn't the reality of the situation at all! O.I. was never used as a negative consequence when I was growing-up - it was never presented to me that way. However, in the world-view of a child everything is black-and-white; my perception of reality was clear-cut and concrete, I had no ability to think about anything other than what was five feet in front of me. So began the phase of "it's not fair!" 
Recognizing that something "is not fair!" essentially acknowledges that there is an alternative that would be preferable; however, that alternative is not attainable or allowable. In other words these were my teen years. For any thing I was not allowed to do my brain schemed of ways to do it anyway, just more hidden or away from prying eyes. My teen years were riddled with alternative-half-cracked solutions I jimmied up. But I did some of those things because it was my way of not having to deal with the reality; I refused to accept any part of me that prevented me from doing what everyone else did. In my mind I thought that if I did accept myself, I would be facing some alien I was too cool to give the time of day to. I didn't realize that facing myself wouldn't make who I was my fault. Whatever foresight my tunnel-vision managed to obscure did not let me see that my differences did not exist in order to be blamed.
Through some series of events and life experiences I got tired of playing Bugs Bunny. I got tired of always trying to escape from the traps, from being the clown with a trick or twelve up her sleeves - always at the ready to slip away. So I have begun to take the time to see what the heck is in the mirror when I look at my reflection. Some days it is easier to do than others; some days I am lazy and would rather not take the effort to grapple with what's in front of me. Some days I still mumble "it's not fair, if only I weren't..." and I get this immediate sense of coziness, because that is what I grew-up saying for so many years. It's cozy not because it 'fits' with how I see myself now, but it is cozy because that was a saying throughout my childhood - there is a great familiarity for me in that mentality. It's still so easy to do.

In between all of this, of course I had family, friends, teachers, etc. who said "this isn't your fault.." "don't think like that, you didn't ask for this.." "don't blame yourself, you can't help the way things are.."  And usually I would respond with a tireless huff and a long drawn out "I KNOooooowww-uhhh" like a foghorn warning away the obvious.. because I did in fact know I was not to blame; I knew that the explanation was much more complicated than that, and that it had to do with making babies, genetics, and other weird things.
But just as I eventually grew-up and learned (am still learning) how to accept/manage the things I get thrown, it might be helpful for someone out there -- if the individuals in that person's life... also learned to accept the reality of these thoughts. Because chances are that they will be thought regardless of what we are told by our loved ones. Acknowledging that such thoughts do wander in and out during various life stages just might help that person try a little less fleeing, and try a little more growing. Now it's your turn: You won't know until you try.

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Whole to Fractured - The Mental State

By | Published Wednesday, August 31, 2011

Special Note: This is my 100th post! Let's hear it for 100 more =) Thanks for reading & for your support!!
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"Does having a broken bone slow you down at all?" My high school journalism teacher asked me. To this day I don't know what spurred her to ask me this; maybe it was because that time I had my head down, and was heading to my next class away from the rest of the crowd - taking care that my broken arm wouldn't be further jostled.

I have often re-visited the question my teacher asked me in my head, do I have a 'fractured' mentality? One that is more than just taking extra care, moving about with caution, and taking care to keep the cast dry in the shower? And if I do have a broken-bone mentality, how do I make that transition from being 'whole' and in my 'normal' state to one who is injured?
When a fracture has just happened I get very quiet. I stay away from the group and generally prefer to be left alone. In this state I definitely do have a 'broken-bone' mentality in that all my energy is focused on assessing the injury, stabilizing it, and 'getting used to' the feeling. A fresh fracture heats the surface of my skin and is sensitive to the movement my body makes with every breath that I take. Aside from the extraordinarily annoying distraction that comes with the pain and discomfort a broken bone brings, I think around this point I'm already trying to figure out how to "move on" from the fracture. I talk myself out of being totally succumbed by the pain and annoyance of the fracture:
It's just another fracture. Bones grow. Bones heal. This isn't going to be forever. Be calm. Ignore everyone else. Make sure no one touches the broken bone. Defend and protect it. 


I am only 40% listening to anyone who is not a doctor or a nurse when a fracture has just happened. Don't get me wrong, I always appreciate friends and family who are there with a comforting word or are trying to help - but my world suddenly becomes limited to the fracture and managing it the best way only I know how. There is an underlying fear in me that if I get distracted by other people talking to me I won't be paying attention to the broken limb. I won't be holding on to it the right way. I won't be paying attention to when my skin has stopped heating up. I won't notice when someone accidentally bumps into me. All of these slip-ups on my part can cause a lot of pain that I have somehow taught myself can be avoided. From this point on whatever pain can be avoided I will leap towards! If it means waiting for my orthopedic doctor to come back from his vacation before setting the bone again, I'll wait. In my 'broken bone' mentality I will only do things that I am most comfortable with, know the outcome of, and take no risks; this is pretty much 200% contrary to how I usually am.

After the broken bone has been stabilized and there is a cast over it I try my best to get right back into my usual routine. Of course there are things that will need to be adjusted. The way I transition from the toilet to my wheelchair. Or the way my family or friends carry me. The technique I use to open doors while in my wheelchair might need to be adjusted. The way I get dressed. There are a thousand things that need to be tweaked a bit but because I am old enough, have had the experiences, but most importantly have learned -- I usually do these things now without a second thought.
Aside from all of the day-to-day tasks my 'usual' routine has also consisted of school, work, hanging out with friends, volunteering, going out with friends, hanging out with friends, and did I mention hanging out with friends? Here's the biggest obstacle for me whenever I have a broken bone: FATIGUE. I sleep a lot when there is a fracture, and usually almost immediately after a cast is put on I am fast asleep. It's hard for me to accept that I am not able to do as much with my day. It's annoying to admit that I need to stop and rest. The toughest part of this part, for me, is when I am resting I realize that I am resting because I broke a bone. During these moments it's usually just me and the cast, and right then at that moment - Yes. I hate to admit it but yes, my life is slowed down a bit when I have a broken bone.

I s'pose the title of this entry is inaccurate. My mental state is never fractured and I wouldn't say that it is at all slower when I have a fracture. The lull moments are when I realize how fortunate I am, those are the times when I am teaching myself how to be stronger, when I am 'talking' to my body and telling it to heal quickly; these are the moments when I am learning how to roll with the punches and adapt quickly but cautiously. All of these are things that I carry with me long after the doctor has taken the cast off, I might not remember every fracture incident or every bone that I have ever broken - but I do remember the things each one has taught me and how each one has subtly shown me more of life than I am otherwise conscious of.


Mending a 'broken' mind:

  • Growing up in an environment that encouraged my abilities helped reinforce my coping abilities when I had a fracture as a child. Sure, my parents were a little extreme in that they always sent me to class after they splinted a broken bone themselves - this insanity actually had its benefits!
  • It's easy to slip into the "why me?" mentality. And the few times I have done this I have always been frustrated by the lack of answers, and also by the ultimate pointlessness of this thinking. I think that this is a normal process of thinking and one that each person has to figure out on their own, but for me the dead-ends that I always wound up in taught me to just stop asking the question 
  • This took me forever and years to recognize and it's actually something I recently have come to understand - but it's okay to cry! It's not a sign of being pathetic or weak, it actually helps get stress out when there's little else that you can otherwise physically do
  • What I wrote above is only true for me. Each person has a different way of reacting to injuries and different ways of dealing with your body. It's important to take time to understand how your body reacts to best know how to manage and deal with it! So even though I'm a huge proponent of getting back into the routine ASAP, I know that taking time to rehab and let your body & mind adjust is important to managing fractures
  • Surround yourself with people that you enjoy being with and do things for you! 

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Stable Disability, but an Evolving Self (Part 2)

By | Published Wednesday, August 24, 2011

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 naïve 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 I 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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