Friday, November 4, 2011

I'm back...honesty about some disability issues....

After too long an explanation and then some...

It's been a long time since I posted here. I'm hoping to start posting, if not daily, at least several times a week. In the most simple, straightforward explanation, I chickened out regarding posting here. When I started this blog, my plan was to blog about issues related to being disabled and disability as well as other things that interest me. Although I've been disabled my entire life, it's not that easy for me to be vulnerable and post how I'm feeling and what life is like day to day for me as a disabled person and, also talk about growing up with a disability. But I think it's important for me to be that way here and to talk about these things because they are me and it's okay that I'm disabled, something I find difficult to say.

As a disabled woman, I know that growing up and negotiating life when you're physically disabled, in need of crutches or a wheelchair to get around isn't at all easy and is often very challenging. I started to feel a little intimidated after several days of posting and few people reading my blog. I spent some time looking for other blogs by people with disabilities to tell them I have a new blog and also to visit their blogs but I wasn't able to find any that weren't being outdated. As I began to feel less sure of what I was doing, I forgot two important things while letting my insecurities take over: I forgot that this blog is for me, first and foremost with the hope that interested readers will visit this blog and like my posts; and I forgot that it takes time to build a readership. I have another blog, one that's primarily about books. I have many readers on that blog and even more followers. But I've had that blog for more than 2 years!

I knew I needed to take some time to think about why I created this blog and what I wanted to accomplish with it. Talking about disability-related things is important to me because, having grown up with a disability and having to negotiate through life on crutches and in a wheelchair, I know it's not always easy. I also believe that it's given me a different view on other issues unrelated to disability or being disabled.

I have felt insecure about being disabled for most of my adult life. It was a little bit better when I was working as an attorney, but I felt very insecure and exposed at work many days. I have always been good at hiding my very poor self-image. I wanted to blog about being disabled and disabilities in the hopes that I could help anyone who's disabled and feeling badly about themselves to feel better and stronger about who they are, disability or no disability. Many people, not everybody, but enough, treat obviously disabled people differently. People may ignore me, pity me, talk down to me, be rude to me treat me like an idiot and so on. None of this is okay, but it happens and it's difficult not to let it get to you. Some disabled people have the support and love of family and, if you do, I think that's fantastic. Cherish and be grateful for it. Some of us don't have that which can make it more difficult to believe in yourself. But it doesn't make a difference. You should still be respected and treated well. What I've learned is that if I don't believe I deserve respect and to be treated well whether by a family member or a stranger or somebody in between the two, I cannot expect to be treated the way I really want to be.

I was confident as a child but I think it was more that my mind was focused elsewhere. I was really concerned with being a good kid and helpful to my mother. The reason behind this is sad and not one I've admitted much except in the many diaries I kept when a child. I had it in my head that I had to compensate for or make up to my parents for being disabled. I thought I was a burden to my mother in particular since she was the one at home every day caring for my sister and me (we're fraternal twins). I constantly asked for chores I could do or to help my mom out around the house when she was cleaning. When we went shopping, my mom would ask if we'd like something or my sister would want a shirt or some jeans, for example, and my mom would ask me what I'd like. I always said nothing because I didn't feel I deserved anything. My mom figured out a way around what she called 'my weirdness' since she didn't know what to make of it! Mom would ask me what color I liked in a specific shirt or she'd pick out two items and ask me which I liked best.

It never occurred to my mom that my behavior had anything to do with my disability partly because, as far as my mom was concerned, my disability had to do with in the simplest terms, soft bones. She had little idea that it could impact my endocrine system, my cardiovascular system and others. But more on point, I think, my mother didn't believe in counseling, psychologists, social worker or psychiatrists. She very much disliked them. Whenever I was hospitalized for surgery, my mother forbid me to speak to any social workers or counselors who came around to speak to the patients. My mother became very angry with one social worker who didn't immediately leave my room when my mother asked him to. He tried to explain to her why she should let me get counseled. It was one of the few times I saw my mother get angry and rude in public. It's too bad because I think counseling would have helped me a lot as I grew up.

My mom had a trait common to many people: she denied or ignored what she didn't want to know more about or basically, feared. My mom never did any research on MAS or FD after finding a doctor in NYC to treat me. My mom and dad were both very intelligent people. When I was growing up my dad was a workaholic, home only a few hours every day, a little longer on the weekend and my mom took care of everything on the home front. I've said before that it took my parents a long time to find a doctor to treat me for the MAS and FD. Once they did, they essentially relied on him to tell them what they needed to do for me. I'm sure my first doctor didn't tell my parents I should see an endocrinologist because they would have taken me to one. I don't know if that same doctor did any research on MAS or FD after deciding he would treat me....I don't know if there was an info to research!. He was an orthopedist and he did a great job with my bones but that's all of the treatment I received for this syndrome until I was in my 20s.

I think I would have benefited a lot from counseling because of how I already felt about myself when I was a child and because we never talked about my disability and what it meant for us as a family. I know my sister was always upset about the time my mother spent with me when I was in the hospital. She was a little girl and just knew that I was getting a lot of time alone with mom. It didn't occur to her that I was in the hospital recovering from surgery, spending my nights without my family and waking in a hospital room. There were many times during our childhood that my sister was jealous and angry at me. And I, of course, thought she was so lucky because she had great plans every day when I was in the hospital since my mom wanted to make sure she was taken care of well and having fun.

My mother loved my sister and I and did her best to care for us. I know she did what she thought was the best for us. My mother was raised in a very conservative and religious home. She was also a very good daughter so my mom's values and beliefs very much followed those of her parents. I know she found it difficult having a physically disabled daughter and she struggled with coping with my disability. She also made sure my life was as regular as possible, that I missed as little school as possible and that I was able to participate in all kinds of extra-curricular activities.

What I need to do is to figure out why, as I've gotten older, I've struggled with being disabled, especially since I gave up my job!