Tuesday, December 13, 2011

~ Keep Smiling.... ~

My absence from this blog is beginning to get embarrassing now! lol I was excited to start this blog and, among other things, find, communicate and supporting other people including individuals. I'm still planning on doing that with this blog. It's been a difficult Fall and early Winter. I've been sick several times (pneumonia now) and I had some family problems that needed attention but I've mostly been dealing with the effects of depression. The medication I was taking seems to have run its course. It took me a little while to realize what I was feeling. I don't like dealing with depression, it irritates me that I even have it. It's silly of me to feel this way because I'm totally supportive and understanding of other people I know coping with depression. But I tend to have very high expectations of myself which I can't often reach so I tend to be disappointed with myself frequently. How stupid is that?! lol I get annoyed with myself because, try as I might, I cannot conquer it on my own with meditation or the little bit of exercise I can do which probably isn't the kind that helps alleviate depression.. Some experts say that individuals with chronic pain often struggle with depression. Possibly that's why I have it. But I think that it also runs on my mother's side of the family explains, at least partly why I have it. No one in my mother's family has bothered to get some help - they'd rather go to bed for 5 days and pull the covers over their heads! Oy. What I think bothers me the most about being depressed is it often makes it difficult for me to get things done. It helps that I know the impact feeling depressed can have on me so I can try to counteract it.

The people I really admire are the people who are disabled or ill with some disease or other and yet they still appreciate life and look on the bright side of things. Everybody has bad days here and there but there are many people I've spoken to who appreciate their life and look forward to each day despite coping with health issues, chronic pain or a debilitating disease. There was a time when I looked at life this way, too. It seems, although, that as I've gotten older, things that happened during my childhood or when I was a little bit older are gnawing at me and upsetting me. It's as if the reality of life then has come to roost...but why now, I wonder? It's over and done with, there's nothing to be done about it now. It makes no sense to let things that happened in my family when I was much younger effect me now. Sure it might stink, maybe it's unfair but it is what it is. And that's also why having this depression bothers me...because I know life is what you make it and I saw many people I was related to make their life pretty miserable even while they had no major worries! I don't want to be like that. I like life and I enjoy people. But I've pulled away from everyone in my life in the last few years because of doubts about me, depression and insecurities over being disabled and ill. I'm trying to change that now. I really do believe, despite how I feel on any given day, in trying to make everyday the best. It isn't always as easy but I'm going to keep trying!!

Have a great day! And smile :o) !

Friday, November 4, 2011

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

After too long an absence....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!

Friday, August 19, 2011

Amazing Gracie, the Two-Legged Kitten!!

I read this brief article about Gracie, the Two-Legged Kitten on Beliefnet.com/goodnews. I think Gracie is courageous, adorable, inspiring and fantastic! And this article speaks the truth loud and clear! This amazing disabled Kitten is making life work for her in a beautiful way!

Everything in the media emphasizes the strive for perfection. Do you have the perfect car? The perfect husband? The perfect body? Gracie the kitten, short for her full name “Amazing Grace,” is anything but perfect in the eyes of the world. She was born without front legs. But in her own mind, she IS perfect. She lives a perfect life and enjoys a perfect love with her owner. She’s learned to stand like a kangaroo and hop like a bunny, her perfect way to get around. The lesson from Gracie is that it’s up to us to define perfection. What a great lesson from a sweet little animal.

Go here to read more: http://blog.beliefnet.com/goodnews/2011/06/amazing-grace-the-two-legged-kitten.html#ixzz1VUR2gqYD

Tuesday, August 16, 2011

~ Finding Direction; People Who've Inspired Me....~

I'm still trying to figure out where I'm going and what I'm doing with this blog. I was thinking over the weekend that maybe it's kind of silly to limit this blog which is supposedly about me and life, to my disability and disability-related issues. Of course being disabled will be a big part of it, but it's not all my life is about. I was talking to a friend about this blog when this idea occurred to me. I've been ashamed, uncomfortable embarrassed...something about being disabled for too long. I want to change that. But I don't want it to seem as if that's all that I am either. Because I have difficulty getting around, deal with a lot of pain everyday and need oxygen, I need to stick close to home. But that doesn't mean I'm not busy or don't do anything. When I stopped working people asked me for a long time. "What do you do all day?" "Aren't you bored out of your mind?". Those questions made me feel bad. I'm not sure why. Maybe because they made it sound like I had chosen to stop working. Being so limited and at home so much has been difficult for me to deal with primarily because my job was so important to me and I loved it..

I've had MAS my entire life but until I retired from work on disability I was pretty active.I pushed myself, too much according to my doctor. I was also exhausted all the time. Sometimes I felt like my mind was fogged up, literally. I didn't know, at the time, that such fatigue was part of MAS. There are days when I feel down and depressed, restless. Some of this could be from the chronic pain and the MAS. It's a bit of a vicious circle, though. Feeling this way then makes me feel selfish and ashamed, too. There are people across the world living much more difficult lives than I do. They struggle everyday with a smile and do what they have to do. Sometimes I find it hard, though, to focus, to keep in mind the lives of people I don't personally know or haven't met. But I often think about other people I met, mostly children since I was a child, in the hospital when I was having surgery years ago. While growing up, I usually had one or two surgeries a year. In those days, I stayed in the hospital for 2 - 4 weeks after the surgery, recuperating, before my doctor would discharge me. He worked out of Columbia-Presbyterian Hospital, a huge teaching hospital on the Upper West Side of NYC near Harlem. Patients of all races and nationalities, from one end of the financial spectrum to the other were treated at Columbia-Presbyterian Some of the kids I met back then were very different than me and some of them I'll never forget..

The first roommate I can remember pretty well was a 12-year old African-American girl, Lydia. Her mother was a sweet, soft-spoken women, a single mom with several children younger than Lydia at home. She worked full-time long hours or 2 jobs, I'm not sure which, so she wasn't able to visit Lydia very often. My mom treated Lydia like her own child when her mom couldn't be there. Whatever food or treats mom brought me when she arrived everyday at 1p.m., she brought for Lydia, too, My dad did the same. Lydia loved the nights my dad visited because he brought each of us bags of penny candy, every kind imaginable! The nurses yelled at my dad (mostly in a joking/teasing way) because as far as they were concerned, the last thing Lydia needed was a sugar high! Lydia had some kind of hip dysplasia. She'd had several surgeries with more to come. But that didn't keep her down. In fact that was the nurses problem - they couldn't get Lydia to stay in bed! Every time they turned their back, she was up and hopping down the hall!

Lydia would hop down the hall as fast as she possibly could and disappear! If she passed an open elevator, she'd hop on it, an open door, she go through it... The nurses couldn't keep up with her! She investigated rooms, corridors, rode the elevator...she introduced herself to patients, visitors, doctors, nurses, x-ray techs, orderlies, flower and mail delivery people, everybody! She was always telling jokes, she loved to tell jokes! She would eventually turn up laughing sheepishly or the nurses would find her or they'd get a call from another floor saying they had Lydia and she was telling jokes to everyone! The nurses would make her come back in a wheelchair if they had to go get her...Lydia hated the wheelchair and would bolt the minute she had the chance! The nurses tried to get mad and scold her but Lydia was so cute, charming and funny and she would make them laugh with some antics or stories or more of her jokes. Sometimes, if the nurses were too busy to pay attention to Lydia or Lydia had been going crazy and hopping around all day, they would tell her they were going to have to put her in restraints. Lydia was smart, she would get back in bed, then...and wait because she knew another shift was coming on in a little while! Lydia always came to tell me about her adventures!

Lydia had some bad days, though, where she was sad and down. It usually happened when she woke with bad pain in her leg, maybe the physical therapy wouldn't go well that day, then the feelings she had about missing her brothers and sisters, worrying about how they were managing, concern about her mother would overwhelm her. As the oldest of 5 kids, Lydia was responsible for them when her mom was at work. Her mom worked long hours so Lydia had to step in and be a mini-parent before school and after, as well. What was so remarkable about Lydia is she was happy despite how difficult her life was. Most often, when Lydia had a bad day in the hospital, by afternoon glimpses of the happy Lydia would show and by dinner she was up to her usual craziness!

There were other problems in Lydia's home life that my mother didn't want me to know about because she felt I was too young....I was just 10. And today I don't know all the details, I just know what I heard but didn't understand all those years ago. A social worker in the hospital spoke to my mom about Lydia since my mother was spending a lot of time with her. Lydia's father abandoned the family under bad circumstances (abuse and drugs of some sort, the police were involved) and left the family with nothing. Apparently this was very hard on Lydia and she sometimes acted out as a result, which seems understandable to me. But she always took care of her siblings and watched out for them.

I was only 10-years old when I met Lydia and spent more than a week with her as roommates in the hospital. Although I didn't know her entire story/history, what I did know deeply affected me and was the first time I understood that not all kids grew up as fortunate as I did. That life was tough and sometimes very unpleasant for some children and their families.

My life and Lydia's life were completely and totally different. My mother was a stay-at-home mom, my dad commuted into the city everyday for his job, my parents joined the country club across the street, ostensibly for me to use the pool which I did, but, of course, my family used all of the other amenities available there - tennis, golf, racquet ball etc, we took yearly vacation to Nantucket. I invited Lydia to come over and to stay with us not understanding how difficult that might be for Lydia.

I think about her often now and wonder how she is, what happened to her and her family. I hope good things happened for Lydia and her family. I think there are many children who grow up in circumstances similar to Lydia and her siblings. I wish that wasn't so but it certainly gives me a different perspective on my life and a reason to appreciate what I have and to do better. It's also why I hope I can be a source of support and help to other disabled people, young old, somewhere in between and their families!

I have stories of other people I met during my hospital stays and I will be sharing them here in future posts...

Tuesday, August 9, 2011

~ The Ups and Downs of Life! ~

I haven't written for several days. I told myself I wouldn't be concerned if I didn't have anyone commenting or any visitors or followers for a long time. I told myself not to expect anyone for approx. the first 6 months, so don't worry about it. But after many days of blogging and a few comments but no followers I became self-conscious. I think that was only part of it or what actually happened is the self-conscious feelings I already had became exaggerated and the feelings of doubt overwhelmed me: why am I doing this? People are going to think I'm weird/pathetic, I am pathetic, do I really want to tell people I'm disabled? Blah, blah, blah! Oy vey! After taking several deep breaths and thinking for a while, I remembered and realized that I wanted to do this blog for me, for all the times I felt ashamed, embarrassed, less than because I'm disabled...I know now that I'm none of those things are true or have anything to do with being disabled. It's taken me a long, long time to accept that it's just fine that I'm disabled, that I'm a good person and being disabled doesn't lessen who I am. I blamed by bones for a long time, I hated my legs for many years. One day I realized how absolutely ridiculous that was! And I saw that my legs despite being riddled with a bone disease, worked better than expected. It was a good realization as well as a sad one because if I couldn't take out my sadness and pain on my legs, what to do with it?! Writing helps. I also wanted to create and post regularly on this blog for other disabled people especially those who struggle in life and find it tough going some days. I understand that some days are very difficult when you're disabled and you cannot help but be angry, sad, morose, despairing, negative and so on. I understand that and it's okay so long as you and other people know being disabled doesn't make anybody less of a person no matter how many job rejections you've experienced because you're disabled, no matter how many people have condescended to you because you're disabled and no matter how many people haven't treated you the way you deserve to be treated.

So many things seemed so much easier when I was a kid, especially friendships and connecting with people. I think some of that is because as the years have passed, my health issues have increased or worsened. Chronic pain appeared and settled in for the duration, fatigue, too, that some days feels like a brain fog - it's almost as if I have difficulty thinking, it's very strange. Feeling like that makes it difficult to go out with friends especially to a crowded bar where people will be drinking...a lot! Friends had when I was in my '20s didn't understand why I wasn't always up for that kind of social event. Generally I preferred quieter outings anyway. I often wonder what other disabled individuals who are young adults experience in terms of friendship, going out with friends, how do they handle it?! Even now it's difficult since I'm not working so I don't have friendships that grow out of a work environment and many women my age are mothers so when they aren't working, they're caring for their children. Children is a major issue for me. I've always loved kids from the newborn infant stage to toddlers, to grade school age and up.... For some reason I always though I would have kids, if not my own then through adoption. It took me a long tine to acknowledge that not only was I unable to have my own children but I couldn't care for any children on my own. That hit me like a ton of bricks. It still causes major pain in my chest when I think about it. People offer throwaway sentences like: "You have so much freedom", "You can sleep as much as you want", and my all time favorite: "You're not responsible to anyone, you can do whatever you want"...ummmmm...actually, No I can't! I know they mean well but those platitudes underline how little they understand. I know they're trying to help. I think what I'm going to do is get involved in some volunteer/charitable work with kids If I can. Hopefully I'll find something I can do!

Today's post is a bit of a downer or just realistic but I'm sorry it's not more fun and entertaining. I promise tomorrow's will be much better, more upbeat... This is life, some days are good, some days - not so good!

Thursday, August 4, 2011


This morning I was reading an article by Martha Beck. I discovered Martha Beck in Oprah's magazine, O. I think Martha is extremely wise, funny, kind and gives great advice. I haven't been reading much by her lately but this article is about self-consciousness, something many women are familiar with. The article talks about getting hung up on social judgments when, most of the time, nobody is really paying attention to you. Many of us are worried that no matter what we wear, people are going to gossip about us, point out flaws, make us feel stupid and embarrassed. Very often, most of the people we encounter in a day won't remember they saw us let along what we were wearing. If you attend a function or a party, depending on how well you know the people, the numbers change a little but not much. I think most often we are getting half the attention we think we are.(if that much!)

I get very self-conscious over my appearance because the MAS has given me severe scoliosis which despite surgery and a rod in my back, my spine is still pretty curved. Both my hips bow out but in different ways and my lower legs are scarred, bowed in different places and not too pretty. I get stared at a lot when I go out, even if I'm wearing pants. When I was 13 I stopped wearing shorts for this reason...and my legs were better then!

Now I wonder why did I do that? People stare whether I wear long pants, short-shorts, a bikini or a snow suit! lolol I may get more stares in a bikini! but they're stares...and they're not because I look like Cindy Crawford or Cameron Diaz. Maybe it's old age, maybe I'm sick of people, maybe I prefer to be comfortable...but today I say, go ahead and stare if you want to...maybe I make people feel better about themselves.

I'm going to be honest here. I don't feel this way everyday. I have plenty of days when the idea of going outside and dealing with people's stares makes me cringe and I can't face it. Fortunately, those days are fewer and fewer. I do sometimes wonder what advice Martha Beck would give me on those self-conscious days. And I do wonder why people stare at me so much and so blatantly.

Why do we stare at strangers, people we don't know. I don't mean looking briefly at someone with a 3-foot high orange mohawk but staring bug-eyed at a woman with more make-up that you would wear and tight, animal-print leggings. Really, so what? I guess it's human nature.

If you catch someone staring at you, I found it's very effective to say hi and smile brightly at them. If they continue I often ask if I can help them with anything! It's better than when I was 5 and 6 and would stick my tongue out at people who stared at me!

My favorite piece of advice Martha Beck gives when a friend says someone is staring at her or she's afraid people will talk about her:


Wednesday, August 3, 2011

~ Inspiring People who are Disabled ~

I've been thinking for a long time about doing a blog about being disabled and anything and everything that goes along with that. I could never decide if it was something people would be interested in or that I could get attention or support for. Recently I've realized that's not the real reason to do a blog but to support and hopefully get attention to disabled people as a group, Still I couldn't decided. And then a few weeks ago, I saw an episode of Extreme Makeover: Home Edition, the reality show hosted by Ty Pennington. The show was in Georgia with the Sharrock Family, Michael, Cindy and 9-year old Patrick who has brittle bone disease or Osteogenesis imperfecta (OI). Patrick has a pretty severe case of it: Patrick broke both his legs in the womb. Although he can walk, it's difficult and he cannot go fast or far so wheels are better. Patrick is very small for his age because like MAS, OI affects a person's stature and he can very easily break a bone or several. The really remarkable thing about Patrick, though, was his smile and his spirit both are big and bright! He is a very happy child and is as active as he's allowed to be. Right now he's home-schooled but his mom and dad are hoping to send him to school in the future.

Patrick and his parents really impressed me while I was showing the show. Children like Patrick deserve a future to look forward to and a society that welcomes them and lets them in. That's what helped me decide to start this blog. Right now, getting a basic job for a disabled person is difficult and if you don't have family to rely on or money somehow, there isn't a lot of help out there for disabled people to live so you're probably going to have to work. Most people want to work anyway, it feels good to be able to support yourself and make your own money. There are inspiring people with disabilities to look to for courage and hope.

Patrick did a public service announcement during the show. It was about how he's just a regular kid. There were some of other kids in the announcement who had various illnesses and disease and one child who didn't have anything. They were all happy and smiling and I thought how great it would be to know they were able to keep the smiling throughout their lives!

The people behind Extreme Makeover: Home Edition learned that Patrick was a fan of Atticus Shaffer who plays the youngest son on the sitcom The Middle. What I didn't know is that Atticus also has a form of OI! I think it's fantastic that he's an actor on a prime time TV show and he has a rare disease.

When I was growing up there were very few disabled individuals performing in acting roles on TV or in the movies. It's fantastic to see more and more people with disabilities getting acting jobs for which they are completely qualified. ***Kevin McHale who plays Artie on Glee is fantastic and now only does he act but he sings and dances, too! And Zach Anner is a stand-up comedian with cerebral palsy who has a travel show on Oprah's new OWN network.

These individuals with disabilities have some extra special talents and are a fantastic source of inspiration. I used to know a guy in a wheelchair who wanted to be an actor or a musician but just complained there were no roles or spots for disabled people or any available roles went to able-bodied people. I hope he's aware that, at lease now that's no longer the case.

My hope is that these individuals, simply by doing what they love, will impress upon other people that disability really is just a state of mind and, when given the opportunity, disabled people can excel at whatever they want to do.

*** It was just brought to my attention by Emma from the U.K. that the actor, Kevin McHale who plays Artie on Glee is NOT disabled.  Before I wrote ths post, I went to the Fox Network website for Glee and read Kevin McHale's cast page.  It's written as if he is Artie the character he plays and includes a story about how he became disabled, how he feels about it and how he has managed to be a dancer using his wheelchair.  No where on the page does it say the actor is not disabled. I misunderstood what I read.  I really appreciate Emma bringing this to my attention.  One of my greates annoyances is the use of able-bodied actors in  disabled character roles when there is a talented disabled actor available for the role, which there almost always is.  Hollywood, the film and TV industry and more has long been guilty of failing to hire disabled actors for roles and other positions.

Saturday, July 30, 2011

~ Friendships when you're Disabled ~

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.      ~ Henri Nouwen

I think it's important for children to have friends while growing up and to be encouraged to develop friendships. I think this is especially true for disabled children for whom having some disabled friends is vital. I was an outgoing, friendly and gregarious little girl and I made friends easily. My mom had a lot of friends but for reasons I've never learned, she kept her friends at a distance. I think it had to do with self-esteem issues my mom had and feeling self-conscious. My mom had no reason to be self-conscious or doubt herself, her intelligence, her abilities but things don't work out the way they should. Mom never understood my love of friends and why or how I had so many. The funny thing is, she'd recognize me more today in that respect since I've become similar to how she always was with friends...distant. While growing up, I didn't have any friends or acquaintances who were disabled. Mom, unfortunately, didn't want me to mix with anyone disabled. In fact, when I wasn't in the hospital having surgery, recovering from surgery or dealing with some other health issue related to MAS, I was treated as if I wasn't disabled by my family. Disabled friends never would have fit in.

I'm not angry or upset with my mom for the way I was raised. I had a great childhood overall. I know mom did what she thought was right, what she thought was best for me and would make me strong, resilient and a fighter. I often think how frightening it must have been for mom when, at 29-years old, she was told her 4-year old daughter had a rare disease the doctors knew little about. Same for my dad. My relationship with my mother was complex, something I'm sure many women can relate to! Some day I might write about it at length, but right now I'll just say a little bit to make things more clear. Part of the problem was my mom hated that I was disabled for me but also for her. My disability didn't fit her image of her children and her life. I wasn't perfect. Mom told me this when I was older. It hurt to hear but it explained why she favored my sister who was a very difficult child to like and why, no matter how well-behaved I was, I couldn't seem to do anything quite right. I know my mother loved me she just didn't like my disability. Raising me to believe I wasn't different from other people was good in some ways. I thought I could do almost anything anybody else could just sometimes in a different way. But in some ways things were more difficult for me and very confusing.

That's also where having friends who are also disabled could have helped me. I think disabled friends would have made me feel more like I fit in somewhere and didn't have to work so hard to make everything in my life okay. Chances are someone disabled would have a little better understanding of issues like mine than someone else. I believe, fervently, that, had I had some disabled friends from a young age, I would have grown up with much stronger feelings of self-worth. I've struggled quite a bit, as an adult, to love myself. Growing up disabled is difficult enough without having to figure out where you belong and if you belong in this life. I think disabled people who have never asked "why me?" or have never had issues with being disabled, if they're being 100% honest, are very fortunate. It's not my experience as a disabled person. That's partly why I started this blog. I hope that I can help and support even one disabled person and let them know they're not alone and they're beautiful!

I think having some disabled friends would have helped me to feel better about myself and about some of the things in my life, as I touched on above. I never felt like I had anyone who understood how frustrating and sad some things made me feel: not being able to run with other kids or play on the playground or join a sports team or play tag or roller-skate at my friends birthday party... I can still feel how painful it was for me when my sister and my best friend in high school went off to play tennis. I wasn't upset with them, I'm was the one who suggested they play together since they were both looking for a partner, it just hurt badly that I couldn't join them. (I' actually tried to play tennis with my mom and dad once, it just
wasn't feasible!). A disabled friend would have given me a shared sense of camaraderie and a friend who wanted to do the things I could do and wasn't doing them because I couldn't do other things or worse, because she was told by her mother to play with me. There's an instant understanding and familiarity with another disabled person. I've lost friends because I'm disabled, had difficulty making friends because I'm disabled, had difficulty forming tight bonds with people because I'm disabled and I've had people try to be my friend because they pity me. I've also met, had and have wonderful friends. Still, I really believe that, especially as a child and teenager, having some disabled friends is important and more comfortable, especially when life is chaotic and confusing as it often is.

I hope to encourage parents with disabled children to, at least, make sure their children are around other disabled children sometimes. I've found that because of my disability some people are awkward and uncomfortable around me. They don't completely understand or know me and so they cannot completely relate to me. That can make good friendships difficult. When I was in grade school, for several years roller-skating and ice-skating parties were popular birthday celebrations. Even my best friends at the time didn't invite me to their parties because I couldn't ice-skate or roller-skate. They didn't give me the option of going to their party, something I would have liked. There's more to one of those parties than the activity. And if your best friends don't invite you, what do you think the other kids are going to do? Even in college where I had a fantastic time and great friends, when my friends were planning ski trips, as they did every winter, they assumed I wouldn't want to go. No one bothered to ask me but, unlike when I was a child and didn't say anything to my friends, just simply cried in my room, I told my friends how I felt. They're were still those who didn't understand, but many did.

When I was on my own after college and life was more difficult, I had more responsibilities, I decided to see if I could find any other people with MAS. I was very fortunate in that after age 17, MAS was almost dormant in my body for many years! My legs stayed strong so long as I used my crutches and a car for distances and didn't bow or break and I had little to no pain. Late in my freshman year, I broke my arm which was completely unexpected since I'd never had problems with my arms. Other than that the MAS didn't bother me for years.

Not long after college just when I started law school, I began having pain and bowing in one of my lower leg bones near the ankle. I knew it meant trouble and put off seeing my doctor for a while. It made me think about MAS again, growing up with it and what it could mean for my future. I researched people with MAS and discovered there weren't that many and there was no place were a majority of them could be found because there were virtually no organizations for people with MAS. And then I came across The MAGIC Foundation, an organization for the families of children "afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth". MAS was one of the disease MAGIC covered. At the time, the MAS department was headed by a wonderful woman, Annie Miller, whose daughter had MAS. Annie helped me get in touch with some other people with MAS. It was fantastic to communicate with other people who had similar health concerns as I did and who could relate to many of my experiences. Shortly after this, Steve, the dad of a young girl diagnosed with MAS who was unable to find a good website with comprehensive info on the syndrome, started a support group on-line for people with MAS and FD and their families. This eventually led to an organization for people with MAS and FD, the Fibrous Dysplasia Foundation, which I will be posting about in the near future.

Tuesday, July 26, 2011

~ McCune-Albright Syndrome and Fibrous Dysplasia ~

I was looking over my posts so far on this blog and I realized if this is a blog about me and about my disability and being disabled, I should probably at least mention my disability!

I was born with McCune-Albright Syndrome (MAS) which is a rare disease that affects the bones, the endocrine system and the color (pigmentation) of the skin. It's also possible that various other systems in the body are affected as well. There hasn't been all that much research into this disease so it's difficult to determine all the areas of the body it might impact. MAS is a genetic but not inherited disease, which is unusual, and it's caused by mutations (new change) in the GNAS1 gene - the mutation to the DNA that occurs in the womb while the baby is developing.
The abnormal gene is present in a fraction, but not all, of the cells according to the available info. I have this abnormal gene present in many of my cells so that if you were to look at a bone scan of me, head to toe, many of my bones would look similar to swiss cheese ~ it looks as if most of my bones have actual holes which is the areas where there isn't solid bone. This is a very simplistic idea but it gives you a basic understanding of the disease.
MAS is a little confusing at first. It's called a syndrome, not a disease, meaning a variety of symptoms & conditions fall under its heading

The bone aspect of MAS is related to Fibrous Dysplasia (FD) a bone disease that destroys and replaces normal bone with fibrous bone tissue. One or more bones can be affected - in MAS more than one bone is affected.

The symptoms of Fibrous Dysplasia include:
:Bone pain
:Bone sores (lesions)
:Difficulty walking
:Endocrine gland problems
:Fractures or bone deformities (rare)
:Unusual skin color (pigmentation)

There's no cure for FD, doctors simply treat bone fractures and deformities as appropriate.

MAS includes FD and Symptoms & Signs:
(See Medline Plus)

:The hallmark symptom of McCune-Albright syndrome is premature puberty in girls. Menstrual periods may begin in early childhood, long before the breasts or pubic hair develop (which normally occur first). Puberty and menstrual bleeding may begin as early as 4 - 6 months in girls ~ it actually can begin earlier
:Early sexual development may also occur in boys, but it is not as common as it is in girls.
:Other symptoms include:
:Bone fractures
:Deformities of the bones in the face
:Irregular, large patchy café-au-lait spots, especially on the back

Signs and tests - why I think other symptoms in the body are impacted by MAS
A physical examination may show signs of:
:Abnormal bone growth in the skull
:Abnormal heart rhythms
:Adrenal abnormalities
:Hyperparathyroidism ~ the bones turn soft & become deformed, basically MAS!
:Large café-au-lait spots on the skin
:Liver disease, jaundice, fatty liver
:Ovarian cysts
:Pituitary or thyroid tumors
:Scar-like tissue in the bone (fibrous dysplasia)

There's no specific treatment for MAS. My bones, particularly the bones in my legs broke while I was growing up or bowed on their way to breaking and so I had many surgeries between the ages of 4 and 16 including scoliosis surgery. The surgeries stopped for a little while and then in my late 20s and early 30s I need some surgeries. I have had approximately 35 surgeries.

I developed asthma when I was 8. My doctors think it has dissipated quite a bit but, because my bones are weak and I have scoliosis, the cavity in which my lungs sit is compromised. I have what they call Restrictive Lung Disease so I still have breathing problems. In 2003 I was diagnosed with Pulmonary Hypertension. The doctors don't think it's primary or secondary pulmonary hypertension but a hybrid possibly due to my other health problems and the medications I take. Around 1998 I began experiencing chronic daily pain in my limbs and ribs. Today there are few places in my body, bone areas, that I don't have pain. I experience pain regularly in some areas and in others I get flare-ups on a daily basis. So everyday is a surprise, pain-wise!

The website I referenced above also includes a "Complications" category under which it lists:
:Cosmetic problems from bone abnormalities
:Osteitis fibrosa cystica
:Premature puberty
:Repeated broken bones
:Tumors of the bone (rare) ~ I'm not sure why it lists tumors of the bone as rare because if you have MAS tumors aren't rare ~ these tumors are not the same as those associated with cancer.

The Fibrous Dysplasia Foundation, Inc. is a terrific website that gives a great explanation of MAS and FD and provides articles, resources, advocacy info and more.

Sunday, July 24, 2011

A Surprising Realization...

I mentioned earlier that I grew up disabled. I had my first surgery at age 4 on my legs. I was in a body cast - a cast from my chest all the way down to both sets of toes - for 2 months. After that, I had 1 - 2 surgeries a year for the next 12 years, all on my legs except for scoliosis surgery when I was 13. I used a wheelchair, a walker, wore braces for a little while but most of the time I used crutches, the wooden kind that go under your arms. My mother encouraged me to get up on them as soon as the doctors said I could. I remember I used to get really irritated because I loved sweaters and the crutches wore out the armpits of all my sweaters! When I wasn't in the hospital or sitting in doctor's offices, my life was a normal as possible. My mother enrolled me in programs for things I could do such as art and music while my sister was horseback riding and playing tennis. I was never called disabled or handicapped and I never met any other disabled children. I never received any counseling and my mother forbid me speaking to any of the social workers or counselors who visited when I was in the hospital! I simply thought of myself as a girl with a rare bone disease.

The first time I really realized I was disabled and understood what that meant was in the Fall of 1990. I had graduated from college that past May. I moved into Manhattan and got an apartment with a friend from college and a job as a paralegal. I was struggling inside, though, something nobody else knew because I was raised to face the world with a smile and a positive attitude. But during my junior year of college my mother suffered a severe stroke completely altering her personality. I had a lot of issues with my mother but she was the rock in my life, the person who stood behind me and told me I could do whatever I wanted (within reason). I was floundering without her support and guidance. As a result, the apartment I was living in was a 2nd-floor walk-up in a brownstone. That meant several times a day, my crutches and I were climbing many flights of stairs. (with McCune-Albright Syndrome (MAS) the diseased bones are weaker than similar normal bones so a lot of wear and tear wasn't a good idea for me!).

On this particular day, when I left work in mid-town I decided to take the subway to my upper eastside apartment since the public bus crawled up 1st Avenue and took up to an hour to get me home. I knew the subway would have me home in about 20 minutes. There were two or more flights of stairs down into the subway but going down stairs with crutches is much easier than going up. So I took the stairs, pissed off a few people who wondered why there was a line to get down into the subway - that was my fault, the slow poke using 4 legs instead of 2 to get down the stairs! I got myself a seat in an air-conditioned subway car and within 20 minutes was getting up and off the subway having arrived at 96th Street.

I walked to the exit and looked up at the longest, steepest flight of stairs I'd seen in a long time. I let the other passengers go first and then I took a deep breath and started climbing. It wasn't fun. By the time I arrived at the top of the stairs, I was out of breath, panting, sweating profusely, my glasses sliding down my nose and, not only were my legs aching but my arms hurt which was unusual. I sat down on a nearby park bench to catch my breath and try to figure out what had just happened. It hit me hard and suddenly - though I think deep down I knew it but had never spoken it out loud - I was disabled. I sat there thinking about the word, thinking over my life, wondering what was wrong with me that I'd never realized this. I felt dismay one second elation the next thinking, wow, look how far I've made it and back to dismay again. I finally got up and began walking the several blocks to my apartment feeling different, more self-conscious, confused, unsure what to do with this realization...

Saturday, July 23, 2011

The DRA is now in NYC!

I came across the Disability Rights Activist(DRA) website yesterday. Last tear they opened an office in New York City. And this past week they announced that the MTA has agreed to install an elevator at the Dyckman Street Subway Station. If you don't live in or around NYC then you don't know that more than half of the subway stations don't have elevators. I've only used the subway a handful of times whenever I've been traveling around the NYC area because there are so few elevators I can very rarely go where I need to go using the subway system. It's a huge hassle. The decision came about as a result of litigation between the United Spinal Association represented by the DRA and the MTA (Metropolitan Transportation Authority and the New York City Transit Authority (NYCTA). I haven't read the case yet but I'd like to because I'm wondering if this means the MTA and the NYCTA won't put in any elevators unless they are forced to through litigation. That would stink but it wouldn't surprise me!

I was also interested in the posting on DRA's website that in May a federal court okayed a major class action lawsuit by New Yorkers who use wheelchairs challenging the Taxi & Limousine Commission's (TLC) refusal to provide accessible taxis to the tens of thousands of people who use wheelchairs in the city. The ruling affirms that state and federal disability laws apply to the TLC. I think the TLC felt that wheelchair users should have to pay more to take a taxi. I don't remember the particulars but I was very irritated when I heard about the taxi issue several months ago.

I'm wondering if I should tell the DRA about the movie theater that doesn't allow wheelchairs so I didn't get to see Black Swan on the big screen....

Thursday, July 21, 2011

Write if and when you find work...!

Senator Tom Harkin is a longtime champion of people with disabilities I read on his website. There's a lot of information about disability rights, improving the employment situation for disabled people and equal opportunity and self-sufficiency for people with disabilities on Harkin's website. We'll see if anything comes from it. Please don't misunderstand me, I'm glad he supports disabled people and wants to see the situation in all areas improve for people with disabilities. It just seems like this has been talked about for several years but there isn't a lot of change. And with the financial situation in this country going down the tubes...well, that's not going to help! Three years ago, I went to a group meeting for disabled women at The Hospital for Joint Diseases in Manhattan. It was an opportunity for disabled women to get together and talk. At that time, I was still able to get around on crutches. There were 4 other women there and they were all in wheelchairs and all about 5 -19 years older than me. All of those women were concerned about getting jobs and wanted to talk about employment. I couldn't totally relate to them because, at that time, I wasn't working or looking to work. But now I can totally relate to them and I feel badly about not being able to help them then or really understand their worries. Now I can understand them and I share the same concerns. I need to find some work now and I'm discovering that it's not that easy. It's been 9 years since I worked. I may be smart and personable but I'm in a wheelchair and wear oxygen...why wouldn't an employer want to hire an able-bodied woman instead of me?

It’s difficult to stay focused some days. I feel useless, embarrassed and ashamed sometimes. I especially feel this way when I call places about working and, despite the info on their website, the computer, they act like I'm nuts and tell me they aren't hiring. Yesterday I found a website that supposedly lists jobs with employers willing to hire disabled people. I went looking for listings in my area. There were quite a few for Starbucks. I thought about working there but couldn't picture myself trying to maneuver my wheelchair behind the counter, especially in a really busy Starbucks. I had visions of coffee and foam everywhere including all over me! So I pulled up the job requirements, a very long list. The first one said "Lots of standing, walking and moving about in small area". So much for that job. But in the rest of that long list were requirements that knocked out just about every disabled person. It seemed to be a case of saying you're willing to hire the disabled but then making the job unfriendly to them. Nice.

It's the same with social services. I call them periodically n the off chance I might get a better, more helpful answer one day. Usually, though, the person on the other end of the phone tells me I get a lot of money and sounds bored or annoyed talking to me. When I ask them how I’m supposed to pay my rent and support my self on $1,000 a month they just say “I don’t know”. I haven't found much in the way of resources for people in situations like mine. I wonder what other disabled individuals do. I see many websites that promote the independence of the disabled or "talk" about the independence of the disabled but there doesn't seem to be a lot of actual, tangible assistance to make independence a reality for people like me. I am not finished looking for assistance, making phone calls, writing letters etc. but so far it seems that to have adequate shelter, food, clothing etc. I have to be dependant on family which I don't have or married or independently wealthy?!! It's frustrating and humiliating. And, actually I have finished making I'll of the phone calls and sending all of the emails I can think of but once I finish, I start up again!

Any suggestions, ideas, stories?!

Tuesday, July 19, 2011

Hi and This is Me!

I'm Amy and I suppose if you read the title of my blog you know I'm disabled. It's not a new thing, I always have been...well, almost always. I was born with a rare bone and endocrine disease but I didn't really show up until I was about age 4. There were a couple of indication when I was younger but my mom ignored them! But my parents couldn't ignore when I started walking like a bow-legged cowboy! They figured they'd better find a doctor who could tell them what was going on with my bones. That turned out to be no easy feat! Although I was diagnosed relatively quickly with McCune-Albright Syndrome, finding a doctor close to home who was willing to try treating me was more difficult I'm told. It kind of weird since my family lived 40 minutes from NYC...seems to me if you cannot find a doctor to help you in all of Manhattan and surrounding areas, you've got a problem! My parents found a great doctor after searching for a year. Then the period of annual or bi-annual surgery began. When I wasn't having surgery my life was pretty normal because my mom didn't want to treat me like I was disabled at all. That was really cool for the most part, although there were some problems which I'll talk more about another time! I went to college which was fantastic and was even able to get my law degree. I had to have major surgery 5 days after the Bar Exam but, fortunately, I passed!

My first job out of law school was working as a prosecutor which I absolutely loved. But about 2.5 years into that job I started having problems with my bones bowing and chronic pain. After 3 years I left the prosecutor's office, reluctantly, for something less stressful: the department of social services where I especially liked the Child Protective Services work. But my bones and some other health systems (respiratory especially) didn't cooperate. By 2001 I'd "retired". I use a wheelchair now and I'm on oxygen 24/7.

I haven't handled not working very well. I've been depressed and had some other health problems, mainly asthma and pulmonary hypertension.. I always told myself I was going to get involved advocating for disabled people and speaking out about things like employment, access and insurance. I don't always feel that, as a disabled person, I'm taken seriously. I'm irritated with myself for taking such a long time to start talking. I've had a few run-ins with people lately who didn't treat me well because I was in a wheelchair...for instance, a movie theater wouldn't let me take my wheelchair in to see Black Swan! Rather than feel badly about myself, I was irritated....okay, I still felt a little badly about myself!

So that's what this blog is all about...being disabled and belonging in this world! I know there are a lot of people working to help make society a place where it's easier for anyone who is disabled in any way to fit in and get along. Please tell me about you, say what you think and please correct me if I've said something wrong!