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to tell them I have a new blog and also to visit their blogs but I wasn't able to find any that weren't being outdated.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!

So?!

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:


So?!?

~ 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.

~ 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)


Symptoms
: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
:Gigantism
: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
:Acromegaly
:Adrenal abnormalities
:Gigantism
:Hyperparathyroidism ~ the bones turn soft & become deformed, basically MAS!
:Hyperthyroidism
:Hypophosphatemia
: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:
:Blindness
:Cosmetic problems from bone abnormalities
:Deafness
: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.

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....