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!