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.
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