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...