Tuesday, September 9, 2014

Sad news to report

Hello visitors. I am Scott, Amy's husband.  I've finally gotten up the energy to start going thru Amy's emails and noticed some recent posts to this blog.  I am sorry to report to everyone that Amy died on May 28, 2014 after 2 1/2 months of hospitalization.  I am sorry I haven't passed on this news sooner.  Amy's funeral depleted our savings and with her gone, my income has been reduced almost 50%.  To honor Amy's wishes, I am trying to raise funds to keep the cats we have rescued with me since I have to move.  As such I've established a Go Fund Me page and would appreciate it if you would visit and pass the word along.  Thank you to everyone who talked with Amy about her disability and shared their stories with her. 

Friday, May 25, 2012

Cautionary Tale of Adorable Baby Bear

This young and small bear cub was removed from the wild by a family who found him alone in the wilderness. It's entirely possible his mother was off getting food for him and he was waiting for her to return. If that's the case, my heart breaks for the bear mom. This is way experts trained in wild animals caution that they should be left alone in the wild. Anyway, the family who 'rescued' the bear cub planned to take care of him in their home. But, when they got him home, they realized they didn't know how to care for the little guy. Fortunately the family called animal authorities. The little bear cub is now being well-taken, and thriving, care of at the NEW Zoo in Northeastern Wisconsin.
To read the full story and see more photos: Adorable Baby Bear

Friday, May 11, 2012

It's Good to be Different!

I went grocery shopping by myself a few days ago. I don’t go out very often and seldom alone. I took my scooter because my arms aren’t up to pushing my wheelchair the 4 or 5 blocks to the store. I felt like I had a bright yellow bull’s eye or bright, multi-colored striped hair or something equally difficult for people to avoid gaping at because many people were staring hard at me. It bothered me a little bit but it didn’t anger me like this kind of behavior has in the past. Strangely, it made me feel very sad, sad and a little hurt, that people behave this way. At one point in my life, I would have seriously considered running them over! Lol

That experience it made me think about looking different, why people stare at some people and not others and what differences result in people gaping and staring at other people. This issue has always puzzled me because as children many of us are taught that different is good, being unique is something to celebrate. I’m a little different looking and I’m short but given the variety of people in our world even on my scooter or in my wheelchair, there’s nothing really remarkable about me worth staring at (I don’t think). What is it about physical disabilities that make some people stare slack-jawed?

I also thought about a group of human beings who are treated particularly bad by some people: Little People. Little People deal with people staring at them almost whenever they go out. In fact, some Little People report that not only are they stared at, but people take photos of them, without permission. That is just so rude, so utterably obnoxious! It would anger me so much I’d try to break the camera! Little People aren't disabled they're just smaller than the average person. Some Little People are disabled...so?! My mother told me this happened once when I was small. We were out shopping. I had long leg braces and was walking on crutches. According to my mom, 'some jackass’ came up to us and started snapping pictures of me. My pretty, kind, and reserved mom yelled and started running at the guy! I wish I remembered this incident! What nerve that man had! My mother used to get angry and upset just telling this story. But what's so captivating about being small and short?!

I don’t understand what’s so fascinating about being short or being little. I’m short, several inches under 5 feet. Big deal! The only remotely interesting thing about being short is, possibly, how Little People adapt to getting everyday tasks such as the dishes, laundry and cooking accomplished. For instance, I use pasta tongs to get boxes and cans off high shelves and love stepping stools. So?! This doesn’t explain the staring and picture taking out in public. If Little People are so fascinating because they're different, why aren’t other different people like obese people, people with bright flaming-red hair or people with piercing all over their face and head?

Little People weren’t helped by this extremely offensive and insensitive incident: A few months ago Rosie O’Donnell, in an interview with Chelsea Handler, announced that she ‘fears’ and has ‘anxiety’ around Little People. O’Donnell asked Handler if she would ”do a little person?”. Handler said no, saying “that would be child abuse“. A Little Person, Chuy, works on Handler’s show with her. She thinks that if not for her, Chuy would be unemployed and admitted, “I bite Chuy”. Chandler’s comments indicated she pities Little People. She fully supported O’Donnell’s fears and laughed with her. Rosie questioned how it’s possible for a Little Person to give birth to an average size person and wondered why the Little Person doesn’t die. I thought O’Donnell had children? Doesn’t she know how small babies are when born?!

O’Donnell and Handler’s comments are shockingly disrespectful of Little People, totally unprofessional, obnoxious, and hurtful. Handler’s treatment of Chuy are demeaning. Even worse, their comments suggest that it’s fine for their listeners and other people to fear, mock and tease Little People and treat them as less than human. It’s distressing and unbelievable. I’m sure considering their careers, O’Donnell and Handler are well-aware of the reality shows and talk shows featuring Little People and their concern and work helping the world understand that they are just human beings like the rest of us, who sometimes do things a little differently. And with a lot more decency and decorum than some people.

Chelsea Handler is known for bizarre comments and off-color remarks on her show in the name of comedy. But these things were said during an interview, not on her show. And there’s nothing funny about her comments or O’Donnell’s about Chuy or Little People. Are these two women so ignorant they’re unaware of how hurtful their remarks were? I don’t think so and the latter excuses them too easily. It’s more likely they didn’t care how their comments came across. O’Donnell’s comedic and talk-show careers have kept her in the public eye and on-camera for years, making any excuse for her behavior towards Little People wrong. But don‘t try to mock or belittle anything Rosie O‘Donnell believes in because she‘ll have your head on a platter. Oh yeah, Rosie’s apology, on twitter no less, was similarly irresponsible and unprofessional.

It’s saddens me that in this day and age, there are still people who think and behave like these two women...and they’re paid to be on camera and entertain. I don’t get it. (Phew!) I think it’s great to be different and unique, whether you choose it or are born that way. And I’m inspired by Little People. I think there’s a lot they can teach the world about life and living!

Saturday, May 5, 2012

Back again...Charmed, I'm sure!

I’m going to try getting this blog going again! I basically became over-whelmed in December when it felt like the entire focus of my blog was disability and illness. I don’t want to be a woman who identifies herself solely as disabled and ill since that’s not all that I am. Certainly I have insecurities and issues with being disabled and, even more, with being ill. While I was growing up, although I had a good and loving family, being disabled wasn’t seen by most of my family as a good or positive element of my life. I was taught not to embrace it but to distance myself from it as much as possible. I was taught that the ‘right’ kind of people wouldn’t like that I was disabled. I was also told there were many things I couldn’t do.

I have always wanted to speak out, scream even, against these kinds of beliefs and ideas. I’ve wanted to show people that, although I may be disabled and ill, I’m also much more than that: I’m intelligent, curious, interesting, fun, compassionate, occasionally quirky, I have a good sense of humor and more. I ‘d also like to help disabled and sick people struggling with similar anxieties and fears to conquer them. When I set this blog up, and started posting, it became a blog all about being disability and illness rather than a blog about the life of a woman who is disabled and ill. I began to worry about things such as, nobody is going to read this blog because I’m disabled, nobody wants to read about these kinds of issues and people tend to stay away from disabled and ill people, they don’t befriend the disabled and what did I think I could accomplish with this blog and so on. It was as if I became unable to blog about the rest of my life and how I filled my days. So I took a long break from this blog which barely got off the ground! I realize there are people who have issues about talking with, being around or spending time with people who have disabilities or are sick but there are plenty of people who don’t judge disability and illness. I sometimes wonder if I judge it in a way. If I do, I need to stop.

I’m going to try this blog one more time. It’s a work in progress so I’m not sure what each day will bring but this blog will be about my life. So I will talk about disability and illness to some degree, but also about books, cats, the flea market, music, movies, other people and issues and more. I’ll see how it goes, If you stop by, please say hello and tell me about yourself.

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