This, my very first column, was originally printed in The Phoenix on July 8, 2005
Hi everyone! This is going to be a regular column (every two weeks for now) regarding disability issues in our community. I hope to keep the articles fun and light, but we will also have a chance to discuss some serious topics as well.Before I go much further, I suppose I should list my "qualifications" to write this column. Well, I"m disabled, physically challenged, whatever the correct political term is nowadays. I have Osteogenesis Imperfecta or brittle bones. As a child, I broke literally hundreds of bones. It"s a very rare, genetic condition. Odds are 1 in 20 million have the condition. I am one- so I suppose I"ma pretty rare breed.
It"s hard to tell how many people actually have OI, because most victims of OI die when they are children. The average lifespan of someone with OI is 25 years. I'm 48 now, so I"ve beaten the odds for a good 23 years now.
Here is a simple way of explaining what OI is: OI is caused by a defective gene, which tells the body, "OK , let"s not give this guy any calcium for his bones, or if we gotta give him some, let"s make sure it"s very poor quality." Hence the fractures.
I think I"ve broken just about every bone in my body, but the fractures have mainly focused on my legs. So, as a child, it was a constant routine- in one plaster cast, out again, in again. Half of my life was spent in hospitals, which became my second home, but I was born and raised in Phoenixville, which is still my home.
I broke in every way you can imagine- just by sneezing, coughing, turning over, while sleeping-you name it, other than falling.
Needless to say, it led to a rather interesting childhood, one which I've detailed in my book "Those are the Breaks." I wrote the book, not only to enlighten others on OI, but also to thank special people in my life, especially family and friends- the unsung heroes- and to show that no matter what, one can overcome certain challenges we all face in life and achieve success, if only you don't give up hope.
Anyway, now I get around in a sleek, black wheelchair, going everywhere 100 MPH. I'm a social worker at the Montgomery County Geriatric Center, now known as Parkhouse. I've been a social worker for close to 20 years already, graduating from West Chester University, so I've been on both sides of the fence. I know what it's like to be a caregiver, to give back to people who need help. I've also known what it is like to be at the other end of the stick, someone who needs help, someone so dependent. I couldn't get out of bed or even get a drink of water on my own.
I think being on both sides of the fence has helped me, not only in my career, but overall in life. It's helped me appreciate the good times, as well as being empathetic to those who are in need.
So, when we talk about disability issues, I don't speak for an entire group. Far from it- I want to be able to shed light on issues regarding disabilities, and yet show that we are all different, but similar, in so many ways. So my viewpoint in future columns are strictly my own, not of this newspaper, nor can I speak for others with a disability. Who am I to speak for someone else? I can only relate to my perspective of going through life whiile sitting down.
Everyone has their own story. I simply took the time to write mine down in a book, hopefully to inspire others, able-bodied and disabled alike. So, you don't have to be disabled to read my book, nor do you have to be disabled to read this monthly column. Yes, I hope some items do benefit the disabled, things they can relate to, tips which may make life a little easier, but I really bodied people share in this column. In that way, the column will serve it's purpose- to hopefully bring the subject of disabilities to light and not hide those issues away, to be ignored.
The purpose of this column will be merely to enlightnen,inform and educate, to share ideas, feelings and thoughts.
I do have some issues I pan to write about in time, but I'm really counting on you, the reader, to help me with this column. If you have any questions, comments or suggestions for future topics, please feel free to contact me or the newspaper.
I don't claim to know all the answers. Perhaps we can learn from each other. A good social worker is also a good listener, so not only do I hope to share some experiences and thoughts about disabilities, I hope to listen to you as well. Hopefully we can make this column helpful to everyone together.
i'm recuperating from a cracked hip. Did it in my sleep a few weeks ago. When I told the doctor how this happened, he joked, "You must have some pretty wild dreams!" I'm hoping it was a fluke thing, that I haven't come full cycle and start fracturing again, as when I was a kid.
I'm older now, so it takes longer to heal. Ironically, I had so many fractures as a child, I sort of got used to being in a cast. I knew no other lifestyle.
Now, after luckily not fracturing for over 20 or so years, I've learned how to transfer. I've learned how to cope with the aftermath of my disease. Now this latest fracture is like a re-learning experience for me. It is scary, not knowing if this is a sign of things to come.
But as always, I've taken life one day at a time and made the most out of each day, because we just never know what will happen down the road.
One topic I wanted to touch on before I end this first column is visiting, because I'm going through that stage now with the newly broken hip.
Many people have asked me over the years, from my experience of being both a patient and a social worker, about visiting someone who is sick. "What do I say? How long should I visit? Do I need to take anything? What should I talk about? Things like that.
My feeling is just to use common sense when visiting someone who is ill. You don't need to bring Aunt Mary candy or flowers. Maybe Aunt Mary isn't allowed to have candy, or flowers are too expensive.
My pint is, you would be surprised how much your visit alone means to someone who is laid-up or confined or simply lonely. It show that you haven't been forgotten, that you are in someone's thoughts and prayers. A simple get-well card or a cheery hello for a few moments can mean so much. It breaks up the day. And just the fact that you've taken the time in today's hectic, busy world means so much.
You don't need to stay any specific amount of time. Use common sense. When you see the conversation dragging, or if the patient seems tired, leave. You can always visit again. Some people who are sick don't want visitors; they want to rest, and many don't want to be seen in their current state. So it's important to put yourself in their shoes- a phrase we will be using a lot in the future.
A visit is always nice, but when you need to use the bathroom, and are afraid to do so, after an hour or so, then you may find the patient saying, "I appreciate the visit, but I'm glad they left!"
As with anything, just use common sense, and try to stay upbeat, encouraging and positive. When you can't visit in person, a phone call is also nice, but again remember, the patient may be sleeping, or may have other company.
The bottom line is, when it comes to visiting, always think quality over quantity. A short visit that is truly a heartfelt visit means much more than a longer visit that may not be satisfying for everyone.
Well, I hope you've enjoyed my first column. Since I wrote my book, and now have been asked to do this column, I have a newfound respect for people who write professionally for a living. It's a lot of hard work, and I admire writers greatly.
You'll find my articles to be simple, nothing worthy of Pultizer Prize material, certainly no "War and Peace" type of literature. But as long as we can ge tour point across in a hopefully humorous way, then this column will be worthwhile to write and to read every month.
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