My niece, Chelsea is a beautiful, sweet girl. She is also a very sick young girl. She has a very rare disease called Lafora, a progressive, degenerative myoclonic epilepsy. Since being diagnosed almost four years ago, her life and the lives of everyone around her are forever changed.
Chelsea was an athlete. She was a soccer star, a gymnast and a dancer. Today she doesn’t take a step without someone holding on to her or she will fall down.
Chelsea was a scholar. She was an advanced student with a curious mind and a quick wit. Until recently, if she felt good enough to go to school, there was room for her in the Special Education classroom. That is not an option for her today. Her mind, her ability to think and understand has deteriorated greatly and quickly. She does not understand what is happening to her. Perhaps that is a blessing.
Chelsea’s disease is always fatal and life expectancy is usually 10 years after onset.. Today there is no treatment or medications available to slow the progression of her disease. Her time with us is limited, unless we find a cure.
Chelsea is but one of only a few hundred known cases worldwide. With so few known cases, little attention or money is given to find a cure or treatment for this terrible disease. But now that is changing.
Chelsea’s parent’s, my brother Howard and his extraordinary wife Linda, have founded “Chelsea’s Hope” (http://www.chelseashope.org/ ), to bring together the community of families from around the world, who live with this disease. Together, they have found the researchers working to cure this disease and are raising the money needed to fund this research. There are now trials for treatments being considered by the International Review Board. The treatments are not cures, but may extend the lives of these children until a cure can be found. Now there is hope.
Today more help is needed. The progress made in finding a cure is directly related to the amount of money we can raise to fund the research. The research is being done at UCLA, one of the world’s leading medical research facilities. You can read about the disease, the research, and make a donation by visiting Chelsea’s Hope at http://www.chelseashope.org/ . A treatment and cure are only possible with funding and help from our family, friends and anyone wanting to make a difference.
Please visit the website and read Chelsea’s parent’s story. To live as they live, to watch your child deteriorate as they do, is something that no parent should ever have to endure. Join us, help us to find a cure and let’s make sure that no else has to live with this devastating disease. Thank you.
Participate. Make a difference. Live a life that matters.
Sunday, October 26, 2008
Sunday, October 19, 2008
Wheelchair. The best seat in the house.
One of my great challenges in life, or possibly it is a gift, is the ability to see things from both sides. This is true with politics, entertainment and human behavior. This also includes what it is like to be in a wheelchair.
I am able to walk short distances using a walker. But if more walking is required or if I don’t know the lay of the land, I use the wheelchair. I am not ashamed or embarrassed by this. It is just a fact of life – my life.
Here are the bad parts of being in the chair:
● When I am in the wheelchair, the people I am with are usually standing behind me and can’t or don’t hear me talking. When I talk loud enough to be heard, they want to know why I am yelling!
● In public places, when they need to ‘park me for a second’, there always seems to be an available ‘spot’ next to the trash can. PEE-EW!
● When we go to restaurants, the host or hostess looks at me sitting in the wheelchair and then asks the person I am with “Does he want a regular chair?” ASK ME PLEASE! (Ironically, if I enter a restaurant using the walker, we always seem to get the table furthest away.)
These are all minor, readily surmountable issues. These are the things I have noticed when sitting in the chair. These are all issues that my family and I can usually laugh about.
There is one more behavioral issue that I notice. That issue is that the people I don’t know who see me in the wheelchair can usually be divided into two camps. They are:
1. People who seem particularly friendly towards me.
2. People that pretend to not see me or avoid me.
I always prefer the friendly faces. I suppose that if I am in a wheelchair, and don’t look homeless (I am pretty sure that I don't look homeless), I may appear harmless and easy to approach, so people do. I get more smiles and hellos when I am in the chair than I do when I am not. I would like to think that I am a very friendly and approachable guy, and so I love the friendly faces, smiles and hellos.
What I don’t like and wish I could change are all the faces of those not wanting to look at or notice me. It is not that I want attention or to be noticed because I am in a wheelchair. It is that I don’t want to be AVOIDED just because I am in a chair.
My favorite experience is when a child approaches me and asks why I am in the wheelchair. I always thank them for asking and explain as simply as I can that I have “weak legs.”
My least favorite experience is when the parent pulls the child away from me and tells them, teaches them not to ask, or to look and that talking to me is not polite. I always prefer the honesty and innocence of a child asking why, to the avoidance of an adult who thinks they know better.
My goal is this: To increase the visibility of disability. I want to be seen as an outstanding member of the world because of my participation in it and not because of my disability. I want to see a world that is so accessible, that people with a disability are outstanding because of who they are and not because of their disability.
I want to see a world where we are all approachable, smile and say hello.
Participate. Make a difference. Live a life that matters.
I am able to walk short distances using a walker. But if more walking is required or if I don’t know the lay of the land, I use the wheelchair. I am not ashamed or embarrassed by this. It is just a fact of life – my life.
Here are the bad parts of being in the chair:
● When I am in the wheelchair, the people I am with are usually standing behind me and can’t or don’t hear me talking. When I talk loud enough to be heard, they want to know why I am yelling!
● In public places, when they need to ‘park me for a second’, there always seems to be an available ‘spot’ next to the trash can. PEE-EW!
● When we go to restaurants, the host or hostess looks at me sitting in the wheelchair and then asks the person I am with “Does he want a regular chair?” ASK ME PLEASE! (Ironically, if I enter a restaurant using the walker, we always seem to get the table furthest away.)
These are all minor, readily surmountable issues. These are the things I have noticed when sitting in the chair. These are all issues that my family and I can usually laugh about.
There is one more behavioral issue that I notice. That issue is that the people I don’t know who see me in the wheelchair can usually be divided into two camps. They are:
1. People who seem particularly friendly towards me.
2. People that pretend to not see me or avoid me.
I always prefer the friendly faces. I suppose that if I am in a wheelchair, and don’t look homeless (I am pretty sure that I don't look homeless), I may appear harmless and easy to approach, so people do. I get more smiles and hellos when I am in the chair than I do when I am not. I would like to think that I am a very friendly and approachable guy, and so I love the friendly faces, smiles and hellos.
What I don’t like and wish I could change are all the faces of those not wanting to look at or notice me. It is not that I want attention or to be noticed because I am in a wheelchair. It is that I don’t want to be AVOIDED just because I am in a chair.
My favorite experience is when a child approaches me and asks why I am in the wheelchair. I always thank them for asking and explain as simply as I can that I have “weak legs.”
My least favorite experience is when the parent pulls the child away from me and tells them, teaches them not to ask, or to look and that talking to me is not polite. I always prefer the honesty and innocence of a child asking why, to the avoidance of an adult who thinks they know better.
My goal is this: To increase the visibility of disability. I want to be seen as an outstanding member of the world because of my participation in it and not because of my disability. I want to see a world that is so accessible, that people with a disability are outstanding because of who they are and not because of their disability.
I want to see a world where we are all approachable, smile and say hello.
Participate. Make a difference. Live a life that matters.
Monday, October 13, 2008
Stop "SHOULD"ing all over yourself!
Of all the words in the English language, one of my least favorite is “should.” I can think of no other word that carries with it as much judgment as ‘should’, and yet we use it all the time. We use it on ourselves, our loved ones and sometimes on complete strangers. I am here to tell you that we really shouldn’t.
As a parent (co-parent, really) I have heard it used on our children no less than 1,000 times. “You should call your grandparents.” “You should do your homework before dinner.” “You should be ashamed of yourself!” Have you said anything like this to your kids? The problem is that the statement suggests that there is something wrong with them if they don’t follow the suggested action.
I have found that as a parent, kids want definite instruction with no ambiguity. There is usually no argument if I say “Call your grandparents” or “Do your homework before dinner.” There might be discussion, but rarely an argument.
We all want our kids to grow up and be thoughtful and disciplined. But do we really want to shame them into it?
I know that for me as an adult, when someone starts to tell me what I ‘should’ be doing, I want to tell them where they should be going! When someone suggests what I could be doing, it is filled with possibility, choice and an absence of judgment. “Would” is almost as good, although less definite.
There are a lot of things that I should be doing. Truthfully, I prefer to think in terms of what I ‘could’ be doing. As an adult, I like being able to decide what they are. As a parent, I want my children to decide for themselves about what they could be doing. I want my instructions to them to be definite (DO IT) or filled with possibility and choice. To me, that is how they learn.
Should-ing all over yourself and others is a tough habit to break. But you should try it. You (and your kids) will be glad you did.
As a parent (co-parent, really) I have heard it used on our children no less than 1,000 times. “You should call your grandparents.” “You should do your homework before dinner.” “You should be ashamed of yourself!” Have you said anything like this to your kids? The problem is that the statement suggests that there is something wrong with them if they don’t follow the suggested action.
I have found that as a parent, kids want definite instruction with no ambiguity. There is usually no argument if I say “Call your grandparents” or “Do your homework before dinner.” There might be discussion, but rarely an argument.
We all want our kids to grow up and be thoughtful and disciplined. But do we really want to shame them into it?
I know that for me as an adult, when someone starts to tell me what I ‘should’ be doing, I want to tell them where they should be going! When someone suggests what I could be doing, it is filled with possibility, choice and an absence of judgment. “Would” is almost as good, although less definite.
There are a lot of things that I should be doing. Truthfully, I prefer to think in terms of what I ‘could’ be doing. As an adult, I like being able to decide what they are. As a parent, I want my children to decide for themselves about what they could be doing. I want my instructions to them to be definite (DO IT) or filled with possibility and choice. To me, that is how they learn.
Should-ing all over yourself and others is a tough habit to break. But you should try it. You (and your kids) will be glad you did.
Saturday, October 11, 2008
Paul Newman.Tim Russert.Randy Pausch
We have lost three great men this year. I learned something from each one of them and was deeply touched by their passing. Please allow me to tell you why I was so moved by these three men that I did not know.
Paul Newman
Paul Newman. A great actor. A real movie star. A race car driver. A dedicated husband for more than fifty years. All notable achievements. Yet for me, his greatest accomplishment was as a philanthropist.
Paul Newman did what few have done before. He built a business whose sole purpose is to make the world a better place. His company, Newman’s Own, has generated over $250 million in profits and proceeds that have been donated by Paul Newman and the Newman's Own Foundation to thousands of charities worldwide. His greatest legacy is his philanthropy and it will live on and keep giving for many years to come. (www.newmansown.com/)
I know of no one else and no other business established for the sole purpose of philanthropy. Here was a man who chose to use his celebrity status to make this a better world. The Newman’s Own company motto says it all: “Shameless exploitation in pursuit of the common good.”
Truthfully, what he did was not so common. Honestly, his accomplishments have been far better than good. They are great.
Tim Russert
“If it’s Sunday, it’s Meet The Press.” These words were made famous by Tim Russert, an icon in the American news media. He became an icon in part because of the 16 years he spent as host and moderator of “Meet The Press”, but also because he was the standard bearer for excellence in journalism.
That standard that he set was evidenced by his hard work, preparedness, knowledge and extraordinary respect he showed to each of his guests. Smart politicians knew that you didn’t get interviewed by Tim Russert unless you were prepared to answer difficult and often confronting questions. He seemed to have a knack for asking the ‘everyman’s question.’ Whether it was a senator, a president or king of another country, you knew that he would ask tough questions and get them answered.
To his credit, you never knew what his own political views were. What you knew was that he was honest and was not going to let anyone get away with being less than honest with him.
For me, “Meet The Press” was a Sunday morning staple. The first weekend after he passed, the show was hosted by Tom Brokaw. At the end of the show Mr. Brokaw said “If it’s Sunday, it’s Meet The Press” and I burst into tears. That is when I knew what a fixture Mr. Russert had become in my life.
http://en.wikipedia.org/wiki/Tim_Russert
http://www.msnbc.msn.com/id/25145431/
Randy Pausch
Did you get to know Randy Pausch before he died? If not, then set aside 1 hour and 16 minutes to watch what may be the most extraordinary lecture ever given. You see, Randy Pausch was dying and he knew it. That knowledge gave him an extraordinary perspective about how to live. In the most intimate, personal and humble way, he shares that knowledge with all of us, anyone who is willing to sit and listen. Though Mr. Pausch may have been dying, he was certainly as alive as any of us could ever hope to be.
As a professor at Carnegie-Mellon University, he was also a participant in a lecture series called “The Last Lecture.” “where top academics are asked to think deeply about what matters to them, and then give a hypothetical "final talk", with a topic such as "what wisdom would you try to impart to the world if you knew it was your last chance?" (Wikipedia) In his case it was his last chance.
An amazing speech by an extraordinary man. If you haven’t seen it, I hope you will. (www.youtube.com/watch?v=ji5_MqicxSo )
http://download.srv.cs.cmu.edu/~pausch/
http://en.wikipedia.org/wiki/Randy_Pausch
What I know
My father told mea story a few years ago. He had attended a funeral and after the service, approached the daughter of the man who had just been buried. He said to her "I am sorry for your loss." Her reply was this: "I haven't lost anything. Everything I ever got from him I still have. I just stopped gaining."
Clearly, with the passing of these three men, we have all stopped gaining.
Participate. Make a difference. Live a life that matters.
Paul Newman
Paul Newman. A great actor. A real movie star. A race car driver. A dedicated husband for more than fifty years. All notable achievements. Yet for me, his greatest accomplishment was as a philanthropist.
Paul Newman did what few have done before. He built a business whose sole purpose is to make the world a better place. His company, Newman’s Own, has generated over $250 million in profits and proceeds that have been donated by Paul Newman and the Newman's Own Foundation to thousands of charities worldwide. His greatest legacy is his philanthropy and it will live on and keep giving for many years to come. (www.newmansown.com/)
I know of no one else and no other business established for the sole purpose of philanthropy. Here was a man who chose to use his celebrity status to make this a better world. The Newman’s Own company motto says it all: “Shameless exploitation in pursuit of the common good.”
Truthfully, what he did was not so common. Honestly, his accomplishments have been far better than good. They are great.
Tim Russert
“If it’s Sunday, it’s Meet The Press.” These words were made famous by Tim Russert, an icon in the American news media. He became an icon in part because of the 16 years he spent as host and moderator of “Meet The Press”, but also because he was the standard bearer for excellence in journalism.
That standard that he set was evidenced by his hard work, preparedness, knowledge and extraordinary respect he showed to each of his guests. Smart politicians knew that you didn’t get interviewed by Tim Russert unless you were prepared to answer difficult and often confronting questions. He seemed to have a knack for asking the ‘everyman’s question.’ Whether it was a senator, a president or king of another country, you knew that he would ask tough questions and get them answered.
To his credit, you never knew what his own political views were. What you knew was that he was honest and was not going to let anyone get away with being less than honest with him.
For me, “Meet The Press” was a Sunday morning staple. The first weekend after he passed, the show was hosted by Tom Brokaw. At the end of the show Mr. Brokaw said “If it’s Sunday, it’s Meet The Press” and I burst into tears. That is when I knew what a fixture Mr. Russert had become in my life.
http://en.wikipedia.org/wiki/Tim_Russert
http://www.msnbc.msn.com/id/25145431/
Randy Pausch
Did you get to know Randy Pausch before he died? If not, then set aside 1 hour and 16 minutes to watch what may be the most extraordinary lecture ever given. You see, Randy Pausch was dying and he knew it. That knowledge gave him an extraordinary perspective about how to live. In the most intimate, personal and humble way, he shares that knowledge with all of us, anyone who is willing to sit and listen. Though Mr. Pausch may have been dying, he was certainly as alive as any of us could ever hope to be.
As a professor at Carnegie-Mellon University, he was also a participant in a lecture series called “The Last Lecture.” “where top academics are asked to think deeply about what matters to them, and then give a hypothetical "final talk", with a topic such as "what wisdom would you try to impart to the world if you knew it was your last chance?" (Wikipedia) In his case it was his last chance.
An amazing speech by an extraordinary man. If you haven’t seen it, I hope you will. (www.youtube.com/watch?v=ji5_MqicxSo )
http://download.srv.cs.cmu.edu/~pausch/
http://en.wikipedia.org/wiki/Randy_Pausch
What I know
My father told mea story a few years ago. He had attended a funeral and after the service, approached the daughter of the man who had just been buried. He said to her "I am sorry for your loss." Her reply was this: "I haven't lost anything. Everything I ever got from him I still have. I just stopped gaining."
Clearly, with the passing of these three men, we have all stopped gaining.
Participate. Make a difference. Live a life that matters.
Tuesday, October 7, 2008
The decision we make every morning
A friend recently sent this to me. I think it has been circulating on the internet for years. It is an ‘oldie, but goodie’ and I hope you enjoy it.
A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today. His wife of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.
As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.
“I love it” he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.
“Mr. Jones, you haven't seen the room; just wait.”
“That doesn't have anything to do with it” he replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged. It's how I arrange my mind. I already decided to love it.”
“It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for he ones that do.”
“Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away. Just for this time in my life. You see, old age is like a bank account. You withdraw from what you've put in.”
“So, my advice to you would be to deposit a lot of happiness in the bank account of memories! Thank you for your part in filling my Memory bank. I am still depositing.”
Remember the five simple rules TO be happy:
1. Free your heart from hatred.
2. Free your mind from worries
3. Live simply.
4. Give more.
5. Expect less.
-Anonymous
Participate. Make a difference. Live a life that matters.
A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today. His wife of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.
As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.
“I love it” he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.
“Mr. Jones, you haven't seen the room; just wait.”
“That doesn't have anything to do with it” he replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged. It's how I arrange my mind. I already decided to love it.”
“It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for he ones that do.”
“Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away. Just for this time in my life. You see, old age is like a bank account. You withdraw from what you've put in.”
“So, my advice to you would be to deposit a lot of happiness in the bank account of memories! Thank you for your part in filling my Memory bank. I am still depositing.”
Remember the five simple rules TO be happy:
1. Free your heart from hatred.
2. Free your mind from worries
3. Live simply.
4. Give more.
5. Expect less.
-Anonymous
Participate. Make a difference. Live a life that matters.
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