Have fun with it

I always wanted to get a peg leg. Why should those movie pirates have all the fun. And they need special effects to get away with it. Not me. Just a piece of cherry wood beaten up a little bit with a fitting on the top and a nice rubber pad and I was good to go. Should have done it years earlier. I easily won best costume at the company Halloween party. The hook is pretty cool too. It's real of course and works. Here is a close up of the peg leg for those who are interested.

Who Says I Can't available 21 Nov 2009

We have a launch date: the book will be in print on 21 November 2009. In time for Thanksgiving and Christmas. It will be available on Amazon in advance of that (no date for that yet). It can be ordered now from the publisher now and from stores on 11/21.

Self-esteem isn't everything; it's just that there's nothing without it

A good friend, Ross Lilley the Executive Director of AccesSportAmerica, recently wrote me "I believe you to be refreshingly open, humble and even a little embarassed at the attention you get, but you seem to realize that you have to be out front to convey a very powerful message."

He hit the nail on the head. With my book Who Says I Can't about to get out and onto shelves, I am understandably excited and I want to get that book into lots of people's hands because I believe it can do a lot of good. And to do that I have to talk about and promote the book which is, of course, self-promoting. Even if you are proud of what you have done, most of us who are not weaned in Hollywood are not that comfortable in a self-promotion mode. I certainly am not. My wife, being a midwestern Catholic girl from a small town is mortified with all the self-promotion that is going on. But I learned many years ago when climbing a long steep hill on a bike ride from Boston to NYC that whether I like it or not, attention will be paid to my accomplishments because that attention will help and motivate others. As I wrote in the last chapter of my book entitled Accidental Inspiration, I set out to do all the sports and extreme activities I have done in my life for myself not to inspire; in fact that word was not in my vocabulary at all until recently. These sports were about proving something to myself and gaining some very hard fought self-confidence. Each sport or activity I tackled turned into a means to one little victory at a time which, with a lot of focus and hard work, could turn into enough success at that activity that I could build a bit more self-esteem. And as Gloria Steinem (pictured above) always said, "Self-esteem isn't everything; it's just that there's nothing without it." It's rare to find someone who has never had a "self-esteem crisis" whether it is from something pretty bad like a disability or from something pretty trivial like a zit or from millions of things in between that are just called "life". But some things that life throws at us are permanent and can tear down one's self esteem frequently, harshly and relentlessly so you have to find a way to have a steady stream of little victories to battle back, keep one's balance and keep one's self-esteem (and sanity).

Ross is right. On the Pan-Mass Challenge bike ride literally hundreds of people see me and tell me I am an inspiration to them and others. No matter how many times I hear that, it still embarrasses and humbles me. I even used to look around to see who they were talking to. I do realize now that they are talking to me. And now I am trying to get up and speak in front of groups about my story, about my book, and about some of these philosophies that have sustained me because, for the same reason that I wrote the book -- its what I would have wanted to read when I was most in need -- I do have a powerful message and the more people who hear it the better.

Cullen Kleftis dies at 19 from Osteosarcoma

Too often people think the advances we have made, such as the treatments that contributed to my surviving, mean no one is dying from the horrors of Osteosarcoma. Using Google Alerts on the keyword 'osteosarcoma' I track all the Web content that mentions the disease and I can assure you we have not stopped this disease from taking the lives of young vibrant people. I don't bring over all the stories I read that are sobering, depressing, and make me ever more thankful that I somehow managed to survive, but this story I just had to bring across and share. Sorry, but its time for a reality check.

This is from UticaOD.com

Cullen Kleftis was known for two things: his grin and his indomitable spirit in the face of an ongoing illness.

Diagnosed with an aggressive bone cancer in 2006, the then 15-year-old remained determined to live life to the fullest. It was a philosophy he maintained until the end – traveling to Alaska briefly just weeks before his death Sunday as a result of Osteosarcoma.

“He never was going to quit, he was going to fight,” his mother, Sandra Kleftis, said Tuesday. “It was all about living and doing it on his terms.”

That resolve touched many in the community, which rallied together to throw a benefit for the family in May 2008. At the time, Cullen Kleftis was waiting for the results of some medical exams, but also planning for his senior program, graduation and a skydiving trip.

“Whatever these scans show, I’m not changing it,” he said of his schedule at the time.

This week, the community is rallying behind the family again. A Facebook page in his memory had more than 250 members as of Tuesday evening, and many more memories and sympathy messages were left on a CarePages site often updated by his mother.

Several individuals commented on how much their children had enjoyed having Kleftis as a counselor at a summer camp for children with cancer.

Others mentioned that they knew Kleftis only through a mutual friend of a brief meeting, but had been struck by his presence in that short time.

“Cullen had that effect with people,” his mother said. “If you just met him for 5 minutes, 10 minutes, he just had that effect. He just sticks with you.”

Kleftis moved to Clinton from Pennsylvania in 2007. By the time he graduated from high school in June 2008, he already had undergone three rounds of chemotherapy and at least four major surgeries.

The first removed his left knee and replaced most of the bone from his lower leg with metal rods. Others removed tumors from around his lungs.

Once an avid hockey player, he served as manager of the school’s varsity hockey team after his illness left him unable to play.

Clinton High School postponed a home soccer game Thursday against New Hartford until 3 p.m. Saturday to give players a chance to mourn “a brave 19-year-old Clinton Warrior who fought a long and courageous battle,” coach Gil Palladino said.

Despite continuing cancer treatments after graduation, Kleftis was able to attend one semester at Clarkson University this spring. He was studying engineering and earned the distinction of Presidential Scholar with a GPA of 3.9. for that semester.

He later enrolled in the engineering program at Mohawk Valley Community College to be closer to his family, but had to withdraw before the beginning of the fall semester due to his illness, his mother said.

“He put everything he had into school,” she said. “He did extremely well academically and socially. Just an amazing kid. Absolutely amazing.”

Boat pull-out excitement

Taking the sailboat out of the water every fall is a pretty routine matter. The boat trailer is lowered into the water and sits there waiting for us with a person ready to catch the sailboat as it comes (hopefully) smoothly and gently in. Two people get in the dingy and go out to the moored sailboat. The dingy is tied on to the stern of the sailboat, one person mans the rudder and the other grabs the single oar used for when the boat is becalmed and starts rowing. At first, as you would expect, rowing on just one side of the boat makes it turn the other way but once the big boat gains some momentum, the rudder can more than compensate and the huge keel plus the rudder make the boat pretty easy to steer on a straight course. A short five minutes later we are usually sliding the boat straight onto the waiting trailer.

Not this year.

This was the windiest and coldest of any day in 15 years of taking the boat out of the water. The wind was coming from the south which is the direction the boat had to go from its mooring to the boat ramp. The tide was coming in and it was also making the water flow in the same direction as the wind. The tide is big up in Maine so its a lot of water to move in a scant six hours as well. Things started out just like normal and Dad was the one left at the boat trailer while Carole and I, as per our normal, went out to bring the boat in. Just getting the dingy out to the sailboat was more challenging than usual due to the wind, tide and waves. But we got to the Snowcap ok and took off the rain cover and untied the rudder. I got out the single oar and put the oar lock on the boat's starboard side and cast off the mooring. I reminded Carole that we would start to go in a circle until we could build up a little head of steam. But pretty quickly I could see that this was not like every other year. I was pulling very hard on that oar and I could not get the boat to move upwind. We were losing ground not getting closer to the boat ramp. I switched sides to see if working a little with the wind on the same side of the boat the wind was coming from might help. Again, we turned but never made forward progress. I could not even get us back to the mooring we just released and now it was 30 yards upwind of us and getting farther and farther away. Switching sides to row from one more time also didn't help so now I realized I needed to have a plan B. And perhaps a plan C as well. Could I drift into another mooring to buy us time to formulate plan B perhaps? Nope the only mooring left in the little marina we were in was too far in the direction of land and I did not have enough control of the boat to get it there in time.

Plan B was going to be for me to shift the little dingy from being pulled by the big sailboat to being the little tug boat turning the tables on the big boy. I wanted as little time wasted in shifting the dingy to be in front with a tow line as possible as we were drifting the wrong direction pretty fast. Luckily we had a line we could use so I quickly dropped the oar and unraveled the line, tied it to the cleat on the front of the sailboat and had Carole pass the dingy up alongside so I could get into it. Once in it I tied the tow line around the seat I was sitting on as there are no cleats or tie-off places on the dingy. It is a very small 6-foot long affair. I got things positioned where I wanted them probably in about two minutes and was now starting to row. The first thing I noticed was that I was able to stop the drift. That was the first good thing to happen. And then, very slowly as I pulled and pulled long deep strokes on the dingy oars I was able to see the inklings of forward progress. I now knew if I just had the strength, endurance and patience I would need I could pull this several ton Herreshoff wooden and fiberglass boat with the tiny dingy the 1000 yards or so we needed to go. Every 5 minutes or so we only went about 100 feet so it was a long hard pull. The dingy was getting buffeted by the increasing wind and waves. I was looking straight at the Snowcap with Carole steering and it was bouncing around on the waves as well. But every time I looked around we were getting incrementally closer to the docks and once I got around them, we were going to be in a quieter little bay and on our way to the boat ramp. Finally after what seemed like an hour we got into that quieter water. My arms were warm from the work but luckily all the crutch-hiking, swimming and rowing I keep up with regularly meant I did have the strength and endurance to keep going until we were home free. I never had to use Plan C. You are dying to know what that is right? It was to put up the sails and sail that bad boy until I was upwind of our goal, then drop the sails and go back to single oar rowing but this time with the wind helping me. I think Plan C would have worked but I'm glad we didn't need it. We had plenty of excitement just with Plan B.

Hierarchy vs. Handicapped

Many people who see all the extreme sports I have figured out how to do and how to do pretty well, think it's kind of weird that I now make an effort to park in handicapped spots. In fact, there are times when I have two kayaks on top of the car and a couple of bikes on the back of a car and still park in a handicapped spot. What's up with that? There was a time back when I was young when I wanted nothing to do with a handicapped spot or placard or even the word. But I learned that it's not when I have my leg off and am on crutches that I need those spots it's when I have my leg ON when it matters. That is surprising to a lot of people. But these prostheses are not what you might think. They are high tech and sophisticated yes. But they are a large weight of metal and plastic handing off of a residual limb and they rub and chafe no matter how hard we work on getting a good fit. So in the end, I think of each day as having a quota of steps in it I can take. If I get past that quota I will hurt and sometimes hurt for a few days. That happens after a long trip through multiple airports. So saving steps from parking spot to office or store is a big deal.

This is why at my new job I find it so wrong that they have a small convenient parking lot right by the front door but the spots in it are all reserved for senior executives. Down the hill and a long walk from the front door is a large lot and along one side of it (yes, closest to the building) is a row of handicapped spots. But this is a long way from the front door. And I can assure you when they were designing that building those spots near the front door were designed for handicapped. While this may not be in violation of the letter of the ADA law it is certainly in violation of the spirit. Because I stated my case firmly, they decided to take a reserved named spot and put my name on it. Fine for me. But I did not succeed in making this work for all the other legitimately handicapped employees and visitors. They still have to walk a long way up a hill to get to the building. Senior executives, is hierarchy, position and stature this important that we favor you having a short walk over those for whom walking is hard or uncomfortable? We can do better than this...

Speaking at House of Blues Boston

Oct 7, 2009. I am speaking at the Boston House of Blues tonight at around 7 pm. It's a fund-raiser for the Friends of Dana-Farber and ultimately supports the Dana-Farber Cancer Institute and all the great things they do. This event asked me to speak because the book is imminent (publish date is early Nov) and because they view me as a bit of a poster child for what DFCI is all about. Should be a fun evening. Hope to see a lot of people there!

Mirror mirror on the Wall

The perception we have of ourselves from the perch up on top of our neck is completely different from that of looking at ourselves in a mirror. For someone with a new disability, one that physically changes them, it is natural to strive to get to a "normal" that allows them to relate comfortably with those around them. One look in a mirror can dash any progress because what you see in the mirror is what you think others are seeing when they look at you. But it's not true. Self-perception is part of the normalcy we seek and mirrors are anathema to a positive self-perception.

Become disabled and you look different, maybe walk different. Thankfully, time does to our ailments, mental and physical, what rain over millions of years does to mountains: it smooths them out, it wears them down, it softens them. After some time and a few positive steps and a few little victories that begin to build back our confidence and our feelings of normalcy, our self-perception too begins to change and be more positive. It happened to me. After years of working really hard on sports to have some little victories each one of which gradually helped me build back some much-needed self-confidence which then transferred over to all aspects of my life, I thought from up on my little perch that I looked pretty normal walking. But when I saw myself in a store window and I saw someone limping, someone downright gimpy. "Who is that gimpy guy," I would proclaim to myself only to catch myself and realize, just as a playback of my recorded voice doesn't sound like the me I hear inside my head, this guy I was seeing didn't look like the me I see inside my head. So which one is the real me?

The mirror is lying only to you! Just as the live voice coming from you and the recorded voice of you sound the same to others but not to you, so too do the live perception of you and the one in the mirror look the same to others but not to you. Your self-perception is the one you have worked on and built up over time and it's the ground truth. Ignore the mirrors. Break them all. People perceive you not just with the bare photons bouncing back at you from that evil mirror. They also see your accomplishments, the fight you are fighting, and your attitude. Things no mirror ever will show you. The you you see in your head, like the you you hear in your head is the real you and it's the one others see as well. Focus on the health, happiness and well-being of that you and not the one in the mirror.