It was May 2016 when they found cancer cells in my esophagus. My doctor told me that I needed an esophagectomy, which involved removal of my food pipe. Initially, I was just kind of in shock and I didn’t know what questions to ask the doctor. Unless you go through something you really don’t know what to ask. But I have a very strong faith. I knew that no matter what happened, whether I made it or not, I was going to be ok and was at peace as I went into the surgery. After the surgery it was apparent that I wasn’t able to care for myself. But when you have been the caretaker all your life, it is very hard to ask for help. As time went on, it became easier for to me to ask for help and rely on others to assist with my care. I’ve learnt what’s important in life and what’s not and I no longer get upset with trivial things. I used to be a workaholic and even though I still have a very demanding schedule, I’ve put my priorities in the right order. I enjoy every moment because truly, every moment is a gift.
I was born with Retinitis Pigmentosa, a visual impairment. I started out with a pretty normal childhood. My parents noticed early on, that I couldn’t see very well and got me appropriate glasses. It wasn’t until high school that I started to think of my impairment as a disability. Due to my deteriorating vision I needed to be set up with this giant TV monitor on top of a camera looking thing. It was quite a cool thing. It could invert colors, zoom in and out and its what got me interested in geology, which I took up in college. I would zoom into rocks and see all the wonderful layers. I got to do some amazing field trips while studying geology. Due to worsening vision, by the time I got out of college getting a job in geology was impossible for me. I had to rethink life. I worked with a career coach who put out many suggestions based on my mindset but forgot to take into account my vision. I tried many different things and along the way realized that I wanted to inspire and help people with visual impairments in the right way. There are many accommodations that I could have used to help me in my journey, if only I knew about them. I now work as a career/ life coach with people who have disabilities. I give them information regarding resources that they could use to enrich their lives. I help them achieve what they want, but maybe with a little change in their original plans. I work with different organizations to help improve their lives. It has been very satisfying for me.
The one thing I would wish people would do, is treat me as normal. When I’m on the streets and with a walking stick, people move out of the way and I don’t like that. I have Bogey (service dog) with me now. Since then people come say hello to me because of him. I don’t want to be treated any different from others.
Overall I have a very positive attitude and I accepted my visual impairment fairly early. I don’t let it stop me from doing things that I love. I travel whenever I can, am a wine connoisseur and am a motivational speaker. And with me on my journey I have Shannon, my wonderful wife. I attribute my positivity to my grandfather. He was a role model to me and thats what I want to be for others living with the impairment.
I was lifting something at the fitness center when all of a sudden I had a very strange feeling. I can’t exactly describe it, but I knew that I had to get to the hospital. I literally ran out, jumped in my car and drove to the hospital. By the time I reached the ER my left arm was numb. It frightened me, but not as much. I remember thinking that if I loose my left arm, I would still have my right. I have always been one to say “ Take what comes”. I don’t remember much once I got to the ER other than that everybody started moving around very fast. I woke up only 5-6 days later. I remember the doctor telling my wife to call my children to get to the hospital quickly, as the odds didn’t seem good at all. I had an aortic dissection. They operated and saved my life. I had 2 surgeries after, to repair everything. One of those surgeries had gotten cancelled at 2 am the night before due to an emergency. At first I felt aggravation, but my second thought was that I’m alive today because somebody else got put off. Never again did I have a bad feeling about that. I realized how fortunate I was to be alive. I appreciate life more since then. I realized that the only way to keep on going, is by being active. I’m 80 years old right now. I don’t sit around and wait for death. I make a list of things to do and do them. I do a lot of physical things around the house, feed the birds, take care of my garden, work out 3-6 times a week and continue to do the things I love. My PCP has made me talk to other older patients of his, who after an illness decide that now they have got to go home and sit. I tell them that life can go on and you can still enjoy your life. There is nothing that says that you have to stop doing what you like, you just may have to change some things around it and be more careful.
You have to take one day at a time. My mother gave me this book “The Precious Present” when I was in high school because I worried about everything. Years later in 1995 when I was diagnosed with PSC (Primary Sclerosing Cholangitis), that book really came to light and that’s what I live by now. You live the moment. You don’t look at tomorrow as what you think about tomorrow may never flourish. I was listed for a liver transplant. I got a chest x-ray before the scheduled surgery and they found metastatic colon cancer in my lungs. I had been eight years free of the cancer. I was taken off the transplant list. So there I was thinking about having the liver transplant and now had to deal with the cancer. That’s why you don’t worry about tomorrow as it may change. You take one day at a time. That’s what gives me strength.
I have also had an ileostomy. It was awful when I first had it. My husbands grandmother had one and it used to just freak me out. I hoped to never have it, though now I do. I’m handling it better than I thought I would. You’re always concerned about it though, that it may leak. I have been in situations where it has leaked. I had to empty it in an airplane seat once. I couldn’t get into the bathroom as it was too small for me to adjust. There was a young man sitting next to me. My sister explained to him what was going on. I put a blanket over my head and emptied it into the little bag they have in the airplanes that is used to vomit. I’m sure it smelt foul but you do what you got to do. The young man was fine with it. We were just laughing after. Humor is a big thing too and I do have a good amount of that.
My story started as a resident when I was training to be a surgeon. I was having trouble physically and was diagnosed with lupus. By early 90’s I had a variety of problem. I was put on medical leave in 1992 after a short career in the medical field. In my world everything kind of stopped. I was very depressed. I tried a variety of things, but it just wasn’t quite the same. Eventually treatment kind of worked and I started to do little bits of things again. Then in 2002-2003 I was backed down by a car leading to multiple complications and 2 major heart surgeries. Meanwhile my arthritis had chewed up the joints in my hands. There was no way my hands could ever operate again. I started to take a rational look at life again. I looked around for something else to do. I liked animals, horses in particular. I had been riding since 12 years of age. I was happiest when I was horseback riding. So, I thought horseback riding. I had to figure out how I would be even strong enough to get up on the horse. A chance meeting with a friend led me to investigate parasports, for people with disabilities. I worked very hard, found people who believed in me, and had an unlikely horse Eric who tried very hard along with me. I finally made it to the 2012 US Paralympic Team in London and did very well. I have competed in many parasport events since. Now I cannot ride a horse due to medical limitations. Turns out, sitting in a carriage elegantly, wearing clothes like a lady should, you can drive a horse in a carriage. So, now I am embarking on my new career as a carriage driver.