By November 9, 2015 Read More →



For me cancer still carries the death sentence stigma. My generation has seen many advances in the care of cancer and the outcome of a cancer diagnosis has changed significantly in the last several years. Recently I had my first one degree of separation encounter with cancer. I learned a lot and there are many things I’ll do differently in a similar context.


We stopped living. When my wife was diagnosed with cancer we paused and held our breaths and stopped living. I’ve always said I want go out with my hair on fire and the only thing I leave in this world is a big smoking hole, translated I’ve always spouted that I want to live life to the fullest. Shockingly we didn’t. We had a brilliant year going before the diagnosis tons of firsts lots of adventures in the wild. Some near death experiences, that was really stupid. Next time I want to keep living.


Help is always appreciated but…. Being disabled I am sensitive when people come in and take over. I appreciate the help I really really do but. Help is tricky business you can’t just take over. If you do you are implying that the person your helping can’t do it themselves. Me, disabled person, get a little red hen crazy when people come and take over my world. I like doing things myself it makes me feel good about myself. Obviously if you come and take over you think I can’t because I’m disabled? Right? We’ll maybe not but… Help is appreciated just ask first. What can I do for you? I’ll love you much more if you ask as there are many things I do need a hand with.


A cancer diagnosis is an individual thing. I parallel the cancer experience to a pregnancy and birth. It took almost as long to resolve and the emotions and stress were shockingly similar. Its hard hard hard contemplating that your wife that you love will not survive the experience. No one claimed that I’m rational and you tend to think your worst nightmare scenarios in these contexts. However I wasn’t the one with cancer just like I wasn’t the one having a baby. So I had to respect the choices of my wife an support her in what she wanted to do to gain treatment. Not that I disagreed with anything thats not the point. We come into this world alone and generally we leave it alone. Since I didn’t have cancer I can’t speak to that journey itself. My mentor Lee whom I love very much has had cancer three times in his life. He guided me by telling me that each diagnosis was a different journey for him and the it uniquely was his own journey. Perhaps like blindness, that is my own individual journey.


Have a plan. The one thing my wife and I will do better next time is to have a plan, just like a birthing plan. Hospital visits suck at the best of times no matter how awesome the staff are and they are generally awesome. I was recently described as loyal, interesting label, I prefer tenacious. Regardless I have a standard of care I want to provide and as much as possible I want to be there for my wife. We didn’t have a plan and things didn’t go exactly how either of us really wanted it. Well mostly me. I like to be useful. An over compensation for the disability probably. I need to be there doing what I do I need to help. Next time I’ll do better about ensuring that I’m allowed to do my thing too.


I’m not good at relying on other people especially for transportation logistics. Once you step into someone’s care you are at their mercy. You will do what they want when they want you to period. There are not many folks I will trust with rides its a power thing and its been used against me too many times. My logistics were limited this time and I wan’t able to help or be there at the hospital for critical moments, like the release meeting. Wasn’t the care I wanted to give wasn’t the support I wanted to provide.


Our friends who were helping are much loved by my wife and I. They actually seen me at my worst my most uncomfortable as all of us get when we feel out of control of our own lives. With luck I haven’t totally alienated them and instead of our relationship breaking perhaps its been depended and provided new insights into each other.


Fear got the better of both of us. We pulled a Bambi and like that deer in a headlights we crapped our pants and stood there dumbfounded. There is a great Star Trek quote “how we live life is as important as, as we face death”. Didn’t meet the bar this time. Death, loss are very scary things. Another mentor of mine told me that the older we get the harder and bigger life’s problems become. My friend lost his wife to cancer.


Today is an amazing day, two weeks post operation. Very profoundly lucky cancer free. We are breathing again counting our blessings and thankful that we still have each other. My wife and I are the lucky ones. We thankfully caught things early and moved on it quickly. Sadly that doesn’t always ensure success. Although euphoric today with delight that my wife is stuck with me a little longer at least. I can’t stop thinking about a close friend of mine whose friend didn’t catch things early and will very likely not see Christmas.

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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