Dedicated to Kevin.
It saddens me to share that I found out that Kevin, my friend who acquired a genetic disability passed away this past Tuesday. I debated on writing this blog entry. But I feel compelled to tell you about the great person Kevin was and to celebrate my friend’s life with you. I wish you all knew Kevin. He was always upbeat, extremely compassionate, and patient. A New Yorker transplanted in Pasadena, but a New Yorker true and true; a lover of New York pizza and the New York Mets, although he often wore a Yankees basketball cap.
To respect Kevin, I’m not posting a picture of him, but a picture of his organization’s logo. Living with Amy was the name of his blog, http://livingwithamy.wordpress.com, and organization, https://www.facebook.com/pages/Living-with-Amy/140832319377098. You see, Kevin’s condition is called, Amyloidosis, so Living with Amy was a spin-off of this. It just shows Kevin’s humor and creativity.
I first corresponded with Kevin when he was looking into a school I was attending in Pasadena. I was designated to give him insights about the school as another student with a disability. Of course, I gave him brutally honest feedback, that the school itself was mostly accessible, that they lacked a fire evacuation plan for us, and that my biggest challenge was with student housing. When he started school in the family counseling/therapy program shortly after, I told him that I was surprised that I didn’t dissuade him from attending this school.
Having Kevin on campus was a blessing because he was another student who cared about disability issues and became the third student representative in our student group forming a community around disability matters, promoting disability awareness on campus. The student who was originally in that role left unexpectedly. So if it wasn’t for Kevin, our student group may not have existed, or existed to the same extent.
Lately, I have been tired of having to advocate for myself in a culture that seems oblivious to disability awareness and the fact that the ADA has been enacted for nearly 25 years (in this coming July), even though I know that advocating for myself means advocating for others with disabilities too. But Kevin and the life that he led, shining light on Amyloidosis, put things in perspective for me and let me see how selfish this is.
My sister was surprised by my lack of sadness when we got the message of Kevin’s passing. As a lifelong member of the disability community, I’ve grown accustomed to having friends die young. It comes with the territory. Like how some in the LGBT community have early deaths due to AIDS and HIV, some people in the disability community have disabilities that cause early deaths.
I remember my elementary school teachers explaining to a group of us that two of our classmates with disabilities had passed; I can’t remember their names, I just remember their bright blonde hair. In high school, all of the students with disabilities took a field trip to the funeral home when one of us passed; my poem about Nellie ended up in the school paper and I think it helped others grieve, more than it did for me.
I do worry about my college friends with disabilities. Some have life expectancies of 30 and I am one of the youngest at 31. My college roommate of three years passed away a few years ago due to complications with her feeding tube. It was quite a loss in our circle and also to the disability community at large. Annie would have been quite a force in the disability community, advocating for change. Her brother, Stevie, is making sure that Annie’s impact lives on through 3E Love.
When I reunited with my elementary school “Physically Handicapped and Impaired” (perhaps this was acceptable language for the time) Program Teacher after twenty years, she shared how her mother-in-law, an urban city teacher, would see her former students in the newspaper involved with or victims of gang violence, while she sees her former students with disabilities in the obituaries. Our reunion must have been a refreshing break for her, especially since I don’t plan on leaving anytime soon (my Cerebral Palsy doesn’t shorten my life expectancy, at least I don’t think it will).
I was not anticipating Kevin’s death. Although he told me of his Living with Amy and about Amyloidosis, I didn’t look into it. My initial reaction to Kevin’s death was that I was glad that he didn’t have to live in pain anymore, since he told me about his pain associated with Amyloidosis. My faith allows me to have confidence that Kevin is in a better place.
I have to admit that writing this has been difficult. I regret that I only really started to know Kevin as I prepared to leave Pasadena; I regret not knowing him better; I regret not bringing my dog over to play with him since Kevin told me when I left that he wanted a dog; I regret not keeping in better touch with Kevin. I know if he was here, he would say that it was ok.
One of the last times I saw Kevin in Pasadena was to drop off my books to leave to our student group. It was the first time we really talked about how he was doing at the school. We commiserated over our mutual difficulties with student housing, the administration, and finding personal care assistants. The last time I talked to him was this past July after I moved to Illinois; I invited him to join a conference call meeting for my non-profit housing cooperative for people with and without disabilities. Kevin was so excited about this, that he wanted to start something similar on campus in Pasadena, and he was helping us with our business plan. His excitement for finding better housing and personal care solutions was contagious.
I usually don’t ask people what kind of disability they have, their race, religion, sexual orientation, or other statuses in life unless they bring it up. I’d like to see the person first as a person. But perhaps if I took the time to research Amyloidosis or read Kevin’s blog, I would have done things differently; made more time to get to know Kevin. But then I wonder if Kevin would have wanted to be treated differently.
If I had read his blog, I would have realized that he was diagnosed in 2008 with Familial Amyloidosis ATTR71. Kevin explains:
Amyloidosis (am-uh-loi-DO-sis) is a disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced in the liver that can be deposited in any tissue or organ.
Amyloidosis can affect different organs in different people, and there are different types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.
Amyloidosis is widely considered to be a rare disease. However, there is no doubt that it is vastly underdiagnosed, and that many people die from complications of the disease without ever knowing about Amyloidosis.
I have no doubt that Kevin would have continued doing incredible things with his life and that his organization, Living with Amy, will continue his legacy, promoting Amyloidosis awareness. If you are moved by Kevin’s amazing life, please like Kevin’s Facebook organization page for Living with Amy: https://www.facebook.com/pages/Living-with-Amy/140832319377098
I leave you with a quote from Kevin’s blog: “I did not begin to learn how to live until I learned about dying…. So I cut out the unnecessary crap and move towards purposeful living.”