I am Rick Phillips, I was diagnosed while at Disney World when I was 16 years old. I was released from the hospital on my 17th birthday, 34 years ago. i knew two things the day I was released, First Disney World is not always the happiest place on earth and my life would never ever be the same. I was angry. It is an anger I never really ever gotten over. I doubt I will ever get over it.
At age 17 my doctor told me the truth as he knew it. Basically, the doctor said look you will have about 25 years of productive life and if you are lucky you may live until you are 50. Imagine telling a 17 year old, this is your death sentence. Why was this so important, well by the time my mom was 40 at the time. She was blind, facing dialysis, and was in danger of losing her feet. Mom had been diabetic for fifteen years.
Faced with the thought of not making it until I was 50 I had some very important decisions to make. the first one was what to do with my life? I wanted to make a difference in the world of politics. my dream was to go to Washington and working campaigns. That was out. First I did not have time and second what if i was sick, how would I take care of myself. Young campaign workers don’t have health insurance. Second, I wanted a family. Think about it, if I wanted to have children i had to be married, and have them very soon, otherwise I would leave them wihtout college and without a dad. Fifty was coming up fast.
So I refocused, decided I would do local politics, hopefully get married ASAP and decide about children. One thing I had to face, was do I want to have children. My mother passed the disease to me, but she did not she would have it when I was born. Mom was 26 when she was diagnosed. I knew better, and could I have children since I did know better?
I was married at 19 and my wife and I are happy and still married. We decided to have children, two wonderful sons that I love desperately. and I started a local political career. Since my health fluctuated I never ran for office instead I worked for candidates and then for 16 years in local government. I ignored my diabetes. Why not? I mean I was gong to die soon enough no matter what I did so live hard and die young.
I took my motto from a Neil Young song, out of the black into the blue. The lyric I adopted was, “its better to burn out then fade away”. i was never going to fade away, i had a bang to serve up and it had to be fast.
When I went to college, i was living hard. I was 18 and I needed to burn the candle at both ends and the middle. I had so much living to do and so little time. I was married at the end of my sophomore year and settled down a bit but I ignored my diabetes. A doctor told me to lose some weight when I was 26 and i decided to never go back. So I did not for 20 years. Slow down, lose weight, take care of yourself? i did not have time. I needed to live.
When I was 34 i went to work one day and had this epiphany, see I had accomplished everything in my life i intended to do. i was ready to die. and for several years I prayed I would or at least get horribly sick. Well I was not dieing and not getting sick. When I was 37 I entered therapy with the thought that I wanted to lose the depression, and get over my fear of medical doctors. My mom died when she was 48. She was on dialysis, she last part of her hands, could not see and could no longer walk. My death sentence was so real, technology did not help her. i did nto expect it to help me.
When I went to the medical doctor for the first time in over 20 years, he said we have been waiting for you. I said waiting, I have been running away. After a couple of years of seeing a GP I went to an Endo and have been with him ever since. It was a good move. When I started with him, i still only saw one doctor. One day I told him my back hurt and did some tests. Turned out I had RA so I got an RA doctor. Then an eye doctor, and a heart doctor. I went from 20 year sof no doctors, to today with 16. Avoiders revenge.
So now I am 52, my sons are grown and I am not working, not because of the diabetes but because of the RA. Today I find it hard to walk, sit and stay awake. (RA causes extreme exhaustion). So what is next ?
Today I am enjoying my granddaughter, she is 1. my sons are married and I am back in college working on an EdD. i have been married for 32 years, and I am comfortable. But what if i taken a different path? Suppose I had taken car eof myself, seen a doctor once in awhile? I might have lived better, accomplished more worked longer had more fun and worried less. i am not blind, I can walk, and my kidneys are fine. So what is next? i dont know.
rick phillips
PS: when i was in the hospital and 16 they brought me an orange to practice my injections on. I was so hungry I ate it. One the second day they brought another, I ate it. On the third day they made me inject wihtout practice. Later that day I asked for an organe to practice on. I ate it.