When it comes to people having scleroderma I consider myself somewhat lucky. Lucky in that, unlike some people, I was never given a warning date or death sentence in regards to my condition. Actually, I was given the opposite of a death sentence. Within a couple years of being diagnosed with morphea, a localized version of scleroderma, I saw a leading American doctor in the study of scleroderma. He told my family and me that the morphea would most likely burn out in a couple of years. Many morphea cases stop after three to five years. Now, like I wrote, he said Most Likely. He never said it would. In my opinion that’s very important because he wasn’t giving false hope. Instead, he was giving me information regarding his experience with morphea patients. You may ask
"Well, why do you consider yourself lucky? Especially, when year five has long since gone and you are on year 10 of being ill."
Good question. The answer is not because I don’t have systemic scleroderma although I am thankful that I don’t. Very thankful. It is because I am a slow learner. Many people are not afforded the amount of time I have been granted to experience this condition and life. Now, I’m not saying I am happy with being ill for over10 years and having morphea for over 9 but I am saying that unlike some others I have been able to learn a lot on my journey.
One of my most important learning experiences was granted through the work I did with Dusty’s Place. I was 23 years old when I began Dusty’s Place. By the time I stopped the program I was 25. In between that time I experienced too much to begin to write about here, from hospital visits, to my body healing and my health digressing. Yet, out of all the things that I went through, the most important would have to be the changes I experienced in my personality. It’s my opinion that I changed partially due to Angela and Kim’s assistance as well as my own willingness to change. It can be difficult at times to stop and say to yourself
"You need to calm down because you are stressing yourself out right now. You are accomplishing nothing."
To assess a type of your own behavior as being destructive to your health is not so easy. First, one has to identify it, then acknowledge it and then work on the change. It may sound simple in a sentence but anyone who tries to change for the better knows it’s not as easy as 1, 2, 3. Due to some movies like "What the #@%$* do We Know" and books like Norman Cousin’s "Anatomy of an Illness" or Candace Pert’s work as a neuro-scientist, there is an increasing amount of attention being paid to the mind/body connection. I’m not going to write and say "It’s all in the head" because I actually believe; now more than before, it is not. However, I would be doing myself as well as everyone else a disservice if I were to write that behavior does not affect health. And it was through my work with Kim and Angela that I began to understand.
As far as patience is concerned, I can’t think of anyone with more of it than Kim Leal. I’m not saying this just to say it, as well. Through the years I have communicated with Kim she has always given me positive reinforcement when I felt like my days were numbered or that I was just too screwed up to get ahead. Even though my family wasn’t in the program she would often speak to my mother, trying to help her understand the complexities of our familial situation and my personal. Kim constantly encouraged me to identify certain personality traits that hindered me from progressing and kept me from being happy. Some people may read this and say
"What does being happy have to do with being ill?"
Personally, I would say a lot. It can be hard as hell to have a smile on your face when you have 5x5 inch gash wounds in your feet or hands but it makes it a lot easier when you are maintaining healthy relationships and a positive mindset.
Since being released from the hospital two years ago my health has steadily improved. I went from being 111 pounds to around 165. If I have to, I can walk for hours, where as before I could barely make thirty feet. I used to sometimes lie in bed all day but now I’m barely home, either at work or writing constantly. One of the reasons for this is prednisone and some other medications. They have helped me regain part of my health and I honestly am very thankful to use them. This is coming from a man who used to think they were the devil’s tools. Only if misused. Sometimes we need these medicines and to ignore them is foolish. Just as foolish, is to ignore the need to access one’s behavior and thought patterns. What I learned from Dusty’s Place is that the mind plays a key role in improving your health, which in turn improves your life. I hope you consider these words. Best of luck.