Fellow writers will understand this: When I was first diagnosed with Psoriatic Arthritis and given my prognosis, my first thought was for my hands. I am a writer.
To give a brief explanation, PsA is a destructive form of arthritis sometimes so similar to Rheumatoid Arthritis that they can be hard to differentiate, especially if you don’t have classic psoriasis. Coupled with additional autoimmune diseases, it has been an aggressive and sometimes frightening addition to my life.
During the first few weeks, my thoughts dwelt often on my future. I found I could accept, for the most part, the concept of possibly moving around in a wheelchair, or needing special aids and equipment to live. What I could not accept was the idea of losing my hands, either for typing or longhand writing. I have a voice recognition program. It’s not at all the same.
It’s been a year. I have had to adapt what type of pen I use and how I hold it, but I still write longhand on a daily basis. I must limit my time on the computer keys and live with the destruction of my 80 wpm 2% error record. I can live with this because I can still write how and when I want and need to.
My forefingers show the most deterioration; they have shortened and curve sharply. The other fingers are beginning to curve noticeably as well. The large thumb joints are probably the most painful, but I can manage with them stuck out straight.
For all the destruction started in my hands, I was almost glad when the disease moved into my spine. Though the pain is breathtakingly intense, my hands are getting no worse for now. I know on a deep level that I can live with many losses. The ability to hold and use a pen is not one of them.
There are two quotes from Isaac Asimov that have provided both comfort and inspiration. The first:
If my doctor told me I had only six minutes to live, I wouldn’t brood. I’d type a little faster.
And the second:
I write for the same reason I breathe – because if I didn’t, I would die.
And then there is:
We do not write because we want to; we write because we have to.
A clear and deep understanding of just how vital writing and the writing process are to me was not revealed until there was a chance it could be taken away. It was the catalyst for me to evaluate my entire life, including the promises I made to myself during the 15 years I lived as a single parent and had so little time. It helped me prioritize my needs and desires clearly and provided the impetus to make changes. It is the reason I blog on line and the reason I started The Business.
I don’t know what the future holds. I don’t know how aggressive these autoimmune diseases will get without proper treatment and medication. What I do know is that I am newly grateful every day that I am able to write in my journal or type at the computer. I also understand that I must make the most of every hour my hands are doing well and work my life around the most important priorities. I am experiencing the most productive and inspired period of my 30-year love affair with writing.
I find I am grateful for this disease that will eventually steal my pen from me. It has given me the coming years of concentrated effort, enjoyment, and productivity in my writing life that I might not otherwise have had.
Is there a moral here? Yup. Never put off your dreams. Pursue your dreams and passions every single day in whatever way you are able. Do not put important things off for the vague future. Make the most of the time you have today and live with Ray Bradbury’s “zest and gusto.” If there comes a time your dreams are threatened by circumstance, injury, or illness, you will have already built momentum and memories to help you continue on in them.
Don’t just dare to dream. Pursue it with passion and energy.