What’s in a word?
Who would have ever thought four seemingly simple words could literally change your life? The first three don’t seem particularly menacing (per Webster’s online dictionary):
1. You: the one or ones being addressed —used as the pronoun of the second person singular or plural in any grammatical relation except that of a possessive -- you may sit in that chair
2. Have: to hold or maintain as a possession, privilege, or entitlement -- they have a new car
3. Parkinson’s: A last name – Dr. James Parkinson
If you stop right there, clearly the conversation would not have a significant impact on your life, but Parkinson does have a ring to it … I think I have heard that before…
4. Disease: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms -- infectious diseases
Bam! There it is … that’s where I have heard Parkinson before, it’s associated with the fourth word, disease!
Wait a minute, disease sounds horrible, and I think the Dr. is talking about it applying to me! Yep, I am sure she is. She is looking right at me, not at my wife.
Processing
My mind is racing. Parkinson’s is something old people get, right? Surely, she is not talking to me. Hold on, Michael J Fox has Parkinson’s, doesn’t he? Maybe she IS talking to me.
I think I now hear her say there is no cure. I also think she said something about progressive. Disease was bad enough, now it is an incurable, progressive disease? “How long will I be able to keep driving?” I manage to choke out. The answer was something between a long time and there is no way to know for sure. I can’t be certain, it was becoming difficult to concentrate.
Over the next days and weeks, I try to figure out what on earth this means to me and my family. I quickly find myself wishing this was something different. I keep focusing on the incurable, progressive reality of the disease. I begin to convince myself the progressive part will be fast and furious. I become anxious and consumed by negative thoughts. Before long, I declare to myself “I wish it was cancer instead”. “At least there are treatments that may impact the disease, not just manage symptoms. In the end, it may take your life, but there is some resolution.” I am not saying these thoughts were rational or even things I really believed, but I was really having a hard time with the concept of there really being nothing to do to cure this disease that has been placed in my lap.
Are there two sides?
It took almost two years, but I began to fully accept the disease and began to realize there may be positives that can come from this. Don’t get me wrong, I am not thankful I have the disease (beyond it not being something worse). But, what can I do to keep this from being a complete loss?
First, the obvious … there are many negatives to Parkinson’s. I don’t need to dwell on those. Suffice it to say, the incurable and progressive nature of the disease tend to figure heavily in the negative things that come with living with Parkinson’s.
However, the positives are not necessarily as obvious. A few highlights:
I find myself living in the moment, living today – not the past or not the future. If I am honest, I did not do a good job of this before I found out I was living with Parkinson’s. I would often be thinking about something else, rather than being present and in the moment.
I have met some amazing people I would have never met. People that have inspired me to live a better life. People I learn from every single day. These are not all people living with Parkinson’s, but many are.
I do a better job evaluating what is important in life.
I take better care of myself. I am in much better physical and mental shape. While I may move slower and I even may think slower, I know I am in better shape because of the priority I put on it now.
I have been able to help others in their journeys. Rock Steady Boxing provided me with the platform to help others get control of their lives. I am forever thankful for this program and the opportunities it provides me.
Conclusion
I will never be happy I am living with Parkinson’s, but it is OK that I am.
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