After a recent invite to talk on this topic again .. sharing a blog post from a few years ago on cruisinwithcricket.blogspot.com
Thriving with Retinitis Pigmentosa
Several years ago I had the opportunity to present on the topic Tools for Coping with Retinitis Pigmentosa in Chicago. I felt like I was sharing some positive tools in the adjustment process. A few minutes into my presentation a woman spoke up and said something that I have always remembered. I don't want to cope. That sounds like I am just getting by. I want to thrive. I thanked her and wholeheartedly agree and shifted my presentation to thriving tools.
Today Cricket and I went to the Moran Eye Center for an eye exam. I have incredible support in my home, but chose to go alone to this appointment. It becomes a looong appointment by the time they do all the work and didn't want Steve to have to take a day off for this -- he has done so many, many times and will do so in the future many times, I'm sure. I would much rather us be able to take the late afternoon off tomorrow and get on the bike. Perhaps, that is thriving.
Some thoughts on the appointment today. I sat in the waiting room with many other people visiting a retina specialist. Spending all morning together we got to know each other infact, when one patient finished he said good bye to those of us in the waiting area. I visited with one patient - his first visit just learning he had a degenerative eye disease. I listened to his story and hopefully offered some hope that he would indeed thrive and continue to enjoy life. His wife indicated to me -- you seem happy. Perhaps, that is thriving. Another woman had a friend that had RP and didn't know much about Guide Dogs - I offered my number to share and told her many stories of the joy of a guide dog. Perhaps that is thriving. We wished each other well as we went into our eye exam, back for photographs, over to get a visual field , or an injection. It seemed we had a sense of understanding of what this journey was like and were cheering each other on. We were thriving in our own way. The retina specialist encouraged me to be healthy and active and take my omega-3. He liked that I was running. He liked that I was using my iphone when he came in the room :). I shared some of the unique symptoms that I have been experiencing and he confirmed that is part of RP. I liked that and felt validated.
The cab picked me up. He was impressed with Cricket's ability to find the door. He asked me about my eyes, and I said I had an eye disease called Retinitis Pigmentosa. He said -- disease -- oh that's bad. (It was funny because generally I don't use the word disease rather condition and after his reaction I know why!) He was chatty and soon was telling me about he just had given up on his dreams. I said - oh that's sad! I encouraged him to not give up on his dreams! He said he was here just making the best of each day. I told him he was resilient. He liked my word :). I realized I missed a little bit my days of riding a cab frequently in the city. As he dropped me off at Gateway in front of the cookie shop for a raspberry cookie I asked him to wait a minute. Cricket and I ran in (well the best we can run in :) and bought him a raspberry cookie.
Time to crash for a bit after all those bright lights and various drops put in my eyes. Perhaps it is thriving to also take some down time after an exhausting day :).
Today Cricket and I went to the Moran Eye Center for an eye exam. I have incredible support in my home, but chose to go alone to this appointment. It becomes a looong appointment by the time they do all the work and didn't want Steve to have to take a day off for this -- he has done so many, many times and will do so in the future many times, I'm sure. I would much rather us be able to take the late afternoon off tomorrow and get on the bike. Perhaps, that is thriving.
Some thoughts on the appointment today. I sat in the waiting room with many other people visiting a retina specialist. Spending all morning together we got to know each other infact, when one patient finished he said good bye to those of us in the waiting area. I visited with one patient - his first visit just learning he had a degenerative eye disease. I listened to his story and hopefully offered some hope that he would indeed thrive and continue to enjoy life. His wife indicated to me -- you seem happy. Perhaps, that is thriving. Another woman had a friend that had RP and didn't know much about Guide Dogs - I offered my number to share and told her many stories of the joy of a guide dog. Perhaps that is thriving. We wished each other well as we went into our eye exam, back for photographs, over to get a visual field , or an injection. It seemed we had a sense of understanding of what this journey was like and were cheering each other on. We were thriving in our own way. The retina specialist encouraged me to be healthy and active and take my omega-3. He liked that I was running. He liked that I was using my iphone when he came in the room :). I shared some of the unique symptoms that I have been experiencing and he confirmed that is part of RP. I liked that and felt validated.
The cab picked me up. He was impressed with Cricket's ability to find the door. He asked me about my eyes, and I said I had an eye disease called Retinitis Pigmentosa. He said -- disease -- oh that's bad. (It was funny because generally I don't use the word disease rather condition and after his reaction I know why!) He was chatty and soon was telling me about he just had given up on his dreams. I said - oh that's sad! I encouraged him to not give up on his dreams! He said he was here just making the best of each day. I told him he was resilient. He liked my word :). I realized I missed a little bit my days of riding a cab frequently in the city. As he dropped me off at Gateway in front of the cookie shop for a raspberry cookie I asked him to wait a minute. Cricket and I ran in (well the best we can run in :) and bought him a raspberry cookie.
I wrote more about this experience in my book: Look up, move forward.
