Every now and then, I ask myself: why am I doing this? Maintaining this website and writing the blog takes time and effort, and I don’t get paid for it. It costs me money to keep this site running. After 2 years of living with CRPS, I have been in remission for 9 years. Why am I still doing this? Should I move on with my life? But every time I arrive on the same answer.
When people talk about the cost of CRPS, they mostly discuss the cost of treatments and insufficient coverage by health insurance. In my opinion, the true cost of CRPS far exceeds the monetary costs of treatment. The true cost of CRPS is the cost of a destroyed life of a patient and the price paid by the patient’s family.
Two years ago, I received a letter from a CRPS patient. A professional bass player, he developed CRPS in his right hand after an injury. As one of the most sought-after and highest-paid bass players in his country, he could no longer play. He lost his income, his career, and his place in a prestigious professional circle. He could no longer support his family. A young man, he was contemplating suicide. At that lowest point in his life, he found this website and sent me a message. It was a cry for help. I responded with a few words of encouragement and some tips on where to start. Later, we exchanged a few more messages, and then he disappeared.
A year later, he wrote to me again. Turns out, he took my advice to heart and eventually defeated his CRPS! He returned to playing professionally, training at the gym “like an animal” (his words), and loving his life again. He even started composing music, something he hadn’t done before.
This is what he wrote: “I want to tell you that u made me believe that there was a way through this hell. Also, I want to thank you, because the progress I made started from this page and from Youtube videos where Tamara and Rita talked about their CRPS story”.
Those stories are rare. I get letters like that only a few times every year.
More often, I get to read the stories of CRPS hell and pleas for help. I promptly respond to each one of them with a detailed message. I am almost certain that I will never meet people who ask for help. Sometimes, they don’t even bother to say “thank you” after receiving my message.
But some of them succeed and write to me about it. That’s when I feel a renewed sense of purpose and an understanding that it is not time to shut down this website and move on with my life. I post a new story on the Success Stories page and celebrate. Each person’s life saved from the hell of CRPS is worth fighting for.
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