Tsunami

I have a new friend in Switzerland named Bengt, who also has ECD (and his own collection of odd dysfunctions that seem to come along with it). Bengt and I Co-chair one of the committees serving the ECD Global Alliance. I had the opportunity to speak to him yesterday for quite some time using Skype and it turns out he was diagnosed with the disease about the same age I was. In his case though he was the first person in his country diagnosed Erdheim Chester Disease. 

Bengt speaks what he calls Swenglish (Swedish English). He says this because he has a strong accent, an accent which many people have difficulty understanding. It just so happens though that I speak Swenglish!

My talk with Bengt reminded me how much wisdom there is within our own disease community. For example I was telling Bengt how frustrating I find the notion of harboring this beast (ECD) withing me. That it troubled me to think that at any moment it could start to grow again and there was nothing I could do about it. 

Bengt said, "This disease is like running from a Tsunami." 

The implication being that one is fine as long as they are running, but as soon as you stop the wave will get you.

I said, "It's exhausting though...running all the time."

To which he replied, "what choice do we have?"

The answer of course is run (go to the doctor, take the shots, fight the insurance company, order the pills, see the specialists, do the blood work, support research into a cure, rest) or stop and succumb to the disease as it grows unchecked. 

The answer seems obvious, right? Things become less clear though when one starts to get tired from running.