To the Editor:
The unexpected happened and I, as well as my husband Walt, both find ourselves battling incurable, possible life threatening, degenerative diseases, at the same time. Finding that we are unable to do and enjoy some of the things that we had always done is unsettling and sometimes frightening.
We could give up, fall into depression and isolate ourselves, but this is not who either of us are. They say when you are fighting your hardest that’s when you find out who your true friends are.
Walt and I found out last Saturday night at the Damariscotta American Legion, just who is fighting with us. We had the most shocking and humbling experience of our lives. The American Legion held a spaghetti dinner and silent auction benefit for us, to help towards our medical expenses as well as travel expenses to specialists.
Besides having to travel for frequent medical care, follow up and infusions, I am being referred down to National Institute Of Health Rare Disease Center in Bethesda, Md. for genetic testing in the near future. This is to try to help some members of my family who are also suffering with some components, possibly from genetic mutations.
Walt has a degenerative brain disease that will require close monitoring, and eventual therapeutics. The show of support from our community as well as from people outside of the community was more than we could ever fathom.
There are so many people who organized and made this evening the huge success it was. Thank you to everyone.
All of the monetary donations that have been so generously given, from the benefit, along with the “Go Fund Me” will be in a fiduciary account, earmarked for medical expenses for both Walt and myself as we continue on our journey. We are taking life one day at a time and doing what we can. What we can’t do, we don’t worry about.
I’m having a little more of a difficult time at the moment. I’m house bound and frequently bed ridden. We have an amazing medical support system that is always there when needed. I am not giving up on finding some relief, to improve my health. So, hopefully in the not too far away future I can get back out in the public and be the social butterfly I have always been.
I don’t ever expect to physically be where I was prior to my illness, but I am still me. People asked us Saturday night, how do we hold it all together? “That’s easy,” I said. “Just look around this room. Look at the love and support shown us, and the people in our lives. We are so blessed!”
We are sailing into unchartered waters. There is a beautiful gospel song that goes “the anchor holds while the ship is battered/ the anchor holds while the sails are torn.” With all of you, our family and friends, along with our faith, our anchors will hold and we will continue to “Dance In The Rain!”
