This has been quite the year…for us all. There have been so many things we’ve had to deal with in one way or another. There has been Covid19; at first, we were told back in late January that it wasn’t really a big deal, but that didn’t seem true. Then come late February it was definitely not TRUE, and by March we were all sitting in our houses, working from home…we were quarantined. There has been major unemployment, major illness, major sadness, it has been a time like no other, and we’re still living through those times. It’s especially difficult for those who are have immunodeficiency disorders-worried if we just step outside for the shortest bit that Covid might grab on to us. Then if that wasn’t enough to deal with, we had/have a myriad of other things. Depending on where we live, there were floods that were worse than ever before, fires worse than ever before, there were and are environmental issues, medical and financial situations worse than either we’ve lived through in a long time or lived through ever before. My Brain Matters fundraiser is smaller this year because the events we work on having as a part of our auction…needed to close. All these issues have made it difficult to know which way to focus our usual attention and concerns. I know from my past that the thing that has stood me in good stead is to try and stay positive. It’s a big part of the reason I believe I am still in the world. It’s a part of my remedy. You have to stay in the game to be able to stay in the game.
Besides all the worldly frustrations, I have been dealing with an additional personal one. I have been really, really hoarse since April, it was just weeks after Covid was declared. I have only one working vocal cord, the other one is paralyzed (it’s one of my side effects of my first surgery) and the one that used to work isn’t really working! This hoarseness has nothing to do with Covid. Or does it? Is it the stress of it all? Is it because of my medical past? Is it new? Covid initially kept me from being able to go to a doctor in a timely fashion, the offices were all closed. Around the end of June, Telehealth calls became the newest way of seeking healing, but for someone with extreme hoarseness, phone calls were really frustrating and not helpful at all. I did the call as best as possible, but afterward the doctor urged me to come to the office when it was possible. A hoarse month or so later, doctor’s offices opened. I’ve had several in person meetings and tests…no solution yet.
My hoarseness has continued. I’m continuing to make my way up the potentially curative ladder. I research, I contact, I stay positive. There are those days though that I feel quite down. Through all my historic horrific sick days and then my mending days, and my physical loss, MY VOICE was able to mask what I have been through-if I wanted it to. Unless I wanted to tell my story, it didn’t have to be told. I’ve had certain recent comments that have brought back memories: “I’m sorry, I couldn’t understand you,” or, “can you speak up? or “you’ve been hoarse for so long, are you ok?. These “helpful remarks” remind me of when I had just gotten out of the hospital after one of my surgeries, I clearly was not well. It was incredible how bold strangers were to say things like: “excuse me, what are those staples in the back of your head?”, or “has your face always sagged like that on one side?” Yep, there are very inquisitive people out there in world. I wish that they be solving big problems too. When you appear ok on the outside or sound ok, you don’t attract the same kind of helpful attention, or at least for the same reasons. It’s like that saying: “It’s better to look good than to feel good”.
I remember to stay positive. To stay in the game! You have to stay in the game, and that goes for everyone about everything! I continue to raise money to help brain cancer research and the patients undergoing treatments. I do it because I still can. Please donate to Brain Matters 2020 Fall Fundraiser or you can Donate directly here on our website. Thank you!