Living With Disease-You Are Not Alone

4 years ago




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The Michael J. Fox FoundationBy living with a disease, I've learned honesty is the best policy. Although I don't usually offer up the gross and detailed symptoms of my disease to passersby, if they really want to know, they're going to get the truth.

Over a year ago, my friend and songwriting partner, asked me to sing with him at an eatery on the Biltmore Estate. We perform as a duo, with my partner on guitar and vocals, and me on vocals and light percussion. Throughout our shows, we are known for incorporating our original song material with the cover songs most people expect. When we perform it comes from the soul, and all those things we want to express just come pouring out in the music. After singing one of our original songs, I glanced over at the bar to find a man and woman engaged in our music. After a couple hours of playing, we decided to take a break, and I felt compelled to speak to the smiling couple. They looked pretty surprised that I stopped to ask them how they were doing, and if they were enjoying the music. They both spun around, and said, they didn't know how I could get up there and sing that way, but they were really enjoying their first day out in a long time. I looked back at them and replied, "it is my first show in a long time since I came out of remission with my disease, and it is taking every bit of my energy to put on this performance today". I followed that by saying, "so it means the world to me that you are both enjoying our music, as the music is so healing to me". What spawned from my being open and truthful about my living with a disease, was a comforting conversation between three strangers, about the struggles of living with an illness. As it turned out, the gentleman was encouraged by his wife to go out to eat, as he had been struggling with a disease that was keeping him from being able to live his life happily. Even though they couldn't really afford to go out, they made a decision based on a gut instinct that going out was just what they needed most. They confided in me about their struggles with the gentleman’s disease and how it had affected both their lives. I shared similar experiences and feelings on the matter, and told them, they were not alone. Suddenly they expressed to me, that in coming out to eat, they must have been meant to meet me. I realized, that by being myself, and being honest about how I felt, I had just comforted someone in their darkest hour.

You don't have to be a licensed therapist to help someone through their struggles, whether it has to do with illness or not. I feel it is so easy for us to hide behind our smiles on social media and create this fantasy world of "Happy Days and it's a Wonderful Life". The reality is we should share our struggles, just as much as our triumphs, because in reality, one does not exist without the other. When it comes down to it, people are going to relate to you more, when you tell the truth about yourself.

I know first hand, what it is like to have dreams and goals, and for those dreams and goals to come crashing down because of illness, and all the symptoms that come with it. It takes everything I have sometimes, to get up, set my goals, to succeed in my life, due to a lack of energy and other symptoms. When you live with a disease; which most of us are, we are reminded everyday, that our lives could be cut short, tomorrow we could be unable to get out of bed, or we could lose everything we have, all over again. I understand those feelings, as I have them every day. The good news here is you are not alone, no matter how alone you feel. Most of us are out here living our lives, seemingly without a struggle, but internally or physically, struggling. By being honest about our disease, and our struggles, more people will become less afraid to live in this, “success driven" society, and we will contribute more than we ever dreamed.

As a performer, I was so afraid for people to know that I was sick, and living with a disease. I was afraid they would think of me as ugly, or broken, and that I couldn't be successful. Some of the most successful people lived and live with diseases. If you go online right now, you will find a long list of presidents and celebrities all having lived or currently living with some type of disease. So, having an illness does not always impact our lives in a completely negative way.

Now, having a disease does not make any of us "special", from anyone else.  Truth is, most people in this world are living with some type of disease, and are trucking along just fine. What it does do, is gives us an opportunity to use our struggle for the good of ourselves and others. Our honesty with ourselves, and others, will allow us to set the realistic goals and boundaries within our every day lives. By doing this, we give ourselves and everyone else, hope, in that our dreams are reachable, no matter what. 

Don't even think about the fact that keeping your health insurance and doctors bills paid is a full time job. I know it, and you know it, but use this moment to except that we are our own advocates in life. Our honesty and acceptance of our own circumstances will help us in standing up for our health, our life, and those bullies who just don't understand why we are the way we are. This may sound cheesy, but once you make the decision to be honest and stand up for yourself, a lot of other things will work themselves out in the wash.

If you are wondering, “who the heck am I”, to give my advice on such a sensitive subject, then remind yourself of these things: Diseases and illnesses do not discriminate against age, color of skin, or social status. You could be talking down to someone younger than you, right now, who has been through more than you could ever imagine. We have to remember to have compassion for ourselves, as well as those around us. Sometimes we think we have all the answers, and we sure like to spout them off to everyone who will listen. This time, let’s listen, and share our own experiences with illness to those who just simply need the reminder, "I am not alone".



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