Joe and Dana Bacon’s story is a story of hope. They personify all that is good in this world: love, strength, determination. They make you BELIEVE anything is possible. The Foundation for Peripheral Neuropathy spoke to Joe and Dana about their life, their inspirations, Dana’s battle with and acceptance of small fiber neuropathy, and Joe’s upcoming Race for a Cure at the Baltimore Marathon.
FPN: Joe and Dana, tell us a little about yourselves:
Dana: I am 31 years old and a stay-at-home mama to an incredible little boy named Calvin. I have a bachelor’s degree in psychology and a master’s degree in human resource management. I enjoy painting, baking, and playing with my son.
Joe: I am 30 years old. I grew up in a small town at the top of the Chesapeake Bay and now reside in the first state (Delaware). I am a proud husband and father and love the outdoors. During the work week, I am an Account Manager for a commercial landscaping firm called LandCare where I get to spend a lot of time in beautiful settings in the region! In the past few years I have shifted gears to live a much healthier lifestyle and rekindled my love for cycling and distance running. Dana is my wife and my NorthStar!
FPN: What is your connection with peripheral neuropathy?
Dana: I have small fiber neuropathy. I was finally diagnosed about a year ago at Johns Hopkins, after seeing doctors for over 15 years and getting nowhere. I give credit to everyone at Johns Hopkins who gave me great care as well as answers I couldn’t get anywhere else.
I have been affected by this condition since I was a little girl. As far back as I can remember, I have had pain in my feet – however, the condition has progressed significantly in the past year and a half. Now, the pain is not just when I’m on my feet, it’s constant.
I take medication to manage the pain, and I have to use an electric scooter or walker when going places. I have had to make many changes in my life to accommodate this condition, and I can’t do many of the things that I used to enjoy, such as hiking or taking my son for walks in his stroller.
Joe: My wife battles SFN daily. She is a rock-solid butt kicker! Her devotion to evolving and living her best life is contagious and helps me remain focus on my goals in life. I am so grateful to have such a positive soul and graceful person to be the mother of my child and wife!
FPN: Dana, what helps you manage family, work, and just life?
Dana: My first answer to that is my husband. Joe does everything he can to make my life easier and help keep the pain at a minimum. Not only does he take care of me and all of my medical needs, but he keeps me feeling positive every single day. It’s easy for me to get depressed when I can’t do something or I’m in terrible pain, but my husband reminds me to focus on the wonderful things in our lives. I can’t imagine having to face my challenges without him. I also have a huge support system made up of my family and friends. I’m lucky to have so many people that care about me.
My second answer to this question is the little changes that we have made to my life to make it easier. Because my pain has progressed so much, I have had to adapt in many ways. For example, I have a bench in the shower so that I don’t have to stand. Showers used to be so painful for me. I also have a rolling stool for the kitchen so that I can cook and bake without having to be on my feet. Little changes like this make my life so much easier.
Joe: I’m going to leave this one for Dana. I find deep joy in creating an easier and more positive space for my family to live within.
FPN: Joe, how did you get involved with the Marathon circuit and your idea to run for a cause?
Joe: Running is both mental and physical. Long distance training can be arduous and even painful at times. When I decided that I wanted to run the Baltimore marathon this year, I thought it would silly to suffer without a cause. After all, the pain and discipline that I’m enduring could somehow benefit many others. I run for many reasons and benefits.
When the going gets tough, and the fatigue, and walls set in, is the time I run for Dana. I run at these times for her because I know she would want me to keep going. Running this marathon will be a challenge. However, it’s all of the leading up training that is the real gritty part. My goal was to create more awareness for peripheral neuropathy and small fiber neuropathy and try and raise funds for further research.
There are so many people who deal with peripheral neuropathy and small fiber neuropathy who maybe loved to run at one point in their life. I’m also running for them!
FPN: For both of you, What helps you think, I can do this…whatever this is?
Dana: Firstly, my son and my husband. Now that I have a child, I can’t allow my negative thoughts or depression to take over. Calvin makes me want to be the best person that I can be and prove that anyone can do anything they set their mind to. I also don’t want anyone feeling bad for me – I want to be regarded as someone who is strong and capable. My disability doesn’t keep me from living the life I want to live. I would love to be an example of strength for others with disabilities.
Joe: My answer is simple. It is my wife. Dana doesn’t allow the scooters, walkers, or wheelchairs to hold her back. She can do it. She may just do it differently.
FPN: What would you say to people who are looking for inspiration to live their best life, despite their PN?
Dana: It took me a long time to accept the fact that I was stuck with this horrible, progressive condition and there was no cure. I was in denial for a long time, still trying to do the activities I used to do, and then paying for it later. I would tell anyone with PN to just try and find your new normal instead of trying to be the person you used to be. You’ll grieve your former self, but your new self can be great too. Make the changes necessary to make your life manageable.
Joe: Be the three-legged dog who wins the race! Doing it differently is cool!
FPN: What would you love people, with and without PN, to know?
Dana: There is no shame in disability. When I first started using my scooter and walker, I felt so embarrassed. My self-confidence immediately shrunk and I felt like a lesser person than the people walking around me. The stigma around disability and mobility aids has to end. We are all human beings, some of us just need a little extra help getting around.
FPN: You are such an inspiration – what motto do you live by?
Dana: Make your life count. I refuse to let my life fly past me while I sit around in pain. This is the life I have, so I better make the best of it.
Joe: Be Present. Work harder. One day at a time.
Go Team Joe and Dana!
Joe and Dana face life’s ups and downs together, as the strong team that they are. Now Joe is taking it one step further, inspired by his wife’s perseverance and determination, Joe is taking to the streets for the Baltimore Marathon on October 19, 2019. Joe is Racing for a Cure for Peripheral Neuropathy, with all funds raised going to the Foundation for Peripheral Neuropathy.
Joe and Dana, thank you!
You can contribute to Joe’s Race for A Cure for Peripheral Neuropathy by donating here. All proceeds go to the Foundation for Peripheral Neuropathy.
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