Listen to our founder, Dax Francis, speak about making your struggle the empire upon which you sit. (Full text below)
Chronic illness is becoming a more prevalent problem, and by the year 2020, half of all Americans will have some sort of chronic illness. This could be diabetes, heart disease, cancer, high blood pressure, and the list goes on and on, but chronic illness is not something that is always noticeable, and it is rarely something that people will openly talk about, and that is why I’m here today. To help you get a glimpse into my life dealing with chronic illness, and how I and so many others fight every day to make our struggle the empire upon which we sit.
My story with chronic illness began when I was twelve years old when I was diagnosed with a rare form of kidney disease called FSGS, which effects the way protein is filtered through the kidney. There was no known cause or cure and it felt as if overnight school, sports and friends were replaced with doctors, treatments and hospitals. Everything that I had used to define my life I could no longer do, and my dream of playing in the NBA suddenly seemed shattered.
To fight the FSGS I underwent a regimen of infusions every other day with the side effects being severe weight gain and acne. I felt uncomfortable in my own skin and dreaded the days I did go to school, because few understood what my life had suddenly become. I also was never one to talk about my feelings or experiences because I thought that is what men were supposed to do. It was not until later that I learned it was okay to cry and have bad days and curse the world, and it is okay to not be like everyone else because what we go through as chronic illness warriors truly makes us capable of changing the world.
Shortly after I graduated high school is when I had to begin dialysis. My first week can only be described as hell, in both a physical and mental sense. I felt trapped, scared, and angry. Dialysis is a medical treatment in which your blood is processed through a filter to rid it of toxins and do the job that the kidneys normally would, and without treatment death is all but certain. Due to the failure of the kidneys most dialysis patients can only drink approximately 1 liter a day, and anything over that can cause fluid to back up into the lungs or extremities. The toxins that build up can cause brain fog, and it can become hard to concentrate or remember basic tasks, and every day is a constant fight for energy that you simply do not have. You can pull too much fluid off during treatment and lose consciousness, and during my 1st week that happened to the gentleman sitting next to me and his heart stopped beating and he fell to the floor. With a rush of nurses into this small unit for dialysis I watched as they did chest compressions on him and wheeled him out on a gurney. I did not want this to be my life, because it was dawning on me how much it had truly changed. This wasn’t simply an infusion or anything remotely like that. This was torture. Slow, painful torture and I became enveloped in an abyss of depression and sadness.
My struggle continued, month after month, year after year, and 3 days a week you would find me chained to a chair for 4 hours each time just so I could do it again in another couple days. I felt as if the only reason I was going to dialysis was so I could continue to go to dialysis. I saw no light at the end of this tunnel, and I saw no path to my future, and then after 2.5 years chained to that chair I got a phone call one early morning at 5 am. It was the University of Utah Hospital, and they had a kidney for me and needed me to be there in 2 hours. I was on my way in an instant, and on the way I called my dialysis center and boldly stated I would not be coming in today. Worriedly, the nurse asked if everything was okay to which I replied, “I’m great, I’m getting a kidney!!”
With a new lease on life because of a young man from Arizona named Brett, whose family made the selfless decision to save a stranger I was ready to find my place in the world and participate in everything that I had been missing out on. I enrolled in college again and knew I wanted to be a Social Worker, but less than a month after the kidney transplant FSGS had recurred and I had to resume treatment. I replaced dialysis with plasmapheresis for the next 4 years as I tried to achieve my Social Work degree. Plasmapheresis was just like dialysis except they would separate my plasma and infuse me with fresh frozen plasma in hopes of combating the FSGS, but it was only somewhat effective.
I ended up dropping out of school 6 credits shy and fell into a pit of depression once more. I wanted everything to end at this point and I decided that when the time came that Brett’s transplanted kidney failed I would forego treatment and simply pass on. I was tired of having an existence in which it felt like my purpose was to experience pain in new ways every day. I was simply tired of fighting for tomorrow when I couldn’t even enjoy today.
Everything changed though when I met my partner, Missy, and because of her compassion and empathy, she was able to see the person inside that I could be if I realized that everything I had been through in life made me more, not less. She made me realize that the pain I had experienced was not for nothing, but that I could use it to make a difference in the lives of others and help them feel not so alone. She allowed me to love myself, and without her my full potential could not be realized. Because of a little compassion, empathy, and kindness I was able to become more than my illness and disability, and when the time came to start dialysis because Brett’s kidney had finally reached End Stage I knew without a doubt that I would start because I had someone who loved me, and wanted me to continue fighting, and because of that I knew I would fight forever.
With Missy on my side I finally felt free to be myself, and now I had someone to help me fight for a more positive future. I enrolled back in school to get my 6 credits, and I fought my health for a semester to go to class and walk the campus, but I was able to achieve my goal and finally get my Degree in December 2016. I knew because of being on dialysis, however, that I couldn’t be the social worker that I wanted to be or that people deserved.
And then with the 2017 election I found myself mired in negative toxic energy, and I found myself fighting with others and seeking out arguments. I lost sight of what was important in life, and I knew that I wanted to have a more positive future, and so I made a goal to simply be more positive and put aside the childish pettiness of politics and simply live and promote a positive message despite being on dialysis. And so, I started filming videos while I was receiving my dialysis treatment in center, surrounded by other patients just to let people know that they weren’t alone. I wanted to let others know that it was okay to have bad days and cry and curse the world, but we should never forget that we are warriors, and what we go through matters. I wanted to be the support that I wished someone had been for me when I was a child and young man trying to find my way in a world where I felt so alone. I never wanted someone to be in the situations I put myself in because they were depressed and alone.
The support I received from my first video truly inspired me to do something more with my talents and abilities, but the problem is there is not a lot of demand for a disabled, 27-year-old on dialysis, but what if I could create the demand not just for people like myself on dialysis, but chronic illness as a whole? What if I could bring about the next-generation of business centered on helping people and not simply making a profit? What if I could bring some compassion, empathy, and kindness to the world? What if I could do all this while being on dialysis? I truly believe that it could help change the world and inspire not only chronic illness warriors, but anyone who takes the time to listen.
I wanted to provide inspiration and support for the underserved community of chronic illness, and I wanted something original that would help bring awareness to all the different areas of chronic illness. I wanted to create a symbol of hope and a shield of armor for those who fight to survive every day. And so, Ivye Wear was born when I designed comfortable, accessible clothing for chronic illness warriors to help with something as simple as a blood pressure, to as complex as chemo therapy.
When I merged my thoughts and beliefs into being a positive person and being the change I wished to see in the world, I was able to make my struggle the empire upon which I sat and become the person I was always meant to become. My dialysis chair suddenly became my throne, and from it I could rule the world. Because of the pain, because of the loneliness, because of the depression I felt as a child and young man I had the strength and wisdom to make a difference, and it is exactly what I went through that makes me capable of changing the world today, as it is your experiences that make you capable of doing the same.
So if you are a chronic illness warrior out there and are wondering if you have a place in this world, I’m here to promise you that you do. We all have a place in this world, and it is up to us to share our stories of strength and wisdom with the world and make our struggle the empire upon which we sit and create a more positive future for the next generation because I truly believe that we are the change the world has been waiting for. Thank you.