David: During my photo shoot with Jade, I bought a frame with a single word and wanted to make sure we featured it. The word was Unique.
After the shoot, I shared the significance. This goes back to one of my darkest days, when I was 29 and found out I was infertile.
I began to realize in that year that I was out of remission. I have a rare blood vessel disease, a form of Vasculitis known as Granulomatosis with polyangiitis (Wegener’s). It is not hereditary or contagious. They don’t know why people get it. It is not curable but doctors have found success getting it into remission.
I was only 20 when I was originally diagnosed and was in my third year of college. It took months to finally figure it out. I was gravely ill and lost a tremendous amount of weight. My body was fighting itself and killing me with it.
The treatment requires a combination of oral chemotherapy to lower my immune system and prolonged doses of the steroid Prednisone to counteract the inflammation in my body.
I achieved remission after three years of treatment. The side effect of the medications caused me to rapidly gain all of the weight back and much more, leaving my body covered in stretch marks around my stomach, chest, and arms.
I spent 6 years in remission and was proud to have lost much of the weight but never took my shirt off around anyone because I felt humiliated by the stretch marks.
At 29, I noticed the symptoms of my disease starting to reappear. I was crushed. I knew this meant more chemo and steroids, more bloating and weight gain, more stretch marks and shame.
Before starting the chemotherapy again, my doctors recommended if I wanted to have children that I should consider banking my sperm. When the disease was first active, I was only 20 and was so sick and did not heed their warning. This time being older and thinking about the future, I went ahead and followed their advice.
This brings me to that dark moment. I remember the day I called to get the results from the sperm bank. I stood at a payphone about a week before Christmas, holding a slip of paper, ready to take notes on what I needed to remember. I remember the doctor saying “We looked for sperm, but there was none. This is odd. Usually we would expect to find dead ones but not none. There’s nothing to bank.”
In a shocked state, I wrote only one word on that paper I held.
The day I learned that I was infertile. The day I learned I would never be a father. The day I learned that my bloodline would stop with me.
I kept that paper as a reminder of that pain for some time. I have no idea where it is now but still know the memory of that experience, of writing that one devastating word on a slip of paper.
I was able to regain remission again after another three years, and had a lot more weight and twice as many stretch marks to remember it. And although I’ve maintained remission, I have been haunted by the fear that I will eventually lose it again.
Fast forward to today. I have been doing the hard work of reclaiming the power I’ve given to my fears.
I was referred to The Mankind Project which has helped me to challenge the beliefs I formed in those darkest days and learn new ones to replace them. I learned new words to describe myself, ones that held unbelievable power: Authentic, Honest, Open, Trusting and Fearless.
I am able to give up the belief that ‘I am a freak’ and instead realize that ‘I am unique.’
I can’t lie. The anticipation of the photo shoot was both terrifying and exciting. It was one of the only times in over 20 years that I took my shirt off around someone else. And for the purposes of being photographed no less.
Halfway through the shoot, I opened my arms as wide as possible to feel a moment of complete openness. In that moment I felt no shame, no judgement, and no burden.
And Jade captured it for me to recall any time I need to.
It was a huge step out of my comfort zone, one that I needed to take. Sharing my story in this blog post is yet another step.
I’m still on my journey and not every day is easy, but they are easier than they have been. I realize now that if I can remember my darkest days, then it means that I survived them. It means I am a survivor. A warrior.
Thank you Jade for seeking to help others and putting yourself out there so that I could find you.