“Leukemia,” my doctor answered when I asked him to clarify specifically what he meant by eliminating anything ‘really scary’ from the possible cause of my symptoms. His words were followed by stunned silence as my wife Elizabeth and I tried to process the weight of that word. Leukemia is perhaps the most dreaded of all cancers. For those who have been diagnosed with Acute Myeloid Leukemia the survival rate after five years is a mere 26%. Earlier in March of 2018 I was diagnosed with Crohn’s Disease, a non-contagious, auto immune disease that attacks the digestive system. I’d also lost over 35 pounds in the past year without really trying. During the following weeks my blood labs showed my hemoglobin was below normal and that my blood platelet counts were dangerously low, and dropping steadily. Healthy platelet levels range between 150,000 – 400,000 per microliter, mine were at 32,000. Platelets are responsible for clotting your blood, so low levels make even a small cut a serious situation as significant blood loss can occur. In mid-May my hematologist recommended I take a high dose of steroids over four days in hopes of boosting my platelets into a normal range. The following week we met to discuss the results. They were far from what we’d hoped, my platelet levels had only increased to 48,000. It was on this day that my hematologist indicated the urgent need to eliminate Leukemia as the cause of my symptoms. I was scheduled for an emergency bone marrow biopsy two days later on May 24th.
WHISPERS IN THE DARK
From the day my doctor uttered the word ‘Leukemia’ my life was forever changed. Despite the absence of a confirmed diagnosis both Elizabeth and I were certain of the results long before we received them. It all made sense now, my platelets were low because with Leukemia I’d no longer be producing them. I went through a variety of emotions; disbelief, loneliness, anger, sadness and a host of others. At the same time all the typical, daily frustrations suddenly seemed so insignificant. The priorities of life rearranged themselves incredibly fast as my family and I struggled to grasp and accept this new reality. So often we take life for granted, there is an unwritten expectation of living well into our eighties. I wasn’t afraid of dying, however, the pain of knowing I’d not be able to be there for my wife and children crushed me. When I looked at the faces of my three sons I struggled not to weep. I’ve usually been very observant of my surroundings, but now when I went outdoors I took even greater notice of the trees and flowers, the warmth of the sun, the sounds of a bird singing and tried to soak up every single moment of my existence here. Over the following days Elizabeth and I had some very real conversations, the kind you never expect to have in your early forties. We discussed what a positive diagnosis would mean as far as where we lived for the next five years. All of my family lives in New England. Elizabeth and I decided it would be best to move back to Maine so that our four year old son Dimitri could develop a strong support network and be surrounded by my family members once I was gone. We’d been seriously considering a move back to the East Coast within the next five to ten years anyway, but my health was now accelerating this decision. We insulated our youngest from what we were discussing, however our two older sons (ages 15 and 13) knew all my symptoms were pointing towards some form of cancer. As a result we had to discuss all the possibilities of life and death with them as well. This was certainly the most difficult conversation we’d ever had and lots of tears were shed. Most of the time Elizabeth and I were stohic in front of our children in the face of this situation, but that conversation was the exception. Over the following week sleepless nights became almost common. Elizabeth and I frequently awoke in the middle of the night and cried in each others arms when the pain became too much to bear. We would sit up together for hours discussing everything from our favorite memories, to planning how to best position our family for a life without me.
LIFE AND PURPOSE
During one of our late night conversations Elizabeth asked me what I wanted to do with whatever time I had left on this earth. I’d had many hours to ponder that question over the past few days, so my answer was easily articulated. I said my primary focus would be on making wonderful memories with her and our three boys. Secondly, I already had four major photography workshops sold out for this year to Iceland, Alaska, Sedona and Africa, and if my health would allow I wanted to complete those trips with my clients. After that I’d see how effective the chemo treatments were before deciding whether I could continue my photography business in 2019. My third and final wish was to dedicate a concentrated effort into making the world a better place as long as I had the strength to do so. My plan is to donate any spare time I have teaching nature photography and sharing presentations of my images with the infirm and those suffering from terminal illness in hopes of brightening their days. I’ve been immensely fortunate in my life to travel the world and photograph some of the most beautiful places on our planet. I want to share these blessings from my life with others in attempts to ease the sufferings of my fellow man in some small way. Elizabeth said that would be a noble way to spend the remainder of my life and that me using my last days seeking to comfort others who were suffering would be a profound example for our sons.
Photographers speak about using nature photography to bring about awareness and affect change for the benefit of the natural world. While I believe this is important or perhaps even critical, it has never seemed like it accomplishes enough. There’s more that could and should be done. People all over the world live every day with chronic diseases like Leukemia while no sign of a cure exists. Nature photography can be used as a tool to bring peace and comfort to them in their pain and suffering. Just knowing someone else cares enough to visit them and share their work could brighten the day in ways we can’t even imagine. Though much of the devastation in the natural world has been caused by man, I don’t believe we can discount the fact that humans are also the key to protecting it. People protect what they love. The famous Russian author Dostoevsky wrote, “Beauty will save the world”. Through my images I’ve always strived to foster a real love and respect for the natural world by touching the heart of the viewer with its beauty. As Dr. Jane Goodall said, “We can never win an argument by appealing to people’s heads, its got to be in the heart”.
CREATING A LEGACY
The results of my bone marrow biopsy surprisingly came back negative for Leukemia, Lymphoma or any other forms of cancer. I was instead diagnosed with ITP, an auto immune disease where the body destroys your platelets. I’ve begun infusion treatments for this disease at the cost of $40,000 per treatment and I’m expected to do four of them in the first month alone. While I am immensely grateful for this news and thankful that my journey on this earth continues, I’ve been forever changed from this experience. I see life through a completely different prism now. Once you’ve experienced life as a defined timeline, your perspective is permanently altered. For an extended period I truly believed that my time here was over, instead I now have a new lease on life and a fresh outlook. I’m delighted at the prospect of spending it with my beloved family and eager to continue sharing my love of photography through teaching my workshops. All of these recent experiences caused me to ponder the idea of building a legacy with ones photography. Due to the sheer number of photographers today, leaving a legacy behind after your death is more implausible than ever. I’ve often wondered what would happen if I stopped uploading files to my website or posting on social media, just how many people would notice? We are so inundated with an endless stream of content that it would be easy to overlook the absence of our favorite photographers if they faded from view. The realization that my weakened health led me to see was that I must create a legacy with my photography now. Perhaps this was the reason I had to go through such a terrifying experience, the clarity that it brought me is invaluable. This seed of inspiration, to teach nature photography and share my images in order to brighten the lives of those around me that are suffering, was planted in my heart for a reason. The results of these efforts will produce a far greater legacy than being remembered for ones work after your death. My commitment to this is even more important now that I have the time to fulfill the task. I’m deeply grateful to have this opportunity. It is my hope that by teaching nature photography and sharing my images with those that are terminally ill, perhaps I can enrich their lives and help to ease their suffering. I pray that these recent life experiences I’ve shared here inspire others to do the same and bring happiness to those who need it most. This is how photography will change the world.
Your thoughts and comments are always welcome.
Nearly two years after this terrifying experience I am happy to report that my Crohn’s disease is in full remission and my blood platelet levels are continuing to climb back to normal levels. Thank you all for your love, prayers and concern during this incredibly difficult period of my life.