My father was a very, very handsome man, and it was a constant source of pain for my mother, brother and I. If you have a dashing-looking parent, you know what I’m talking about. At parent-teacher meets in school, the other kids in my class thought he was my older brother, and gushed to me about how handsome he was. He always looked ‘perfect’ and extremely gentlemanly. Believe me when I say this, the man woke up with perfect hair, everyday. At 60, he had a full head of naturally jet black hair, no bald spots, no age lines on his face, looking no older than 40 at best, with a strong, confident yet indescribably kind disposition that comes from a life of practiced perfection. Well-coiffed hair with a slight Elvis tuft. Everyday shirts and trousers, even handkerchiefs, were ironed stiff within an inch of their life. Shoes polished everyday until it shone. Posing with him for family photos were stressful for the rest of us, because there we were, struggling to look semi-decent and human-like, and there he was, standing like a demi-God, photogenic in every sense of the word. My mother and I rolled our eyes at every family photo at the sheer unfairness of life.
In 2009, he got diagnosed with Cancer.
And everything changed.
I remember the day his hair started falling out after chemotherapy. He could no longer hide his diagnosis from others. This secret we had kept within our tiny home for months HAD to be now told to the world. Eyes that have always looked at him with immense respect would now begin to show pity. His perfection had begun unraveling. I came home from work one day and he was sitting on the couch, head fully shaved, with a very complex smile on his face. The smile showed signs of pain, and a deep internal struggle with understanding this new reality. But it also spoke of something else, louder: a defiance in defeat. He still had hope. Next to him sat my mother and brother, both sporting the exact same smile. And I did the only thing I could think of.
I smiled back.
This is a memory I have never given a voice to, or even allowed myself to remember in the last 10 years since it happened. But it was jerked back from the deep, dark recesses of my mind- the place I shove memories I never want to remember– last month while I was in a car with two women and two dogs, on our way up to the San Rafael swell for 3 days of wilderness camping.
Have you seen the photos from our trip?
Meet Michelle Marthia.
As she was telling me this story, the memories I had suppressed for years came flooding back in tears. We spent the next few days in the desert, talking about our experiences – Michelle as a survivor, Jackelin as a volunteer photographer for the foundation and me, as someone who lost a close family member to terminal illness.
If you don’t understand the significance of the service they provide, it’s perfectly OK. This is one of those things that are difficult to understand, unless you’re in it. And I’m not entirely sure I can explain it as well as I probably should. I think Michelle explains it better here. But still, I shall try:
Everyone wants their story told. Their time on earth recorded, their journey chronicled. It’s almost a basic human need, to be seen. It’s why we take selfies, pose for group photos and why every major life event almost always comes with a hired photographer. When you’ve been diagnosed with an illness, especially one that inevitably and significantly reduces your lifespan, it overpowers every other life event and becomes the most significant one. And for some, the last one. To photograph someone at this point in their life, is to capture the truest essence of that person – their strength, their fight, the sum of all their loves, and all that they are. If you look through their galleries, you’ll see that despite the pain in each story, they all have found the strength to smile.
“True courage is being able to smile in the face of adversity while embracing one’s own vulnerability.”
When I asked Michelle how she does this work, she said ‘it is painful, yes, but also a privilege to bear witness and share in these stories’. Through her foundation, Michelle hopes to break through the isolation of illness and restore connection to our community.
It took me a very long time for me to be able to look through family photos again, and bear to see my late father’s face in them, but when I eventually did, I didn’t see the pain. All I saw was his strength. And that is how I will remember him.
“How can I help?”
I believe that when fate crosses your paths with others, it is not without reason or purpose. I was meant to meet Michelle, to partake in her story and to bear witness to her life.
After I came back home from the trip, I kept asking myself ‘How can I help?’. And soon I realized, that one way to help is by sharing this story with you.
And I’m hoping that you can, somehow, help too:
1. If you meet someone who is suffering from a terminal illness, instead of feeling sorry for them, try to see the strength in their smile and know that you are in the presence of one of the finest forms of courage.
2. If you (or someone you know) is a photographer in Utah, connect with Michelle and see if you can volunteer your time for her foundation. Also, if you (or someone you know) is suffering from illness, and would appreciate free + professional family portraits, please get in touch with Michelle. With her, you will be in good hands, I promise.
3. Tell someone this story. At your next dinner party, while chatting with coworkers at coffee break or maybe when you meet an old friend, tell them this story. You’ll never know who it’ll inspire, or what hidden memories it will evoke. Stories are a powerful thing. They need to be told.
4. Find organizations with beautiful causes around you that you can donate your time to.
5. Donate to Heal Courageously, to help Michelle in her mission. It doesn’t have to be much. We are a world of 7 billion people, and $1 from each of us could possibly end a lot of problems. The hard part is finding the right people to give to.
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” – Susan Sontag, Illness as Metaphor
Yours with a smile,