The things alive do not know the secret… Of late years, however, I have come to suspect that the mystery may just as well be solved in a carved and intricate seed case out of which life has flown, as in the seed itself. – Loren Eiseley, The Immense Journey
My brother died at 3:25 am July 5. The pop and sizzle of neighbors’ firecrackers kept him company that night, gray skies and a gentle rain in the morning broke the spell of heat and drought and sun; more soothing than melancholy. Determined and independent in his dying days as he was as a vibrant, healthy man, I have no doubt his plan was to make it through July 4; July was his favorite month and Independence Day his favorite holiday.
In the hours and days after his death, little things took on weighted importance: the memory of the last meal together at a restaurant; the image of a sweet smile when at last voice and words, but not comprehension, were taken from him; the half-full glass of water by his bed; the backpack on the kitchen table containing bottles of aspirin, ear plugs and a bathing suit from the last trip he took (to California); the tube of toothpaste, indented in the middle by the squeeze of his hand; his beat-up work boots looking as if he’d stepped out of them mere moments before. It is those things more than the profound and sobering permanence of passing that make me break down. What is more poignant than the little, seemingly insignificant objects and moments that make up a human life?
Anyone who has suffered through an illness or has helped a family member or friend knows that it is not a solo project. It is a team effort requiring tens of supporting and supportive roles. And so I have many people to thank. First and foremost among them, my family. My mom and dad dug deep and called on reserves that any 20-year old would envy. Their strength and dignity through that lonesome night of loss is an example I will carry with me. My other brother whose advise and care steadied during moments of stress and uncertainty. My sister was a rock, holding firm during times when I melted like a candle. Love to my partner, Kel, for keeping the home fires stoked and for caring for our little (furry) one, Ike. His support has never wavered. He loved my brother. The caring embrace of extended family was felt over the long miles.
It is impossible to imagine what this process would have been like without the guidance, knowledge and compassion of our hospice team. There were many late night visits and phone calls – moments of doubt and fear made manageable by a comforting voice on the other end of the line. Stacey, Robyn and Carolyn guided us down that very difficult road. Special gratitude goes to John, the gentle aide who helped my brother maintain his pride and dignity up to that very last day of life. We were also fortunate to meet Riley, a young man who made our nights easier by his patient presence and his willingness to be touched by a family’s saddest hours.
Thanks and love go to the many friends – old and new, near and far – who sent emails and called. The comments both here and on Facebook were deeply appreciated. In challenging times, the true and the false are shown in stark relief: some of my brother’s friends reached lovingly out to us, shared aspects of him we never knew and offered to help in any way that they could. Fate or coincidence sent Somer into my life at just the right moment. She shared her huge, loving, nurturing heart with my brother, but also loaded the back of her vehicle – several times – with plant-based deliciousness and made the trek to Bountiful to spend time with me and open her arms for much-needed hugs. Her beautiful kids never failed to cheer me with their exuberance and their life and energy. Along with her friends Amanda and Erika (who have never met me, by the way) she provided heart, soul and stomach nourishment. Thank you ladies of the Good Clean Food Relief Society.
In a strange twist, Faye came into my life on the very day my brother died and at the very coffee shop where he and I would go after his appointments at the clinic. Over mutual admiration for short haircuts, I learned that Faye has the same type of brain cancer as my brother. I’m not one to linger long on the oddities the universe occasionally throws across my path, but one would have to be devoid of imagination not to think something rather huge was up. I hope to spend a lot more time with Faye and to share with her the thin threads of knowledge gathered over the past couple of years.
Merck and Genentech earned my gratitude for providing their prohibitively costly chemo drugs gratis through their assistance programs; big pharmaceuticals aren’t all bad. Novocure not only requires thanks for pursuing interesting cancer treatment options, I’m indebted to them for giving my brother – free – their Novocure TTF helmet, a recently FDA-approved alternative treatment using electric fields to disrupt cancer cell growth. Dr. Santosh Kesari at his lab at UCSD prescribed the device and he also, up until the last weeks of my brother’s life, suggested other treatment options.
Lastly, thanks to my brother’s medical team at The Huntsman Cancer Institute, especially to sweet Crelley who has become a friend, and Sean, who spent hours with me on the phone over the past two years explaining complex issues and trying to figure out what made my brother tick. From the beginning of this journey they provided hope and knowledge and gave my brother another year of life when all seemed lost on bleak November days in 2010. I often wonder how they can work day after day knowing that many of their patients will live only a short time post-diagnosis. I am grateful there are people willing to devote their lives to treating such a formidable disease. May a cure be found soon.