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  • Writer's pictureMichelle Mathai

Moment to Moment

Updated: Sep 23, 2022

Tomas checking off his bucket list at #Bottlerock!

“Live each day as if it’s your last.” Every guru and self-help coach is pushing the mantra of living life to its fullest potential as if it’s your last day on earth. However, imagine being terminally ill and being unsure when that last day might be. What if doctors were consistently wrong about your prognosis and you kept living as if each day or year was your last for decades without facing the financial and emotional consequences? How do you budget for an endless death sentence? How do you create relationships and attempt living life in any kind of a normal way, when you expected to die a decade ago?

Let me introduce you to my brother Tom, Tomas to his best friends and Dippy to me. As a kid, I couldn’t pronounce his family name, Dilip, meaning Little King in Malayalam, the language spoken in Kerala, India. He was my big brother, a miracle of nature and my resident badass. It was us against cancer for close to twenty years. Diagnosed with brain cancer in 1998 in his late twenties, Tomas was full of heart and tough as nails, showing us all how to live our truth and never give in. He lived with brain cancer for 19.5 years. Living as if he was going to die was truly exhausting for the poor guy.

Just six months ago Tomas died and I now reflect on the craziness that we called our life. I’m still trying to decipher the lessons I’m supposed to have learned from our time together, but at the moment, it just feels like a deep black hole.

One thing I did observe is how we inadvertently redefine goals and the meaning of success throughout the cycles of our life. For Tomas, his first few years post-diagnosis were all about finding a cure for the low-grade Oligodendroglioma that had invaded his healthy brain tissue. He spent most of his time researching and getting the best medical team he could put together to consult on his behalf and fight against the unruly, relentless monster that is cancer. His powerhouse team consisted of doctors from Memorial Sloan Kettering, UCSF, Duke, and Dana Farber. When Tomas was diagnosed, in the late 90s, whole-brain radiation was the follow-up treatment to surgery for brain tumors. However, the side effects were known to be quite harsh, such as thought and memory problems as well as neuropathy. Tomas would say “I’m not ready for a lobotomy yet!” So, surgery and drug trials were the options he chose.

After the five-year mark and two craniotomies in, I could see that his next phase was all about going big, living lavishly, and not caring because he was going to die anyway. Our parents died in a car accident in 2001, of which I was the only survivor. Tomas and I were both trying to overcome the grief of losing them, settling their estate and still manage his illness. The situation was overwhelming being so young and coping with so much loss and fear. While I immersed myself in my foreign policy work with the State Department, Tomas buried his sadness in living the high life, drinking endless martinis, driving fast cars, and going for the tall blondes. I was always the little birdie on his shoulder saying, “Please, save a little something for the future just in case.” He'd always laugh at me irreverently, thinking that I was being ridiculous because he was a goner. Living each day as if his last.

As much as I was attached to my big brother, often treating him like my younger, he was a master at driving me crazy with his obstinate disregard for the future. As a professional cancer patient, it is obvious why he had such an apathetic attitude, but his bleak future lasted a hell of a long time.

He outlived everyone’s prognosis and by the 15-year mark, Tomas ran out of steam and money, realizing just how unpredictable life can be, even as a terminal cancer patient. He had to eat a big piece of humble pie, moving in with his little sister and having to abide by my house rules, after his money ran out.

As the treatment options dwindled and we began to see his body decline, our acceptance of the situation was the only choice in the matter. Well, my acceptance of the situation, at least. Tomas began showing signs of dementia, which meant that he didn’t really have the understanding to accept the situation. He took every minute as it came, not thinking about the past or the future, which in many ways was a blessing.

Acceptance allowed me to focus on what needed to happen next, which was turning my home into a hospice. Acceptance allowed me to shed the frivolous, when it came to matters and people, and see what was real and imperative. The reality was that I was watching my dear brother slip away from me day by day. Losing his ability to walk, to use his left hand, and eventually his mental acuity created an urgency for me to give Tomas moments of dignity that made him feel like his old self. My favorite moments were seeing his face light up the room at the sight of an old, dear friend, letting him lick the chocolate-covered spoon from mixing the brownie batter or pushing his wheelchair out into the verdant Napa Valley vineyards to take my dog Wookie for a walk. These moments gave him the will to keep going, despite his body having other ideas. These days with my dear brother allowed me to live with integrity and understand death and all of its layers.

So, my point is that “living each day as if it’s your last” only works if you accept the fact that you will, indeed, have a last day and, for many, theirs is usually not easy to stomach. Tomas spent his last day in a coma from the pneumonia that many end-of life patients contract from aspirating liquids. Every time he took a labored breath, a strained gurgling sound came out, known to many as the “death rattle.” I held his hand that day when he took his final breaths peacefully, so very grateful for every moment we had. Tomas’ last day was about letting go of his weary body and worldly pain and suffering to reach for transcendence and peace. Last days are very intense.

Perhaps, we should shift the “live every day as your last” paradigm to “live every day as if it’s today” and try to create small moments of joy amongst the challenges that we face on a daily basis. When we sew all of these moments together, they create a beautiful patchwork of memories for those left behind to hold onto long after one’s last day has passed.

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