Sunshine

We are a broken nation. Short of another insurrection, we are living in a cold civil war. One side is armed with guns, bullets, and hatred. The other side is armed with reason, truth, and awe at the dissension one man (Trump) could release. Republicans will win at any cost, including the nation’s destruction, if it means Democrats win a skirmish. Democrats eat their own and want a group hug with Republicans.

It is difficult to find the silver lining, the momentary oasis from hatred and paralysis during these times. It is hard to imagine “normal” life existing outside our echo chambers. Stochastic terrorism and dog whistles from the right. Infighting and inertia on the left. However, I found it about six months ago.

While scrolling through the division and vitriol on Twitter, I came across a neuroscientist at Concordia University in Montreal. Yes, Canada, where stereotypes abound of civility and courtesy. Dr. Nadia Chaudhri posted about a fundraiser she had organized, called the Nadia Chaudhri Wingspan Award. It awarded scholarships for minority and historically marginalized students in neuroscience. It was inspiring to see in the age of Black Lives Matter, Oscar’s so White, and other diversity and inclusion awareness campaigns.

Dr. Chaudhri was more than a neuroscientist and associate professor. She was also a wife and mother. And she was Pakistani. Born in Karachi, she attended Franklin & Marshall College in Pennsylvania on a full scholarship, becoming the first woman to win the Williamson Medal for outstanding academic and extracurricular achievement. She earned a Ph.D. from the University of Pittsburg and was a postdoctoral fellow at the University of San Francisco. She was also dying of ovarian cancer at age 43.

As we whittle our list of “acceptable” people with whom we agree on everything, it became clear reading Dr. Chaudhri’s tweets that she was a tireless advocate for the Wingspan Award and an incredibly loving wife and mother. Living in Canada didn’t matter. Being from Pakistan didn’t matter. What mattered was that she was a good person. She was just a good person trying to do the best she could for those she cared about in an impossible situation. I never met her, but she was a good person. And that mattered. I enjoyed reading her tweets about her husband Moni (who she called her Moon) and her son (who she called her Sun).

When the chemotherapy no longer worked and the clinical trials failed her, she tweeted that she was entering the inpatient palliative care program at McGill University’s Health Centre and was meeting with her six-year-old son to tell him she was dying. Yes, memories flooded my brain of my late wife and I having that discussion with our children, but I wept for her, her son, and her husband. My son is getting married in a couple of weeks, and my daughter is recently engaged. I cried because I knew her young son would have to enjoy his significant life events without his mother there just as mine have.

She continued to raise money for the Wingspan Award by having people sponsor her to shuffle through the palliative care ward each day. She posted them on Twitter. As her Twitter account swelled, so too did the donations. She raised over $615,000 (CAD) from 8,600 donors. From her hospital bed, she replied to every person who donated. She posted paintings she did, usually of cards or gifts people had sent her. In one painting, she depicts her husband and son burying her ashes under a tree, hoping that her son would understand her wishes and come to peace with what was to come next in his young life. On September 9th, she was promoted to full professor. She celebrated with her husband, son, and the hospital staff with coffee ice cream.

When her legs no longer supported her daily fundraising shuffle, she danced in place in bed, the focus always on the scholarship.

Even when the inevitable happens, like a fool, I feel caught off-guard. Dr. Chaudhri died on Tuesday, October 5th. I sobbed. I sobbed because I would now be without the sunshine she brought with her inspiring tweets. I cried because the underrepresented in STEM lost a champion. I wept because I knew what her husband was feeling. I sobbed because I knew the world her son would now grow up in without his loving mother. It didn’t’ matter that she lived in Canada, that she was from Pakistan, that she advocated for the coronavirus vaccine for everyone, that she was excited she could vote in Canada’s recent election. It mattered because she was a good person.

Find those that inspire, that bring sunshine into this increasingly dark world. Better yet, be that sunshine for someone else. Thank you, Dr. Chaudhri.

Sandra

My former mother-in-law, Sandra McIntosh, died on Friday. She had had multiple sclerosis since before I met her in 1987 and finally succumbed to ovarian cancer at age 81. This is a difficult piece to write.

I met her in 1987 when delivering her daughter’s baseball glove after she broke her leg during a company softball game. It was an excuse to see Lisa. Nothing more. We weren’t even dating at that point, but I had my sights set on her. Indeed, with a broken leg, there was not much need for a baseball glove! Sandra met me at the door and was very courteous if confused. That initial reaction held for the entirety of the time I knew Sandra.

Her husband, Doug, was my friend. When he was diagnosed with lung cancer in 1999, Lisa, our two young children, and I moved in with him and Sandra to care for him. He and Lisa had similar, effervescent personalities. It was a fool’s errand to try to keep up with them. But, oh, did we laugh.

In December of that year, he died in my arms as I tried to help him to a chair on the one night in all those months that Lisa left the house with her friend Naomi. Telling Sandra to stay in the bedroom while I called 911, and then Lisa felt like juggling cats underwater, my head drowning. Immediately after that, Sandra came to live with us. She lived in assisted living facilities off and on after that, sometimes living with us, sometimes living in ALFs.

Lisa was diagnosed with cancer in 2008. As many of you know, she, the kids, and I moved to Texas to treat her. Forgetting the dye had already been cast, and despite her Herculean efforts, she died in 2015. Sandra was with us in Texas from 2010 until the kids, Sandra, and I returned to Rhode Island in 2016 after the kids graduated from the University of Texas at Austin.

Before Doug died, he made me promise to take care of Sandra. It is a promise I have always tried to uphold. Lisa made me make the same promise. Two peas in a pod, those two. I promised her, too.

I don’t know why them and not me. It makes no more sense to me than knowing why cancer is, ultimately, suicidal, that it kills its host. To paraphrase Christopher Hitchens, “Why me?” “Why not,” said the universe.

Sandra was an only child. So was Doug. So was Lisa. We used to joke that Lisa didn’t have a family tree; she had a creeping vine. And now, they are all gone. However, the family tree/vine continues in Lisa’s children, my children: Samantha and Cameron. Thanks to IVF, they exist. Thanks to luck, they are not only children.

Sandra did not have Doug or Lisa’s electric personalities and never tried to keep up with them. Looking at family photos (or even photos from her high school yearbook), she rarely smiled in them. Most of the time, she isn’t even looking at the camera. However, that is not to say she didn’t enjoy herself. She loved crocheting, painting, drawing, family get-togethers, “cousin’s parties” at the Cape, and Christmas Eve’s at the DeCesare’s.

She learned to cover her not knowing something with wit, exaggeration, or obfuscation. She was either a graduate of a nursing school or any number of four-year universities to listen to her talk. Over the past twenty years, I’ve spent many hours with her in Emergency Departments. Invariably, she tells the nurse that she spent many years at that hospital as a nurse. Once, at dinner, she bonded with the waiter, who told us he was Hungarian. “I’m Hungarian, too!” she said. She put other’s minds at ease with her exaggerations and obfuscations, blending into conversations rather than dominating them. She made everyone feel they belonged indeed, that she belonged.

She did attend and graduate from a nursing program in Boston in the early 1960’s. After that, she worked briefly at a psych hospital. She then spent her adulthood watching Doug’s meteoric rise through the business world, attending board outings, professional dinners, and weekends at the Cape. She settled into life as a quiet wife and mother. She taught ceramics out of their basement and signed her works “Sugar.” Lisa never acquiesced to Sandra’s request that she sign her pieces “Spice.” Indeed, signing them “Oil” and “Water” might have been more appropriate. Mothers and daughters.

Now she is gone like Doug. And like Lisa. The family I married into, all gone. I feel bad for my kids. The unlived memories and stolen years with their mother and grandfather hurt more than the memories and years stolen from Doug or Lisa because the kids still exist to feel the pain. I can only offer stories and hope I did right by their grandfather and mother and the promise they made me make.

Funny thing about promises: anyone can make them to anyone else. I know Lisa made Naomi promise to look in on me occasionally, to see how I was doing, to see how the kids were doing. I appreciate it and, like everyone else, am doing the best I can to live a meaningful, productive life. I have remarried and am allowing myself to be happy. May we all have a reprieve from grief for a while? I wish I could promise.

Inhuman

PainPublilius Syrus in the first century B.C. wrote “when Fortune flatters, she does it to betray.” Plutarch reinterpreted this as “I see the cure is not worth the pain.” Somewhere over the past two thousand plus years we have lost the connection between humanity and the humane.

Setting religion aside and ignoring the politics and ethics of Dr. Kevorkian, it is, none the less, barbaric how we treat our loved ones at the end of their lives.

We have somehow bridged the moral abyss with compassion for our beloved pets by “humanely” putting our beloved pets out of their senseless misery, ending their meaningless pain, answering their pleading eyes with the selfless, heartrending compassion of euthanasia.

We have somehow sanitized capital punishment of the worst criminals from fatal and barbaric corporal punishment to a “humane” (although still debatably barbaric) dream-like sleep out of existence.

And yet, we allow our loved ones to face “natural” death filled with a fear, pain and confusion making anything that happened at Abu Ghraib look like Walt Disney World.

This suffering is multifaceted. Of course, there is the physical pain, which is no better controlled today than it was 50 years ago. The opioids still rule as the best we have to offer. The problem is that they are systemic, meaning that they travel throughout the entire body. If the pain is in the hip, the hip gets the morphine, but so, too, do the little finger, the ear lobe and the brain. The result is that the little finger and ear lobe are no better or worse, the hip suffers an incomplete relief of pain and the brain suffers the confusion, paranoia, nausea and narcolepsy unnecessary to treatment. This is the best medicine has to offer in 2014? The other suffering it brings is to the family members who must endure watching the physical suffering of those they love hampered by the incomplete relief of pain. Meaningless suffering is the worst kind. Love of another means the willingness to shoulder their burden. The helplessness felt by the family member watching their loved one jerk in pain or crying out as they try to move them or comfort them is an indelible stain on their soul.

The suicidal mission of cancer adds to the frustration. Bent on destroying its host, even at its own annihilation, cancer never rests. To paraphrase Siddhartha Mukherjee from his book The Emperor of All Maladies, cancer cuts the brake lines of some cells and jams the gas pedals of others, stopping the natural cell regulation process and sending the cancer cells into a proliferating frenzy steamrolling every other cell in its path. In his or her clearer moments, so too, the cancer patient undergoes a civil war; one side, engrained in all of us, pulls us to live, to continue fighting, while another force, armed with logic, understanding and ultimately love, forces the patient to begin facing the inevitable truth with no regrets and peace.

In his book Man’s Search for Meaning, concentration camp survivor and psychologist Victor Frankl describes inmates of the camps as surviving long stretches if they could find meaning in their suffering.  Some held on to the hope of outlasting the Nazis and returning to their loved ones (should any of them have survived), others found peace looking up at the sky and imagining conversations with their loved ones wherever they might then have been. Life was worth living if they held a kernel of meaning in their suffering.

I have searched and considered and yet find no meaning in the suffering loved ones endure at the end of their lives given the current state of medicine. Pain is pain and on a scale of 1 to 10, anything above a 1 means the medical field has failed. The root word of both humane and humanity is human, from the Latin humanus. However, we reserve those words for our treatment of pets and prisoners, not our loved ones. For them, and for ourselves, it is inhuman what we put them through, for them and for us it is nothing short of torture.