Wednesday, September 21, 2011

My Five Rules on Death and Dying

Five Rules on Death and Dying

I feel blessed to be bathed in the fluorescent light of the Amsterdam airport. Given the emotional and geographic and sensory geysers of the last two weeks this three-hour reprieve is deserved.

Pre-dawn in such places is hallowed. Traveling alone we are contained, given shape and form, by the forces of society in motion. And yet we are left alone, anonymous. I feel like the characters in Hopper’s Nighthawks; they can only guess at my regrets, tragedies, frustrations, fatigues, and desires.

And I can only guess at theirs. We have a magnetic deal on the distance we can and cannot be from one another. So we move around each other in brittle polite silence.

But I have no feelings right now. I have been scrubbed clean of thought. I am barely putting out a signal… Please and thank you are handrails of recovery.

I am en route to Copenhagen to serve for the second time as the UCI official announcer for the road world championships. A dream gig, eh?

Indeed it is and I will work hard – beginning today when I study every start list and bio - to secure this job for as long as they’ll have me.

But honestly I need this Amsterdam interlude for the personal cushion.

For as nervous as any announcer may be to call the world championships, I am coming off speaking at my sister’s funeral. That was a tougher gig.

My sister’s death last week would produce my family’s sixth funeral in ten years. They were not distant relatives but immediate, earth-shaking deaths to my family.

My speech to conclude my sister’s service had three components: thanking so many people for their support; outright plagiarism of truly gifted writers; and my five rules on what to do during times of death and dying.

Here goes:

Rule One: Ask
Rule number one is “Ask.” I find it terribly rude to allow somebody to suffer without asking for information.

So let me tell you what happened.

Less than two weeks ago, I sat on the sixth floor of Brigham and Women’s Hospital in Boston, chatting away with my sister, Kim. Although a bit loopy on meds, she used my conversation to move from grave and disoriented to upbeat and chipper. I had no illusions and recognized her slide toward death, but we had the most pleasant of chats.

The cancer that first hit her in 1984 and returned in a new form in 1986 and then a new form in 2007 and yet again in 2010 had found a new home. After her breasts, her lungs, her bone marrow, and her blood had been raided, the cancer found a new place in her brain. Her legs, her speech, her ability to even swallow were being shut off by her brain; like the fuse box in a house, the cancer had found the spot where it could flip off switch after switch after switch.

But she had always bounced back and I kind of hoped, listening to doctors, that we could get her to the holidays and who knew? Perhaps another summer of beach trips with my kids.

When I left her to travel to California for a Best Buddies event, I said “Love you…” in that sing-song way that is not intended to be the final good bye.

And she replied “Love you, too,” in the same manner.

And I bounced back – just as the door closed – “Love you more.”


Rule Two: Show Up
Rule number 2 is “Show up.” For five straight years we had been showing up for my sister in Herculean ways. We had learned a lot about medical things. But after countless pre-dawn pacing sessions at the ICU of hospitals, bidding farewell to my sister on the sixth floor – not the ICU – gave me confidence that I could start a trip that would take me to Monterey, Calif., for Best Buddies and then to Las Vegas for Interbike, and then after an eight-hour stay in Boston to visit Kim and swap out socks and underwear, I expected to head off to Copenhagen.

Off I went to the Audi Best Buddies Challenge: Hearst Castle, where I scrambled about and tried to forget about Kim for a bit. In effect, I was asking people to employ my own rule number 3 on managing death and dying: “Make no Judgment.” For what you see is not what you get. There is no correct way to grieve. Everybody seeks comfort in different ways during such circumstances.

I had been away – calling cycling events – when my father passed, my sister’s husband (which happened a week apart in September 2001) died, and when my sister passed in 2002.

When I touched down on Thursday, Sept. 8, in California, I started getting some bad text messages about Kim’s condition. The next day, like the calving of a glacier, her body simply started to collapse under the enormous pressure of all the cancer. “Success” would have meant enormous suffering just to gain another month. We made the decision to stop curative treatment and begin palliative care. She went off oxygen and on to morphine.

As I worked the Best Buddies event, doing my best to be upbeat for these riders doing this great charity event. The numbers kept coming; oxygen dropping, heart rate running at almost 140 bpm, and morphine increasing. Three times during the event, I called home to talk with my wife and children, including my brave 17-year-old son who sat loyally by Kim from Saturday morning on.

My son had learned the first two lessons well.

I could handle her passing; but talking to my children left me in puddles. Three times I withdrew from the event and hid behind buildings to simply sob uncontrollably.

Rule Three: Bite Your Tongue
My third rule on death and dying is “Bite Your Tongue.” Everybody grieves differently; everybody is a work in progress; we all seek comfort in different fashions; and there is no correct way to grieve. I had a lot of work to do that day and I did it. My work is fun and upbeat. So when it came time to announce the Friendship Criterium, where pro riders and celebrities pair up with Buddies on tandems for fun races, I asked my dear friend and colleague Larry Longo to help announce, in case I broke down.

As I got started, however, I realized my sister Kim – a teacher of teachers – needed me to knock it out of the park for these kids. So Larry and I rocked it.

Once I got to the post-ride barbecue, I settled my clients, took care of some production details, and realized my phone – after all the calls and texts – had died. Smashmouth came on. Pardon me for not grieving appropriately, but I love that band. I totally got into the show and checked out. I hate to admit if felt great dancing with the riders I knew and especially the Buddies. In hindsight, Kim would have loved that I did it.

My initial plans called for me to head to Las Vegas. But I awoke to dismantle those plans to get home, hopefully in time to see Kim before she passed. Oddly, few people save for my closest of colleagues realized my situation. I felt as alone as I have ever felt…..ever.

Throughout Sunday – as I worked phones with airlines and untangled myself from obligations with the event – I kept receiving the metrics on Kim. Her amazing little heart continued pumping at 138 bpm for the third straight day.

The best I could get out of my airline was a 6 a.m. flight out of San Francisco. This gave me a night with my dear friends, The Simpsons, in Burlingame. This included dinner with a 14-month-old boy, John Paul Simpson.

I collapsed into bed at 9:30. I awoke at 4:30 and learned by text that Kim had passed. I had missed it.

I just wanted to get home. I returned a rental car, simply leaving the key on the seat to make the flight. I fought through security, found my way to a window seat at the rear of the plane. At the last minute, a heavy woman wedged into the seat next to me. I’m typically judgmental and annoyed by heavy Americans.

As I sobbed and typed, my head turned towards the window, this lovely woman simply kept handing me tissue after tissue without asking any questions. No judgment.

I arrived and silently stumbled through the Boston transit system. As I came up the stair at Alewife Station, I found myself side by side, stride for stride, next to my nephew, Nathan. We emerged to see my brother, Gary, and sister, Beth. My wife Deb was two cars behind them with no knowledge of their presence. Somehow were all together. Nice.

Rule Four: Make Lasagna
I got home, dropped bags, and we swung by the home of my wife’s colleagues, Liz and Steve Curran. They had prepared a full dinner for my family. I truly can handle the death stuff; but these acts of kindness – often by people who don’t know the deceased but know the family – move me to tears. We received dinners every night. And time after time I am swept away with emotion.

We had a whole ham one night. Then came wonderful teriyaki bowl from my sisters colleagues at Wediko Children Services. And the lasagna from Best Buddies continues to feed the household.

My later father, a sullen WWII vet, would remain on the periphery of such events – deaths, operations, births, etc. – and simply mutter, “What are you going to do?” If the situation were a flat tire or a broken pipe or grass fire, he would be at the helm and fixing things. But in medical circumstances beyond his reach, he shut down.

Making lasagna cares for people caring for the ill or the injured. When there is nothing else to do, feed people, care for their children, and help them with their laundry. These acts are profound.

My friends at Harpoon heard of my sister’s passing and forced three cases of beer on me. Flowers arrived. Notes were sent. Comments on Facebook and e-mail and text were crucial to me.

Thank you.

Rule Five: Laugh
On behalf of my family I wish to apologize for anybody we may have ever insulted at assorted wakes, funerals, receptions, and hospitals for apparently having a good time at an inappropriate moment.

Throughout my sister’s illness, we went through wild swings in moods. But there is closeness with this experience – with friends, family and casual daily coffee-shop acquaintances – that is profound. Trust me, I broke down and wailed like some Greek widow on a number of occasions.

I actually believe it should be required. This death process with my sister started in 1984, when she was first diagnosed. The past five years have been a steady degradation of her health and quality of life for her. Having her dignity shaved away, layer by layer, has been as difficult to witness.

For the family this past five years has been a series of fire drills followed by eye-blinking meetings with medical teams followed by vacuous bedside vigils. Some were alone with Kim and blinking monitors and beeping devices; some were with her awake and chatty; and others were with family and friends.

Once in the ICU last winter, with Kim intubated on a breathing tube and unconscious, my brother, Gary, my nephew, Nicky, and myself passed the time in this gravest of locations….In this somber place we were laughing uncontrollably about something. We could not stop.
Kim’s passing was hard. I lost a business; turned down a job opportunity of a lifetime; lost countless promotions and failed to close several deals due to my time required in a hospital or a rehab facility or simply spent holding a hand or walking a beach.

But I had so much quality time with my family and witnessed the emotional growth of my children and their cousins. One could not buy such an experience or tutelage.
Kim’s service we took the opportunity to pose for a family picture. Surrounded by the sound system in the middle of the Putnam Room at the BC Alumni House, we staged for the shot. Macy Gray’s “I Try” came on.

This entire family broke into chorus, clutching one another, waving back and forth in broad smiles. Kim’s passing had made us so close to on another. These children were so strong as a result of this experience.

Afterwards many of the kids continued to dance.

And I trust that in the event of my passing folks that come together have some laughs….hopefully at my expense.

I’m now in Copenhagen, having announced the first two days of competition. I’m totally alone, surrounded by folks speaking Danish, French, German, Flemish and assorted Scandinavian dialects. It’s good that I have nobody as it protects my voice.

The emotional strength to go through this wonderful, albeit lonely, travel experience came from my family.

Today is the men’s elite time trial. I’m going to crush it.

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