I stole my mother’s Deux Chevaux when I was 17, the day I passed my driving test. Not literally, but effectively. I took to driving as I did to smoking: like a duck to water, so to speak. So strong was my love of driving I even forfeited lagers at the Rose & Crown, the hangout pub (‘Rose & Pose we called it) aka home for me during my teenage years.
My pleasure at being behind the wheel, coupled with decades of driving at English speeds, meant it was just a matter of time I’d get in trouble driving over here.
Ed and I were heading upstate, me at the wheel, gliding along. Him telling me to slow down as per usual – yada-yada-yada – and me ignoring him, also as per usual.
Just as in the movies, the police car lights up, blasts out, and I pull over. An extremely tall man with a fancy hat and sunglasses strolls over. He asks for my ID. The problem was that not only did I have no ID, I had no US driving license, no UK one. Nothing.
My strategy was to up the English accent, and take a long long time pretending to slowly search for fictional/ID, all the way expressing apologies in the way that only English people can.
Eventually he asked me to get back in the car, telling me that he’d let me go, but that I really might want to consider getting some form of ID and a driving license before my next trip.
My ability to act, spin, manipulate, whatever, had got me out of a potentially tricky situation. The art of persuasion is of course at the heart of my profession, PR. At the time of this event I was recruiting, so I did wonder if I could simulate this situation for potential candidates, to test their ability to convince people to do other than they might….
There’s a much more serious point here, relating to living and surviving a Grade 4 cancer diagnosis.
I was reminded of this when I started reading the phenomenal ‘Man’s Search for Meaning’ by Viktor E. Frankl. You’ve probably all read this. If not, I suggest you do. It is the most enlightening prose. Frankl was a psychiatrist who survived Auschwitz. His book offers extraordinary insights into why some people had a life after the camp, while so many perished.
Early on in the book, he talks about how he was able to forge a relationship with his ‘Capo’. These were SS appointed prisoners who headed up labor squads. They kept their privileged positions by terrorizing subordinate prisoners. Frankl was able to get into his Capo’s good books by using his personality – particularly his innate empathy – and psychiatric knowledge to advise the Capo’s struggles with his romantic life. He adjusted his manner to appeal to his foe’s better instincts. As a result, the Capo kept Frankl close to him, and ensured he had preferential treatment. He valued Frankl’s advice, so it was in his interests he stay alive. This meant Frankl got a myriad of tiny advantages: a morsel more food, a slightly better task – individually not significant but collectively making a huge difference in his chances of survival.
In sharing these two tales, I am in no way attempting to equate them. I’m also not of the view that surviving a concentration camp or a serious cancer diagnosis is down to personality. What I am observing is how my particular personality can be put to best use in the face of the challenge I face. Whereas I had thought that the weeble was incapable of falling over, and that indeed it was in my control, I have found the last few months the control slipping, and the weeble failing to upright itself as quickly or as easily as in the months following my diagnosis.
I’m glad to report the wobbling weeble has regained its balance and stands straight and still.
Mr Frankl has a lot to do with that. As does the psychiatrist I’ve started to see – Dr Marina Benaur – who brought the book to my attention.
I was becoming increasingly anxious. Nighttime trips to the bathroom stretched as I found it hard to get back to sleep, the GBM horror preventing me relaxing. Face book GBM groups enticed me in, only for me to come away often feeling aghast at the tales of carers who have just lost loved ones, often just weeks or a few months after being diagnosed. And frustration at the complexity of getting OurBrainBank off the ground making me feel out of control.
Maybe it was psychosomatic, or maybe just the cumulative impact of being on chemo and immunotherapy for a year and a half. But I started to itch. And itch. And itch. A corner of one of the arrays I wear on my head would come lose. An itch the equivalent of a squad of mosquitoes would emerge, proving irresistible to my index finger. I’d sneak in a scratch; enjoy a delicious moment of satisfaction, swiftly followed by pain. And then the itch grew to cover my body. I’d have a shower and find myself using the towel so harshly that my skin went red. Small sores grew into open wounds.
I was referred to Dr Lacouture at Memorial Sloane Kettering, a senior dermatologist who’s been seeing a number Optune users with sore scalps. Novocure, the company that makes the device, tried new barrier creams. Despite all these efforts, my skin became increasingly painful. And new treatments or the cumulative impact of 20 months on chemo and immunotherapy caused me to wake up to a body covered in red hives. I found it hard to think about anything other than the itching and the sores and the hives. It got so bad I couldn’t even take the arrays off without moaning.
The upshot is that I’m taking time off the device, using creams and fresh air to heal the wounds. While it feels liberating not to wear the arrays and carry a bunch of wires and a bag round with me, it also worries me. Optune is the only treatment other than the chemotherapy I take, that’s proven to extend life. So I want it back on as soon as my head is healed.
Nevertheless, I feel good. The best medicine of all is a good MRI. Just short of a week ago I ventured into the bowels of Columbia yet again. I emerged triumphant just a few hours later. “No evidence of disease progression” and that fabulously reassuring, trusted smile from Dr Iwamoto.
But I’m still confused.
I seem to be surrounded by spectrums and contrasts, my mind and mood ricocheting from the substantive to the superficial. Did I really seek to relate my ability to avoid a speeding fine with Mr Frankl’s successful dodge from the gas chamber?
I must be mad. No need to respond to that statement.
Here’s another spectrum. I began the summer by penning an OpEd for the NYT, and ended it by appearing on the Dr Oz show. For my British friends, Dr Oz used to appear on Oprah Winfrey’s show, pitched as a medical expert who could connect with the masses, and one who was open to alternative treatments, as well as traditional Western medicine. Many are skeptical of him, just as many support him.
Dr Oz planned a feature about GBM, centered on an interview with Maria Menounos, who has been quite public about her recent surgery to remove a benign brain tumor. Maria’s mother has GBM, so Maria asked the producers to invite people with GBM to the taping of the show. The producers wanted to convey a message of hope, and hence I was invited to be in the audience and say something hopeful. This I duly did: Dr Oz .
People with GBM and their carers are very active online. Their reactions were at different ends of a GBM spectrum. Patients cheered me on for the message of hope. Carers were polite yet clearly critical that the picture of GBM that emerged was overly positive. Many have lost loved ones just a few months after being diagnosed.
I realized that I had been insensitive to their feelings.
The core of OurBrainBank is really about shifting the axis of cancer treatment from the lab to the patient. So my mind is concentrated on what patients think, feel, express, want. In my desire to be upbeat, I risked conveying a lack of sensitivity, both for people living with GBM and having a much harder time of it than I, as well as those close to them.
I do believe that one’s attitude to disease is important, even if it simply helps one stay sane(ish) in the face of a horrible disease.
Maria Menounos quotes Rocky Balboa, perfectly articulated by Sylvester Stallone: “Life’s not about how hard of a hit you can give… it’s about how many you can take, and still keep moving forward.”
I think the words of Mr Frankl go just a little further and deeper: “It did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life—daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”
If GBM is my life challenge, then OurBrainBank is a determined effort to turn challenge into opportunity. From negative to positive. From death to life. To persuade all of you, and all of me, that we can turn this monster disease around and, in so doing, make major impacts on all cancers. I’m going to end here now because otherwise I’ll start ranting on and on about how fabulous OurBrainBank is, and risk alienating y’all.
Maybe next time. Because by the next time I post we will most likely be up and running. Oh yeah…. It’s happening! We have a website, we have some initial funding, and we have a passionate group of brilliant minds.
This is going to fly. And I’m going to stay strong.