An extract from “The Lives of Brian”
Chapter 45: The Jar of Honey
On my return from South Africa, there is no relief. I feel that I am fighting for my existence.
I seek another opinion, this time from a professor of psychiatry at a prestigious mood disorders institute. He says he has had success with the stimulant Ritalin in treating melancholia, and suggests that it is worth a shot. Before I know it, I am on the drug they give hyperactive kids.
Diagnostically, the professor swings at first between melancholia and PD. Subsequently, he determines that my case does not fits the criteria for depressive illness and, by a process of exclusion, plumps for Parkinson’s. He says he doesn’t think that I am simply mimicking the symptoms of the disease—the physical debility and slowing, the rigidity and exhaustion—in some kind of subliminal replay of Eric’s demise.
As for the Ritalin, after some initial positive impact, it feels too powerful; eventually, despite calibration of the dosage, I cease taking it.
As my malaise escalates, I consult again with my first neurologist for a review of my condition. He reaffirms for the third time in eighteen months that it is not Parkinson’s. His words—‘I am trying as hard as I can, but I can’t find PD’—make a deep impression on me, but not so deep as to deter me from my quest for enlightenment. If it’s not PD, then what in heaven’s name is the matter with me?
As 2012 continues, my symptoms are unabated; in fact, they continue to mount. My speaking voice is weaker—softer and more of a monotone—and I have more generalised fatigue on top of the intractable ongoing anxiety and array of other symptoms. My sleep is poor, and I wake up several times a night.
Professionally, meetings and paperwork become testing, and giving speeches is an ordeal that I dread. My social life is a source of stress; it is a trial to remain standing for considerable periods at functions and, on occasion, to interact. I feel increasingly spacey and out of sorts. I am an emotional train wreck, too, sobbing when I talk on the phone to family and to some colleagues and friends.
My psychotherapist recommends that I see a psychiatrist colleague of hers, who will help address my anxiety and act as a case manager, coordinating the various medical specialists. I also consult a young neurologist friend of Ondine and Dror’s, at their suggestion.
In retrospect, this is a diagnostic turning point of sorts. After thorough examination and history-taking, the neurologist’s opinion is that I have ‘an element’ of PD. His choice of words is puzzling, and I ask him whether one can be a little bit pregnant with Parkinson’s. No, he says, my clinical picture shows sufficient evidence of very early-stage PD for him to make a positive diagnosis: I am well and truly knocked up. Like the psychiatrist at the mood disorders clinic, this neurologist does not believe I am manifesting my trauma by subconsciously acting out my father-in-law’s constellation of symptoms.
It is all exceptionally confusing. His senior neurological colleague continues to categorically exclude Parkinson’s. Head to head, the two experts in neurodegenerative disorders are evenly split: one for PD, and one against.
I find myself in a curious position. On the one hand, I cannot deny that I have already convinced myself that I have PD, and have for some obscure reason been effectively willing confirmation of my conviction into existence. In a sense, then, the second neurologist’s call is a vindication, though a perverse one, of the worst kind, one that no one in their right mind would seek. Equally, as I battle accelerating debility, I know that diagnosis is the necessary precondition for treatment. I am hopeful now for some relief of my symptoms. To outward appearance, I am reasonably stoic about the news.
But on the other hand, I understand only too well that PD is incurable and progressive. If it is Parkinson’s, I can’t help but worry that the future is grim. In the back of my mind I see Eric, enfeebled and drowning in his jar of honey with its lid screwed on fast.
I begin a trial on the drug levodopa (L-dopa), the gold-standard treatment for Parkinson’s. Curiously, it is the same drug that one of the leading Israeli specialists tried on the twins to treat their dystonia, with no appreciable effect. The medication boosts levels of dopamine in the brain, the neuro- transmitter that controls movement and coordination and that is reduced in PD. Alleviation of Parkinson’s symptoms in response to L-dopa indicates the presence of the disease, so the trial should be instructive in ruling PD in or out.
Matters are only further clouded when the drug has no positive effect on me, despite my using it over many months, and even with extensive fine-tuning of the dosing regimen. A question mark hangs over the diagnosis again. On the recommendation of my first neurologist, I consult a neurology professor in Adelaide, an expert in movement disorders. His firm view is that my unresponsiveness to L-dopa makes PD ‘most unlikely’. The needle swings back towards the negative.
In all, my situation is extremely frustrating but probably not uncommon. PD is an enigmatic beast. I learn that there is wide variation in symptoms, and that a number of Parkinsonian syndromes overlap with the disease. Lately, it has come to light that a large percentage of cases—up to 25 per cent—are misdiagnosed. There is no test to confirm its presence. Definitive diagnosis is only possible upon post-mortem examination of the substantia nigra, the small cluster of dopamine-producing cells deep in the brain that withers in people with the illness.
As for my anxiety and depression, it’s a case of chicken and egg. Depression and anxiety can and do coexist with Parkinson’s, and, likewise, those psychological illnesses can give rise to PD-like symptoms in the absence of the clinical disease.
The conundrum remains: is my physical unwellness a projection of my mental and emotional state, or vice versa?
It is probably to the detriment of clarity that, by this stage, I am a walking pharmacopoeia of prescription medications, most of them psycho-active—uppers, downers and everything in between. On doctors’ orders, I am or have been on antidepressants, antipsychotics, anti-anxiety drugs (including the highly addictive benzodiazepines Xanax and Valium), wakefulness promoters, dopamine enhancers, stimulants and, after pre-diabetes was discovered, blood-sugar regulators. They course through my veins and bathe my brain in a chemical soup. I suspect that part of my predicament, at least, is attributable to the meds competing in my system.
That is the strong view of my family. Gene, Emile, Ondine, Carrie and Dror are unerring in their love and support as my health crisis unfolds over months stretching to years. It is undoubtedly exhausting, and not just for me. In particular, the emotional burden of my spiralling dilapidation falls on Gene. I carried her through the great traumas of our younger lives; now, the roles are reversed and there is no end in sight to my woes. I know the toll it must be taking on her, but she remains steadfast.
In the second half of 2012, there is a loss. Ondine, Dror, Jasmine and the boys leave Sydney for Israel after four years.
Jasmine is eight, the firstborn of the cousins and the only girl. She is dear to us. She stays regularly with Gene and me one or two nights a week, and we have a specially decorated room set aside for her, ‘Jasmine’s room’, with her books, art and clothes. We love to spend one-on-one time, and look forward to her visits.
Jasmine is bright, witty, and as kind as can be. She is a keen reader, rapidly becoming bilingual in English and Hebrew, and a ballet dancer in the making. She loves to chat. We discuss matters serious and frivolous, with Jasmine conversing in that mature, articulate way of little girls. Her perceptive questions and acute observations of the world continually catch me short. To her, I am Papa Bear.
On sleepover afternoons, I enjoy fetching her from school and catching up on the day’s events. The drop-off and pick-up are a tradition. One of my most cherished memories is taking Jasmine on her first day to preschool, grandfather and granddaughter hand in hand, just as I did with her mother thirty-five years earlier.
Then, there are Dov and Lev. The boys are five, nearly six, and angelic in temperament. They are a sheer joy to be around, if only my gloom would clear long enough for me to properly register it. As time goes on, they are doing better in some of their motor and communication skills and, with appropriate support and therapy, outstripping their bleak prognoses. Most of all, I have no doubt that they know they are the most loved little boys in the world.
I will miss them all terribly.
On parting, Ondine tells me she is sorry. I don’t blame her for anything—not in the least, not now, not ever. She is a magnificent wife to Dror, accommodating with an open heart his deep-seated need to give life in Israel another chance. Her determination to make a happy home, to accept Dov and Lev just as they are today and to forgo peering into the future, her closeness with and love for Jasmine, are exemplary. She is far stronger than me.
And she has the best of men in Dror. At the airport, he says that if I need them to come back home, they will do so; that I am more important than Israel. I know the depth of his loyalty to the country, and am touched beyond words. I thank my son-in-law through my tears, and farewell the family, Gene at my side.
In December, Gene and I visit Israel. It is wonderful to be in the company of Ondine and the family after three months of separation, but I can’t get my head above water.
Around this time, I notice some classic Parkinson’s symptoms. I have a tremor in the fingers of my right hand. It is slight, but, for obvious reasons, unnerving, a small harbinger of things to come.
As for my walking, it has deteriorated further and I now shuffle at half my former pace. I feel like I have run a marathon when I have been only to the corner and back. A couple of specialist doctors from my neighbourhood who see me from afar have asked if I have PD.
In 2013, I explore other medical avenues, seeing an immunologist and an endocrinologist. A range of scans and tests follow. I also consult a GP specialising in integrative nutritional and environmental medicine. Essentially, nothing comes of it.
Later in the year, I travel to Israel again, for another visit with the family. Despite my best efforts, I am my usual self: shaky, dizzy, anxious, shuffling when I walk, exhausted and uncoordinated, with some tremors in the right hand.
This time, I have referrals to see two of Israel’s top neurologists. The news is not good, but nor is it unexpected.
The first finds that I have mild to moderate Parkinson’s of idiopathic, or unknown, origin. He remarks that 5 to 10 per cent of Parkinson’s sufferers fail to respond to L-dopa, and suggests a further trial of the drug, adding that I am not yet a candidate for the deep brain stimulation therapy that is showing promise for treating the disease.
The second more or less concurs. He concludes that I have moderate Parkinsonism, affecting both sides of my body and my balance, and depression.
One door closes, another one shuts.
The alternative diagnoses are narrowing towards consensus, but I have not lost my inclination to push frontiers. In late 2013, I decide to have stem-cell therapy at the International Center for Cell Therapy and Cancer Immunotherapy in Israel, the clinic where the twins have their third stem-cell treatment the same year. Dror organises everything on my behalf.
I understand of course that the therapy is experimental and any out- comes hypothetical. Equally, though, there is growing evidence to suggest possible benefits for neuropathies and even depression. I am a firm believer that stem cells have great future potential since they target causes and not simply symptoms, as is currently the case in conventional treatments for refractory neurological disorders. The risk are acceptable and the centre highly reputable. On balance, I have little to lose.
Under sedation, I am given infusions of MSCs from cord blood, administered by lumbar puncture into the spinal fluid. Afterwards, my head is encased in a terrifying-looking metal contraption that emits low-intensity acoustic shock waves. It has the appearance of an instrument of torture or punishment. This technique is intended to shunt the MSCs to the brain and promote uptake of the cells in the substantia nigra, the region affected in PD.
It is an excruciating experience. The room is small and the machine large. I remain wide awake. Immobilised in that helmet, vulnerable and helpless, I feel that I am the lead protagonist in a horror movie of my own making. I fear, too, that the situation is a prequel for the unspooling narrative that awaits me in the months and years to come.
Medically, the procedure is uneventful, but on my return to Australia I am in a bad way. I am told later by others that I was dazed and almost catatonic; functioning, but only by the barest of margins. It takes me a week or so to recover to my former state of enervation.
Throughout my long ordeal, now stretching over many years, the grandchildren are my balm. I am long free of the rigours of active parenting, and the demands of the workaday world have receded. There is an uncomplicated fondness and sweetness in my relationship with them that is like no other. In my current struggles, they pull me from my obsessive self-preoccupation and help to sustain me.
Jasmine, Dov and Lev remain in Israel, and I continue to miss them acutely. Gene’s and my reasonably frequent visits there, and theirs to Sydney, are a bright spot that I crave.
To our great delight, Emile and Carrie and their boys, Milo, Zachy and Cy, live close to us and are a constant in our lives. As I write, Milo, born the same year as Dov and Lev, is eleven, Zachy is ten and Cy is seven. The are little characters, with personalities so diverse it’s a wonder they have come from the same gene pool. Put them together and a free-for-all ensues: fisticuffs, pushing and pulling, yelling and vocal protestations of innocence from the aggrieved party. Alone or when there are just two, it is a different matter—each comes into his own.
The boys regularly sleep over at our place individually on a Friday night; sometimes, one of the other brothers will join us for Saturday. Often, the next morning, we meet Emile, Carrie and the other boys for breakfast at our favourite cafe, a stone’s throw from home, where we are longtime regulars. It’s a simple, intergenerational family ritual.
On sleepover nights, I enjoy playing chess with Milo and Zachy as I did with their father and have throughout my life. The brothers are coming along nicely for their ages. These days the game tests my concentration and my mental calculus of potential moves has slowed, but it pleases me that there are now three generations of chess-playing Sherman boys. Soon enough, they’ll be thrashing me.
The tennis gene, too, has been successfully transmitted. The boys have lessons, and play with Emile and Carrie. I used to join them. It is beyond me now, though I still spectate as often as I am able. The same goes for soccer, which Milo plays avidly, showing excellent tactical moves on the field. Though my championship days are a memory, I am capable still of a game or two of table tennis, which we all enjoy during family gatherings at the farm and at Emile and Carrie’s house.
The boys learn instruments—Milo plays trombone, Zachy oboe, and Cy piano—and perform in school concerts, which are a regular feature of Gene’ and my calendar. When I am able, I attend with enthusiasm.
My heart swells to see them on stage under the lights, little faces focused hard on the task at hand.
On Tuesdays, I pick Zachy up from school and we spend the afternoon together, sometimes stopping for an ice cream or a milkshake. He has taken a shine to Miracle, our dearly loved rescue dog, and I wonder if we have another little animal lover in the making, perhaps like his Aunt Ondine.
Zachy is undoubtedly headstrong, an extrovert and a provocateur, as well as an unstoppable ball of energy. He has the distinction of being the only family member to have broken my normally placid demeanour with his antics, provoking reactions in me that I did not know I was capable of. Equally, he has a high level of empathy and a rich emotional life, apparent in his infinite curiosity about people’s lives and the ins and outs of human relationships. He’s a reader, too, and always has a million questions. One day, he asks if Hitler killed children. When Gene replies that he did, but a long time ago, Zachy’s response floors me. ‘Where was God?’ he asks.
Milo is more of an introvert, and enjoys his close relationships with his firm group of friends. He is naturally very funny, always has an apt turn of phrase, and possesses the ability to sum up a situation in one well- crafted line. Like many or most boys his age, including his group, he is an aficionado of the dark arts of computer gaming, and clearly a master of that domain. To me, it is a foreign country and I can only watch on, bemused and clueless. At times, extracting Milo from his virtual world is no easy task. Back in real life, we are both partial to Monopoly and enjoy playing each other, as I did with Emile and, before that, Ron. Milo is competitive, adept at strategy, and loves anything where one can win: board games, computer games, ball games. Both he and his two brothers are big fans of Lego, and
tremendously skilled at building complex structures and fantastic beasts.
As for Cy, he is the littlest, shy and affectionate but able to stand up to his big brothers. He is curious and engaged, wants to compete on his brothers’ level, and never takes a backward step. His nature is open and sunny, and he brings a great deal of joy. Cy loves his Mr Men books and is a big David Attenborough fan. It is a pleasure for me to watch documentary series with him and see his eyes opened to the wonders of nature. I only wish I was up to taking him to the kids’ sleepovers at the Australian Museum.
Arguably, too, Cy is the most intrepid of the boys. He does aikido, and I am convinced he is part chimp. No vertical structure is safe from his climbing. As we walk the streets of Woollahra, he clambers up poles, buses and cars whizzing by within centimetres. He must regularly be peeled off or coaxed down to avoid catastrophe. I worry that I can’t keep up.
Gene has engendered in the boys a love for books, and they all enjoy her reading to them, though the older boys are now strong independent readers. With Gene, and under her guidance, they make regular trips to bookshops and the library, and visit galleries and museums.
As for me, despite all my efforts, I admit that at times I feel I am letting the boys down. I am no longer spry, and I lack the verve to match my grandchildren’s youthful vitality. It is more reason to give Milo, Zachy and Cy all I can of myself while I am able. I hope that the regular, unhurried time we spend together, our many affectionate interactions over their formative years, will lay down memories they carry into their future lives. I want each to know that he is beloved.
I take comfort, too, that they will not, or not only, remember me as I do Grandfather Phillip, a shrivelled spectre hovering in the dark hallway of Granny Malka’s Joburg flat, remote and jabbering.
In 2015, it is once more around the mulberry bush. One or two experts still hold out against PD, giving my situation a degree of uncertainty I am keen to resolve—at least as far as is possible, considering the difficulty of definitive diagnosis and the high rate of misdiagnosis. And I am desperate for treatment options that will work to control my symptoms.
I see a professor at Westmead Hospital in western Sydney, a specialist in Parkinson’s, on the say-so of my original neurologist. In the first instance, he mentions dystonia—I note the parallel again with Dov and Lev—and refers me to the Westmead Movement Disorder Clinic, which he leads, and where my case will be rigorously reviewed by his team.
At the clinic, I am placed in a seminar room and observed by the thirty or so crack physicians who comprise the neurology unit, seated in rows before me. I am required to walk this way and that, asked to perform certain actions, questioned on one or other of my symptoms. It is confronting.
The news, when it comes, is not news anymore. Their consensus is that I have mild to moderate Parkinson’s.
Naturally, Gene, Emile and Carrie, Ondine and Dror are desperately worried for me. Collectively they feel that, to some extent, I am caught up in a medical maelstrom of my own making, that my insight into my condition is clouded by spiralling anxiety and a proliferating schedule of medical appointments. They come eventually to the view that my multiple medications need to be brought in hand, and my endless rounds of consultations seeking opinion after opinion curtailed. Their feeling is that I can no longer see the wood for the trees.
As he did in the mid-2000s, Emile leads an intervention of sorts. Since Ondine and Dror’s departure for Israel in 2012, he has been the adult child who shoulders most of the load, witnessing my ups and downs, with the downs now predominating. We continue to share business premises—his office is across a glass-walled courtyard from mine—and interact often during the working week. At our frequent family get-togethers, too, we spend time at close quarters. Our particularly warm and close father–son relationship has deepened over the years.
I agree to check in with Emile on any medical consultations I propose. He attends appointments with me as his schedule allows, moderating my tendency to seek confirmation of yet another medical problem, and keeps tabs on the diagnostic state of play and on my various treatments. In an effort to achieve some clarity and equilibrium, I agree to reduce my cocktail of pharmaceuticals under medical supervision, and I taper off some of the more problematic medications, including the benzodiazepines. With Emile’s and the family’s encouragement, I continue to put effort into alternative means of improving my wellbeing: walking, hydrotherapy, yoga, light sessions with a personal trainer, and so on.
All of my troubles notwithstanding, I come into the office every day. My exceptional executive assistant, Natalie, who happens to be a trained psychotherapist, is there for me and the family, too, as she was during my quest to cure the twins. Natalie efficiently organises and coordinates everything from my schedule to my medications, accompanies me to appointments and takes notes on the discussions, reports back to the family, and provides overall logistical support. Her insights as I confront my condition, and her endless patience and empathy, are an enormous moral support. I know that I am truly fortunate to be surrounded by this circle of care, but I remain physically unwell, and marooned in the doldrums.
In 2016, it is my last hurrah on the diagnostic merry-go-round. I am examined by the neurology group at St Vincent’s Hospital in Darlinghurst, the major teaching hospital in the east of the city, close to my home. The specialist clinicians concur with their counterparts at Westmead, diagnosing mild to moderate PD.
I decide that I will continue under the care of the lead clinician at St Vincent’s, a senior neurologist. He remarks that he is astounded that my original specialist maintained I did not have Parkinson’s. He is confident, however, that the progression is extremely slow and that my symptoms will be able to be brought under control, significantly improving my quality of life. He says I should see the condition as I would any other chronic illness—that is, as able to be managed—and proposes a way forward for treatment. In that respect, the interaction is encouraging and gives me cause for hope. Independently, I will also pursue promising adjunctive therapies, including medical cannabis.
I come out of the case-review sessions with one durable impression. Several times, I tried to communicate to the medicos my most troubling symptom: intractable, debilitating anxiety that continues to plague my every waking moment, robbing me of my strength and vigour and stealing the very breath from my lungs. But the emotional dimension of my illness, it seems, does not compute. The assembled physicians simply cannot hear me. The jar lid jams tight.
It is old news that Descartes had the wrong end of the stick. We know intuitively that it is difficult or impossible to disentangle the psychological and the physical—that our minds, emotions and bodies are enmeshed, and affect each other mutually.
I have had my share of emotional trauma, and my feeling is that it is cumulative. There is a wellspring of psychic pain inside me—my own and that of others, which I am convinced I have osmosed.
Then again, we all suffer travails to a greater or lesser degree, and most of us come through in one piece, health more or less intact. The life of each person we pass on the street is a book of joy and tears; my own family is well and thriving despite epic tragedies; and at the extremes of human experience, Holocaust survivors have gone on to live long and active lives.
As for me, I find myself brought low by infirmity. The interplay of body and mind is subtle, cause and effect slippery and elusive. For all my endless ruminations, the ultimate source of my state of being remains obscure. I can’t ever really know whether it is my grief that has seeped into my cells and, through some cryptic transformation, become flesh. There’s nothing for it but to go on.