Last November I posted a health update that reflected a rather bleak outlook for 2019. I had watched my physical health deteriorate under the influence of Parkinsons to the point that most days were spent with hours of disabling tremors, a window of functionality that might last anywhere from one hour to many hours, followed by many hours of dyskenesia.
I was scheduled for a promising new treatment in February 2019 but this was cancelled when it was discovered that the other disease rattling around in my body, chronic lymphatic leukaemia (CLL), had advanced to the point I would need chemotherapy. The lowered immunities chemo brings meant the Parkinsons treatments would need to be delayed.
The outlook was made a little more grim when a late January consultation revealed that the type of chemotherapy I required would leave me with permanently lowered immunity. This would put the Parkinsons treatments permanently out of reach.
But at the same meeting a glimmer of hope emerged. My haemotologist suggested that I try an alternative treatment for CLL. This is very new but has proven to be extremely successful in keeping CLL under control. I will join a trial at the end of 2019, and given an improvement in my blood levels since the previous visit, my doctor was confident we could wait til then.
And so it is that two weeks ago I was able to start a new Parkinsons treatment. This sees me wearing a small pump that sits in a bum-bag like holster around my waist. It pumps a steady and continuous dose of medication into my body via a tube that reaches down into the duodema, a place in the small intestine that rapidly absorbs liquid medications.
The results have been incredible. From around 6am to midnight each day I have been spectacularly free of debilitating tremoring and dyskenisa. I still get some patches of tremoring and dyskensia but these are very mild, infrequent, and not debilitating. It is as if my body and my life have been given back to me. I have recovered energy levels of old. I am doing things I never thought I’d do again – cooking meals, taking walks, writing, spending a full day working, getting out of the house without any concern that my body may seize up or send me into dyskensias. I anticipate getting my drivers license back, getting out in my boat, and taking holidays with Sandy and the kids.
At the moment the tube delivering the medicines into my body runs through my nose. Not the most attractive look! On April 2 the tube will be removed from my nose and surgically implanted through my side.
The treatment doesn’t cure Parkinsons but controls the symptoms. Like all existing Parkinsons treatments it will eventually prove insufficient. But for now its given me a window. I don’t know how long. 2 years? 5 years? More? However long it may be I am relishing this unexpected and stunning turnaround.
Many of those who follow my blog are aware I have Parkinsons. Less well known is that the same year (2012) I was diagnosed with Parkinsons I was also diagnosed as having Chronic Lymphomatic Leukemia (CLL). CLL usually progresses very slowly and doesn’t need treatment for many years. So at my last six monthly checkup I was expecting my Doctor to give me the same message I’ve heard at every checkup before – that my white blood cell count has only increased by a marginal amount and there’s no need for treatment for a long time yet. Instead my doctor told me that my white blood cell count has more than doubled in the last six months, which is the trigger for starting treatment.
So it looks like I’ll be starting a 6 month course of chemotherapy in February next year.
The timing is not the greatest. Those of you who see me regularly will have noticed my Parkinsons symptoms have grown decidedly worse over the last 6 months. I now spend large parts of each day with tremoring limbs and very tight muscles or my body in a kind of funk that I call my “drunk phase” because I sway uncontrollably and my speech can get a bit slurred. I do get periods where my body kindly cooperates and I am able to function quite effectively. These periods are however becoming shorter and much less predictable. To date I have been able to time my medications so that I would be in one of those functional phases when I had to go out to meetings, gatherings and the like. It’s becoming harder to do this.
I was due to scale up to a new Parkinsons treatment in February. This promised to give me much greater symptom control and potentially take me back to where I was a number of years ago. Unfortunately having this treatment while having chemotherapthy is not advisable and it looks like my upgraded Parkinsons treatment will have to wait until the chemo is completed. I had been looking forward to the big health boost this treatment promised, so the delay is disappointing and when combined with chemotherapy will make my life challenging (and in the process make it challenging for those around me too).
The journey so far has had its difficulties. I have sat on footpaths, train stations and ferry wharves, sometimes for hours, waiting for my legs to remember how to walk. I have exhausted the supply of good TV shows on Netflix, Stan and Amazon Prime as I lay awake through the long hours of the night waiting for the tremoring to stop so that sleep can begin. I mourn the lost opportunities to do things with Sandy and the kids. Lachlan in particular, being our youngest, has missed opportunities for doing dad and son stuff together, which fills me with regret. I grow bored at being house-bound and disappointed that I cannot contribute to my family and community in ways I once took for granted.
Yet I am in good spirits.
In the last few years I have discovered myself, life, God, and grace in ways that I never expected. In many ways my life is richer, my heart more thankful and my joy deeper than ever before.
I have brilliant doctors, a Parkinsons specialist nurse who is unbelievably good at her job, live in a country where very expensive medicines that I need are made available either free or at affordable prices, and have a form of cancer for which the survival rates are very high.
I have a life partner, Sandy, who takes my breath away with her love, generosity, kindness, care and extension of herself in a myriad of ways we never imagined either of us would need to. I have children who bring me joy, make me laugh and love me deeply (even if they insist I’ll be an ugly bald man!). I have a mother, brothers, and sister who are incredibly loyal, generous and supportive.
I belong to a church which is full of people who surround me with constant and generous lashings of love, kindness, support, and prayer. I am blessed with friends near and far who do the same.
And I have faith in my Creator, the ultimate source and originator of love, grace, generosity, kindness, compassion and hope, and who fills me with a sense that whatever lies ahead – whether the realisation of our worst fears or the triumph of life – that nothing can separate me and my family from love, from hope and from grace.
Blessings my friends.
One of the things I’d been looking forward to this year was taking up invitations to speak at conferences in Vienna and Jakarta. A couple of weeks back I wrote to the organisers of those conferences to notify them I would need to withdraw, for over the last couple of months I have experienced a substantial deterioration in physical health that makes international travel very difficult. My meds give me peak periods during the day when my body movement is very good, but during the troughs it is difficult to move around. Moreover some days the peaks are long but other days it is the troughs that linger. Managing the this across time zones, jetlag and long flights is not really feasible.
My physical deterioration means I have also made the decision to sell my boat. My life since childhood has involved boats. The splash of salt spray across the face while motoring across the bay, the gentle rocking of the boat under a sunlit sky while moored fishing, and the all-nighter in which I get to witness the sunrise from the vantage point of my boat have been delightful experiences. I am a classic Myers Briggs extrovert – I get energised being around people – but the one place I could spend hours on end on my own was out on the water. Saying goodbye to my Haines Hunter will be more difficult than saying goodbye to Vienna. I will miss the opportunity to visit Vienna, but I will grieve the loss of my autonomy on the water.
It seems to me that from the day we are born life is a continual process of saying goodbye and welcoming the new. We say goodbye to the womb but enter an amazing new world; we go to school, make friends, find a sense of place, then say goodbye to the school years as we enter the adult world of work; when I married I said goodbye to the single life and began life as one part of a couple; when we had children we said goodbye to life in which the household was just us to begin life as parents; we finish our years of working and say goodbye to something that gave us great meaning and enter retirement; as we grow older we say goodbye to people we love as they pass away and welcome newborns into our world. With each goodbye comes the pain of loss, wistful memories, and things for which to be grateful. Yet each goodbye also brings a hello filled with possibility, new discoveries and fresh horizons. For me the key to navigating these changes is to accept that one era has passed, to look back with gratitude for what I was able to enjoy during that phase, to allow myself to wistfully remember the good of those times, yet to look forward to the new things to embrace, new experiences to be had, new dimensions of the journey to be found.
People often inquire how I’m going with my Parkinsons, so I thought I’d provide an update…
Over the last few months I have deteriorated a bit. I take meds every 3.5 hours. When they have fully kicked in I move freely, but as they’re kicking in or wearing off my muscles stiffen and my hands tremor, sometimes wildly, and I shuffle about the house like an old man on speed. Some days the meds kick in very quickly, other days quite slowly. At these times it’s the little things for which I need fine motor skills that prove challenging.
…buttoning my sleeves
…turning down my collar
…typing a text message into my phone
…holding a full cup of coffee without spilling some
…turning over in bed
I’ve had some strange adventures on facebook. My tremoring hand will sometimes go into a kind of rapid-fire mode and as it moves erratically across a page has seen me inadvertently open dozens of photos at once, hit ‘like’ buttons I never intended to hit, and accept rather than decline some dubious friend requests. The same dynamic sees me quite regularly hit the ‘end call’ button on my phone while trying to answer it, and hit send on half-completed texts.
I no longer drive long distances and drive locally only when my meds have kicked in. I am pretty useless for chores while the meds are kicking in or wearing off.
At the end of the day most of these things are nuisances that slow me down but haven’t stopped me from doing too many things. Through it all I remain surrounded by faith, hope and love; blessed by a wife who never ceases to amaze me with her generosity and grace. Life is good.
It has finally arrived, that moment where I reluctantly admit that my body will no longer allow me to operate at the pace I had grown to love nor to do all the things I have loved to do.
The last two weeks saw me at three back-to-back conferences: the Beyond Justice Festival in Canberra; Baptistcare Australia national conference in Perth; and Micah Australia’s Voices for Justice. I’m used to schedules like this, and in the past have always found them energising. But this time was different. By the second last day of the Micah event I was much more tired than I normally would be, my tremor was more pronounced than usual, and my muscles stiffened for longer periods of time than they otherwise would. I found myself needing to skip some events to simply rest and recuperate. For the first time Parkinsons was more than a nuisance. Up until this point I could still do just about everything I wanted to, I just had to do it a little bit slower or find a workaround. But I have now reached the point where there are some things I simply can no longer do.
No doubt others have sensed this earlier than I have. It is the nature of the beast that I am reluctant to admit to the limitations of the disease, holding out against them as long as possible. Indeed, I have not wanted to admit it but I have seen the signs for the last couple of months, as I found it harder to get going in the mornings, not really hitting my straps physically until my meds kicked in mid-morning/lunchtime.
I do not feel angry or sad. I knew this time was coming, and now that it has arrived and I am willing to recognise it, it just feels like a natural stage of progression. I do feel a sense of loss, not a sharp pang of grief, but a wistful goodbye to one stage of life.
Not that I’m ready to give up just yet. I’ll continue to pursue justice and work with churches to help them get their head around issues of justice and take action on them. But for the first time in my life I will have to very intentionally pace myself, making sure I focus upon those things that are really priorities, and maximising those times I am physically most able.
I expect this season of slowing will be frustrating but I also expect it will bring its own gifts. As I say goodbye to the full throttle phase of my life I look back with thankfulness on what it gave me. It has passed, and this post is my way of saying goodbye to it and saying hello to the slowing phase. “Goodbye old friend, it was a pleasure to walk with you. Welcome new friend. I may be slow to learn, an impatient companion, but I look forward to the ways you will grace my life.”
Just about everybody I know wants to lead the good life, but what does that mean when your body is slowly deteriorating and making you increasingly disabled?
I have found the writing of Miroslav Volf helpful. In the book A Public Faith, Volf, a Professor of Theology at Yale Divinity School, describes three phases in Western thinking about what makes for a good or flourishing life. For many centuries it was widely accepted that to flourish was to love God and be loved by God and to love one’s neighbour and be loved by once neighbour. In the 18th century the rise of humanism saw love of God dropped from the formulation, but the emphasis remained upon love for one’s neighbour. In the late 20th century, love of one’s neighbour was replaced with love of oneself as the good life came to be seen as the one in which I gain experiential satisfaction.
I find experiential satisfaction an inadequate framework for making meaning in my life. As my body deteriorates under the ravages of Parkinsons and leukaemia the opportunities for experiential satisfaction will diminish. Yet by embracing an older wisdom my life can continue to be invested with meaning. Even though I deteriorate physically this will not prevent me from loving God or being loved by God, nor from loving my neighbour and being loved by my neighbour.
And I’m not alone. It’s remarkable how many people who experience tragedy or suffering, derive meaning by using the tragedy or suffering to bring benefit to others. They start a foundation or become campaigners. Either way they too are finding the notion of experiential satisfaction an inadequate structure for meaning and are reverting back to the focus on love of neighbour.