Sitting again today in my favorite orthodox colleague’s office as he puts up a drip for my daughter. A dear kind soul and friend who listened deeply to my story of distress and worry, earlier this past year, when few others did and we had no answers for what was going wrong with my daughter’s health. Who had the presence of mind to confer with the rheumatologist who ultimately made the first diagnosis and has been her treating specialist ever since. Offering his time whenever I call to say “please, I need you” and we need another IV cortisone infusion, “can we come in tomorrow?” Some one to listen to my concerns about the multitude of medication I am involved with in administering to my own child, and, as a contemporary, can understand my theme for this week. Can hear and appreciate my sudden panic about the amount and toxicity of all these drugs, let alone the continued severity of the illness, and can reassure me through his eyes of improvement witnessed.
The theme for this week…? Ruminating around my brain? Poison! Toxic substances! Coming up against the ultimate ‘poison point’. What is your poison point? What is that point where you feel you are crossing a perception barrier in your mind? Perhaps that point where just ‘this one more thing’ is that bit further than feels acceptable. Have you ever reached it? Crossed it? It may not even be anything to do with health or medication. I encounter it often, though, in my daily work, especially around the issue of morphine. When I start that dreaded discussion with patients and families around taking morphine for significant persistent pain, the many preconceived ideas and accepted notions, ones at times we did not even know we had, come out, the ‘poison point’ shows up. For morphine the issue tends to be around fears of addiction and the starting of morphine indicating that this life may soon be coming to an end. The fear of the unknown and the unknowable. Coming up dramatically against the true impermanent nature of this life. It often takes much time and assurance to get past this ‘poison point’, to reassure that addiction is rare, especially when persistent pain is the natural antidote, and many, when pain is relieved, see improvement in quality of life, and at times even quantity of life. Even for me, who is daily immersed in this, it took a second opinion visit last year with my daughter in Cape Town with the head of the paeds rheumatology department there, who commented that he had rarely seen a teenager in so much pain before, to see what I refused to see, to ensure that I respond to my daughter’s continued requests for significant and adequate pain control. To finally start her on opioids. So I have nothing but compassion and understanding for the resistance to meeting and engaging with the ‘poison point’. For that perception barrier is a difficult one to see, to meet, to acknowledge, to engage with, and ultimately to cross over.
This week, having long ago acclimatised to prescribing opioid patches for my daughter I ran up against my own ‘poison point’ barrier. So very insidiously and unannounced. That one medication, that when I was at medical school in the 80’s was perceived as the most toxic medication to administer. My friend and colleague today agreed with me and came up with the same name. Methotrexate. So odd this personal poison point, having quite easily come to terms with newer more toxic medications that my daughter takes for her crossover connective tissue disorder and systemic juvenile arthritis. But methotrexate, this week, was just that poison point too far. Especially as I was the one to administer what her rheumatologist had so blithely scripted, without any fuss what so ever. Point 5mls subcutaneously administered once a week. Well, having stopped the other medication last week, observing the symptomatology dramatically increase again this week, waiting to start this new medication, with the increased pain, weakness, fatigue, and more, keeping my daughter bedbound upstairs, as the stairs were too steep to come down on her own during the day, we finally started the methotrexate a few days early. Easy to draw up, right? Easy to find the appropriate spot. To push in the needle and slowly inject. But somehow when I was drawing out the needle I started to sweat, to be overcome but a sudden realisation of what I had done. I had just injected ‘the most toxic medication of my med school memory’ into my own child. I had crossed that ‘poison point’ barrier. In that moment there is no help for this thought, for this sensation, for this realisation. Even as rational thought tries to push against this emotion. Even as symptoms start to settle again within days.
This week, the irony not lost on me, a week of starting a new mindfulness program. The topic engaged with in week one is present moment and perception. As well this week training the new team that will be working with us from the adult palliative care service in paediatric palliative care all about dealing with affected families, communication, dealing with loss and changing expectations, pain in children, bereavement, caring for the carers. A constantly present felt irony of learning and experiencing the intimacy of my work from the inside out, from within my own life, my own family. This experienced role of being mother to a child with significant illness and how one is treated as patient, as parent, and the often disempowering role of both. Even today as I pushed my daughter in a wheelchair, for the first time this way due to her weakness, through the hospital I work in, to have my colleague administer her cortisone infusion, experiencing the emotions of – frustration with the multiple lifts that didn’t work; the many able bodied doctors and students that blocked up the few working lifts when they could walk the stairs; noticing how the orderlies are often the ones who are most helpful to patients as the medical staff (of which I am one) hurry by on their more important way. The many others that easily smile and help. How trivial these frustrations can be.
Surprise and perception. Many constantly arising. How is it we only often see only that which we expect to see or hear? That when we allow our filters to open and to engage more with the way things truly are we find them to be so different to what we imagine. The surprise and perception in my own learning of letting go of expectations of how my daughter’s recovery course should be. A constant lesson in humility and love. Learning to be with whatever arises every day. Whatever needs she has of me. To let go of my need for it to be any particular way, to accept that there is no help for me in this, or even for her. We walk this road one moment at a time. And if dealing with the ultimate poison point barrier is part of this journey, then that too can be engaged with. I’m sure there will be another one that arises in the future.
The only help for now is the refuge of being kind, of being compassionate, of ensuring love and connection, to my self, to my daughter, to my family, to those that love and care for us, and even to those that have no idea and may be unintentionally hurtful. Learning anew each day as I sit with loving kindness to direct compassion my own way, just as I teach it of others, and to all those I love who are affected by this orbit of suffering, and by suffering of their own.
(photo courtesy of Tara Brach FB page)
“Most of us need to be reminded that we are good, that we are lovable, that we belong. If we knew just how powerfully our thoughts, words, and actions affected the hearts of those around us, we’d reach out and join hands again and again. Our relationships have the potential to be a sacred refuge, a place of healing and awakening. With each person we meet, we can learn to look behind the mask and see the one who longs to love and be loved.”~ True Refuge by Tara Brach