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
Thanks Di, this is all true. I would be happy for now if the goal posts stopped moving but that seems not to be so yet. Hope, faith, and trust that we keep finding the courage to meet each day as it arises. whatever it may bring. Vino evening would be great. Trish x
I stand with you in that space; I am here if you want a coffee; or rather a glass of vino! ;a hug; or if you want to just scream. I think it was in that first month with Michelle that I passed my poison point, when she started NSAID’s on a daily basis. Even that freaked me out! We moved through 8 disease modifying drugs; and now on Methotrexate, high dose Revellex and Prednisone. We found the morphine patches did not work. So we left them. What you say so resonates. I look back now; knowing I have done the very best for my child. And ironically, that this drug poison point is indeed better than the disease poison point. This hideous monster of a disease- and I say- that poison is worse. We have to get her into remission. Its just that.There is no looking back; just do it. She can and will get there. One stupid and often horrible day at a time. That is why I,completely against who I previoulsy “was”, tattood at a point the word “HOPE” on my ankle. Its a living memory of every day, that I would look down,(and sometimes still do) and just keep putting one foot in front of the other. Lots of love Di xx
Hi Trisha, You and your daughter’s experience has touched me deeply and I send you both a warm, gentle embrace as you journey on this difficult path. Sending much love Barbara
Thank you Barbara. Much love, Trish
Dear Trish, my how I understand your struggle. Your words resonate and evoke memories of a place in time 5 years ago when Ben was diagnosed. The roller coaster ride began and my world stopped and my focus zoomed in on my son and his welfare, all around was as before, but everything had changed. My ‘poison point’ was on the day he was admitted to the Marsden – the day after his diagnosis was revealed, the most dreaded Cancer – he was launched immediately into an intensive chemotherapy protocol. I drove him to the hospital on my own and had to sign the consent forms to begin, the first round being a lumbar puncture where chemo drugs were going to be injected into his spine. The undiluted fear and panic was overwhelming. I questioned the young doctor who held the forms, whether it was really necessary and whether we could stop the treatment early if it worked…looking for any alternative to this so called necessary evil that is poison, that I was consenting to administer to my child.
As they rolled him into theatre and I had to leave him in their hands, I cracked! I ran outside, called Brian at work and begged that we find an alternative therapy, that we stop letting them poison our boy! It goes against every instinct a mother has. I empathised recently with that young mother who ran away with her son to prevent his radiotherapy treatment on a brain tumour.
None of us were prepared for that morning, least of all me. Poor Brian was 50 miles away at work, he called my parents who were home looking after the boys and sent an SOS to my brother in Cape Town, who managed to get through to the ward we were in and talk me down from the cliff face!
Ben came out of theatre and I regained composure, and I’m pleased to say we got through. The chemo did the job, my prayers were answered, my boy made a full recovery!” One step at a time, one day at a time”, was my motto. The chemo was a necessary evil, and although it wasn’t easy, I am grateful that Ben never suffered pain – that was my silent fear. I could cope as long as he was ok and not in pain.
So I stand beside you, and wish you and your daughter strength to get through the challenges ahead. I Pray that the medicine does the job, that the pain is relieved and that recovery is complete.
Thank you Lynne, for all that you share here, for your strength, for reading my posts, and standing here with me, for being the friend that you are through this with all that you have been through with Ben and in this past year. This journey has certainly given me so much more compassion for the parents that struggle with their own poison points in the treatment of their children, and I can only feel for those that can not cross this barrier. We all have our own choices to make and how to manage these. Love, Trish