An unexpected birthday ‘present’
In March this year we celebrated my husband Steve’s 59th birthday… in an isolation room at Cardiff hospital. He had not been out of that room for 10 days having had a stem cell transplant to attempt a cure for his Acute Myeloid Leukemia (AML) – a blood cancer.
Role back the clock two years – almost to the day and Steve could not think of anything he wanted as a birthday present from me. An email came in offering a deal on a private health check and despite feeling fit and healthy, he thought that 57 was a good time to have a ‘baseline’ health check. So that was his present! A few days later whilst enjoying an Easter mini break with friends he got a call from the doctor. It was Good Friday. He was told that all his functions were amazing except that his blood counts were worryingly low and that he should see his doctor as soon as possible.
That health check changes both our lives for good. He was diagnosed with myelodysplasia – which later turned into Acute Myeloid Leukaemia (AML)
For eighteen months, with my support, Steve chose to look at as many ways as possible for non-drug, holistic ways back to health. We both held, and still hold that restoring true health without drugs or invasive interventions is possible. Yet after much research and life-style changes, with all humility we had to acknowledge that we didn’t have enough knowledge, skill or money to find the key to this possibility. In October last year Steve was told that his Leukemia counts in his bone marrow had gone from 14% to 52% and that it was unlikely that he had more than a few months to live without trying for a stem cell transplant. Within more or less 48 hours he did a 360 degree turnaround and was in hospital for his first aggressive round of chemotherapy.
Here are some of the ways that NVC has supported me (and us) through our journey.
Acting from love and choice rather than duty
I discovered that if I was not to get bogged down with becoming a “carer” (which neither Steve nor I wanted) then I needed to act from love, service and contribution rather than fear, duty or any sense of “have to”. To do this I needed to listen to the voices of fear and ‘worse-case’ scenarios and notice the weariness, the sense of loss-of-what-was and the contractions in my body when they happened. Not just to listen, but also to welcome them, acknowledge them and value them as signs of my caring, aliveness and love.
Throughout the first couple of years, Steve and I did a lot of witnessed unraveling of our fears and emotions – with others – sometimes one, sometimes a group – holding empathic spaces for us. We have talked together and separately and both been very open with others about our journey.
Stepping into a ‘we’ mentality
One of the things I needed to fully embrace was that my needs still mattered and counted as much as Steve’s – despite him being the ‘one with the illness’. We are a team: on this journey together.
Keeping my heart open
Early on I also vowed to let myself carry on fully loving Steve even (maybe especially) when I thought he might die. This might sound a strange thing to say…”well of course” I hear my today-voice say… but there were times when I could sense ‘protection from loss’ wanting to creep its way in: a slight closing of my heart “just in case”. Again, I have learnt that the heart doesn’t stay open through force of will – it naturally flowers when I fully embrace my fears with acceptance and gentleness. This has included at times noticing the numbness of feeling and realizing that I am ‘not OK’ despite lack of surface feelings and that I needed to find safe spaces with others so that my fears could become conscious and my tears could flow.
Grief through gratitude
For me, I am discovering, grief flows best when I let myself be touched by small or large acts of kindness: a friend who tells me to call anytime day or night if I need support; friends who come and do my ironing for me when I feel swamped by all the jobs I have piling up; friends who come and work alongside me on our land as Steve is incapacitated by drugs and long hospital stays; offers of empathy; people who go out of their way to help us, who have cooked us food, let us rest as they serve us, offered lifts, fed our cat; a stranger who offered me to stay in her house overnight in Cardiff (a 2 hour trip from home) when visiting Steve in hospital…the list could go on. And of course, the biggest gratitude is to the young anonymous German man who donated his stem cells to a complete stranger. As I let the gratitude in I discovered that often, this was a much surer way of allowing the grief to flow through me than talking about my fears.
Listening for whose needs are highest priorities
Throughout this time there have been calls for my contribution: from Steve of course, from my daughter and stepchildren, my 85-year-old widowed mother and from friends. If I had said ‘yes’ to everything I might have worn myself to the ground! For much of the time I have needed and wanted to prioritize Steve’s needs as part of the “we” that we form as husband and wife: a knowing that this is how our team of two is best cared for. And there have been times when it has been totally clear to me that my energy and love is best focused elsewhere: looking after myself (having alone time, sleeping or resting, keeping on top of day-to-day jobs instead of going to hospital to visit Steve…); supporting my daughter when ‘no one else but Mum’ would do; helping my Mum move house… Sometimes, I have needed to find peace with knowing that Steve would not have as many visits in hospital from me (or quality of food) as I would have wished for him.
Staying with what is and not what maybe
There have been so many times that have tempted me into trying to plan for an unknown future. A big part of my own discipline has been to stay with concrete knowledge and not let myself dwell in all the possible stories my mind could make up about the future.
The unexpected benefit to this is that as I embrace the simplicity of the now I feel more fully alive and at peace. That said, there have also been a few times when I have somehow needed to ‘rehearse’ for being alone e.g. allowing my mind to imagine what it would be like if I am alone without Steve (whilst acknowledging that it would likely be very different to anything my mind makes up!).
Six months post-transplant, we are certainly not out of the woods as I write this. Steve has acute kidney injury as a result of all the drugs he has been on, his new stem cells are not yet fully functioning so he is blood transfusion dependent and he is needing to make 2-3 visits to the hospital per week for tests, blood and saline. And yet we are both in surrender to the process and choosing to make the most of the hospital trips and the precious other time we have, rather than telling our selves a story that life ‘should’ be different than it is.
Penny Spawforth is an CNVC certified trainer. She runs Living NVC retreats and workshops in SW Wales as well as offering a yearly NVC camp in Pembrokeshire. She is one of the small team of three who runs this website, largely on a voluntary basis.
Her website is www.thebridgebetween.co.uk