Part Three: “This Will Never End”.
“What is your greatest fear?”, she asked.
I said nothing.
“Write it down on this piece of paper & then I want you to look at what you write for a whole minute”, she said.
So I did.
“This will never end”, I wrote.
She then gave me a phrase, asked me to precede my sentence with it & then look at it for another minute.
“I am having the thought that this will never end”.
I sat on the tiny red sofa in her office & I started to cry, then I started to sob. I didn’t think I’d be able to stop, I knew what was coming. The only choice I’ve had since all of this started is to surrender, but it often feels like mindfulness hurts so much, purely because of the subject matter.
Years ago I read Eckhart Tolle’s book “The Power of Now”, whilst dealing with the knock-on effects of a few crappy life situations. His book is intended to be a guide for day-to-day living, it stresses the importance of living in the present moment & avoiding thoughts of the past or future; so I’m not unfamiliar with the concept of mindfulness. The thing is, pretty much all of the situations I perceived to be difficulties in the past have had closure or at least some sort of manageable conclusion, but Dylan’s cancer diagnosis has been & will continue to be the hardest thing I’ve ever had to deal with & it often feels like it has quite spectacularly blown managing mindfulness out of the water.
I first came up for air once Dylan’s maintenance treatment started & it was at that point that a whole new shock wave hit me. Whilst being mindful in my day-to-day, making sure Dylan was comfortable & as happy as he could be, I was just starting to fully understand the enormity of the psychological strain his diagnosis was having on me.
None of us know what tomorrow will bring, tomorrow was a freedom I once unwittingly took for granted. Now, all of the tomorrows I previously assumed I’d be gifted, feel as though they have been morphed into one long indeterminable stretch.
The conflict between what life was like before Dylan’s cancer diagnosis & what life is like now is fierce. It doesn’t help to look back over the six years prior to the life we now live but neither does it help to ignore them. Either way those memories become more acute as each day passes; each day that passes counts as one extra day that Dylan has stayed alive. It’s bewildering, if I allow it to be…strike that…actually, it really is bewildering, if I allow it to be…ad infinitum; & there my friends, is a simple example of the forced balance of my everyday thought process; every single thought is chased by its opposite, over & over again.
The plain fact is that nobody could believe he was “still going” at diagnosis. Two days after his diagnosis, just as chemotherapy started his stats dropped & we thought we’d lose him; so yes, I’m going with bewilderment.
It’s at this point I’m supposed to “be thankful for every day” & “count my blessings”, which of course I do; it just comes at a price. The energy spent maintaining a balance between the past & the present whilst trying not to be consumed by the future is immense.
The words “Dylan has cancer” stamped a huge black full stop on life. I had little idea what it really meant to begin with, I just knew that I was helpless in fixing him. The only thing I do know is that I never asked for it & no matter how much time passes I still can’t believe it’s happened…is still happening…will continue to happen. As time passes I’ve caught up fast with some things & other things have crept up on me slowly; the ripple effect will never end.
It properly dawned on me that life was over as I’d once known it the first time I came home from hospital, having slept next to Dylan for days. I sat in our lounge, the house was empty, the Christmas tree was up, everything was still & unlit. Everything looked the same but somehow felt unfamiliar. The strange silence was interrupted only by the deafening sound of my thoughts. That was at the very beginning; I was yet to decipher the details & yet to grasp the impact.
Of course all I want is for someone to tell me that it will all go away & that Dylan will be absolutely fine; of course nobody can do that & let’s face it even if they could, things would never go back to the way they were…we are all so altered.
I search constantly for ways to cope with the notion that everything I thought I knew has gone, that I know absolutely nothing about tomorrow because quite literally all I have is today; I search for ways to cope with living in what feels like eternal limbo.
When I went to see the clinical psychologist in October 2018 she suggested something called Acceptance & Commitment Therapy (ACT); it teaches mindfulness skills to help individuals live and behave in ways consistent with their core values while developing psychological flexibility. ACT is based on the idea that psychological rigidity is a root cause of depression, anxiety, & many other forms of suffering. It seeks to help patients overcome excessive reliance on a problem-solving way of thinking & to facilitate a more open, centred & engaged approach to living.
The coping methods that worked for me a year ago hold little meaning now, but they’ve seen me this far. I know that I will need to continue to apply new coping methods well into the future.
At the very beginning I wasn’t far enough into the process of Dylan’s cancer to know or understand what would or could happen; at the very beginning I didn’t have time to think. I’ve since realised that I will never be far enough into the process because quite simply, this will never end. We are yet to learn of any long-term side effects Dylan might end up with, we are yet to see how much he knows or how he will see his cancer as he gets older. I baulk at the words “long-term” & “as he gets older”, it just sounds so presumptuous. I neither believe nor disbelieve those phrases, I’m just constantly suspended in a cloudy, viscous solution that allows little movement; it’s such a peculiar way to exist.
Of course, Dylan may be completely cured, he may go on to live a long & wonderful life & that is what we all desperately hope for. He may relapse & need treatment again or, well…let’s just leave it there for now.
I wish I could find a way to explain things in a gentler manner but wording the last couple of years gently is basically a paradox. I saw my child looking like he was slipping away, I can’t erase that image; I can’t erase any of what has happened & is still happening, so I have to accept it & then I have to find ways to be “psychologically flexible” in order to move forward, which in the main, I do.
I want to make space for all of these thoughts, feelings & experiences to come & go as they will; I want to accept them & let them sit with me without giving them all of my attention or letting them drown me but in all honesty, I occasionally have the compulsion to tell the concept of mindfulness (along with many other things) to just fuck off. I’m only human.
Having an unchanging stream of consciousness & being ever-present isn’t beyond the realm of man but this situation is stratospherically more distressing than family conflict, divorce or redundancy (all of which I’ve experienced first hand).
Having a child with cancer changes you. It changes how you feel when you smile & how you feel when you cry; it invades all of your senses. Cancer touches the simplest feelings & turns them, with gravity, into the most complex emotions; emotions that you no longer recognise; emotions that are constantly gnarled with a deeply scared uncertainty; emotions that you have to manage & unravel on a daily basis just to get out of bed in the morning.
“This will never end” because “this” is not just about Dylan’s cancer, as his mother, “this” is a relentless psychological process of dealing with whatever Dylan’s cancer brings, & that is completely unknown. A continuous loop of ‘will he live, won’t he live’ quietly rotates at the back of my mind daily. Life continues around me & I have no choice other than to adapt whilst re-educating myself on what it really means to live in the moment & recognise my thoughts as just that…thoughts.
Whilst I adjust daily to the psychological torment, clutching at the positive that another day has passed & Dylan is still here, the slow realisation dawns that this is now my eternal thought process. I don’t know if I can cognitively defuse the heavy hope that I carry because in this situation, hope is so much more than a thought process. I’m courageous enough to have hope within a situation I have absolutely no control over, but my hope is not blind.
I cannot express enough joy for Dylan’s continued existence & the seemingly great progress he is currently making through his lengthy treatment plan. Through all of this hell he has inadvertently taught me how to really see what’s important in life. He occasionally catches me staring at him & asks “What’s wrong Mummy?”, to which I automatically reply “Nothing darling! Nothing at all, you’re just so beautiful, that’s all”. I’m actually staring at him because I’m still in shock & that shock will never end, it will be with me for the rest of my life, rising up & poking me every now & again. Perhaps with time, the pokes will become less although I know the pain will remain the same.
(I am having the thought that) it is akin to eternal torture (do you see what I did there?)…it goes on & on. I occasionally get annoyed with myself for feeling angry that I need to be so intensely mindful all of the time but then I remind myself of my core values, of what is authentic & significant to me because I have to stay upright. My core values help to keep mindfulness at play & to find balance; I don’t know if you can have one without the other.
What I do know is that come what may, I am committed to doing whatever it takes to be psychologically flexible enough to recognise the heaven within this never ending hell.