Part Two: “Dropping the Anchor”.
In August 2018, I wrote an Instagram post using being “all at sea” as an analogy. I wrote about occasionally falling overboard whilst navigating the endless ocean of childhood cancer; I wrote about the small supportive flotilla constantly sailing nearby; I wrote that I thought I could see a shore not too far off in the distance &, I wrote about an anchor.
How ironic that only a few weeks later in September, the anchor I’d consciously decided to drop was now chaotically dredging the bottom of the ocean & savagely muddying the waters I’d spent so long carefully navigating.
How ironic that when I went to see the clinical psychologist in October, she talked about “dropping the anchor”, recognising which vessels are nearby & being aware of the ones that could help keep me afloat & those that might contribute to capsizing.
It was so uncanny, we even drew a picture – a boat with the people I love on board, surrounded by smaller boats containing other people I trust & feel comfortable to ask for help. We drew a compass & an island over which we wrote an arch of words expressing my values, & we drew an anchor which dropped to the seabed.
Then we wrote a list.
The list consisted of “excess cargo”; all of the things that create tsunamis, things that rock the boat, things I can’t or don’t want to carry, & things that cause the anchor to start dredging the bottom of the ocean. Whilst all of those things are what life throws my way, many are things I can choose to sail straight past or chuck overboard.
At the beginning, when you’re forced to set sail nobody can prepare you for the turbulent voyage you’ll have to navigate, there’s no time. You are brutally shoved from the shore without any tools, just the clothes on your back. The seasickness is overwhelming but you’ve got no time to actually be sick, you have to keep it all in because that boat that you’ve unexpectedly found yourself on is being rocked from side to side in the middle of a storm that you had no idea existed.
Two & a half years in & my advice would be to pack light. Take only who & what you need; if you find yourself carrying too much you will undoubtedly capsize or worse, drown.
Drawing that picture has helped me to visualise how to restore some balance & stay afloat. That picture has helped me to see that throwing excess cargo overboard is not only vital in keeping my head above water, it is also extremely cathartic.
At the outset you find that you train yourself to accommodate other people; you are so far removed from what was once normal that it feels as though you’re walking around with a spotlight on you all of the time & all you want to do is switch it off. But you can’t switch cancer off. What a cancer diagnosis does is put a spotlight on what you’re happy to live without; all you focus on is the person with cancer who you can’t imagine living without. Cancer highlights the things & people that you need & in a twisted way gifts you the chance to streamline your life, make your circle smaller thus making the ocean feel slightly more navigable.
The reality is that since Dylan was diagnosed with cancer I have had to bite my tongue so often not only to spare some people’s feelings but also to spare them looking like completely thoughtless entitled & dissatisfied blunderers. It’s a wonder I actually have a tongue left at all.
I have lost count of how many conversations & situations I have come away from in abject disbelief. Even Ruari has been accused of using his brother & father’s cancers as an excuse when reacting to hostile situations brought about by someone else’s aggression & lack of self-control. Where once you might have tolerated the few inward-looking inflated egos, you now look to avoid them like the plague; when loved ones are facing chronic illness & perpetual uncertainty, mindfulness & ignorance never walk the same path. Cancer is not an “excuse” to behave in a certain way but it certainly is a legitimate reason to avoid behaviour that messes with your equilibrium.
I appreciate that my levels of tolerance may have all but diminished & that most people are well meaning, but alongside those with decent levels of natural empathy, there are also those that will only get where I’m coming from on a part-time basis & those who won’t get it at all. I appreciate that that’s just their nature & I have absolutely no expectations or judgements; I just have no time to entertain the latter two as I’m already entertaining more that the vast majority of those people will ever be able to comprehend.
Two & a half years into this hell & people still tell me that Dylan “will be fine”, people still say to me “I know what you need to do”, or “you should take some time for yourself”, people still compare the most banal snippets of their existence to mine & my mind is blown by their unwittingly vacuous analogies.
There are those who just don’t listen, bulldozing their way into your precious space unannounced, uninvited & frankly unwanted. There are those who seem almost unaware of the problem, ignorant to the subtle requests for silence. There are those who compare this endless detention to waiting for a new kitchen to be fitted. There are those who use their generosity as a down payment, giving with one hand & taking with the other. There are those who tell you to get a “grip on reality” because their 50 year old brother is still alive after having had leukaemia as a child – we’re not even dealing with leukaemia & even if we were I can tell you how many children we alone know who haven’t survived it. It goes on.
There are people with so many self perpetuating problems, complaining about so much insignificant minutiae while I’m sitting here wondering if my 8 year old son will be cured from an acutely life threatening illness.
I now realise that in order to continue to move forward I can turn my back on whatever I please because if I feel like I need to turn my back, the chances are that it’s a problem that is just not important enough for me to continue to face.
I don’t expect many people to understand what it feels like to live with the permanent back-of-your-mind thought process of how long your child will live for, that is a particularly unusual position for anyone to find themselves in. I know how to manage my expectations & I know there is nothing anyone can do or say because there’s not one person in this world who can tell me what I so desperately wish to hear. I am so lucky that I have people who can quietly finish my hardest sentences for me. I am so lucky that I can see empathy in the eyes of those who have it; I now know who can handle my truth. I am so lucky to have people who listen to my fears without feeling that they need to do something to try to make me feel better; there is no cure to how I feel, it takes daily (sometimes hourly) management.
I can’t jump ship, I can’t even navigate it but I can make some decisions about which cargo I’ll carry.
My mother hasn’t seen me or her grandchildren for over six years; she chose that course of her own volition for reasons only an insane person would understand. Now here I am, a mother myself, in a completely insane position, wondering whether her second grandchild Dylan, will survive & live a life as close to normal as I can only hope is possible for him.
Life is too short; perspective, every day for the rest of my life.
I know who I’d rather be & I know whose problems I’d rather be handling; I know my integrity is exactly where it should be.
I also know that I’m done with biting my tongue & other people mindlessly rocking my boat.
I’ve dropped the anchor & am happy to say that it feels secure.