I have just finished a course of steroids due to an aggressive breakout of eczema. Stress triggers it. I have been waiting for it to arrive for over a year. I woke up one morning & both of my ears were red, swollen, hot & chronically itchy & very quickly it started to spread down my neck; I looked like Shrek’s long lost cousin.
One thing I have learnt over the years is that no matter how straight I try to keep my mind my body often tells a different story. Keeping it all together is not straight forward.
“How do you do it?”, they ask.
“Stay strong”, they say…I say it too.
It is mainly a question of how.
After the initial denial of Dylan’s diagnosis (which lasted about a day) I had to skip anger, there was no bargaining power & so I went straight into some form of acceptance. It is a strange sort of acceptance because it still feels like a bad dream & to this day it shocks me to the core; I believe it always will. Nonetheless, I of course know & therefore accept that Dylan has cancer.
Through this process so far there are a variety of things that I have tried to keep my mind steady. However, I do think that from a very young age certain elements of my past have set me up with a depth of strength & a certain amount of resilience.
I remember aged four being subject to racial abuse whilst walking down the street with my paternal grandmother; I remember circa age seven being subject to passive racial abuse from said grandmother as she removed photos of me & other members of my family when she put her house on the market; she thought it would help the sale go through faster.
In August 1990 my father (who had worked in the Middle East since 1980) was taken hostage in the Gulf war. I was seventeen, my middle sister was fifteen & my little sister was six.
My father was finally released in December of the same year but not before a group of ten women flew to Iraq to ask Saddam Hussein to release their husbands. One of those ten women was my mother; she took my six year old sister with her, left me with the house keys, the car keys, her credit card & a reservation at a local hotel for my middle sister & I to have Christmas dinner if they weren’t back in time for the festive season. I was studying for my A levels & at boarding school. My middle sister was at a different boarding school just over an hour away. At one point I knew they were all still alive as I walked into the common room of my boarding house where everyone was watching the news on tv. They all turned to stare at me as I slowly realised they were looking at my parents standing next to Saddam Hussein & my little sister sitting on his knee. The entire episode was horrendous in so many ways & eventually paved the way to so many other issues that I would basically have to start another blog. This is just one of many difficult incidents that has required me to keep my head. I had no idea if I would see my mother, my father or my darling little sister ever again but I chose to keep going. I wrote a diary at the time; it was another situation that nobody could empathise with completely…I mean what do you say to a teenager in those circumstances?
Years ago whilst battling the demons of a drawn out custody battle for my eldest son, Eckhart Tolle put into words what I already felt I knew. Reading his book The Power of Now calmed my fears & set my heart & mind to rest. There was nothing I could do but wait; I had no control then & I have no control now.
More recently I have read books to try to find perspective. Man’s Search For Meaning by Viktor Frankl is his story of his personal struggle to survive in Nazi concentration camps. The clarity of his mindfulness in such horrific circumstances is astounding. Obviously that is not me, it is not a suggestion that one experience is worse than another; it is all relative. I cannot begin to imagine being in a concentration camp but I can relate to how Frankl chose to deal with his ordeal; I am a mother watching my child with cancer & waiting to see if he lives longer than I do.
There always has been something to fight against or fight for in my life.
Lying in a hospital room with my sick child watching endless episodes of Everybody Loves Raymond & Gordon Ramsey’s Kitchen Nightmares whilst wondering what his fate is was bizarre. It is not right, it is not what what I had imagined for myself; nothing can prepare you for wondering whether you need to plan a funeral for your child. It is just not normal. It hurts & it hurts hard, a hurt that cannot be described. Each day brings tiny new bits of hope so I wait for each day & see what will come; each day is tainted with an inescapable fear. This sort of existence is not healthy & I have to find ways to see each day through. What works one day may not work the next as my mind rarely settles.
Wherever I am, whatever I do this ache is with me. Whoever I am with, whatever I am talking about cancer is sitting next to me & I know I have to live alongside it but I am still learning how. I feel as though I am in a tunnel with the occasional flickering lightbulb dotted around here & there, but the reality is that there is no end to the tunnel neither is there light. It narrows & it widens but I know that it will go on forever in some form or another & so I need to find ways of walking it.
At school I used sport as an outlet; it helped. If only it was that simple now, age & experience bring so much more than the naivety of youth.
Before Dylan was diagnosed I used to go to the gym four times a week. I stopped the moment he was hospitalised. I have thought about going back & I think I might do soon but I am scared that the moment I get on the treadmill I will not be able to stop running, I feel that it would start a torrent of tears that would never stop falling. However, I know that the endorphins released could in theory have the opposite effect, at least for a moment.
I yearn for time alone but when I am alone I want company; but I don’t want company, I want to be alone. It is a conundrum to which there is no straight answer. I do what I need to do when & if I can; I need to be me so I can be the best I can for Dylan, Ruari & Nick.
I have moments of fleeting anger. Anger so harsh that there is nowhere to put it; anger so potentially damaging that I could never let it out. I breathe deeper, I stand taller & I work harder. I give as much goodness as I can muster at the same time as I fight my demons. I choose to hold onto me, whoever that is on any given day; I am not who I once was. Elements of myself have disappeared only to be replaced by new elements that I do not recognise but simultaneously have to accept. Each day brings new thoughts, new chapters, new challenges but my focus remains the same; my child has cancer.
I find solace in the wisdom of Maya Angelou who despite her life’s unimaginable difficulties still managed to rise. Her attitude is inspirational.
Six years ago, after a minor (it seemed major at the time) complication with a couple of members of my very dysfunctional family I suffered from anxiety & had a six week course of counselling. It helped to talk to a stranger, I found it refreshing & whatever problem I thought I had is no more. I have sought counselling again since Dylan started maintenance but it has changed nothing; wherever I go & whatever I do my child has cancer. This problem is here forever.
My short term memory feels diminished; shrouded in darkness as it now is it retains almost nothing, I have to work so hard to remember the smallest of things.
Looking at Dylan makes me so happy & so sad all at once. Happy because I am watching him grow & develop as he is doing right now; sad because I no longer have the privilege of watching him just grow & develop as he might have done before all of this inflicted our lives. What would have been? What could have been? Two very poignant questions that haunt me daily. As things stand today, Dylan is visibly as well as we could hope. There was once a time when I took that for granted.
I have drunk more wine than the Languedoc region can produce in a month, I have cried, I have shouted, I have screamed but nothing changes the very testing fact that Dylan has cancer…nothing. So I choose to deal with my thoughts & my demons the only way I know how. I stand as tall as I can. I take a deep breath every morning & I search for myself everyday so that Dylan can be himself. There are no specific techniques, there is no manual, there is no right or wrong. I have to live for today & have hope for tomorrow.
Asking people to understand what I perceive to be the madness in my head that I cannot wear openly everyday is a big deal for me & for them because nobody can save me from this; it’s down to me & how I choose to save myself.
I feel that my existence is a series of opposites; I want to behave in a certain way & choosing to be mindful is key to me behaving in a socially acceptable manner because I know absolutely that I could easily do the opposite; I really could go mad.
Choosing to stay sane could possibly drive me mad; it’s that simple. My head may remain mindful enough to not let that happen but my heart may not.
I throw it right back on me.
Timshel. I mayest or I mayest not; it may well be the most important choice in the world.