“No one can lose sight of what he desires. Even if there are moments when he believes the world and others are stronger. The secret is this: do not surrender.” Paulo Coelho – The Fifth Mountain
It takes tremendous discipline to survive. Even when it looks to everyone else that it is over (and its far from over), its the flash backs from all the trauma that cause the greatest insanity. These are the memories that haunt me in the night, the ones I try to make sense of so I can return to life.
It’s not just the months of chemotherapy, or dealing with the results from the daily blood tests. It’s not just the monthly lumbar punctures leading to holes in the spine that hospitalise her for days on end, sipping macchiato coffees to ease the pain in her head. It’s not just plucking up the courage to look at the screen where the scan of your daughter’s sagging brain is lit up to reveal how it rests on her spinal cord or processing what this leak in cerebral fluid will mean for her long term.
It’s not just the bone marrow biopsies that are performed every six weeks; or the vision of that corkscrew being forced into your daughter’s back and the grinding sound it makes, as the doctor drills his way deep in through the bone of her back to get a sample of fluid from her marrow to see if the treatment is working at all. It’s not just the memory that haunts you, though you didn’t mean to look, you had to steady her, to calm her, to remind her to take small breaths. ’Good girl, take a deep breath in, you can do this and blow out… its nearly over.’ You lie. And your voice is calm but inside you there is a vice clamping your heart reminding you that you planned to help her breathe one day when she was in labour with your grandchild and now even this is something that you wonder will ever happen.
It’s not just the endless waiting for extra tests you didn’t expect… the MRIs, the gated heart pool scans, the nights in X-ray, the ECGs. It’s not just the Total Body Irradiation that killed off every cell to prepare her to take on the cells of the kind man that donated his bone marrow to give your daughter a chance at life. It’s not just the anaphylactic reactions to the chemotherapy, the tachycardia that came without warning, or the loss of her voice for 3 whole months from another chemotherapy drug. It’s not just the gruff voice of the haematologist who had no people skills and nicknamed your daughter the ‘side-effects girl’ as if it were funny.
It’s not even the days you spend walking through the corridors because you manage to convince them that you know where the file is, that they say can only be delivered by the orderly. You know that if they send you home she will not get the blood transfusion that you she needs today. You learn that you are the world’s best negotiator when it comes to your daughter’s life but you also learn the balance of keeping the staff onside or they will punish you by making you wait longer. So you play the game and learn what sort of coffee they drink so that you can arrive with a type of bribe that just looks like a warm gesture and will not be misconstrued. You learn to be patient, sweet and kind and use all the things you were taught many years ago, back in year 9 debating to convince yourself and others that you have the strongest argument and that you are going to win.
Hold on to your dream
Learn the lessons.
Speak up for yourself
Or go off the radar
If it makes more sense
Learn the rules
The map of the hospital
The names of every nurse
Ask them to teach you
To do the dressings
To give you access
To the storage room
Thank everyone who is kind
Make friends with the people
Who serve coffee in the cafeteria
Ask them about their families
Walk in the sunshine
Rub in hand cream
Never give up
Never loss sight of the goal
The screams came unexpectedly from her room. Everything seemed okay, just a moment ago when I said that I was going to step in the shower cause at the end of the day of work I had gone to the gym. Admittedly it was late, I hadn’t sat with her, we hadn’t talked about the day but she seemed fine and I had programming to do for school and I needed a shower to wake me up. The hot water was reviving me when Jack alerted me.
“Mum, quick, it’s Sam.”
I dressed as quickly as I could, I ran to her room and there they were. My youngest child, tall and strong holding his older sister who is tiny and frail in his arms while she screams, snot pouring down her face, her body convulsing back and forth and she’s saying she can’t take it anymore and life has gone on for everyone else but not her. I think to myself that it sounds as though she has just witnessed a murder; the screaming is so loud, so out of character she is always so calm and in control. Then I think maybe it is a murder that she has witnessed, the destruction of her youth. I tell Jack, its okay, you can go do your homework and I take her instead and we lie on her bed and I let her cry until there are no tears left. Just like I did during bone marrow biopsies I tell her that it is going to be okay. This is what I desire and I refuse to surrender even though everything else seems stronger. We focus on what we really want, which is for her to recover – spirit, soul and body.
The worst thing about sickness is how it contains you. You remember when life was free and you could choose what you did and you could express yourself the way you wanted to and expect things would unfold for you in a normal sort of way. You thought that your kids would be healthy, graduate from high school, start university, get a part time job, meet a boy, get engaged, get married, have babies and that these things are normal and fair to wish for. You never knew exactly what courses they might take, or who they would meet, or what the future looked like but you celebrated the blank page predicting that they would colour it with beautiful pictures so that one day you would step back and marvel at how good life is.
Instead life gives you lined pages and definite instructions and you have no choice but to conform. You don’t like this new regime anymore than the Kindergarten children like the change from A3 scrapbooks to A5 exercise books. You don’t like the diagnosis, or the treatment or the endless months that roll on into years and you wonder how you manage to not get angry with God for stealing all your dreams? Then even as you think about being angry, you hear the voice of your dad, who taught you that suffering was part of the journey, to understand the struggle, to use it wisely, to just be brave. You are reminded of Jacob and you know that your life is marked because even though you tried in the past, you could not let go of God or his call and deep in your spirit you encourage yourself that He will even use this. One day, when it’s over, one day it will all make sense.
When people ask about how we first came to know that Sam had leukaemia they all want to know, ‘what were the signs?’ There were no signs. She was the fittest, sassiest, most capable girl I ever met (apart from my daughter Emma, who is equally magnificent). She was a girl on a mission, who served in church, who mentored the younger girls, who studied hard at uni, who made her parents proud. Sickness did not drag its way into our world; it came suddenly, without warning. Just like people tell you, ‘we are all only a phone call away from bad news.’ I pray your phone call never comes. If it comes, like mine did, I pray you will have strength for the journey and to learn all the lessons it presents and to have courage to just keep walking when you think you would rather die.
When it looks like its over to everyone else because they don’t hear the anguish in her tears, don’t get bitter or complacent or give up. Remember that God didn’t call you beyond what you were capable of, even when you think His estimation of you is so much higher than your estimation of you. Find people to affirm you and to remind you that you will make it and get on with trying to encourage someone else who may need your story of how you survived.
Coelho writes “Cowards never allow their hearts to blaze with fire; all they desire is for the changed situation to quickly return to what it was before, so they can go on living their lives and thinking in the customary way. The brave however, set afire that which was old and even at great cost of great internal suffering, abandon everything… and continue onward… they alone knew the path back to His love, for they understood that tragedy was not punishment but challenge.”
In all that you have been through you pray that somehow he might use all this grief to make an impact on people for eternity but right now its just you and your daughter in the lamplight floating on an ocean of tears. After hours of talking you decide that the only thing to do is to pray. You decide this together. Leading each other because you know that when it was at its worst, the only thing that brought peace was when you surrendered everything, not to the sickness that seemed stronger, but to God who really is. You dream about a day when your story might be told or when you can gather the stories of others who have made it. You know that in the tragedy you have found a sort of beauty, that ‘sadness does not last forever, when we walk in the direction of that which we always desired.’ (Coelho)