“I’ll just peep up through the hole in the cloud and see if by any chance the Land of Spells is there yet,” said Moon-Face. “If it is, we’ll go up and see what we can do for you.” So off he went up the little ladder and popped his head out of the hole in the cloud to see if the Land of Topsy-Turvy was still there, or if it had gone.
There was nothing there at all, only just the big white cloud, moving about like a thick mist. Moon-Face slipped down the ladder again.
“Topsy-Turvy has gone, but the next land hasn’t come yet,” he said. “We’ll have breakfast and then I’ll look again.” (Magic Faraway Tree by Enid Blyton)
It’s a while now since our world was turned completely upside down by Leukaemia. We peek out at life and so much has returned to normal, a new kind of normal perhaps? There is good news and lots to celebrate.
Sam has survived the last two weeks on the lowest dose of prednisone since January 2009. Nothing has flared up or gotten out of control. Her appointment with the ear doctor this week indicates that things are not any worse. Not better either, but not worse.
“Just keep on doing what you are doing.” He tells her. This means she will continue to puff a dry, powder into both ears every morning and every evening. It is inconvenient and uncomfortable but it is an experiment to try to keep the area dry and to reduce the risk of further infection. She has lost some hearing already in her right ear and if not controlled she risks losing it altogether, with this in mind she administers the dose as directed.
Before rising from her bed each day, Sam takes her thyroxin. She will continue to do this for the rest of her life. I have made the taking of this drug her responsibility whereas I administer all the others. The thyroxin replaces the hormones that her thyroid produced before it was removed in January this year. It was removed because a rare case of Graft Versus Host Disease (GVHD) attacked her thyroid after the transplant causing an acute case of thyrotoxicosis. After it was removed it took a while to moderate things, to get the dose correct but eventually things were under control and for now things seem to be working.
After breakfast, Sam takes a collection of drugs that I have left in the kitchen for her before leaving for work. Each days dose is slightly different depending on the day of the week and I have become an expert at discharging them with precision. Every day as I pop the pills from their silver foil I pray that the prednisone reduction will be successful and that her body will produce its own cortisone. When this goal is reached we can begin to reduce the immune suppressant drugs and little by little, maybe life will become normal again.
Everyday I tell myself how far we have come. I congratulate myself that I am doing a great job balancing life, my pastoral role at church, my full-time job at school, my course at university, being a mum to my three children and being Reid’s wife.
I am doing okay but so much has changed. The truth is that life may never be right side up again. Sometimes, like Moon Face I wish I could climb a ladder at the top of a tree and peek into a different world. Sometimes I wish the land of spells would come along and turn everything back to the way it was in the summer of 2009 before Sam was sick.
Life is rich and deep and full of miracles but few can understand the dichotomy that it has become. Life exists in two disconnected parts, there are no overlaps and in this no man’s land I seek out meaning. I am trying to pull things together. To reach into the void that exists between what was and what may be. I confer with a friend whose child has also been extremely ill. We consider that these may be the good days, the best days and that we should live them well.
In so many ways life is more full than it ever was before cancer crept its way under our door and completely invaded our lives. The small inconveniences of life do not bother me in the slightest. I can look past these trivial things for I have witnessed such courage and faith in the face of death. I have seen that it is almost impossible to destroy a man. That even without hope there is such determination in the human spirit. I know now what it is to live each day as ‘the gift of fortune, to be enjoyed as intensely as possible and at once; for there is no certainty about tomorrow.’ (Primo Levi – If This is a Man) I have learned to rejoice in today.
We have survived winter without infections or flu and without Sam returning as an inpatient in hospital. This in itself is a miracle in her immune suppressed state and with all the bugs I carry home from school. I see God’s divine hand of protection over our lives.
Yet, I tread carefully through the shallow murky water of life, ever cautious that something lurks below the surface. I am not fearful but I am wise and aware that it is important not to take risks. I notice Sam reading her book on her bed as the sun shines on her legs through the windows and I remind her to cover up or not sit for too long. She must be careful not to burn, not even the slightest bit because her skin is susceptible to GVHD now and her liver would not tolerate sunburn. It is all the little things and all the terrifying stories that make life unbearably hard. I know too much. I have seen too much.
Blank spaces fill the places where my dreams used to be but God shows me that “By faith we understand that the world’s were framed by the word of God, so that what we see was not made out of things that are visible.” (Hebrews 11:3) All is not lost, my faith has not weakened because of the reality of sickness and hardship and suffering. It is from Him that faith comes and all I need to do is to look to Him and trust. He is framing my world, even what I can not see, with His word.
Images of death wake me in the night. The thin armour of sleep does not protect me from the grip of my memory. So often in my dreams I am transported back to the kitchen room in the hospital. In this room there is a kettle, a toaster, a sink, a fridge and a microwave. There I wait in line with the other carers who are trying to make food for their loved ones who battle life and death somewhere in a room off the corridor.
I stand with people from every race and background. I confront the prejudices of culture and smells as we reheat food brought from home, as we line up for the microwave, as I clean it in a desperate attempt to remove the stench of flavours that are abhorrent to my senses. I spray and wipe and am revolted by spillages on the counters where there is little surface to prepare, I am repulsed and brought undone. In time, after many months of living this way, despite the barriers of language I discover that really we are all the same. We are all frightened and fighting for our mothers, our fathers, our daughters, our sons and we are willing them to live.
As the months transpire I learn a new kind of compassion, I learn to nod and smile and to share my knife. I teach the new ones how to survive. The new ones are easy to identify. They speak positively about remission; they do not know yet that remission with Leukaemia is only part of the process, that there will still be a wait for a donor and for more biopsies and many years of uncertainty. I congratulate them anyway; I show them my picnic basket and the things that are helpful to bring to the hospital. I show them where to get stickers with the patient’s number so that all their food can be labelled.
When Sam is sleeping, I clean the fridge. I learn how to read the white board opposite the nurse’s desk. I know who has died, and who has gone home and I throw away the food they have left to make room for the food of the new patients. In the corridors of the hospital I learn a new way to live and a new way to die to myself. As my life is erased in so many ways I learn to see with new eyes.
The faceless presence of death crowds my memory and even now I wonder who made it through. Our relationships were merely built around our joint quest to survive but mostly we did not exchange numbers or re-engage on the outside, only in very rare instances because to bear the grief that they carried was not possible on top of our own.
This week God reminded me of all the rustic frames I collected when I was newly married. I can see them hung together on a wall containing nothing. I ponder whether this was in fact my style, or did I not know my style, or did I have no money to buy images to fill them? I cannot remember the answer but I can hear God’s voice and the rumbling of His laughter as we connect together over this week’s lesson.
I can see that like Paul, ‘we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair’ (2 Corinthians 4:7,8) and I see that we should ‘continue to fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal’ (2 Corinthians 4: 18) and even if I don’t know what comes next on this journey, He is close and He calls us and He carries us through.