Frida, Tomatoes and Giving Pain Meaning

I had a hard time holding my newborn. When I was pregnant, I practiced carrying  a string bag filled with oranges, and a sack of potatoes. Weights and hydrotherapy also played an important role. When my daughter came along, I found it very difficult to hold her, and wrangling her as an active toddler was a challenge! Breaking my back again when she was three, saw me unable to carry her; even navigating a roundabout in the car would see me bite my lip to avoid screaming in agony.

I am a planner and think a great deal of the future. I guess when one has had so much out of their control, you grip onto that which you can have power over. My spine is a case in point. Working with weights each day and walking are things I can do to prepare for the future. I had researched spinal cord stimulation, and sought experts in this particular field. I was excited about the prospect of being able to cope as my back pain became more challenging (the fusion sites are already wearing out with age). I was so young when the damage happened, which means that preparations and reparations have to be considered now. I thought of my daughter as a teenager and young woman. I want to travel with her, and maybe one day be a hands-on grandmother to any children she may have. I want to be able to hold those babes in my arms. Unfortunately, a site of major damage is the thoracic region. Holding anything in my arms is agonizing. For a year, I harboured hope that spinal cord stimulation would help. It was to be my insurance policy; a nod to the next decades of life.

Last week, my daughter and I saw Evita at Sydney Opera House. It was a spectacular production, which left us spellbound. Tina Arena as Eva Peron, was stunning, and deserved the standing ovation which she received. My girl asked lots of questions about Argentina, and we researched it’s history online after we left. We stayed in Sydney overnight, having a leisurely brunch before seeing my spinal specialist. Armed with my latest test results,  I followed the doctor to his rooms, unaware of what was to come. I assumed we would be arranging to have a trial device implanted.  Spinal stenosis and fibrosis at the site of former surgeries meant that there isn’t adequate space to weave the wires through. I can’t even have epidural injections to manage the pain. Having surgery to place a stimulator would be far too hazardous, as it turned out. It was a lot to take in. It means I have to reimagine my future, and my daughter has to reimagine hers. Simple things like sitting or carrying luggage, going on long treks or long-haul flights will be that much more difficult.

I went home and cried. I watched the movie Frida, as I laid on my Frida cushions. It will be a reimagined future. I am doing everything in my power to keep my bones and muscles, kidneys, lungs and mind strong in preparation. There will be no hope of relief nor reprieve from the merciless pain. It shall always be there, a constant reminder of the brutality of my youth. It will limit what work I can take on, and how far I am able to drive. I will be damned if it limits what I can do with my daughter. She stubbornly took my suitcase off of me the other day, on our way to our hotel room, giggling as she ran ahead, despite my protestations. She reaches out her arm to me, and carries my backpack on her strong shoulders each and every day.


We shared the bus ride to RPA with an eloquent middle-aged gentleman who was homeless. He was Italian, and ate a tomato as though it were an apple. He reorganized his bag, and when he stood, he rolled deodorant under his armpits, before gifting the family opposite a drawing. He read a book on philosophy as he sat back down, finishing his tomato with relish. As we departed, he tipped his hat. I would love to know his story; I’m sure it is brimming with pathos and triumphs. The most remarkable stories are.

I have always been fascinated by birds, butterflies and dragonflies. How wondrous it would be, to have wings. For over half my life, I have been fused from my shoulders down, with  limited range of movement. I am grateful that I have been able to walk, and if my mobility were to cease tomorrow, there would be no lamentations. I just want (and need), to be well enough to see my daughter through to her adulthood.

For a moment, I regretted the time and money spent seeing specialists and having all of the tests done. What a monumental waste of a year! Then there was the matter of the space all of this took up in my brain. I had put things off ‘until after I had the device fitted.’ Ironically, as I reflect, I see that these days had only brought my daughter and I closer together. We had stayed in the city, walking and laughing in the rain. We brunched and cheered on street performers. We had been together, smart phones displaced from our hands. I found myself outside the Downing Centre courts, a place I had avoided since the court case I endured at sixteen, trying to get a bad man to pay for the vile things he had done. I stood outside for fifteen minutes, waiting for our bus. Lost in my thoughts, the Italian gent, tomato in hand, tipped his cap and we talked. Mental illness had robbed him of a lot, but not his heart. Physical injury had robbed me of a lot, though not my heart. For a moment, we were in simpatico. He gestured for my girl and I to board the bus before him, and I glanced out the window at the imposing courts. I had come back to retrieve that girl.

Perhaps, none of it was about a spinal cord stimulator. Perhaps it was to give me leave to spend quality time with my daughter. Maybe it was also about facing another piece of the past. Maybe it was to show me that I can organize travel and hotels and that I am enough for my daughter. I am the mum that she needs. Perhaps it was to affirm that I need to let go of fear. The worst has come and gone and I am still here. Maybe I was meant to meet the Italian fellow, and be encouraged to eat vine-ripened tomato’s as though they were apples. He even ate the stem, and I realized that nothing is ever wasted. The same is true with lives.

I have been referred to a physical therapist, and my specialist is going to review my case at the next practice meeting. As I reflect on the year gone by, I see no wastage. My daughter and I had experiences we would never have had, and seen parts of Sydney that we wouldn’t have. We have met magical people, been in magical shops, had magical food and stepped out of comfort zones. The only thing left to do is eat a tomato as though it were an apple.


I am more than my pain

Last week, I watched a young woman jog by my house. We exchanged greetings, and I was hit by a body memory which revealed itself as sadness. I recalled that I had once roller-skated, rode a bike and horses, gone on amusement rides, danced, done yoga and aerobics. I was a very active kid, and loved to jog. These were my happy times, when I celebrated being in my body, rather than feeling detached. I loved putting my headphones on, and running for miles. I loved being able to contort my body, skating on ice and in the rink. I even loved the war wounds from falls off my bike after performing a hazardous stunt. No wonder I so enjoy watching my child perform extraordinary feats! She reminds me of myself as a kid.

When my spine broke, it all stopped. It was like a grandfather clock seized ticking when it’s owner died. I told myself that none of it mattered, that being alive was reward enough. It certainly was, but there was nobody to confide in for the grief of what was taken. It took years to overcome the panic of having a spine entirely fused. It feels unnatural, like somebody has glued you together as a statue, with immovable parts. Your mind craves the liberty of being able to stretch and bend, only you can’t. It was worse when the rods and Hartshill rectangle were inside my spine. I could feel the wires and screws, and desperately wanted them gone. For somebody that had been so active, I now had to go back to basics, applauding myself when I walked a hallway or up a solitary stair. Cheering myself on when I managed to lift my arms. It took years to retrieve the pieces of my psyche that had been thrown in the air. It has taken years to not feel trapped, as if I was in a permanent body cast.

I have done my utmost to feel like the spirited, irrepressible girl I had once been. As I age, my spine is getting worse. Taking deep breaths is breathtakingly hard. Sitting hurts, walking hurts, everything hurts, all the time. The recent diagnosis of Trigeminal Neuralgia has been hard to take. At a time in my life when I need to steer my daughter towards her high school years, and kick my own goals, my head is now complaining. Where once I would have climbed a tree or gone to the rink to skate as an emotional release, it is now found in theatres and cinemas. The bar was forcibly reset when I was fifteen, and triumphs are uncovered in how I get through my days. There is my daughter and I, doing life together, alongside a fragile spine, neck and head.

She went bowling a while ago, and when I told her friend’s mother that no, I wouldn’t be able to take part, she answered, ‘there’s not much you can do, is there?’ It took my breath away, such was the punch in the gut. She boasted of all the physical activities that she shares with her child. I know she didn’t mean to hurt me, but it hurt nonetheless. I have had to drown out the opinions of others, and remember that I coped with pregnancy when they were concerned I wouldn’t be able. I coped as a new mother, training in preparation by carrying around bags of potatoes and oranges whilst still pregnant. I did weights so my arms would be strong enough to hold her. My triumphs are quite different to other’s.

I fulfil my obligations to the best of my abilities and find joy in each day. Pain and gratitude can live together within one’s body. There are weeks that are truly horrendous, and not just due to pain. I require catheterization, and sometimes, there just isn’t the money to  buy the necessary amount of disposable’s for the week. That alone costs over $100. I ration myself,  to the point where my bladder isn’t damaged. Medications, specialist appointments and tests all cost above what my private health fund covers. Then there are the aides that make life easier. To be able to laugh and enjoy life in spite of it all, requires some doing at times! It can be devastatingly lonely, and frustrating. The stuff you don’t see on social media. I tend to go to ground, readying myself for the next round, particularly when I know there are busy days ahead.

I can cope with the medical stuff, and am preparing for quite a wild ride this year. There will be having fractured teeth pulled, root canals, impacted wisdom teeth, possibly having spinal cord stimulation and surgery for the TN. There will be medications to keep me going also, and trials for this and that. I just wish I could join my daughter in her trampolining and acrobatics. I wish I could go skating with her and climb trees. It’s funny, even though I am frightened of heights, I was never panicked whilst in the canopy of a tree. I felt safe. There is a tightrope to walk between acknowledging one’s pain and limitations and living life large. Concessions must be made, such as spacing out activities and factoring in rest. I am not ready to wave the white flag yet. Schooling my daughter these past four years has been a joy, and has given me such a wondrous gift. I know the best is yet to come, for her and I.

So there you have it, the blasted conundrum of living within an altered body. Feeling frustrated and angry, sad and exhausted, whilst also having a spirit of gratitude and wonder. Yes, wonder; at how you have adapted to your changing circumstance. Wonder at how beautiful life is. Gratitude that the arts have been able to replace physical feats as a means of release. I see my wounds as a gift of sorts. Animals and strangers come up to me routinely, as though they sense the vulnerability of a wounded person, and are drawn to it. It makes you approachable, and others tend to see you as someone they can confide in. It is a privilege, a compensation for the piercing pain. Time is too pressing and life too extraordinary to waste on nonsense; pain teaches you that. Time is a master that needs to be obeyed, and is followed to the second. My mind can cope if I prescribe it a timetable, and it knows that rest is coming up shortly.

I am learning as I go, often making up new rules on the spot. I am in it for the long haul, and can adapt as needed. I grieve when memories come up of skating and bowling, riding bikes and running. I grieve as needed, and acknowledge as required. There may be activities I can no longer partake in, but doing life isn’t one of them!