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!

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9 thoughts on “I am more than my pain

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  1. Big squashy (gentle) hugs for you. I am sorry you are in so much pain. I have arthritis in my knees and Trigeminal Neuralgia so I know a little of the pain you have. You are very brave and have my utmost admiration. You are an inspiration to me and others.

    Liked by 1 person

  2. Hello lovely lady you are one of the most amazing people I’ve met. And when I hear a little of what you suffer and then see you with your beautiful smile and gentle manner I’m in awe of you and all you do.

    Liked by 1 person

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