I know what’s wrong with you

I know what’s wrong with you. It’s your neck.

I sigh internally.

I had left work in a frenzied state. My shoulder was on fire, upper arm a brick dangling from threads of nerve, all the while my shoulder socket screaming rage at me. My neck was an immovable mass of cement, surrounding muscles stiffened to resemble a coat hanger.

Desperate, I shot across to the gym next door and asked whether there were any physios around, any at all. Pitying me, the girl at the gym gave me the name of a physio further down the road. He was, she reassured me, ‘incredible’, having helped one of her clients get on to the treadmill for the first time in their entire life.

I walk as fast as I can, but it was too late. The physio was fully booked up. I plead with the receptionist for even five minutes of his time. The physio came out just as I was explaining my story. With one look at me he said: “I know what’s wrong with you. It’s your neck.”

I sigh internally, because I know that he doesn’t know what’s wrong with me. Because I have heard those words so many times before, and yet here I am.

Still, I am willing to give this new guy a chance.

I survive the night on painkillers and a coldpack. Over the next few weeks, I see the physio a few times. He tries taping, acupuncture, electrotherapy and massages to relieve the pain. Eventually, he admits: ‘The work I’m doing won’t relieve your pain. It might be arthritis. Get your GP to do a blood test’.

I leave exhausted.

My GP is not convinced. My symptoms do not present a case of arthritis, but she’s willing to explore it. She pushes me to do the other test a neurologist had recommended earlier in the year; the one I secretly had avoided doing when it all got too much. She pushes me to reapply for the pain management clinic; the one I had received a letter from cancelling my referral because I hadn’t responded in time; the one I had not responded to when it all got too much.

I tell her it is too hard to do test after test that return with nothing except a big bill. I’ve lost count of the physios, osteos, chiros, pilates instructors and GPs I’ve consulted; the advice they’ve given; the exercises they’ve recommended:

There’s nothing wrong with you. Just take some painkillers. GPs don’t know what they’re doing. Your right leg’s shorter than your left. Your left’s shorter than your right. Podiatrists can’t decide. Use heat packs. Do strengthening exercises. Do yoga. No! DO NOT do yoga – you need to treat your lower back. No, use cold packs. Physios don’t know what they’re doing. Actually, your right leg’s the same height as your left, it’s just too rotated inwards. Marfan syndrome? Do pilates. Chiros don’t always know what they’re doing. You have ‘Layered Syndrome’. You need to let your body heal itself. Don’t tape. Your body is not coping.  Use heatpacks. Go do acupuncture. Your issue is musculo-skeletal. There’s nothing else wrong with you. You need to help it learn how to hold itself up. Use tape. You should do some neurological tests, just in case. Maybe it’s arthritis? 

She says that we need to exhaust all avenues for each possible cause before we can move on to the next. What if, ten years from now, it turns out to be the neurologist was right, and we could’ve resolved it all now?

She had me there.

She fills out the paper work. She looks at me sadly and apologises again for not having an answer for me.

‘No, Doctor’, I respond. ‘You’re actually the most helpful person I know. You don’t pretend to know.’

*

It has been four years since I danced like a wild one and ran like a child of the forest.

I had always had some pain in my legs, but a night’s rest and I’d quickly recover.

By mid-2010, however, I started getting more ‘shooting’ types of pain, striking through from the back of my right leg to my hip. The attack would be short and swift. Initially, I thought it was bad footwear, so I tried to buy more comfortable shoes.

One night, I was out dancing. A guy approached me, asking me for a dance. It was a beautiful moment and I could not resist. I danced through the pain until my feet swelled up and I had to take off my shoes. The same thing happened at a friend’s party a week later, the pain so strong I could not stand up anymore. Within a week, I had collapsed to the ground in pure agony, pleading with my housemates to help me.

I did not realise it then, but it was the start of a four year journey.

 *

I look back at photos of my younger self. There is one in particular that gets to me.

It’s 2008. I am at a friend’s birthday. Of all things, I’m in the middle of retaliating the lolly-throwing attacks of a mutual friend. The photographer catches me in mid-attack. My body twisted, I am grinning as I whack my opponent with a lolly.

189181_1002681905662_652_n

I look at the photo intently, and wish I could relive that carefree moment, run like a maniac in grassy fields that know no limits, and wake up the next day ready to do it all over again.

*

It is difficult for people to understand chronic pain.

If you met me, you might never guess how much pain I’m in. Because I look so young, and do not physically look disabled, it is difficult on public transport to explain that I need a seat, so I don’t.

Well-meaning people are willing to offer never-ending advice. It is often exhausting to explain that it is not as simple as they think.

I have lived with my pain for four years, so it has become as natural to me as breathing.

My pain snakes its way through my body. Some days, it is a python, hissing at my feet, suffocating my circulation. Other days, it is a rampaging cobra, striking the back of my knees, biting my right hip or shoulder sockets, or attacking my neck with a force that gives me headaches for days.  Each time I learn how to manage it, it finds a new weakness to exploit.

Amidst the pangs of pain, pure and absolute physical and mental exhaustion ensues. No matter how much I rest or how healthy I eat, I am left at the end of the day utterly exhausted.

Yet it is not the physical pain that is the most dangerous.

The accompanying mental health issues creep up on you, paralysing and gripping you with fear, cycling you through a yo-yo of never ending depressive dips and fleeting moments of euphoria.

The worst is the memory loss. It started out slowly. The pain and anxiety made for many sleepless nights. I made clumsy mistakes at work that I would’ve never made in a million years. To this day, I fear numbers.

I couldn’t remember what I had said a second ago. I struggled to concentrate on what people were telling me.

It progressively got worse. I was slowly falling, unable to control my irritability. Anxiety swallowed me whole, and I often found myself shaking at night.

I was a strong girl, I reminded myself. I tried to hide it from most people I knew. When I did speak about it, I’d make sure it was an ‘off-handed’ remark, so they wouldn’t ask too many prying questions. I craved and feared people’s sympathy.

It became harder to maintain and nurture relationships, let alone romantic ones.

With each setback, real or imaginary, I became angrier with my body, which I now considered a shriveled, disease-ridden being devoid of beauty or hope. I hated looking in the mirror as I slowly wasted away. No matter how hard I looked, I could not find myself in the reflection.

I felt stuck. I longed to quit work and focus solely on my mind and body, but it was paying for my soaring medical costs.

For six months, I withdrew. I took time away from social media to concentrate on healing myself. I sought help. When things hit rock bottom, I finally had the courage to call some close friends and admit I was not OK.

*

Someone once asked me: If someone were to grant you a wish, would you ask them to take your pain away?

I am surprised that I hesitate to answer.

While I still fling myself across the emotional spectrum on a daily basis, my pain has been my ultimate teacher.

It has forced me to slow down and reassess everything that I value, to appreciate and take full advantage of every moment of joy or happiness. To see in the littlest of things the biggest of things.

To find beauty in burning garbage.

burning garbage, nicaragua

burning garbage, nicaragua

Comfort in the solitude of an autumn leaf caught in winter.

winter

winter

I am calmer, more patient and empathetic because of it. I am more ready to forgive.

My pain has taught me to embrace my vulnerability. I learnt this the hard way, but it finally clicked when I read this quote by social researcher Brené Brown:

Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.

It is incredible how many times I have felt most alive when I have felt that I was vulnerable. Not one person ever made me feel ‘weak’ when I revealed my vulnerability, rather, they thought I was strong for doing just that and wanted to be a part of my journey.

I have found out what real friendship means.

My pain has taught me the limits of empathy. I had spent so long in other people’s shoes that I’d forgotten to tie up my own. It was only through my pain that I stumbled and realised that I needed to set boundaries around how much I gave others, so I’d have something left to give myself.

My pain has taught me to embrace failure. We hear so much about success, but we do not hear ENOUGH about failure. We hear about successful ‘entrepreneurs’, but never about their long struggles and setbacks.

For me, failure has been my second most important teacher. Without it, I’d be a horrible self-serving student of life.

Because of failure, I found out what really mattered to me; I learned to write and share poetry; to take the leap and learn Spanish; to travel and enjoy my own company; understand my self worth – what I will and won’t put up with both professionally and personally.

Would I have learned these lessons without my pain?

Maybe.

But I don’t think I would’ve attained the depth in understanding the human psyche that I have been able to reach with my pain.

When I think of my pain, I often reflect on the wise words of Jibran Khalil Jibran:

Then a woman said, Speak to us of Joy and Sorrow.

And he answered:
Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that holds your wine the very cup that was burned in the potter’s oven?

And is not the lute that soothes your spirit, the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”

But I say unto you, they are inseparable.

Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced.

When the reassure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

I think of his words, and dream of the day the scales will tip, so that unbridled Joy will flood my world, my pain dispersed, and from its ashes I soar, a metallic She rising towards her Creator Sun.

 soar

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One thought on “I know what’s wrong with you

  1. rafahmlb says:

    She shall rise. I know I tend to comment a lot and use the words ‘beautiful’ a lot (but what else can I call your work when it has always been worthy of such praise?), so it is easy to take words at face value.

    I can’t express how much I admire the honesty, the really raw honesty, and braveness of your story. Thank you so much for giving us your eyes and heart through which to help us see the issue of chronic pain more clearly. I have always admired your strength of heart and mind, and when I look at you, I see a very beautiful woman indeed, with the most loving (and cheeky) of smiles.

    I hope you found some liberation in writing this.

    Much love,
    Rafah

    Like

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