MS: Many Stories – From the MStranslate Community

Part Two: The Unknown Descent into MS: Cope and Cover-up

by Toni

The bumpy, pot-holed, long and winding road of undiagnosed multiple sclerosis is one of disillusionment, frustration and of repeated futile efforts to attain answers. The downward spiral does not resolve like a movie plot. Rather, the sinking narrative continues on, permeating every area of life, then provides some reprieve, a plateau. Usually just a short breather, leaving you to think that either you were imagining it, or it was the impact of a fleeting illness that you no longer need to be concerned about. Well, that’s what a medical practitioner told me: ‘Nothing to worry about,’ she said. And she’d know these things, wouldn’t she? So, ‘what can you do?’ I wondered. I thought I could hide it. Initially, I thought my effort to conceal troubling symptoms was quite successful. But, the disturbance, or ‘noise’ of the symptoms would just never leave, just vary in intensity at best. From very early on, there was always something. It was insistent, like buzzing, biting insects. And there is only so long you can persevere when you are trying to ignore that.

The issues to be contended with were not so predictable though. A new symptom would arrive like a crashing ocean wave. Sometimes it would subside and calm in time for the new crushing symptom to bear down, like a fresh rolling, pounding wave. Sometimes not. A collection of bewildering symptoms could remain, washed over me, arriving unforeseen. The multiple sclerosis ocean could be calm for days, weeks even, like the retracting pull of the water. Then, the onset and return of issues could return to hit over and over. Some waves would never leave, but after crashing upon me, staying to bubble, fizz and foam, mirroring the ever present, murmuring, inexplicable troubles. The depth of despair would rise in a foreboding manner, threatening, sinking under the rising unknown. A sinister premonition of the MS journey that lay ahead for me perhaps.

I would regularly seek to dull my senses, or more specifically, drown them out. Overwhelm them. To attend a band at a hotel worked well. A ticket to a very loud ‘Faith No More’ gig was a successful remedy, at least for a few hours. As was ‘Pianofortissimo’ at Hamer Hall. Later, I found the refuge of the orchestra or opera to be an effective alternative, and more enjoyable. To have music forcefully propelling through the space so loud that you can feel the air rattle in your lungs was effective in ruling out the need to hear correctly. So who could know if you couldn’t anyway? Vision issues and dizziness easily became irrelevant in a dimly lit, smoky venue. Surrounded on a dance-floor with many people in a group felt as though I was safe from falling or stumbling. This illusion enabled me to deceive myself to balance and stay upright. A wobble or lurch could be hidden by a dance move. Overcoming the onset of the overwhelming fatigue and exhaustion when it would roll in like an ominous, overwhelming fog, required help. I discovered that sugary drinks, caffeine, medicine and alcohol worked very well, not only for energy to stave off exhaustion, but to fuel and move my limbs.

I did not want to pause to think about what was happening. I immersed myself in work: Tutoring at breakfast, retail through the day, collecting pub glasses or watching children at night. Anything I could do to avoid thinking, pausing and being confronted by the vague, indefinable problem. Problems. I had no idea what I was dealing with. Or what to do.

The world was spinning and I was helpless to stop it. I made it hesitate, often abruptly by checking out. I would pull on the brake, or maybe stall the engine, with little warning. No one would know where I had gone. A deep breath. A party finished early for one. A picnic ended before it started. A sick friend. An absent friend. A job resigned. A relationship ended. Any escape. That was me, often. I would recoup, find my feet, and start again, only to repeat. Always the same outcome. What did people want? If only they knew that I am working so hard to exist?

The repeated pounding waves and the rising dark tide of accumulated difficulties and complications continued on. Seeking asylum became possible through career and academic immersion. This sanctuary became my fortress. The rules, systems and parameters to operate within, and adhere to, made my existence safe from a world of doubt and ambiguity. I could breathe. I could thrive. I could focus. I could believe and achieve. Again I committed to being okay. Just maintain resolute, single-minded dedication. That goal was my only focus. It was my crusade. The rest of my existence just happened. In that world, I felt completely detached. Things happened to me. I was an absent actor watching through a fuzzy prism, from afar.

Where was the help from my family? Where indeed. Help-seeking behaviour and requests for help, ignored. I was in high school when I described my recurring and troubling symptoms to my mother. This resulted in being repeatedly rebuffed with, ‘Oh I’ve had that. But I had it first and it was so much worse.’ Eventually, I gave up. Other family members did not recognise the gravity of my symptoms or take me seriously either – my nana attributed my dizziness to having showers that were too hot, and my grandma, with the best of intentions, asked in hushed tones if it could be that time. Both nana and grandma clearly wanted my symptoms to be nothing serious. So did I. Unfortunately, help was not afforded to me. I was on my own. Nowhere to turn. And in hindsight, I realise that I only ever asked ladies for help. I had learnt early in life that males were not to be troubled with my menial issues. And maybe it was purely because I had found them to be just not approachable, interested or caring, or capable.

Looking back, I can see that I may have been offered one avenue for considering seeking help. Though I did not realise it at the time. Perhaps it was the one life vest being thrown to me, in the choppy, uncertain waters. A respected, insightful family friend mentioned to me, before I embarked upon year twelve at school, that not all people choose to cope with that endeavour. Perhaps she was mindful of how I became unwell after involvement in stressful situations? Or maybe she knew that my parents referred to me as ‘highly strung’. Is that what she was aware of and acknowledging? I wondered. Briefly. I took a deep breath and immediately dismissed her idea. I pushed ahead. I stupidly could not stop to review the rising tide or repeated pounding waves. Heck. I was going to be accepted into a science degree at Melbourne University! I had to. It was all I ever wanted. In spite of what I was experiencing, I forged ahead.

Moving forward in life, I would surround myself with people I thought I could trust to help me, if dark waves came crashing down. As it turned out, that was a major miscalculation, an overestimation. The dark, suffocating, heavy waves did come crashing down upon me. And I sank deep beneath the rugged surface to a dangerous low. A depth I had not seen. There was no help.

‘In spite of everything, I still believe people are really good at heart,’ said Anne Frank. For me, the considerate, kind-hearted extended hand made a difference. The compassionate glance. The help to rebalance, as an expression of people’s empathy and kindness, was so appreciated. Harsh and cutting words were a regular experience, though, and will always be remembered. Maybe they felt sharper than intended. But they hurt because I was trying so hard.

I was hiding this well. Not from others but from myself, as it turns out.

Coming Soon – Part Three: The Unknown Descent into MS: Adapt, Overcome, Thrive