Our latest MS: Many Stories feature is written by Toni, a regular MStranslate contributor and member of our local MS community here in Melbourne, Australia.  If you haven’t read Toni’s previous contributions to MS: Many Stories, you can do so by clicking here and here.

Shimmering Stars

Clunk. The weighty front door groaned shut behind me with determined finality. I turned with despair, a cold sweat building as if to announce the sense of dread. I was locked out of my own home. Tapping unenthusiastically at the entrance produced the expected outcome from the nonchalant, disinterested cat. I resigned myself to the knowledge that there would be a wait. I moved so I could see into the empty lounge room – the invitingly warm, yet absolutely inaccessible, lounge room. The blue flickering of the pictures on the television seemed so irrelevant, so useless, so distant. ‘My goodness, it is brisk outside,’ I noted to myself, trying to cheer myself up, as the cool night air caused the hair on the back of my neck to prick up, and a shiver to shudder its way down my spine. I imagined that the shiver continued to my toes and fingertips. The air held a cold, heavy moisture contributing to the bleak environs. I yearned to be back inside.

With a jolt, I realised that this experience was mirroring that of my diagnosis of the incurable, progressive, degenerative neurological condition, multiple sclerosis (MS). The comparison struck hard. The diagnosis had resulted in me being suddenly and unexpectedly shut out of my environment of comfort, my life, my world, just as I was from my home on this night.

I leaned backward, taking a deep gasp of the dense night air. The air stung my throat to the back of my nose. From this angle, I could glimpse the night sky. The cloud cover had retracted, exposing a heaven littered with glittering, blinking stars against a dark, deep palate. The beauty was humbling. I took some time to take in the magnitude of the beauty.

A number of brighter shimmering stars were unique. They projected luminescence further, brighter, stronger. They prompted thoughts of the exceptional influences, the bright lights in my multiple sclerosis journey. Initially, after diagnosis, there was the remarkable influence of the science-based insight and education shared by Professor George Jelinek, and each fellow participant, or friend, at his retreats. In a frightening, uncertain dark world, Professor Jelinek’s contributions shine a light in the direction of positivity and informed optimism. He explained, from scientific research, with clarity, that diet and lifestyle are such important factors to managing MS. The bright, glimmering stars illuminating a pathway immediately for me were the diet and vitamin D recommendations. Changes could be implemented immediately. Professor Jelinek’s positive influences for many continue through publications, research at The University of Melbourne, retreats in the Yarra Valley at The Gawler Foundation, his website and presentations worldwide.

Adding to the luminescence has been the informed lived experience of Kerri Cassidy and the team at CCSVI (Chronic Cerebrospinal Venous Insufficiency) Australia. Not only does her star shine brightly fuelled by an educated sharing of knowledge, but by her conviction and devotion to ensuring availability and access to vascular treatment. She will not cease until this aspiration is realised. The community is watching with held breath, cheering on each achievement. With each step closer to achieving the goals, the star shimmers and blinks with added intensity in the night sky.

Within the local business community, a number of exceptional, kind people focus on ensuring everyone can access their services, facilities and enjoy attending and patronising their businesses. To be in their company and supporting their businesses is a pleasure. The warm welcoming glow extending from their stars seems to envelope all around them. The glistening light communicates a sincerity and benevolence that ensure success and contented customers.

Five years ago, it seems so long ago, I arrived at my hairdressing appointment during a very difficult phase of my MS journey. Alighting the external, bluestone steps to the salon became as likely as climbing Mt Everest. I tried unsuccessfully. Distressingly. After I had dissolved into frustrated tears, the hairdresser appeared in the doorway, looking out at the disaster I had melted into. Without wasting a moment, she announced with certainty and conviction that she would pack up her tools and meet me at my house to style my hair. Her compassion left me stunned and grateful. I would never, ever have considered this an option to resolve this debacle, a calamity that I had never had cause to contemplate, much less to problem-solve. I was struck by the immediate, no-fuss solution communicated down from the pinnacle of the steps, for an issue that was new, unexpected and very upsetting to me. It was the voice of an angel. A very bright star.

Looking up to the heavens, a cluster of astronomical lights stood out. For me, my cluster of luminaries that I am fortunate to see in our local community support group meetings, and in online communication, are irreplaceable. The shared support, the humour and the understanding are brilliant, like the stars, and an extremely rare gift.

Access to translated and independently interpreted science regarding MS can feel as distant and unreachable as the end of our universe. This information vacuum or black hole absorbs the light emanating from the bright stars, both in our solar system and in MS science communication, it would seem. The relief and excitement arising from forging a relationship with the independently curated MStranslate is consistent, stable and reliable in a world that is wildly unpredictable. MStranslate can be depended on for the delivery of level-headed, considered and informed translation of information that you could expect from a skilled, impartial science communicator. Each scientist and researcher MStranslate arrange to be available for direct communication online, from all around the world, blink onto our dark computer screen and lights it up with a shimmer and shine that illuminates.

Taking in the glistening astronomical beauty prompted a sudden intake of breath. As I moved my head from side to side, toward my shoulders, to stretch my weary straining neck, I noticed and was bemused by a plane traversing the sky. It was presumably able to be seen because of oncoming weather, as a plane would not normally be visible or audible here. I smiled as I thought that the intermittent flicking or the navigational lights might be seen to blend in with, and be, one of the heavens’ lights. I thought about this further. I realised that just as you could be mistaken by the plane’s lights, so too can you be deceived by false bright lights in the world of MS. Sadly, for me, the idea that a big-dollar MS medication would actually help me, was exactly that: a false star. The false stars might also be some people you encounter. Unfortunately, some organisations claiming to be a charity, or for people with MS, turn out to be anything but that. I guess scientists do tell us that there is much space junk out there, and space travellers need to avoid it. And similarly, psychologists assist us to deal with the junk in our lives down here, which ideally we need to avoid.

My mind then turned to other organisations and people that I have gained immeasurably from since my diagnosis. These true sparkling stars include Youngcare, an Australian truly charitable organisation that helps incredibly, MS Hope based in Canada, Matt Embry and Ashton Embry via MS direct, and the allied health professionals locally, that is, the occupational therapists, exercise physiologists, the neurological physiotherapists, the myotherapists, the masseurs and the case managers.

It was at this point that a new realisation washed over me. I became aware that each addition to my valued network of shimmering stars had been added to the network by me, as I valued it as an essential part of my team to help me to either adapt to my new world with MS, or to overcome the barriers. I had assessed and determined that in order to adapt to my new world, in which I had been abruptly excluded from my morsels of comfort, I would need to critically evaluate each and every resource that became available to me. This also meant the people around me. Were they a resource that would travel this journey with me? Or did I need to recognise them to be a star that fell from my sky, burnt out or extinguished. Or maybe they were never a star at all, much like the lights on the plane.

A sad yet accusatory call emanated through the cold night air. The source was the hungry white cat staring out from the lounge room, expectantly, demandingly. Reminding me. Haunting me. The cat was always there. Watching. Ready to pounce without notice. Striking at an unforseen time, an unforeseen area of my body. The cat did not care for the consequence. Ever. The white cat’s seemingly safe presentation and indifferent behaviour invited comment from many. ‘She is so lovely!’ or ‘She is so beautiful!’ they would gush, with no idea as to how the real experience of the white cat could be. How nice for them, I thought. To not see the troubling side of the cat was a blessing not afforded to me. This echoed my experience of MS. ‘But you look so well! You wouldn’t know that there is anything wrong!’ well-meaning, encouraging people would chime. And behind your back some would mutter, ‘There’s nothing wrong with her. She just wants attention.’ Others would often learn of the diagnosis then be prompted to offer their self-appointed expert opinion, stating how unremarkable the condition is. After all, their ‘cousin’s workmate’s sister’ (or something similar) has been diagnosed with MS ‘and they are completely fine!’

However, what goes unseen is the regular ‘pounces’ of the MS, like the pounces by the fluffy, white cat. The arrival of the MS pounce was always unpredictable; it would always provide new symptoms that would result in fright and distress. Many times, the pounce of the MS could result in tripping, falling and new physical injuries. The impact of the MS pounce on sensation could result in searing pain like razor sharp pins and needles. Or, like the gouging of flesh by cat claws. The MS pounce would spear out to attack after lying dormant for days or weeks or months. Long enough to seem as though the MS had gone away. The result of the MS pounce, the symptom, could remain for days, weeks, months, even years. But the MS wants attention, like the white cat. It needs attention, like the white cat. Like the white cat, MS haunts me. I know I need to expect that it is always ready to pounce.

The call by the white cat sliced through the increasingly damp night; so too it cut through and disrupted my reflections inspired by the dark night sky. Adding to the distraction was the welcoming arrival of my husband. His car wheels quietly rolled over the crunching gravel. The termination of the purring motor marked the completion of his journey and his arrival home. This entrance, so welcomed by the white cat, reminded me that here was the brightest star in my sky. He would now enable my access to the warm, welcoming world that I had been excluded from. I was reminded that the network of inspired people that make up the system of support, the galaxy, is greater than the sum of its parts, that is, each individual star. It would be this network that would inspire me to thrive and find the resources to do so.

The heavy door no longer provided an impenetrable barrier to the warm comfort awaiting inside. Once the jangling keys were inserted into in the lock, the exclusion created by that locked door this evening was finished. The white cat ceased calling out. As the door screeched open, her pink nose sniffed the outside cold, moist air. Immediately, she recoiled and retreated into the warmth of the comfortable lounge room from which she had previously stared out from into the night. With a satisfied huff, she retreated to stand expectantly by the food bowl. I understood that the cat had also realised her own network, her network of support. From there she then started calling out for her own shining star, to bring food.

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