Archive: Author: simmonnedh

I launch myself into the arena. Not an arena of blood and sand, where half naked men cut each other up with swords. Instead, my arena is a building in the heart of the city. I am armed with a killer shade of lipstick and a strong will to conquer.

My fears, my curiosity, my image.

Should I have disclosed more about myself, when we spoke on the phone?  More than being a divorced single mother, with a part-time job, living back with her parents whilst being the primary carer of two sons with Autism?  Yet, the proverbial cherry atop the icing on the cake, the factor that sets me apart from all else, warrants a slow reveal.

Growing up, I didn’t want to reveal anything about me which others would find unappealing or confronting.  Ironically, I never wanted to be an invisible person either.  I just didn’t want my problematic invisible parts to become visible.

“How do you know so much about neurological stuff?” Candidate 2 asked me.  We were sitting beside each other on a sofa, his arm resting along the back of it, inching closer toward me.  He had just finished telling me about the acquired brain injury he had developed as a result of surgery.

My Mum had given him the nickname of ‘Show Pony’ when she saw his online profile and photo.  Show Pony was a sharp and snappy dresser and the pose he struck in his photo suggested that he had confidence in himself.

He was Candidate 2, as Candidate 1 had been disqualified months earlier.  Eliminated by his action of walking past our meeting place 3 times, each time pausing to look in the window, seemingly to judge the merchandise, before deciding to enter the building and meet me.  Charming.  My name for him varied between Peeping Tom, Doubting Thomas, to the Weird S.O.B.

“I know about neurological stuff because I was born with a defect of the central nervous system” I replied to Show Pony’s question.  “Ever heard of Spina Bifida?”  He cocked his head like a dog trying to figure out if he had heard the word ‘bone’ or ‘bath’ – two different levels of comfortableness.

Unlike many of my peers of my age, who were born with this disability, I was permitted entry to the main arena of mainstream schooling from the beginning of my life as a student.  Yet, I struggled to compete in this arena.

My differences were a riddle.  I walked on my toes.  I was allowed to use the teachers’ toilet and was given a locker beside it to keep my medical appliances in there.  At the beginning of Year 8, I returned to school looking like I had an eating disorder, having lost ten to twelve kilograms of weight due to several surgeries within a short space of time.

Prior to this group of surgeries, my problematic invisible parts would often lead to me being ostracized due to the whiffs from its waste.  Following these surgeries, pools of water would often form at my feet.  I would stand frozen to the spot in horror, not knowing whether I should move or not in case the pool of water became a flood.  During one of these times, I was standing right in front of several girls from the tough group of my year level.  The pools at my feet had not gone unnoticed.  My cheeks burned and my heart raced as I looked at them looking at me.

“I wanted you to meet me in person before telling you about my disability” I explained to Candidate 6.  He looked down at his lunch and asked “how does it affect you?”.  I have learnt that my instincts and intuition about small human nuances, within the world of dating meetups, are usually correct.  A diversion of a gaze, a sudden interest in a beverage or in food, a change of tone, a sharp inhaled or exhaled breath, all convey messages.

I did have a second meetup with Candidate 2 (Show Pony), which was amusing to say the least.  One of the positive aspects of Show Pony was that he had a worse sense of balance than myself, when walking.  The negative aspect of Show Pony was his formula for intimacy.

Apparently, he would be concerned if he was seeing someone and they were not holding hands by the third date, not kissing by the fifth date and not screwing by the ninth…I just sat there looking at him thinking ‘seriously?  Whatever happened to the natural progression of romance?’  I explained to him that I needed to develop emotional intimacy before launching into a sexual relationship and revealing the challenges of my disability.  Needless to say, I wasn’t surprised, or unhappy, that Show Pony galloped away.

Candidate 6 had a great sense of humour.  “Online dating has more rituals than a nature doco” he wrote, prior to our meet up.  That line kept me chuckling for a while.  Our first telephone conversation lasted for ages.  “This is the best introductory conversation I have had yet” Candidate 6 remarked at the end of our phone chat.

He was highly intelligent, shared many of my interests, had a sense of humour that was witty instead of corny, had lived in other countries and had an accent which I could have listened to all day without tiring of it.  I dubbed Candidate 6 ‘The Communicator’.  We could chat for hours and not run out of things to say.

Then came our first meetup.  Followed by our second.  At the end of our second meetup, something had changed.  I told him that I enjoyed his company and would like to see him a little more often.  The Communicator became quiet and subdued.  I didn’t hear from him for weeks.  When I reached out, he responded curtly.  Communication was withdrawn, by him.

Candidate 6 had excelled at entertaining and intelligent conversations.  However, he lacked the integrity and courage to have the hard conversations.  Without voicing it, I knew that he did not want to risk becoming a carer again within a relationship.

Most of my peers who were born with Spina Bifida are mobility assisted.  Their wheelchairs or their walking sticks announce their disability status without any verbal revelations needed.

However, a visible disability can still make a person invisible. Mainstream society often looks at the disability without seeing the person.

In contrast, my invisible disability does not precede me.  However, once I disclose it, I am still at risk of my disability deflecting other people away from knowing my true self.

My Mother asked me, upon returning from a meetup (NOT a hook up!) with one of the Candidates, whether I would be seeing him again?  “Not likely!” I replied, with a grin on my face.  “Why on earth are you smiling?” my Mother asked, somewhat confused.

“Because I have found a sense of strength and freedom I haven’t had before.  I am comfortable enough to be able to talk about my disability without embarrassment.  I know what I want, what I don’t want, and I am able to say it with confidence, regardless of the outcome.  I am being true to myself by paving my own path.”

This Warrior does not belong in either the disability community or in the mainstream community.  I seem to step in and out of these two communities and inevitably return to walking the path in between.

PRELUDE – I wrote this letter to an Editor in response to an article which featured in our local newspaper, about a disability known as Spina Bifida. 

Needless to say, I am still waiting for a reply…..

Hello,

My name is Simmonne.  I read the article entitled ‘Love and Hope’, with both surprise and concern and with a fervent hope that you may consider a follow up article during 2022.

I am a 54-year-old woman and I was born with Spina Bifida in 1967.

This article surprised me for a couple of reasons.  Firstly, this disability is rarely in the headlines and therefore remains relatively unknown by many people, if not the majority within society.

So, even though I thank you for bringing awareness to this disability, I would like to pose a different story.

The parents in this story did not ‘lose’ 2 babies with Spina Bifida.  Instead, these pregnancies were terminated.

I have no intention of judging these decisions.  However, I am very concerned about what the medical profession is still telling parents about the possible outcomes for babies born with this disability.

After all of these years, with my generation of adults who were born with this disability having achieved and continuing to achieve so much, by anyone’s definition, I struggle to understand why it appears that the bleak information given to our parents so many years ago, may well be the same information given to parents today.

Yes, it is true that the majority of my peers with this disability are mobility impaired.  However, some of us are not – including myself.  Nevertheless, the common denominator most of us seem to share is impaired bladder and bowel continence.

Many of my peers were sent to Yooralla during the 1970’s because they couldn’t walk.  Not because they couldn’t think.  When they were allowed to transition to mainstream education, several of my peers achieved University Degrees, instead of employment at Sheltered Workshops, which was expected of them.  Some of my peers travelled overseas (even independently) and some achieved professional careers (Social work, Youth work, Child Protection, Teaching and management positions within government departments).

Several of us are married (some divorced) or are in ‘romantic’ relationships and some are even parents.

I am a divorced, single parent of 22-year-old twin sons, who have Autism and Intellectual challenges.  I also teach Community Services and Disability qualifications at Melbourne Polytechnic.

I was genuinely interested in the medical procedure described in this article – it is amazing how far science has come.

Yet, I am equally concerned that preventing Spina Bifida at all costs will be the only narrative, the only story, to be told and to be known.

I sincerely wish you an enjoyable and festive holiday season!

Thank you for your time.

Kind Regards,

Simmonne Dyson-Holland

GOOD GRIEF

Four people are sitting side by side on a church pew, swaying together to the immortal words of Roger Miller; “Walking in the Sunshine, sing a little sunshine song.  Put a Smile upon your face, as if there’s nothing wrong…”

We are the ‘primary’ mourners at a funeral – myself, my mother and my two sons.  The Memory Box witnesses our melodic movement and singing. 

The church is overflowing with people and it is as hot as the fires of hell.  Maybe my father orchestrated this irony.

The funeral service endeavours to pull together the multifaceted threads which drew my father’s life tapestry.  On their own, many of these random threads may have surprised, puzzled, amused and even mystified those who knew him less.

From farming memories of being urinated on by livestock, to a horse which came to a sudden stop at a competition jump, preferring my father to clear the jump without him, as a human projectile.

Woven through the eulogies and tributes, are hymns which express my father’s spirituality and faith.  And there are symbolic treasures too.

My father came into my kitchen one day, relatively early during his cancer journey, bearing 2 golf clubs and a football scarf.  My mother wasn’t home.  “Now if things don’t go as planned” Dad said to me matter-of-factly, laying the items on my kitchen bench, “I want the boys to be a part of the service”. The boys he referred to were my sons. 

“Okay…” I said hesitantly “what do you want them to do exactly?  Where do you want them to put these things?”  The voice in my head was yelling – not in the box!!  He replied “just get the boys to put them somewhere near me.  I just want them to be an active part of the day, so that they will be okay”.

Months later, his grandsons lay the clubs and scarf on a table beside him and they are prompted to bow towards their grandfather.  One of my sons bows so low that he almost topples over.

Now their favourite song is playing and for a couple of minutes my sons walk in the sunshine again with their Poppy.

My sons were more runners than walkers.  When my parents were in their sixties, I bought them bicycles for their Christmas present so that they could keep up with their grandsons.  “Next year it could be roller skates” I answered their expressions.

As my sons became a little older my father was able to convince them to ride around their favourite local school ground while he watched and assumed a supervisor role.  Cricket and tennis had a longer lifespan and remained an all in participatory sport for both grandsons and grandparents. 

My sons haven’t asked to return to the local school ground to do “riding and exercises”.  It is an empty stage now.

“Don’t lie to them” the school psychologist advised me, when I asked how to explain my dad’s illness to my sons.  “Instead of saying that you don’t know when Poppy is going to get better, it is more truthful to use the word IF.  So if the worse happens then you have not lost their trust”.

“Hi Love” my mum rang me when I was on my way to the hospital with my sons.  “It is probably not a good idea to visit this afternoon – dad is having a blood transfusion”.  “Don’t worry mum” I replied “that is actually a good thing!”  For my sons now had a visual explanation in front of them; they could see the good healthy blood going into Poppy’s arm to fight the bad blood inside his arm and body.

But the bad blood was winning the battle. 

I spoke to the teachers about how to explain the impending death of their grandfather.  I wrote a script, a simple story about how dying and death would be explained to my sons by the key people in their lives.  The teacher added pictures to illustrate the story.

The day their story was completed, I was advised to bring my sons in for their final visit with their Poppy.  When we came home I read the story to my sons.  It helped them to understand as best as they could.  It helped them to ask questions. 

“How do I explain the funeral to them?” I asked the school psychologist.  I had been truthful to my sons up until now and true to my own beliefs.  The truth had worked up to this point so I was advised to continue with it.

But would I be lying if I bent or omitted a reality or two?  I thought about the things which I fear as an adult – small, tight spaces and being without my loved ones…..

So my mother and I resolved to repackage the funeral experience for my sons – just as my father had planned during earlier days.

I prepared my sons for Poppy’s funeral party…Even though Poppy couldn’t be at this celebration of his life, we would still talk about him, remember him and love him.  It was okay to be sad because we missed him.  But it was also okay to remember all of the happy times we had together and to smile, laugh and sing!

During the service, I invite people to channel their “inner Frank”, by participating in singing the song ‘My Way’.  “My Dad would get such a laugh from this” I encourage them.  “Laughter is not disrespectful” I add.

To do so would be to honour my dad’s own enduring sense of humour – and his wish that we would be okay.

So the four of us sway and sing together in the front pew and imagine our memories, smiles and sadness flying out of us and into the wooden Memory Box at the front of the church. 

Here they will stay safe so that we will never forget.