my story
C’mon, everyone, let’s get inclusive
FIRST CHAPTER
Our lives are made up of many stages informed by experiences; from happy to traumatic, inside, and outside of our control.
I have a privileged life, the first 40 years unfettered by the impact or, to my shame, thoughts of the vast societal and individual impact of disability.
I set up my ordinary life with a man I cherish more each year. Together we gave life to three much loved mini-humans. As a tight family unit we made many memories from varied experiences and I generally took for granted our health and abilities.
From getting a splinter out of a chubby little finger to jumping in the car four times while baking to replace an ingredient I kept burning. Preparing for relocations, I packed up our houses and sought new housing with no limitations. I pursued courses and hobbies and socialised and entertained.
All without sacrifice, compromise, prejudice, discrimination or misunderstanding.
THE DIAGNOSIS
It’s 2007, and my GP is explaining the possible prognosis of a Muscular Dystrophy based on unusually high creatine kinase (CK) enzyme found in a recent blood reading. I’m listening without comprehension – what exactly is Muscular Dystrophy apart from an unattractive sounding name with too many syllables? This surely isn’t something connected to me.
Two days later, my foray into the elaborate world of medical specialists, scans, procedures and equipment scripting and trialling that will engulf my life, begins in earnest. After a muscle biopsy, my neurologist confirms Limb Girdle Muscular Dystrophy (LGMD). She also explains that no two people will take the same LGMD journey in terms of the exact cause, progression rate, the severity of affected muscles and associated comorbidities that may present.
I am simply told ‘you won’t die from LGMD but you’ll die with it’.
I’m an active mother of three teenagers, I work part-time, support my corporate husband (Gaz), pursue various hobbies, and enjoy a lively social life.
I can’t fit a debilitating neuromuscular disease into my life! And I really don’t want to.
Of course, there is nothing any more special about me than the rest of us so why shouldn’t LGMD (and severe disability) visit me.
So, with a prognosis of LGMD that is ambiguous at best, and terminal at its worst, my options as I see them are to self-educate, gather supports, and adjust..
SECOND CHAPTER
I’m now 15 years into life as a woman with a disability, or a disabled woman. I prefer the former description, but using such self-identifiers is a contested issue within the disability world.
As my symptoms advance, we adjust, compromise, sacrifice and fight hard to make living with a disability work.
I could walk unassisted until twelve years ago. I could shower myself until seven years ago. I could move from one seat to another until six years ago. I could turn in bed until four years ago. I could raise my arms until two years ago.
I will never thank LGMD for the emotional and physical pain and limitations it has wrought on me/us. But I am grateful that these struggles have forced me to be part of a mix of impressive, tough, empathetic, resourceful, and intelligent individuals that are stakeholders of one of the largest marginalised groups.
I am galvanised by the strength and determination of disability advocates and activists.
I am in awe of the wisdom and vulnerability of the storytellers.
I am inspired by the people actively making legislative, policy and guideline changes.
I am appreciative of the entrepreneurs within the disability industry.
I am grateful to the many empathetic support workers who are willing to understand and self-educate.
I am indebted to the competent, compassionate allied health professionals, especially the nursing fraternity.
Most of all I’m deeply humbled by the unconditional love and unwavering support I personally receive from those close to me.
Recently in Leanne’s Wheel Life
I was surprised recently to learn that If you have a disability and use a wheelchair or similar mobility device and use a modified vehicle you may be eligible for a 100% discount on your annual vehicle registration fee. This is my latest bureaucratic Journey.