For me, being stuck at home for prolonged periods of time, due to chronic illness, is the norm. Hospital admissions, operations, cancelling plans and missing out on events and opportunities is a way of life.
Over the years, many birthdays, holidays and celebratory occasions have been lost to my condition. Whole months have been wiped out to repeated bouts of pneumonia, pleurisy and pneumothorax.
~ This is the case for thousands of disabled and chronically ill people throughout the UK! ~
I know what it is to struggle, to feel trapped, isolated and helpless. Such an existence really puts life into perspective and opens your eyes to what is truly important.
Attitudes to Lockdown Restrictions
Since lockdown began, I’ve seen and heard many petty complaints from ignorant individuals, which I find incredibly frustrating.
People whining about being unable to go out partying or bar hopping to get pissed.
To those self-absorbed cretins ~ GET OVER YOURSELVES!
Despite warnings, many continue to flout the rules, refuse to wear face masks and generally take life for granted, with little regard for the wellbeing of others. Some naively appear to think they’re invincible.
Trust me, it’s a hell of a lot easier to breathe through a protective face covering than a ventilator!
So please, have a little care and consideration. Protect yourself and others.
During lockdown, I can honestly say I did not miss going to pubs, restaurants, cinemas, shops or salons. To me, these are life’s luxuries.
Yes, we all need that escapism and we all enjoy going out and socialising, myself included.
But, when the time comes to look back on my life, I’m pretty certain I won’t be thinking, “damn, I wish I’d done more pubbing and clubbing”.
The one thing I REALLY missed during lockdown was quality time and physical contact with my family and closest friends. Being able to sit with them, touch them, hug them and talk face-to-face.
~ It really isn’t what you do, it’s who you do it with. ~
Admittedly, I was unaware of the pioneering disability advocate Robin Cavendish prior to the release of Breathe, a much anticipated biopic starring Andrew Garfield. Thankfully, this important figure’s story is sympathetically portrayed with charm, decency and humour in Andy Serkis’s directorial debut.
The film brings to attention the life and achievements of one of Britain’s longest-lived responauts – Robin Cavendish (Garfield) who, at the age of 28, became paralysed from the neck down after contracting polio. Unable to breathe for himself, he was kept alive for almost forty years by a mechanical respirator.
We are first introduced to the handsome, sporty and awfully posh tea-broker in late 1950s England, where he meets and falls in love with the equally posh Diana, affectingly played by Claire Foy. The blissfully happy couple marry and relocate to Nairobi where Diana announces she is pregnant. Life was good and seemingly limitless.
Struck down only a year into their marriage, Robin and Diana are told curtly by doctors that he will survive no more than a few months. Confined to his hospital bed, Robin wished for death, mouthing to his brothers-in-law the words ‘let me die’. Depressed and resentful, he spits in the face of a hospital chaplain who suggests his suffering is part of God’s plan.
A helplessly devoted Diana asks what she can do, to which her husband responds, “Get me out of here”. Choosing to courageously risk death rather than submit to merely exist, hidden away as a patient for the remainder of his days, Robin was the first to pave the way for all other incarcerated disabled individuals. He determinedly pursued life, freedom, social integration and acceptance.
Opposing contemporary medical convention, the Cavendishes defiantly leave the hospital constraints in a blaze of glory, ignoring a disgruntled doctor who calls after them, “You’ll be dead in two weeks!”
Upon their exit they pass by two women who comment that it’s “not right” and “cruel” even, for “them” to be out and seen in public. This brief dialogue epitomizes the narrow-minded medical and social prejudice towards the severely disabled population, at the time.
The remainder of the film chronicles Robin’s fight to challenge such perceptions, whilst also pushing the boundaries of possibility. Not only does he succeed in changing attitudes, he was instrumental in making revolutionary practical advancements, thus effectively changing the lives of thousands of disabled people worldwide.
With the assistance of Oxford professor and inventor Teddy Hall (Hugh Bonneville), Robin develops a wheelchair that incorporates a ventilator, allowing him the freedom to venture beyond four walls, which he does with gusto.
A particularly funny episode involves a family holiday to Spain, during which Robin’s electrical respirator blows up, leaving him, Diana, their son and Diana’s brother stranded on a dusty layby. Not so funny, you might think. But the interaction that follows adds much needed light-relief.
While wife and son keep a jovial Robin breathing with the aid of a bag respirator, Tom Hollander’s character goes in search of a phone to call Teddy Hall back in England. The group then set up camp and attract a local crowd who party with them until Teddy makes a comical arrival on the scene.
As in life, there are moments of heart-breaking despair adding shade to the sunny optimism and whimsical jollity throughout. In one such scene, Diana presents photos of their former life in Nairobi to young son Jonathan who asks, “Can we go to Africa, Daddy?”
Unable to explain his plight to the youngster, he stifles tears of anguish as a watery-eyed Diana can say only, “I’m so sorry”. “So am I”, Robin softly replies.
Some years later, Robin teams up with Doctor Clement Aitken and together they tour Europe, demonstrating the custom made wheelchair. Particularly shocking is their visit to a German hospital where disabled patients are maintained in what looks like a futuristic, white-washed morgue. If you didn’t know this is a true story, you wouldn’t believe it.
The film, which on the whole is a little too rose-tinted, benefits from stark, impactful reminders of the ways disabled people were viewed, treated and constricted. However, it lacks detail and grit, failing to depict the daily grind of real life, the mental strain and tensions within relationships.
While the central performances are commendable, they fail to achieve the same conviction and reaction as those of Eddie Redmayne and Felicity Jones in the comparable The Theory of Everything (2014).
Nevertheless, Breathe no doubt remains an inspiring tribute to the highly influential innovator Robin Cavendish and his triumph over adversity. His story has been realised with love, affection and sincerity, quite literally since the producer, Jonathan Cavendish, is his son.
*This article can also be found on the Muscular Dystrophy Trailblazers website.*
At the time, I had no idea why I was going to see a Consultant orthopaedic spinal surgeon. I was nine! To me it was just yet another appointment.
There was no faffing around; this doctor was straight to the point! I was told I needed imminent corrective surgery to prevent further decline. I was horrified to hear the graphic details, the lengthy recovery period, and how it could even prove fatal.
Of course, I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was unexpected news to take in at a young age.
How I Made My Decision
As a child, I annually attended Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.
My parents and I were never given a prognosis nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.
Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and would leave knowing nothing more than we did before.
I have, in all honesty, learnt infinitely more as an adult through my own research, social media and from others with muscular dystrophy.
My point here is that my parents and I had nothing to base our decision on.
It is now twenty years since I was told I needed a spinal fusion. This was pre-Google and pre-social media. We weren’t put in contact with anyone who had experienced the operation. So, other than a verbal overview from the Consultant, we had no other information or point of reference.
After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.
Do I Regret My Decision?
At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.
The procedure back then was very different compared to today, and I was very young. My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.
However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.
No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.
Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.
On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.
But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.
I’d love to hear about your experiences with scoliosis and spinal surgery.
– Have you turned down corrective surgery?
– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?