What is it that Ryan O’Neal and Selma Blair have in common? Not much I would think, although 6 Degrees of Kevin Bacon tells me it’s Antonio Banderas.
I am a bit late to the Selma Blair standing ovation that has happened this week in spoonie social media. For the non-spoonies that don’t know what I am referring to behold this beautiful portrait below of Selma’s first public appearance since she was diagnosed with multiple sclerosis (MS).
A photo like this can divide the spoonie interwebs. Is it inspiration porn, applying a fuss where one should not be made or is it a much-needed representation of chronic illness and disability? I personally found the images of Selma to be inspirational, not so much of the porny kind, but the courage kind.
The images of Selma that appeared each scroll of my newsfeed, and the feelings that came with, gave me cause to reflect on an interview I conducted almost a year ago, never seen by anyone other than my uni tutor until now. For someone who aspires to be a writer, I actually don’t like my own writing. I’m the Johnny Depp of words. Reading over my work gives me the cringes. Every journal I have ever started is now a blank canvas where upon closer inspection you can see where used pages have been torn from the spine.
With that in mind and a dosage of Selma courage, I have posted it here with the permission of the interviewee.
I know. I know. That was a bigger stretch than a Jane Fonda workout VHS.
“How old is Neil?” I ask my daughter as we drive slowly down the dark street looking for the street number he texted earlier.
“I don’t know” Amelie replies, “Maybe Grandpas age? They hang out together a lot at camp”. Camp being the general term for Easter Camp where Seventh Day Adventists from around Western Australia converge into one large grassed parcel of metropolitan land to talk all things Jesus. I was raised as a Seventh Day Adventist, but left the church when I was 16. My daughter remains my Mums last hope to continue her legacy and has taken her to camp since she was old enough to attend Sabbath School. I loved camp as a child and see no purpose of denying my daughter the same experience based on my faith, or lack thereof. She is mature for thirteen and has already worked out her religious leanings, but as it is for most kids Camp comes with a social life. She has put considerable effort into maintaining friendships with home schooled country kids that only come to the big smoke once a year and looks forward to their annual reunion.
Neil too is a Seventh day Adventist and is fulfilling his Christian obligation by giving up what little of his free time he has today to help me out with an interview assignment for university. This is what I know about Neil. He is a Seventh Day Adventist. He rides a motorbike. He is in a wheelchair. The Sesame Street sketch One Of These Things Is Not Like The Other could be applied several different way to Neil, but it seems I have more in common with him than I might have realised.
“There’s his car mum” Amelie points to a large 4WD with the personalised number plates RHINO. Rhino is Neil’s nickname that I have seen more than once on my suggested Facebook friends list. I thought it might have something to do with his size or strength. It’s in fact a reference to Ryan O’Neal, the actor. Somehow Ryan was attached the beginning of Neil’s name and our Australian drawl has dragged it out as Rhino. As someone who has named her child after a French film of the nineties I am more than familiar with how our accent can bastardise the most famous of names.
I grab Amelie’s backpack from the boot of my car. She has medical issues and accompanies me most places. Had I known my healthy child was going to deteriorate so quickly in her tween years I might have tried to find employment somewhere with a family sick room, or stayed in my failing marriage and attempted home schooling. I have somehow managed to maintain full time work and attend full time equivalent study to prepare for our future. She has managed to maintain A’s and B’s with only a 50% attendance rate at school. I have no idea how. My Dad thinks we are smart cookies. My therapist thinks I have a slow cortisol leak.
We walk up the ramp to Neil’s door where we are greeted by his wife. She gives me a quizzical look of someone that thinks she might know me. I attended a Seventh Day Adventist school for year 11 and 12 as a boarder. While I haven’t been an active member of the church since I graduated in 1991 I seem to have left an impression. Dying my hair henna red and wearing a Cult band shirt on my first day seemed to set the tone for my sentence. Getting kicked out of religion class for laughing when they made us listen to Hotel California backwards sealed it. She takes charge of Amelie by getting her comfortable in front of Foxtel with her own daughter, a few years older than my own.
Neil wheels out to greet us. For a smart cookie Amelie has guesstimated his age quite incorrectly. He is much closer to my age than my fathers. He has a wide gapped tooth smile and wears a black shirt with a logo that you would associate with a biker or at least a heavy metal fan. It’s only when you get close you can see the religious iconography in the detail. It makes me laugh on the inside. For someone who has a biker for a father and a Seventh Day Adventist deaconess for a mother, Neil has managed to represent my parents in one Crazy Tee’s shirt.
He offers me a seat at the table and manoeuvres his way to the other side where there is another wheelchair. I mistakenly think this is one of his that serves another purpose but he pushes it into the kitchen. “That’s my sons” he offers in explanation. Two wheelchair users in the house and I am starting to understand why they don’t have carpet.
Neil has Hereditary Spastic Paraplegia, an inherited neurological disorder that makes leg muscles weak. Neil and his brother inherited the gene from their mother, who inherited it from her father who was adopted at a young age leaving the genetic trail cold. He motions to his daughter sitting on the couch with my daughter. “We don’t know if she has it yet”. I look around at the obvious signs of renovation taking place in their home synchronising with his family’s changing physical needs. I think of the little unit that I share with my daughter and how much work needs to be done to manage ours.
Our home is small and was purchased from an elderly man. I often joke that its size and location close to town was a choice based on my retirement needs a few decades in the future. It wasn’t. It was based on what I could afford when I left my marriage which wasn’t much. However, it turns out we needed a retirement style home sooner rather than later. I have a degenerative auto immune disease where my body attacks its own joints. My tour of duty in a wheelchair was brief and I survived with a cane for a few years. Once my specialists figured out the right drugs I was back at yoga and performing questionable improvisational dance moves after too many glasses of bubbles at book club. Classic moves in both modern dance and drowning my fears of the future that was being suspended by modern medicine. While I have plans to install a handrail in the shower and lower some counter tops the only evidence of the elderly man that lived there before is the handrail in the toilet. This is where my daughter spends a large amount of time with catheters, wipes and hand sanitiser.
Amelie has had bladder and kidney issues since in utero. A routine ureteral stent procedure turned into a much longer surgery when her doctor discovered some bladder abnormalities. The surgery then resulted in chronic neuropathic pain where she lost the ability to walk and use her bladder effectively. We began the journey of self-catherization and picked up a walker from Gumtree, which we then pimped up with some scooter wheels and sewed a new chair cover in Day of the Dead skulls. The chair was named Vera, after its previous owner. Vera has been out of commission for a little while now and resides in my parents’ spare room just in case. Such is the nature of neuropathic pain.
Neil’s son Josh limps into the room looking every part his father’s doppelganger. “He is a lot more active than I am” Neil offers as explanation for his son walking and not using his chair. There is a graduation of walking aids that Neil has been through and that Josh will experience. First was the cane which Neil states “I hated that cane. It represented everything that was wrong with me”. After the cane was crutches. Then came the wheelchair. Neil’s current role is working with disabled members of society for Adventist Care. I ask how he feels about his wheelchair in that environment “It’s an asset. I would put it on my resume if I could” he grins. I long for his optimism. Is it time? Experience? His faith?
On Saturday 29th April I am sitting in my GP’s office. I had a regular appointment but have woken up not being able to breathe properly. My lungs hurt. I am taken to the closest ED and administered some anti-inflammatories that help a little. My long-term medication is an immunosuppressant that slows down my body’s over-eager response of attacking itself, unfortunately, over the last few months, it has let some other bugs in. Mostly shingles. In my nose, in my eyes. Now they think maybe my lungs. An MRI or two later I am given the all clear for shingles. But my rheumatologist has some other news. “It’s Fibromyalgia”. Being a regular on the chronic illness forums I know enough about this one. It’s painful, there is no cure, lifestyle choices reign supreme. Further to my diagnosis, I am also being taken off my improvisational dance move drugs to give my body a break.
It only takes a couple of weeks. I go through the back of cupboards looking for knee straps, liniments that are mostly expired. The swelling is quite rapid. It has been years since I experienced it and wonder how I managed with a toddler when this was my previous normality. I am building a pile of arthritis goodies on my bed preparing for the weeks ahead. But there is one thing missing. In my wardrobe on the top shelf. Hidden with old x-rays and some fancy dress items. I feel around, I can’t see that high but tippy toes on my good leg lets me reach a little further. I grasp its cool surface and give a tug. My cane. I hate this thing. It represents everything that’s wrong with me.
Ableism is a term most people would be familiar with, in a nutshell, it is discrimination and or prejudice against people with disabilities. Recent reflection would indicate I have been battling a minor form of internalised ableism. Described perfectly by Disability Rights Bastard as “A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies.”
I have cane shame. I would never think twice about another person requiring a mobility aid, yet I don’t apply this value to myself. I believe this is an issue shared by some people with late-life diagnoses, especially of the gradual deteriorating kind. The kind that Selma has. The kind that I have. My fear of my cane stems from my disease winning. It represents something that is beating me. I am somehow losing a battle. Losing independence. Losing income. Losing quality of life. Losing friends. So much loss.
Images like Selma’s don’t reinforce loss but give gains. Not dude bro gains, acceptance gains. Maybe my cane isn’t representative of my illness but simply a necessary accessory on the red carpet of life.
But I’m gonna need a cape.