My Turbulent British Airways Flight

Towards the tail end of last year, I got a diagnosis that made me think to myself, “Maybe I am indeed up a creek without a paddle.” This time, maybe this time, luck would not be on my side. Worry set in, worst case scenarios raced through my mind at alarming speeds. My inimitable surgeon who performed my second surgery in November 2014, told me I had a “pretty severe infection” that had adhered itself to the metal mesh cage in my spine, (and I am quoting verbatim). Thus began, the seemingly never-ending, excruciating process of a 10-week course of strong-ass antibiotics, weekly blood tests and pricey scans in preparation for the inevitable – surgery. Right now, in my imagination, one could hear a pin drop as I conceive this word.

For those who have not endured the traumatic subconscious flashbacks one experiences after being under the knife, surgery is actually rather brutal. The body is literally cut into; through several layers of skin, flesh, muscle, ligament, tendon, sacs, what have you. Of course, depending on the area in question. After your surgeon has hopefully fixed your ailment, all these layers are sewn back together, one subcutaneous purse-string suture at a time. Recovery can take a toll on your body, culminating in weight loss, waning of one’s
appetite, trippy hallucinations from the morphine drip and other unwelcome side effects that
may manifest in a variety of ways.

As the surgery date grew closer, my stress levels achieved astronomical heights. So much so, that there was an unfortunate physical manifestation of the rising tension in my body. My lips began to display peculiar spastic movements whenever I spoke, to such a degree, that it actually affected my speech. Embarrassed does not even begin to scratch the surface of the shame that I felt every time I opened my mouth. Sounds debilitating right? The week before my travelling companion (aka my beautiful, kind-hearted Mama) and I were due to leave, we were bleeding money. One of the most costly “side effects,” of being in the life (the disabled life, that is) are the expenses. Life becomes exponentially overpriced. The simple pleasures become more complex and convoluted. For example, catheters which are used to empty bladders (in other words – pee pee) cost about $11 each. There are 20 catheters in a box and I use about 5 or 6 a day… I urge you to please do the math. If you are lucky enough to qualify for the United Kingdom’s National Health Service (NHS), you can get
your catheter of choice for free.

If you happen to live in the viciously capitalistic Nigerian or North American societies, where insurance companies reign supreme, the whole rigmarole becomes even more complicated. Depending on the tier of insurance you can afford, translates to slowly sealing one’s financial fate, as it were. The insurance companies may absorb all, some or none of the cost. Guess which scenario is more likely? According to a fascinating article by The Conversation, one in ten Americans live with at least one disability. The average cost of living as a disabled person in the States is nearly $20,000 more per year than an able-bodied individual*. To me, this is definitely an underestimation. When I was fortunate enough to be able to live in Southern California
(SoCal) for twelve months, we paid for every. single. thing.

Every doctor’s or specialist’s visit, every prescription, every accessible hotel room, every rental wheelchair van, every meal, every ingredient for sustenance, every additional cost incurred when tweaks are made so whatever activity can be disabled-friendly, was etched into the very tangible self-fund column. Because we were not US citizens, we did not qualify for any government benefits. Our saving grace – we pre-ordered cartons of catheters and some vital medications whilst wewere in England, to lighten the monetary burden. To be honest, it felt like a drop in the ocean. Our other lifeboat was kept afloat by donations from wildly generous relatives, friends and strangers through a grassroots process known as crowdfunding. In 2015, it took nine months to reach our goal of $250,000.

To this day, websites like GoFundMe are immensely popular with the wealthy and less fortuitous alike, for obvious reasons. In the present epoch, crowdfunding is so ubiquitous that one of my quad squad friends based in Virginia State in good old U.S. of A told me that she still raises money online to cover the payments for one of her meds that costs about $1,000 per month. And she has been a quadriplegic for 12 years. Despite the fact that she has a good job, is in a two-income household and has great insurance, she still needs additional pecuniary support. Amidst my gasps of incredulity and disbelief, she also informed me that all her disabled friends do it. It is as normal as taking a breath and is an essential means of survival in this cruel, cruel world.

According to the National Spinal Cord Injury Statistical Center, in 2010, estimated costs of living in the first year as an SCI-person starts at half a million American dollars*. That’s $500,000 in numeric form. Or 300,000 British Pounds. Or approximately 61.1 million Naira using the average dollar/naira exchange rate. In 2010 money. Let that sink in and wash all over you. With the numerous surgeries, physiotherapy and occupational therapy sessions, medications, hospital stays, residential modifications etc., how many people can afford to
pay these excessive and immoderate amounts? Even if the injured party had money saved up, it is most likely relatives and friends will help pick up the proverbial and literal tab. With the assumption that the person in question actually has a support network. Not everyone does.

Forgive me for the not-so-little detour from my principal point. Sometimes, I am a tad loquacious and have a slight tendency to digress. Back to the main storyline. Our departure date finally arrived and the hairs on the nape of my neck were at attention. One could figuratively feel the air of excitement as I ticked off items on my checklist, tested the strength of my suitcase padlocks and glided into my wheelchair van. We bid adieu to our home and drove towards the Muritala Muhammed International Aeropuerto.

Passing through security at the Lagos airport was no small feat. The waiting, the delicate negotiations (aka the money dance) with airport staff, the heat, the exhaustion, the wasted words make you feel like you’re on a pointless, hapless hamster wheel, spinning your tails. The flickering light at the end of the tunnel that makes the whole tedious process worth it- the moment your butt lands in your airplane seat, inching that much closer to your destination.

After a couple of hours, the end was nigh. We had checked in all our luggage and were trying to sort out the transfer of the electric wheelchair into the cargo hold. Due to the sorry state of disabled amenities in Nigeria, the electric wheelchair (which weighed over 100kg) had to be carried down some stairs by four beefy men and wheeled to the aircraft! How can one of the busiest international airport hubs not have any ramps leading to ground control and the cargo hold in 2022?

To my chagrin, various ground staff questioned how safe it was take the Whill (the brilliant moniker for the electric wheelchair) to the hold. By the time the seventh person came around, we were blue in the face. We sounded like a broken record – the chair was secure. That was the bottom line. Why couldn’t they understand that simple fact?! We had travelled to London, California, even France at least a dozen times over the course of five years with the Whill. With the same airline; British Airways. Yet, all our explanations, clarifications and elucidations fell on deaf ears. They did not understand how the electric chair worked so they allowed ignorance to take the lead; abandoning all rhyme, reason, logic and rational thought.

We argued, debated and ensued in many a word battle but to no avail. The nail in the coffin came in the form of one Captain Ian Robertson. I never met the man but if I had a list of not- so-nice people in my back pocket, he would be number one on that list. Without any regard for my safety, wellbeing, comfort level, convenience levels; he lay down the gauntlet, dug his heels in the sand and passed a harsh ruling – the Whill would be no longer welcome on this British Airways flight.

To say I was gutted, would be the understatement of the century. Using my arms to wheel myself in the neon orange manual wheelchair on the streets of London would be extremely challenging. Tiredness and muscle ache would set in. Stiffness and back aches would be constant companions. Captain Robertson’s lack of empathy forged an unsympathetic, compassionless perspective. As I left the BA lounge, I put the ground staff on notice and I vowed to publish a tell-all blog post about their airline’s uncaring approach to disabled- related affairs.

The lack of humanity astounded me. The world needed to read my story. Fast forward to a week later, pre-op assessments, COVID-19 tests and hospital registrations were all done. My spinal cord injury specialist, a vascular surgeon, an anesthetist and scrub nurses performed a two and half hour miracle as I slept deeply. The first thing I noticed, when my eyelids sluggishly opened, was the multiple number of cannulas sticking out of numerous veins in my arms. Do not get me wrong, I consider needles a necessary discomfort one has to endure from time to time but cannulas are definitely not my idea of a good time. The vascular surgeon strolled towards me and halted at the foot of my bed. He said with a cheeky chuckle, “You had a very boring surgery,” which was sweet music to my ears.

Weeding through the subtext, he just meant that no vessels were nicked so he did not have to step in and save my bacon. Nine sunrises and sunsets came and went. I was counting down the seconds till I could check out of the private ward in an NHS hospital. It is certainly not new information that entire glocal healthcare systems are experiencing a staffing shortage, due to the alarming death toll caused by the different coronavirus variants. Deep in the throes of the pandemic, no one was exempt from the suffering, the heartache, the ill health, the drained bank accounts, the respiratory systems ravaged by the virus strains. Factoring all these variables into an equation and you get hospital and clinical staff; the heroic first responders, changing jobs and fleeing towards safer options. At least, those that did not lose their lives after a stint in the government-mandated COVID wards. All this verbal diarrhoea is my long-winded way of saying that the NHS mentality in the private patient unit runs deep.

Every time a nurse or healthcare assistant (HCA) left my hospital room, it looked like a hurricane had come through. Sometimes, I would ring the emergency bell whilst I was in the shower chair and thirty-minutes later, no one had come to my aid. Despite paying private-care prices, the treatment I experienced was NHS second-tier all the way, mostly due to the less-than-ideal pedigree of the dwindling, middling staff. Another ruinous, catastrophic side effect of the pandemic.

Without the risk of sounding completely clueless, when I initially started writing this post, it was heading in a totally different direction. It had an entirely different tone and style but I quickly realised as my fingers fluttered across the keys of my QWERTY board, that I had barely scratched the surface. Delving into some of the issues that plague our community has been both illuminating and therapeutic. We got to peek behind the curtain and see just how intricate and convoluted things really are. As I desperately search for the words to wrap this piece up in a little bow, I implore you to keep an open mind when reading about disability-related matters and be delicate when questioning people about their disabled-life stories. Not everyone would want to discuss matters related to their origin tale. Their pain, their anguish, their anything really, should not be taken lightly. At the beginning of this article, I spoke about a diagnosis that stopped me dead in my tracks. Recovery has been quite challenging at times, forcing me to take stock of what is salient and paramount. I do promise one thing though; I promise to take you along with me on my journey towards total healing and restoration; whatever that may look like.

Online Sources
*https://theconversation.com/living-with-a-disability-is-very-expensive-even-with-government-
assistance-157283
*https://www.christopherreeve.org/living-with-paralysis/costs-and-insurance/costs-of-living-with-spinal-cord-injury