Table of Contents
Welcome to the Year of the Tiger
I’ve become suddenly disabled, and it’s been a rollercoaster ride the past 4 weeks, in every which way possible. Mentally, physically, emotionally, even spiritually. My identity, ability, desirability and physicality have all been called into question.
The chances of a bilateral patellar tendon rupture is rare. A spontaneous event is even rarer. Whilst it is more common in people with Lupus (SLE) and who are on steroid therapy, the chances of it ever happening is still super rare.
Those of you who have known me for decades know that I somehow drew the short end of all the health sticks, though. A life-changing health-related incident happens every couple of years. Ones that take an entire year to recover from, with remnant scars and permanent alterations made to mind and body.
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How Much Pain & Grief Can a Person Take?
The answer is again and again, until death do us part. After a while, you start to question if life is mercy or sadism. ‘Life purpose’ and ‘there is no choice’ – These phrases bear little meaning to me anymore. That is what four near-death encounters on top of other gruelling health ordeals do to you. Becoming suddenly disabled adds another to the ‘suck’ stack which I’m losing count of.
I try to not even contemplate my situation, and simply get through it within a shroud of emptiness. A void that is unperturbed by the quavers of false logic and everchanging emotion. An opaque, protective bubble that I need to step into again, in order to cross yet another rough passage of time. I have considered popping that bubble to hurl myself against that impenetrable storm many times. But I hug myself like a helpless child and wait it out as usual, one painful bob at a time. Who knows why.
My mood has been turbulent the past few weeks, and started out soaked in the rags of rage. Highly flammable, I set them alight without precaution or consideration. My words were like glass shards which I thrusted at anyone in close proximity. This contrasted against long bouts of depression and withdrawn silence, when nothing was happening during the day.
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Time has Never Been so Painful to Endure
I honestly can’t wait for 2023 to make its debut appearance already. 2022 is the year of the Tiger in the Chinese zodiac. I’m not quite superstitious although I do knock on wood at times…
I am also born in the year of the Tiger. There are five elements, of which mine is fire. The current year is water. I can’t help but wonder if that means my element is being drowned, washed away, snuffed out, neutralised.
Becoming suddenly disabled means that I’m currently bed bound and unable to walk. There are benevolent dictatorships; my room feels like a benevolent prison. My skin presses against my bedsheets all day, but do I have a right to complain, when I have access to Netflix, music, my computer and food delivery services?
My knees and legs need to remain flat at 180 degrees for six weeks. I am literally watching my leg muscles shrink and atrophy. But as the surgeon says, they need to be sacrificed to allow the tendons time to heal.
Mortal Flesh, Made Extra Mortal with Prednisone
Parts of my flesh from the surgical sites are still split open and taking much longer than average to heal, no thanks to my prednisone medication. Most people are able to remove their wound dressing by the 2nd week post surgery. But mine are still sealed up tight with Tagederm even after 4 weeks.
According to my surgeon, a skin infection is the most dangerous thing that can happen post surgery. Skin infections may require more surgeries, with the worst case scenario ending in amputation. So I hope my skin heals up soon. Of all the scars on my body, these are by far the biggest, most gruesome and visible as well.
Rare Diseases Mean Doing Things the Unconventional Way
We can’t do things the conventional way, and need to roll with the punches and play it all by ear. My surgeon is the head of the Orthopaedic Department, yet has only seen five cases like mine in his entire career. And even amongst those five cases, the patient profile is highly varied.
There is no rule book or guidelines to follow in my case. He told me straight up that he may or may not make the right decisions along my recovery journey. I appreciate that frankness, because it shows a certain humility and willingness to work together with the patient in order to achieve the best possible outcome. Our aim is to walk again, and not to walk like a robot at that.
My Obsession with the Recovery Timeline
I’ve been obsessed with the recovery timeline, even though it’s very individualistic and milestone based. I keep chopping up and calculating time in chunks in my head. With not much else for my brain to feed off of during the day, it tends to replay memories of failed romance and what is beyond the haze of my future.
“6 weeks until I can begin physiotherapy. 3 months to bending my knees to 90 degrees or more. 4.5 months to standing and sitting. 6 months to walking with a walking frame, before sitting back down on the wheelchair. 8 months to walking with a walking frame without a wheelchair. 10 months to walking short distances, sitting and resting, without any mobility aids. 12 months – a whole year – to regaining full walking capacity. Jogging and more vigorous exercises not included.”
I repeated that to myself every day, more so because I had no idea if that was even ‘correct’ to begin with. This timeline was based on that of a paramedic who had suffered the same injury. Thankfully, after consulting my surgeon, his hope is that I will be able to bend my knees, sit and stand again in 3 months. Weight bearing and bending are apparently two separate exercises.
Then from there it’s a slow process from becoming suddenly disabled, to walking and regaining full functionality again. Everything seems so near yet so far. In the grand scheme of things, 6 – 12 months does not sound so bad. But within the present moment itself, every minute is excruciatingly slow. The unpredictability of chronic illness gets to me most. So this loose timeline frustrates me to no end.
Allowing Myself the Space to be Numb & Process It All
I had actually wanted to write about the whole incident and more about the medical side of things first. But each time I tried to do so, I only felt an overwhelming strain of pressure. I am too depressed to do or even write about anything. Becoming suddenly disabled is a shock to the system, to put it gently.
And that’s perfectly fine and normal. I am currently trying to allow myself the space and time to simply stare at the wall. To let the emotions sieve through my brain, instead of doing things and trying to be ‘productive’. Which is impossible now anyway.
My blog stats are plunging. My day job is at a standstill. My podcast project has been cast aside. My memoir is on pause. Life feels like it’s been cancelled. It’s in disarray, on hold, stopped cold in its tracks. I have no mood to even do anything pleasurable or mindless such as reading or watching TV. And that’s okay.
Fighting Negative Thoughts Through Reframing
I try to reframe my thoughts. I tell myself that even if I’m doing nothing, I am doing everything I can to heal. Time is what it takes to heal, so no matter what I’m doing – even if it’s just sitting in bed staring into space – my body hasn’t stopped working to repair itself. I need to trust the process, and provide my body with nutrients and sleep; the supplies needed to rebuild.
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Other Year-Long Ordeals I’ve Had to Endure Because of Chronic Illness
The year I was on Tuberculosis treatment was markedly more torturous. I had to go down to the clinic to take the medications in front of the nurses every single day. The medications also interacted with my prednisone, so I had to double the dosage for the same efficacy.
Unfortunately, the TB medications triggered my heart rhythm disorder, so I ended up at the A&E every few days. Prednisone also drives me insane. That was the year I had to finally see a psychologist, and had to stop working in order to cope.
Then there was the year where I had a mitral valve prolapse and had to fundraise USD100,000 to get surgery done in the U.S., as no surgeon was keen to operate on me in Singapore due to the complexity of my chronic illnesses. That one was scary, as I could literally feel life slipping away from me. With each passing month, I’d have a little more trouble breathing. We fought hard against a clock for that one.
And that multiple DVT/PE episode when I was 17 was hands down the most painful experience I’ve had in my entire life. I remember thinking to myself, “If there was a hell, this is probably what it feels like”. Every knock against the bed railing, gentle kiss on the forehead or trail against my skin sent shockwaves of pain through my entire body. This went on for over a month, where I needed help to even take a sip of water through a straw.
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Blindsided by the Lack of Independence & Mobility
But this lack of mobility and deprivation of independence is on a whole new level. Not quite next level, but on a different plane altogether.
I hate it when my mother or helper stands there to watch or help me pee, poop or clean up. It isn’t so much that I’m embarrassed about being naked. After decades of hospital stays, countless surgeries and doctor appointments, you get used to the exposure of flesh and bone.
The Exhaustion of the Invasion of Privacy
It’s more the invasion of rather than lack of privacy. The feeling of helplessness, and that I can’t stop anyone from coming and going as they please, if they wanted to.
Being from an Asian culture and having grown up with nine siblings, privacy is probably a non-concept to my mother anyway. (Although she was very shy when we visited a spa park in Seoul many years ago!)
There were only two rooms in her house when she was growing up. All the boys slept on mattresses on the floor together in one room, and the girls in the other.
So I’ve had to teach her not to leave the door wide open and chat, or to arrange my clothing in the wardrobe, when I’m doing my business.
When Things Will Never be Done Right Because You Can’t Help Yourself
I was also very snappy and caustic when I first became suddenly disabled. Something that would have taken me 3 seconds previously now took someone else 5 minutes to help me do.
And it will never be ‘perfect’ because it’s not how I would have done it myself. This may seem like a non-issue, but an interference in habitual actions can be unsettling. I think I’ve worked out a system with my helper now however, so processes are speeding up a little.
Deprivation of My Daily Luxury – A Shower
I haven’t had a full body shower in 5 weeks, and really miss have one. Ever since my Deep Vein Thrombosis/Pulmonary Embolism episode where I couldn’t shower for 6 weeks straight, showers have become a daily luxury to me. I step into the shower every evening with unforgotten gratitude.
It’s quite tricky for now as I can’t bend my knees; stretching them to the full length takes up quite a bit more space. I can’t even fit into the disabled toilet in the hospital, so I’ve had to bring my own bedpan and pee in a spare room when I go for medical appointments.
We’re renovating the bathroom at home to make space for me to shower with my legs stretched out, so that’s something I’m looking forward to. I’ve also had to book private ambulances to shuttle me to and fro the hospital because of this.
For now I’ve been experimenting with rinse-free shower supplies. I’ve also learned how to manoeuvre my hair so that I can wash it with actual water and shampoo every now and then.
I also try to wash every inch of my body on my own in bed, with the exception of my feet and back which I can’t reach. Every little bit counts, I think. Every tiny twitch of the muscles, and the mental satisfaction when I’ve completed it all.
Unsolicited Advice… Here They Come Again!
People tell me to be strong. That I need to endure this. To be optimistic. That everything happens for a reason. As always, a health related incident brings all the unsolicited advisors to the yard. I’m not sure what makes them think that seeing a plight gives them the right to dish out advice that could be potentially harmful.
An aunt tells me that her daughter had an ACL injury and was back in school a week later. A stranger on social media tells me that they had both their kneecaps replaced, and was out of the hospital in 4 days. Paramedics talk about plastic kneecaps when I tell them it’s a patellar tendon injury. People try to pray for me over a voice recording, saying that my problem “isn’t difficult to solve at all”.
But what do any of them really know about my personality or my medical history at all? What do they really know about the quality of my tendons? (Which, according to my surgeon, is like pasta for lack of a better metaphor.) Do they even know what or where the patella tendon even is? Have any of them become suddenly disabled at some point in their life at least?
When People *Do* Get It Right in Terms of Showing Support
I received an email from a chronically ill friend online who said that she had hoped that I had suffered from something ‘less devastating’ like an ACL, but was dismayed that it was a bilateral patellar tendon rupture. It felt comforting to know that someone actually got it!
Or another friend who actually went to read up about the condition, so that she knows what the actual impact is. That also warmed my heart. Simply because she took the time to try and understand it. That knowledge can help to explain whatever I may be feeling or experiencing. That takes some effort to do, and generates empathy.
I’m not a big drinker, but I’ve felt like I need a good, stiff drink many times so far. And I’ve had a friend who has come over to hang out and do just that. I love it as it makes me feel a sense of normalcy, even if for only a few short hours.
Or my friends who fostered my dog, Talisker, for a month. He’s a bit of a rascal and a handful, and is a big deal to take on.
Rebooting My Motivation
As the weeks pass on by, I’ve been increasing my activity from bed itself. I am grateful for computers in this age, which allows me access to many other worlds despite not being able to walk.
I applied for a Linguistics degree at a local university, even though I probably can’t afford it. I’ve always wanted to study that, the application fee was only $10, and it helped to waste 5 hours of a day – so why not?
I’ve also signed up for online vocal classes, which is something I’ve been meaning to do for some time now. And I will also restart my French lessons. I’ll also try to get my podcast and memoir projects back on track, and hope to scrape some rust off and write some songs.
To be able to even scrape this post together was a big deal for me. To be able to edit and refine it is an important milestone for me. It means that the shock of becoming suddenly disabled is settling slowly, even though disappointment and frustration still linger like sore bullies.
Whatever it Takes to Survive
My brain’s current motto is ‘whatever it takes to survive’. Whenever I dip into a depressive or hopeless state, that sentence surfaces reactively. There are many external and internal factors that have the potential to affect my mood and situation. I need to take control of what I can, and find ways to deal with those I can’t.
I might need to trick my brain, which as you know, can be rather gullible. But what I do need now is discipline, patience and focus.
“I can’t get through this long and empty afternoon.”
“Whatever it takes to survive.” Even if that means watching Netflix without feeling guilty about it. Productivity or usefulness are often illusions, anyway.
“6 weeks seems like a long time away. A year seems impossible.”
“Whatever it takes to walk again.”
“I hate being disabled and needing to rely on others to help me use the toilet.”
“Whatever it takes to survive.”
Reframing Conversations in My Head
I also have conversations in my head where I try to reframe defeating statements. (Skip the points below if you don’t like TMI.):
Me: “I can’t get my brows threaded, can’t shave my legs or get waxed. I’m starting to look so primitive and shabby.”
Me to myself: “You know what? Yes, hair will grow and actually, I’m glad I’m not losing any hair. Yes, it’ll look unruly and you won’t like it. But hey, guess how long it takes to strip alll of that off? 30 minutes flat. The solution is easy once you can move about again.”
Me: “I hate being waited upon hand and foot for clean ups and toilet usage.”
Me to myself: “You know what? Only kings and queens had that privilege in the past. Their handmaidens scrubbed their backs in the bath and combed their hair. They had servants to take their chamber pot out. So just pretend you’re a queen or something.”
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Retreating into a Cave for 2022 & Biding My Time to Strike
It’s still going to be an arduous process even if I’m starting to shift my mindset a little. It feels a bit like I’ve had to wrap my coat around me, and retreat into a cave due to a sudden, unexpected storm.
I’m hoping that my skin heals up so that I can begin physiotherapy in 2 weeks. That’s when the hard work begins. Apparently the pain is going to be excruciating. But for the first time, I’m looking forward to it.
There will be depressive days again; it’s tough and I’m barely hanging on by a thread to get through. Feelings buzz in a frenzy and thoughts are polluted. Life is up in smoke and I can’t see anything in this haze.
But you know what? The only way to get out of a fire with smoke is down on your knees (pun so not funny and unintended). So I will crawl and crawl and crawl, until I come to a conclusion.
Whatever it takes to survive.
“Rising up straight to the top
Had the guts, got the glory
Went the distance, now I’m not going to stop
Just a man and his will to survive”
– Eye of the Tiger by Survivor
This article is part of an ongoing series about my Spontaneous Bilateral Patellar Tendon Rupture incident as a patient with Lupus, other chronic diseases and steroid therapy. Each part of the series will be updated and can be referenced below:
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*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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