If you've just stumbled upon this post or clicked here via a different page, you might want to catch up on the back story of what happened (see here).
I’ve sat here staring at the blank page of this screen for a long time, struggling to find the words to write. Trying to figure out what I really want to say. And how to say it. How to share my journey without oversharing, going into too much detail, or putting too much of my very vulnerable self out there. I’ve read a lot of recovery stories and literature, and a lot of people tend to gloss over the first few months and ‘skip to the good part’ when they’ve recovered, gone through growth, and are on the other side. While I intensely want to be ‘there’ I also don’t want to forget what it was like to be in those first few weeks where I was living each moment 1 minute, 5 minutes, or 20 minutes at a time. Even though it was so incredibly difficult that even now I’m struggling to write about it.
I guess all journeys start somewhere. And this latest one starts when I arrived home from the hospital.
I was so ‘excited’ to leave the hospital and go home… up until we were 2km down the road and the drugs wore off. Then it was over an hour of just agony and trying everything I could to not start screaming. By the time we arrived home, I was near blind with the pain. But I still refused to be wheeled into the house. I got out of the car and walked, one infinitesimal step at a time, into our house, where I immediately looked for somewhere to sit down. Max ran around in circles looking for a straw so I could take some medication (a straw, a straw, my kingdom for a straw) while I desperately tried to breathe through clenched teeth. Finally, I whimpered out that a water bottle would do the trick, and within the minute one was thrust into my hands. I panicked and inhaled the medications, spilling water down my front as I did so. Then sat there with my eyes tightly closed, taking whimpered breaths with tears rolling down my face, willing the drugs to kick in.
All this while my kids watched on in horror of this creature that their dad had brought back from the hospital. Welcome home.
Max said that they (whoever they are) said that my pain and recovery would be more mental than physical. But it wasn’t at the time. I said to him that whoever said that had never known pain like this. The first week at home is a blurry part in my memory, probably tucked away in the “too hard” bin of the trauma. It was a lot dealing with the basics: buying re-usable straws so that I could drink, figuring out what foods I could eat (chewing with the neck brace on and limited movement was super tricky for a few weeks, so most foods had to be teaspoon-sized), how I was going to sleep (nightmare), and how to shower. The entire focus of our world became to keep me out of pain or to at least minimise the pain I was in. Turned out that wasn’t a feasible goal as it was all just so much to deal with, so it became more of a ‘don’t touch Tiff as she’ll cry’ kind of strategy for my family.
Turns out that the hospital hadn’t quite gotten my pain meds right before I left, and because Max is ‘not that kind of doctor’ we didn’t know what we could or couldn’t take or increase from the pages of information the hospital gave us. I spent time trying to stay distracted so that I just didn’t think about the pain, figuring that my mental toughness and years of ultra riding pain management strategies would get me through. Oh, how wrong I was. There was nothing that I could do to get out of this frightening amount of agony, so I spent a lot of time in bed in fear. The pain was so intense, and there were many moments that I just wanted to give up. I wanted it to be over. To just end it all.
Max slept on a mattress on the floor beside my bed for nights on end. I put him fully in charge of all my medication as I knew that I just could not be responsible for it at this point. It was difficult to see or visualise anything other than the pain, and I just couldn’t picture any future without this overwhelming agony. My family did the best they could during this time. My kids would come and sit near me just so we could spend time together. On bad days they would bring dinner into the bedroom so we could eat together. It was heartbreaking, and watching them go through this was awful. And then it got worse.
The day the nerve pain hit it nearly destroyed me. It was like someone had lit my back on fire and then jabbed it with electrodes (for anyone that’s had really intense hot foot when cycling it was like this, but in my back). I took two endones and laid down in bed, waiting for the pain to release. But it didn’t. It didn’t even touch the sides. After half an hour I looked up at Max, who was lying near me, and his eyes were full of sympathy. He knew the pain hadn’t eased. And I started crying. Body wracking sobs. And once I started, I couldn’t stop. It was the first time I had cried since coming home from the hospital and it all just came out. Side note: I do not recommend crying while stuck lying down in a neck brace. It was very messy. I then decided then and there that I did not want to take any more endone. There had to be another way to manage this pain, and that was not the road I wanted to take.
I knew that my brain was my most powerful ally (and also could be my worst enemy) so spent a lot of time googling different pain strategies, including pain meditation. I would spend hours in the middle of the night listening to meditations over and over again, and then again first thing in the morning, and throughout the day (these three were my favourites on repeat if you’re searching for help: 1, 2, 3). And I learned how to breathe even with the overwhelming pain.
That learning how to breathe again became a huge focus for me over the next few weeks as my body and brain fought each other and triggered my fight/flight reflex over and over again. Getting out of bed? Shooting pain and panic. Standing up and trying to move? Blinding pain and immense dizziness. Learning how to walk again? Screaming pain and overwhelming fatigue. But just lying in bed was not an option for me. Not only because it was also an intense source of pain, but I had a goal to get back to my former self. The physio at the hospital had given me one exercise to do: walk. She also mentioned that I should not focus on endurance walks, but on shorter sessions throughout the day. So that was my focus: learn how to walk again.
Facing the pain
The first walk I did was from one end of our house to the other. There were no stairs and plenty of walls/furniture to grab when I started feeling dizzy. It was 10 minutes long, and it wiped me out for the rest of the day. Never mind, I thought. I’ll try again tomorrow. The next day I did the same thing: 10 minutes of walking from one end of the house to the other, and back again. And the same thing happened: bed-ridden with exhaustion for the rest of the day. By day three I realised that my 10-minute long walk was the ‘endurance walk’ that my physio told me not to do. Ten minutes was now an endurance session. A far cry from my previous perspective on what endurance was. This injury required such a huge mental shift for me and just trying to do that was heartbreaking. But there was no other option than just to get through this. So I shifted to two 5-minute walks a day: one in the morning and one in the afternoon. The first week I walked for one hour. Total. The benchmark was set, and I would build up from here.
A week later I added in one stair each lap and pushed the time out to 6 or 7 minutes at a time. I then braved leaving the house for the first time and walked up and down our front deck. Then up and down the driveway, which was immensely more difficult because not only was it gravel, so triggered a bit of panic for a while (breathe, just breathe), but also because it has an incline. I was now doing ‘hill repeats’ on my driveway.
The pain didn’t care that I thought it should go away when I stopped walking either. The second I got out of bed it would increase, and just continually ramp up as walked. I had a particular trigger point in the back of my right shoulder that I used as my guide. It felt like someone was slowly winding a screw into my body, tighter and tighter and tighter until I felt like screaming. Listening to my body was very difficult, as it did NOT want to be doing anything, and I knew that the pain wouldn’t stop the second I got back into bed: it would linger for hours afterwards. The trick was to figure out how far I could push the time on my feet until that screw in my shoulder became unbearable. Some days I would get it right, and I’d manage to get back into bed before it became an ice pick. Other days I’d be halfway back up the stairs before it buckled me. The fear of the pain became almost as crippling as the pain itself, so it was a constant battle just to get out of bed each day and walk.
By January 15th (12 days after I got home) I left our property boundary and walked up and down our street for the first time. I was still walking less than 10 minutes at a time, but each day we were slowly building up. On January 19th I managed a car drive into Woodend to sit outside and have a coffee, which was a huge step as it got me back into public spaces. The anxiety was intense on the short car drive, but I knew if I didn’t start taking these steps then they would just build up in magnitude and become even more of a challenge.
It was this mentality that led me to head out to the crash site. Max had taken me for a few drives in the car so physically I knew I could take the 45-minute drive. Mentally it was a different story. But I had so many questions about what had happened, and my brain was just gnawing at it like a dog with a bone. I looked at the photos of my bike. I looked at the Strava file. I posted pics of my bike online and asked people to help me solve the mystery of how the heck I had done the damage to my bike, and the damage to my body. So many people reached out with theories (and some great conspiracy theories as well) and suggestions, but the one consistent thing that kept coming back was ‘we need to see the location.’
For whatever reason, I felt like I was stuck in this place in my healing until I could figure out what had happened. So Max drove me out to the accident site and we had a look around. Max grabbed some sticks and laid them out on the road in his closest approximation of where he remembered seeing my skid. I wandered around and looked at trees to see if any of them looked familiar. And eventually, we found ‘Tiff’s tree,’ noticeable from the bark missing from where my front tyre hit it, and my handlebars. As long as I stayed ‘clinically interested’ in what I was seeing I was able to separate ‘an accident’ from ‘my accident,’ which is how we took all the pics and videos up to this point. It was only minutes later until I looked up a bit higher on the tree and noticed a circular dent. Where my head had collided.
I needed to get back in the car at that point.
It took me a few days to remove enough of myself from the incident to put together an Instagram reel outlining what we thought had happened. And once I had done that, I packaged up my feelings and thoughts on the incident and put them away. I’ll probably have to deal with them at a later date, but it was enough that I could let it go for now.
Day to Day
It’s difficult to look back and try and explain how hard the simple day-to-day stuff was that you just don’t think about. How do you eat and drink when you can’t really open your mouth? The neck brace combined with the pain made it super tricky to chew as well. Friends reached out and wanted to drop off food to help us out, but I had so many limitations that it made it tough. I couldn’t get my mouth open wide so any food that couldn’t fit on a teaspoon was out. I had friends deliver doughnuts (the best!) but I had to get Max to cut them up into small pieces for me just so that I could eat them. Not the ideal way to scoff a doughnut that’s for sure. It was a real pain in the neck (pun intended) to do collar care – removing the old pads from the collar and putting new ones back on – so I was really conscious about not spilling any food on myself, which I did on a regular basis because I had nerve damage in my left hand which made gripping things onerous. To be honest, I found it really uncomfortable and depression was a real issue. Yes, I was (and still am) incredibly fortunate that I had Max, the kids, and a very solid support network of friends around me, many of whom would check in on a near-daily basis to offer messages of support. But still, the day-to-day stuff was very challenging, even more so when I was also battling the medication that was inside of me that kept me from the super-sharp end of the pain.
Gaining control… and withdrawal
One of the constant battles was to be drug-free (pain-medication-free). I don’t take a lot of medication and it’s pretty minimal even when I’ve been in a lot of pain when on my bike. So for me to be on what I started calling my ‘spreadsheet of medications’ wasn’t easy for me. Each time I’d talk to a friend that knew anything about pain meds and say what I was on, they’d make that ‘ooooh’ noise, and then say that I should try and get off them as soon as I could. Which, while useful advice, simply wasn’t feasible. And trust me, I tried.
But the side effects were pretty crap as well, so every day was a tradeoff. I could have reduced pain, but I would be really dizzy all the time, super tired, and not hungry at all. Another issue was one of the meds that I was on was a 12-hour slow-release, which meant that I had no control over the levels of medication I was taking during the day.
Yes, I have control issues. Are you only just getting that now?
Since I’d been home and seeing my GP we had slowly been reducing the amount of medication I was taking. Every couple of weeks we’d have a chat and assess where I was at. I also had little to no ‘brain power’ which I found incredibly frustrating as I often would forget what I wanted to talk about. I started making notes on my phone for what I wanted to discuss, so each time I would go in I’d have a list of things I wanted to discuss. One of the questions I had was about meds I could take for acute pain versus ongoing pain management. That pain I was facing each time I moved could get quite intense, and I wanted a plan that I could work with to help frame my daily activities. We came up with a plan to take me off the 12-hour slow-release medication and give me more flexibility during the day to increase the medication when I wasn’t feeling well, and decrease it when I was having a better day. Fantastic!
After two days of coming off the tapentadol, I had a terrible, horrible, no good, very bad day. The pain had felt bad during the start of the day, and it just kept increasing. By later in the afternoon/evening I was beside myself in agony. I couldn’t breathe. I hated everything. I lashed out at Max and said horrible things to him. Even so, Max stayed by my side that entire day as we both couldn’t trust me to be by myself. And while he sat with me while I crumpled into a ball and wept, he was googling whether or not I could go back on the pain medication (given what I’d already taken that day we didn’t want me to go into overdose). And after a bit, he came across a website that described a few of the symptoms I was going through as a withdrawal. In good news, he said, it should only be a couple more days and then you’ll feel better. So we survived two more days and it got better. Knowing that the pain was going to end helped me manage it for the next 48 hours. No one on the medical team had warned me that this was a possibility, and I wish that I had known as it may have helped prepare both of us for the nightmare of coming off that medication.
This was me on Day 4 of coming off tapentadol. I had read that when you smile, your brain releases tiny molecules called neuropeptides to help fight off stress. Then other neurotransmitters like dopamine, serotonin, and endorphins come into play too. So I was fake smiling for all I was worth, trying to convince my body that we were going to be okay.
On the bike
One could say that with all the pain I was in why on earth would I want to add more to what I was going through. But one of the ways I dealt with pain was to distract myself by doing things, so we set up the indoor trainer. No. Not the endurance bike on the super schmick trainer: Max set up my basket bike on the old kinetic trainer. I needed something, anything, that would make me feel connected to the ‘old me’ again because I felt so lost all the time. Who was I if I wasn’t cycling? And did I even want to get back on the bike again?
I couldn’t lean down and grab the handlebars just yet, so I sat, upright, arms folded across my chest, and pedalled. A good friend of mine, Mark, had said when he was coming back from an accident he posted a 1200m walk as it seemed like a logical first step back to a 1200k. So I rode 1200m on my basket bike on my first ride.
Yes, it was amazing. It was also terrifying, and totally destroyed me for the rest of the day and I didn’t get back on my bike for a week. The fear of re-visiting the pain of sitting back in my saddle was super intense, and knowing that it wouldn’t really ease off once I got off the bike made facing this exercise very daunting. But again, I knew the more I didn’t face these battles the bigger they would become. I needed to find another way of dealing with my fear of this pain.
Reframing the fear
One of the things I found so frightening through this experience was the fact I could not stop the pain. I’ve dealt with a lot of pain in my time as an athlete, and have pushed through things that other people have chosen not to. But reflecting on that pain, it was always something that I could stop if I wanted to. It was pain that I chose. When I had pushed beyond what I thought were my limits on PBP, I chose to do that. Yes, I paid the price for it later, but it was still my choice. And the therapy I went through afterwards reflected that choice – it was pain I had chosen to do to myself, so I needed to learn to forgive myself and accept I had done it to myself.
This was different. I did not choose this pain, and I could not make the decision to stop and let it ease. And that lack of control over when and how the pain struck me was (and still is) scary. I needed some way of reframing the pain I was in so that it was the pain that I chose, rather than the pain that was just happening to me.
So that became a new focus: differentiating my pain. If I went out for a walk and it hurt, it was something I chose to do. If I sat on my bike and pedalled and it made my back scream, it was my choice. Yes the aftermath of those choices still hurt incredibly bad. But the increase in my pain levels became my choice. And once I started getting my head around that… it still effing hurt. But day by day I worked on my attitude towards my pain, and day by day it changed and allowed me to push just that little bit further, and get my body ready to be worked on again.
Bringing the team back together
I have always had a ‘body team’ of people that I bring together to help keep my body functioning, and after PBP I added in a psychologist as well to help with my mind. I had been seeing Susie on and off for two years and had let her know a couple days after I got out of the hospital that I would need her help with this one as well. Trauma is a tricky thing, and even though I’d dealt with one form of it before I knew this one would be more difficult and involved, so was grateful that I already had a solid relationship with her built before this accident.
Dom, my osteopath, reached out to me within days of me coming home from the hospital. We knew he would be a big part of my rehab, but I wasn’t anywhere close to being physically (or mentally) strong enough (and not broken) to have him work on me yet. But that didn’t mean that he wasn’t working out a plan of ‘attack’ for when he could see me. I walked into his clinic in early February, and it was a huge step for my rehab. Dom also knew me very well (we’ve been working together for years) so he knew what I was capable of, what I’ve already gone through and where I wanted to get back to (for those keeping score Dom was my osteo when I came back maladjusted from PBP, and he got me back on the bike in 7 weeks to ride the next 1200).
A week later and I went to see a new physio, and Marc Di Paolo came highly recommended (I think a few favours were called in so I could go and see him as when I first tried calling he wasn’t taking on any new clients). It was a nerve-wracking time seeing someone new, especially in my fragile state, and even more so when I knew that this broken bird he saw was not me at all. I needed to be able to trust him, which was difficult, but I had to have faith that we would work through it all together. Though we did have to establish what I meant when I said I rode long distances. Turns out I’m his first ultra-endurance cyclist so he’s getting to learn new things too.
For the next few weeks, I saw Marc and Dom each week: Marc started me doing strength exercises to begin fixing my atrophied muscles. Dom released other areas of agony so that I wasn’t completely buckled all the time. My weekly hours of exercise nearly doubled in the first week as I had pain relief, movement, and more focused exercises to do. I was still in unrelenting pain all day every day, but I re-framed it as pain that I chose. And, hopefully, productive pain, even if it didn’t feel like it quite yet.
The next step in my progress was just around the corner, and something that I had been counting down to since the beginning of January: taking off the neck brace.
Release the hounds
To say getting my hard collar off was a huge moment would be an understatement. I finally got the phone call from The Alfred late in the afternoon saying that they had reviewed my x-rays and I was healed enough to remove the hard collar. Max had gone to pick our son up from school so wasn’t home when I got the all-clear and I didn’t want to remove it without him. Mostly because it had been as much his journey as it had been mine to get to this point. Also because if I fell over I wanted him to catch me. I wanted him to record this moment for me as well.
I just didn’t expect it to be quite so emotional.
I thought it would be this amazing triumphant walk, where I’d take the collar off, put it down, then walk towards the camera, grinning from ear to ear because I had done it. I hadn’t royally screwed anything up, my body had healed itself, and I was free. I had been through so much pain, so much trauma, and getting the collar off was, in my mind, the end of all that. It was the first step towards getting the ‘real me’ back again. Or so I thought.
I got a few steps away from the table where I put the collar down, felt the fresh air touch my neck, and I completely lost it. Max stopped filming as soon as I got to him and I just held onto him and cried for a very long time.
Unfortunately, it also wasn’t quite the ‘I’ve got rid of that effing collar and everything is well’ step that I was hoping it would be. I actually went off all my medication the next day, thinking that without the collar I wouldn’t have all the pain anymore.
Turns out it was like starting all over again. I had a soft collar that I could wear when I got too tired, so the first few walks I went on I carried it with me as a “just in case”. But all the rehab exercises, including being on the bike, now had access to my neck and its very tired, very weak, muscles. So things I had found ‘relatively okay’ the week before were now incredibly hard and painful. Again.
Deep breaths. I got through this once before, I can do this again. Both physio and osteo had access to my neck now, so it was let’s get down to business for both of them as they worked on my neck, shoulders, and back at least once a week. It made for some very difficult recovery days, especially as it wasn’t even close to being the ‘collar is off and everything is fine now’, but each time it felt like I was progressing. Even if there were many steps backwards during this time before I moved forwards again. We were slowly, piece by piece, starting to rebuild the machine.
Where we are at now
I can now see why a lot of recovery stories don’t write about the first three months. Because once you are in recovery the day-to-day stuff is pretty mundane. Most of my days followed a similar pattern: wake up, go for a walk, rest, do physio, rest, go for another walk, rest, go to bed. Deal with unrelenting pain all day long and make choices about how much more I was willing to bear. And repeat. No one really wants to see all my short walks, short rides, and physio exercises on Strava. No one wants to hear that I spent so many days in fear. That I was afraid of everything. That some days even just getting out of the house was incredibly difficult. It’s more exciting to see the montage, hear the exciting music, quickly skim through the hard bits, throw a few punches, and then show the hero that emerges at the end.
But I’m not at the end.
As the late Hans Rosling said “things can be both better and bad” and that’s where I’m at. Things are better. But still bad. It’s really hit me lately that I am, indeed, really very injured and recovery is going to take a lot more time. I had my 2-week post-neckbrace-removal appointment with my surgeon the other week and he said he’s very happy with how the x-rays of my neck looked. When I then mentioned a time frame to getting back on the bike outdoors again he paused. I had been anticipating getting back on the bike in the next month. He said no.
He tried to phrase it gently, but also firmly so that I would have no doubts: if I got back on the bike and had any sort of accident, the repercussions might be that we probably wouldn’t need to be thinking about how to rehab to get back on the bike ever again.
Not the easiest news to hear. Especially when I felt like I was deep in the grief stage of trauma at the time. Many tears were shed that week, and any friend who reached out to talk got to feel a part of what I was going through as I could not hold them back.
So I grieve, and I re-frame yet again: I’ve got three months of attacking this recovery hard and getting stronger. The fear is still there, and there are days when I have to dig very deep to face it because the pain is unrelenting and hard to deal with. There are days that I wish I could scream in frustration and agony (but it hurts too much to do that) and so many days when my face is still leaking. The exhaustion is still ongoing. It’s not just 3 months of bone healing and it’s fine. I still have a lot of other healing, including muscle, nerves, as well as physical trauma, to deal with. This is a much longer-term injury than I had originally guessed that it would be. Having the surgeon tell me it was 6 months until I could get back on the bike was one thing. But realising that some ‘easy’ things, such as getting in and out of a swimming pool, would completely overload my system and send me into disarray, was another sharp reminder that I am, in fact, not okay still. Still having to cancel evening plans with friends because I’ve simply run out of energy by 4pm is hard on me. But I cancel them because I’m looking long term and taking care of the bigger healing picture.
But we’re also celebrating the small wins, no matter what they are, because going forward and working through difficult times is what we do.
Well, that and using humour as a coping strategy. If you can’t laugh about removing staples with office supplies, being in a neck brace in the middle of an Australian summer, watching out for attack trees, “accidentally” throwing your neckbrace into a bush, or having your husband go through ear reconstruction surgery while everything else is going on… what can you laugh about?
I know every persons journey back from a serious spinal injury is different but your story really struck a cord with me and my ongoing recovery from a fractured neck and crushed spinal cord as a result of being hit by a taxi while riding. There were so many parts of your story that were so vivid it reminded me of lots of days which I had forgotten. Thank you for sharing your story and I know from your achievements that your strength and determination will get you through this. Cycling continues to be the reason I work at my ongoing recovery. Great writing. Thanks.
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Your stoic determination to recover from this horrific injury is admirable and I can certainly sympathise with you.
I was a little more fortunate than you in that I only had the T6 spinal fracture and no neck injury.
A brief timeline of progress.
December 2019 accident. 2 months in back brace.
March 2020 On Xray, discharged from St.Vincents Neuro-surgery clinic. Ongoing physiotherapy.
August 2020 CT scan due to persistant pain. This revealed fracture had not healed. Referred to Orthopaedic surgeon.
October 2020 spinal fusion T4 to T8. One week in hospital.
January 2021 (2 months) gradually commenced stationary trainer with bars turned up. Also started pool sessions.
May 2021 (7 months) commenced short MTB rides on bike path.
July 2021 (9 months) graduated to road bike on bike paths.
Currently I’ve progressed to riding 50K with a group 3 times a week, mostly on bike paths. Although this is not without some degree of pain, I’m just so happy to be back out there doing it. My wife not so sure!
My degree of pain varies quite a bit. Any activity using my arms stirs it up, simple things like easy gardening, washing car, vacuuming, even using knife & fork with a bit of force to cut “toughish” meat. Harder physical work like chopping wood or digging a hole would be out of the question.
I found that nerve pain and muscle relaxant medication did not seem to help my condition. Depending on what the pain level is like, I sometimes take Panadol Osteo going to bed.
So that’s my story so far, still continuing to see the physio and ever thankful that the injury is not worse than what it could have been.
So hang in there Tiff, with your determination you will be back on the bike. All the very best and thanks for sharing your feelings and progress.
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What a great read although the subject matter is tough – your ability to describe your journey- good and painful hooks one in.
The journey can be tough – being flexible with goals, goals that change daily, goals that are not by choice – that lack of control!
That reframing- it sucks!
Not welcome but essential – but who wants to do things or change that is not of your choice?
Not me however almost 2 years on I’m still reframing. It’s like losing a part of your identity.
Ok so I never rode 1200kms – 950 was my longest, I’m now on an EBike – really thought I’d never stoop this low, am finally conceding that nursing is just too physically hard to keep pushing through! I loved being a nurse – a career I worked so hard for. So many changes!
Perhaps we are always in a stage of reframing our lives – just some more serious than others.
Im not sure if it gets easier. I don’t have answers but I can say it’s been fun finding new interests and letting go.
I’ve set myself a goal to hike the Australian Camino May 2023.
Approx 20km a day from Western Vic to Penola SA. With 6 other ladies – we have 3 more spots on a private group.
An adventure company run it – they carry packs, gear, food and accommodation all supplied.
It’s such a long way off but a goal I need – you’re welcome to check it out. Send me your email if you want to see details.
Cheers anne rob
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