In every respect I’d rather just forget about the last month of my life and move on. I won’t be able to do that for months yet. The thought of that is so distressing. The psychological impact has been immense. And yet. It’s almost magical how the mind, like the body, can just get better following an acute trauma. Eventually. It just does.
May 9th, 2017. One of those days I wish I could erase from my life entirely. There are a few of those. I’ve been reminded of all of them, one in particular, every day since the fall.
I decided to go over to Napier from Hastings because I wanted a change and I wanted to get some writing done. It had been a while since I’d properly spent any time out of Hastings, so a day trip was well overdue and, as usual, I was in a writing rut. Not so much writer’s block as just not feeling confident anything I had to say was worthy of committing to the page. That’s my natural state. The only way I can get over it is to make myself write something.
I’d been feeling like I needed to get away from Hastings, too. I’d like to say it’s not you, it’s me. Hastings is a hard sell to those who aren’t attached to the place for some reason beyond, well, Hastings … and logic. I’m at peace with living here. That’s as good as it’s going to get. Sometimes I need to escape to feel ok with coming back.
I had a nice day. I had set myself up in Napier Library, which I find is a good place for me to write. Forget picturesque. Too distracting. I enjoy writing in institutional places surrounded by books and admin. It reminds
me of being back at university and that was my actual happy place for years.
At the Napier library with my new journal. Everything is right with the world. I'm feeling not too bad. This was a good idea. pic.twitter.com/SIXnw9zVq8— Broken Starfish (@ChelleNZ) May 9, 2017
I don’t even remember what I wrote now, what I was writing. I don’t think I was finished the first draft. It was something for my website. Something about disability. I remember I was very happy that I’d made the effort to travel the hour on the bus and that I’d got out and about and that I’d written something that I imagined might be quite good.
It was nearing time for me to get a bus back to Hastings. Early evening. I didn’t want to catch the last bus. People with disabilities, we quite often need to allow room for error. Things go wrong. One can be having a very nice day and if you haven’t planned ahead, things can go a bit wrong or, well, something catastrophic might happen. Usually the former but you never can tell in advance.
I was a bit hungry. I don’t remember if I’d had a decent lunch but just around 4pm I was hungry enough that I didn’t want to wait to go home to eat. I’d have a snack.
There was a sushi place I hadn’t seen before. It had been a long while since I’d been out and about in Napier. I liked the look of it. The place was closing. They only had containers of sushi, pre-packed for the convenience of the people running the place and fair enough, too. They wanted to get home, just as I did.
They had nothing I wanted and the number of pieces in each container was too many. I told this to the person waiting patiently for me to select my sushi. I was ready to leave. She told me she had some salmon pieces out the back. How many did I want? Four. Parked up outside the sushi restaurant, I ate
all four pieces with gratitude. It was really good sushi. It was freshly made, I think. It had flavour that hadn’t yet been killed by a lengthy chilling. The rice was as soft as the salmon. It melted in my mouth and went down very well.
I guess I threw away the sushi container and I guess I turned to go. I really did need to catch the bus now. There was still one after this one, so I wasn’t in a rush but it would be good if I caught this bus.
I was wheeling at a reasonable pace, not fast but not dawdling. I felt happy about my day and it had ended well. I’d been productive, I’d got out of the house, I’d just eaten something a little bit special.
I didn’t feel much pain. Not consciously. The impact though was so much harder than anything I’ve experienced. It felt strange to have hit the ground that hard and not to be more than a little bit sore. I did feel very weird. I felt unwell. Not really nauseous. I was shaken. I didn’t feel right.
I wasn’t thrown forward as I usually am when I fall from my wheelchair. The front wheels of my wheelchair had caught on a step I hadn’t noticed. It was just the right height to hook the front wheels. Rather than being thrown forward and propelled out, I was driven into the ground with so much force that, while I didn’t feel any immediate pain, I let out a guttural, “Ahhhhhhh!” as first my right knee was thrust into the paved civic area immediately in front of the step, followed by my hands, which burned upon impact. Immediately, I felt a violent tingling throughout my stump, from my knee,
through to my hip and groin. It wasn’t registering as pain yet but it wasn’t right.
A guy who was painting, or doing construction, or cleaning windows, I’m not sure I knew at the time so I can't even remember if I’ve forgotten, he came over and asked if I was alright and asked what he could do. As is always the case when I fall, I just wanted to get back into my wheelchair as quickly as possible and find a place where I could assess the damage in private.
The guy held my wheelchair for me and seemed very concerned. I assured him that I’d find somewhere to get checked out. He asked if I knew the closest local medical centre. I said, “Yes, thank you”. I didn’t really think of it at the time but the guy’s face looked more worried than I might have expected. My guess is the blood had probably rushed from my face. I wouldn’t realise it until later but I was in shock and would remain in that state for hours. My plan remained unchanged. I’d catch the bus back to Hastings.
Fell very hard just now out of my wheelchair. My hands really hurt and they are very red but I landed on my palms, so they are ok.— Broken Starfish (@ChelleNZ) May 9, 2017
As a paraplegic, my first priority when I fall is to check the bits of me that are functional so I know I can look after myself until I can either check the rest of my body for injuries, or get checked out by someone else if it’s a more serious accident. The next thing on the checklist is to check everything below my waist. The time between being reassured that my hands weren’t seriously hurt and knowing that I could still rotate a hurt shoulder, and beginning to worry about my stump was not long. It felt like one thought followed the other.
AFTER THE FALL
I told the bus driver I’d like to get off at the hospital in Hastings. I’d got on the bus ok and a friend had offered, via Twitter, to meet me there. I hadn’t yet decided what to do but I figured I might as well get a ride to the hospital and I could sort out what to do from there.
Two things happened when I fell that went unnoticed by me at the time: I went into survival mode and my decision making skills were desperately impaired. The two things aren’t compatible, I know. I remember wanting to get ‘sorted’ and not really knowing what that might look like.
My knee felt really weird and my hands hurt but I couldn’t tell if there was anything that needed to be treated, medically. I thought I might be wasting my time and everyone else’s if I were to go to Accident & Emergency. During the hour long journey back to Hastings on the bus, my thoughts vacillated between not wanting to waste time at A&E and not wanting to waste money at the doctors’ clinic where I’m a registered patient. I started to
feel really very cold and I wanted to lie down in my own bed and go to sleep. The thought occurred to me that I could just do that.
When I finally got to a bathroom at the hospital and could check myself over, there wasn’t anything much to see. My knee did have some light bruising and it looked a bit weird. A bit out of shape, somehow. I tried to remember what my knee had looked like before. I was fairly certain it didn’t look right. It was hot to the touch. While I’d only ever experienced this with infections before, I knew it had to mean something.
My friend and I went through to A&E. I still wasn’t sure where I should be. The place looked busy and there was a long queue of patients to be triaged. I got into my friend’s car and went to see a doctor at the clinic where I am registered.
When the triage nurse had told the doctor on call what had happened, she told me she was getting ready to ask me why I didn't go straight to A&E, until she saw me. Then she understood completely. There didn’t appear to be anything too wrong. I was a bit sore and a lot shaken but she wasn’t convinced I’d seriously injured myself. I needed an x-ray of my knee anyway, just in case and x-ray was shut. After a short conversation where neither one of us were very confident on what ought to be done, reluctantly I said I had a feeling I should go back to A&E for an x-ray, rather than waiting until morning.
Back at A&E. It’s here that everything starts to get a bit fuzzy. The shock had properly set in and the strong tingling sensation I had felt from my hip to the end of my stump was slowly replaced with intolerable pain, which, days later, was finally replaced by a morphine haze. I don’t know when I was given some Panadol but it was hours after the accident. Even when I said I was in a lot of pain, a nurse brought up Sevredol as an option but I wasn’t given that, or anything that worked.
I think a lot of assumptions are made in the acute treatment of lower limb pain for people with paraplegia. Perhaps it’s a subconscious idea that we shouldn’t feel pain as much as everyone else in certain areas of our bodies, so we don’t need the same treatment as able bodied people. Maybe it’s that we are subjected to a lot more pain than most and so learn to hide it. I shouldn’t extrapolate beyond my experience. I hope it’s just me.
When I was x-rayed, at
first they didn’t see anything much. They took a limited view x-ray of my knee, so it’s lucky that they picked up that my knee joint, going up into my femur was broken. I had broken my leg and I was hurting.
I mentioned that I had some very bad bruising on the other leg that just wasn't going away. It covered a large area and was beginning to fade but it had been weeks. I thought while I was there, I should mention that. It was a good opportunity to get the other leg x-rayed, too. After all, aside from the old bruising and swelling, I’d landed on that leg as well.
The doctor grabbed my leg and with all his strength tried to shift the bones. I worried it might snap under his violent handling. I don’t know if this is usual practice in establishing if someone has a broken leg, but I’ll never forget it. He didn’t tell me what he was going to do and it made me extremely uncomfortable.
He said he didn’t believe the other leg was broken and my stump was wrapped up in a lot of padding and bandages. I was told to keep it immobilised this way. It was never going to work. It didn’t work. It fell off every time I used the bathroom, tried to get dressed, or transferred into or out of my wheelchair.
After another long wait, I saw an orthopaedic surgeon. By this time my friend had gone home and my father had joined me. It was getting late. I was told again that I had broken my femur. The surgeon didn’t see any need for surgery given I don’t walk. I was sent home with a script for codeine. I had mentioned that I’d developed an addiction to Tramadol, a synthetic opioid much like morphine, years ago. I didn’t want to take Tramadol again. I didn’t really want to mention it because I’d had previous experience of being denied painkillers because of that disclosure.
When I woke up the next morning, I was beside myself with pain. Two days later and my life had changed so completely I found it hard to relate to the person I had been two days previous. The pain was all consuming. I felt nauseous and I didn’t want to eat. My eyes felt wide and all I could think about was how I needed to find a way back to coping.
I went back to my clinic. When I saw the doctor who had seen me originally, she praised me for my instincts. She was genuinely surprised at how badly I had hurt myself. A different doctor was on ‘the queue’, which you join if you don’t have an appointment. When I explained to him what had happened and he saw my x-rays
and I told him about my previous addiction, he listened and was very kind. He gave me a script for two different kinds of morphine, a slow release capsule to take twice a day and Sevredol to take every two hours if I needed it. He also gave me Nurofen and Panadol and told me to take all of them at the recommended dosages. I wanted to give him the longest hug. I think I might have even said as much.
The same doctor also decided that my stump should be immobilised. An attempt was made at a plaster cast splint which was then bandaged up. That fell off within a couple of hours after I got home, so I went back and one of the nurses gave me a knee splint, which I’ve been using since. It would be good to have one that fits better. It’s very long at the end so juts out unnecessarily beyond my stump. Still, it’s better than re-bandaging my stump over padding every time it comes off and offers much more support and stability.
There was also the matter of the massive pain I had felt in my hip since the fall. I had mentioned it before but I guess because my hips didn’t make contact with the ground, it was thought to be tendon and ligament damage. An x-ray was ordered of my hip which looked ok and I was reassured again that it was tendon and ligament damage. Having seen another orthopaedic surgeon recently, following a CT scan, they aren't so sure. I may have fractured my hip. It doesn’t really matter. I’m in enough pain for it to be fractured and I don't think they would operate if it were broken, so I’m treating it like it is. I’m going
for more x-rays soon to see if they can get a better view of the hip.
I’m in much more pain than I was. I had to come off both of the morphine medications I was prescribed and weeks of immobility have left me sore all over my body. The side effects of the morphine were horrendous and I was becoming extremely ill. My state of mind was also suffering to the extent that I had become desperate within just a couple of the longest weeks. It all had a knock on effect. I developed the worst kidney infection I’ve had in my life. I needed a doctor, again, and I needed help.
Because I was born with spina bifida, I have always been under the Ministry of Health as a client. I get cleaning services provided each week, which is a huge help. I needed more, though. I was told to ring the Ministry of Health organisation that administrates such things. I was told by them that I need to ring ACC. I was told off for not accepting help when the accident first happened. It’s true, I had a phone call from ACC shortly after the accident and after a short conversation, I had decided I didn’t need extra help. The wheels can fall off quickly, though.
A few days prior to getting UTI symptoms, I was very unhappy and in pain but practically, I was coping. Days later, I was having thoughts too dark to express here. When I talked to Ministry of Health, I was told I shouldn’t feel like that just because of a kidney infection. Aside from the absurd notion that being so ill shouldn’t send one to a very dark place indeed, it wasn’t just the kidney infection. Everything had snowballed too quickly
for me to be able to adjust and I was a complete mess.
ACC were fantastic. They have been great at every turn. I know this is not always the case for people and it hasn’t always been the case for me but I can say that in this instance, they have not put a foot wrong. I now have extra help. It turns out all I needed was for someone to come in three times a week on top of my usual scheduled housecleaning and help me get the house straightened up. That’s all it took for me to feel like I could cope and like I might actually get through this in one piece. I’m so relieved. I can concentrate entirely on myself and my recovery now.
ACC are also reimbursing me for transport costs for hospital appointments, which is just as well. The mobility taxi van costs $40 for a 6km round trip to and from the hospital. I hardly ever catch taxis under normal circumstances but I can’t catch buses anymore. Since the fall, I’ve learnt of a policy that I wasn’t aware of before whereby drivers are no longer allowed to physically assist passengers who use wheelchairs on or off buses. If wheelchair users want to use a bus now and we might need assistance, we must bring someone with us who can help. I can sometimes wheel up and back down the ramp that folds out from the bus myself but I can never guarantee that the ramp will be at a gradient I can manage at either end of the journey, so I’ve had to stop using buses completely.
WHERE WAS I?
From the beginning, it was decided that I didn’t need surgery due to paraplegia. Three weeks following the fall, I saw
another orthopaedic surgeon and went armed with questions, one of which was, “Would I be able to crawl around and climb in and out of my wheelchair and off the floor onto chairs and couches?” These are all things I need to be able to do if I am to maintain the level of mobility I had before I fell. I’d had a lot of time to think and I realised that surgeons were focusing on the fact that I don’t ambulate and, to them, that meant I wouldn’t need surgery.
It’s too late now to consider surgery because my leg has been healing for too long. The last orthopaedic surgeon I saw has said that we need to wait now to see how the leg heals and if it hasn’t healed well, they’ll consider re-breaking the femur and I’ll have to start again. As it is, there is a bend in my femur where it is out of alignment. I’m really hoping that’s not going to matter.
Near the beginning of 2016, I was treated for PTSD by a psychologist. The treatment worked better than I had ever hoped and my life was getting better and better as I began to make small changes that over time made a huge difference to my quality of life. I was really proud of the work that I’d done and the dividends it was paying.
I’ve been through a lot in my life. Surgeries and medical procedures have gone badly wrong and I’ve been in life threatening situations too many times for my poor brain to cope with. Aside from nightmares and flashbacks and panic attacks and agoraphobia and anxiety and depression, all of which had become things I just had to cope with as well as I could, every medical procedure, no matter how minor or major, gave me an intense feeling of dread and terror. I’ve felt all of these symptoms creep back over the last few weeks. I’m quite hopeful that will be temporary but it’s a reminder of the precarious nature of physical and mental health and not to take either for granted.
I see as my main job now, while I’m healing, to look after my body and my mind as well as I can. Neither are in good shape but both will heal. Right now I’m not
having much fun but things are very slowly improving. I’m looking forward to not being in pain. I’m looking forward to the support I need going back to what it was. I’m looking forward to being able to get out and about without feeling tired and faint. I’m looking forward to getting back to the gym. I’m looking forward to getting my life back. Looking forward is keeping me going and giving me hope.
One day this will all be a memory. The human body is a wonderful thing.
Chelle, I really can't imagine what you are experiencing. Full on. Glad to hear ACC are doing their job well, at least.
Ak • Since May 2008 • 19745 posts Report
Chelle Hope, in reply to
Thanks, Sacha. Yeah, it does help a lot.
Hastings • Since May 2014 • 61 posts Report
Wow, what a mountain to climb but I sense you're getting to the other side having now written it down - perhaps you are able to think of it as a past chapter. All the best in your continued recovery, Chelle.
Wellington • Since Sep 2014 • 798 posts Report
Thank you. Still very much "in it" I'm afraid. I'm through the worst of it but still struggling and in pain. I'll get there eventually.
Hastings • Since May 2014 • 61 posts Report
What writing, Chelle. Thanks for sharing your pain & your life. x
Dunedin • Since Nov 2006 • 67 posts Report
All of my best wishes for that recovery and thank you for a wonderful telling of a horrendous episode. A retelling can be a kind of emotional cauterization, a bookend to a chain of thoughts.
I fully get the whole thing of not accepting help, even though you probably regretted it in hindsight. Sometimes there is only so much help you can accept, sometimes taking command of your own emotional recovery is compelling. You seem to have the wisdom to have seen when the threshold of not-coping had been crossed enough that getting help was the better course. It's important to realize that we can't take that kind of resilience for granted.
Auckland • Since Nov 2006 • 10657 posts Report
Chelle Hope, in reply to
No, I have absolutely no regrets about not accepting more help at the time. I didn't need it until I got sick. Then that extra pressure on my time and energy got too much, which is when I asked for help. Getting extra help with housework has meant I can use my energy and time to look after myself properly.
I want to make clear too, that help is in the form of housework. I'll seek psychological help if I need it but at this stage I don't. I wasn't sure if that was clear, going by your comment.
We shouldn't have to take help we don't need at the time it's offered in anticipation of a future acute event. Systems need to be more responsive and flexible to changing needs.
Hastings • Since May 2014 • 61 posts Report
BenWilson, in reply to
I got that the housework assistance was something that made a difference at the right time, although it could have just been unwanted and unwelcome at other times.
But yes, it wasn't clear to from the time frames whether the PTSD treatment you had was before or after the fall. I'm now guessing that was from a different trauma? I can only imagine the "intense feeling of dread and terror" you're dealing with. My guess is that it's not the kind of thing that gets easier?
Auckland • Since Nov 2006 • 10657 posts Report
Peter has had a few tumbles out of his wheelchair over the past 46 years... but it was the last one, a few months ago, that seems to have rattled him a bit. A combination of a new back on his chair (slightly, and almost imperceptibly more upright than before) and a too quick a turn after getting off the hoist in the Bus and it was all over. Sideways roll with his forehead hitting the crack in the concrete a fraction of a second after he extended his arm to break his fall. There is clearly a god assigned to such as Peter, as instead of broken bones and a head injury he came off lightly with a stunning black eye and lost facial skin. Even the 3cm diameter chunk he excised from his temple healed without much incident. It takes at least two, preferably three ABs to get himself back in his chair.
However...he got a fright. I got a fright. The offspring who happened to be home and was unable to assist when Peter's cry for help went out got a fright.
We've all had to learn to trust him again. Confidence lost, or even simply bruised, takes a while to recover.
Kia kaha, Chelle.
PS...a young lad with SB of my acquaintance was showing off to his schoolmates just how flexible his hip joints were not being fettered by any muscle tone. Threw one leg behind his head and snapped his neck of femur. They did operate.
PPS....Peter says to tell you that he broke his hip years and years ago and didn't know until routine X rays back in 1998. Despite being a tetraplegic he gets quite severe 'pain' in that joint. However...the Green Fairies make a balm...of which we have availed ourselves...and pain is controlled without the nasty drugs.
Waikato, or on the road • Since Apr 2014 • 1346 posts Report
Thanks Chelle. As someone who accompanies a wheelchair user around the place quite a lot, I have a real horror of those little nasties in the footpath or curb cut which can suddenly trap a wheel. But your story shows just how complex and unique each person is. Every body is different and every person problem solves in their own way. There is no one size fits all in disability. It makes me even more grumpy about the recent tweet by the minister who finds disability and disabled people boring.
Wgtn • Since Jun 2008 • 3229 posts Report