I was recently invited back to my hometown as the International Women's Day dinner guest speaker. I was asked to share my journey through life with a spinal cord injury with the audience. This is my journey.
As a woman, the way we interpret the world and our feelings is very different from a man’s. That raw gut feeling we get when we know something is wrong. The internal feeling, that prevailing thought tells you that something isn’t right before any signs even appear. It’s one of the most powerful almost magical forces on earth.
Many years ago, I called my Mum one morning in tears, I had had a dream in which my aunty whom had not long ago passed away came to me. I was swimming in the beach when the water became too rough to keep my head above it, she took my hand and we walked along the shoreline. She explained to me that life was about to get really hard for me and that I would feel like I was drowning and unable to keep going. She assured me that she would be there for me and that if I listened, she would always lead me to where the water was calm.
My aunty had a very special bond with my Mum, I can’t think of a word strong enough to describe it. Upon hearing of my dream, my Mum was sad. Not for me and the dire warning encased in my dream, but that she had not been visited in a dream herself.
My Mum lives by intuition, decisions are made depending on what her gut is telling her to do. She very rarely uses her head, it’s all heart. If it doesn’t feel good, she’s the first one off the boat. So, when I was preparing to head off to Townsville for university she refused to let me make my own accommodation arrangements. She wanted me on campus, where I would be safe. She even found a college that was run by a well-known Mount Isa family and this put her mind at ease.
We disagree on a lot. Whenever I ask for her opinion, subconsciously I’m always going to do the opposite of what she tells me. I didn’t fight her on this one. I listened to her, I trusted her gut.
I had placed the memories of my dream far at the back of my mind, when a short time after I found myself sitting on a third-floor ledge at my college. I had been drinking and with all that liquid courage I was trying to determine the best way to jump to a tree in front of me. The boys had tried to do it a few nights before and I wanted to show them even though I was a girl, I could accomplish something they were too scared to attempt.
My inner voice was screaming, my gut desperately trying to get a message to my brain. But we weren’t listening. In an attempt to quiet my inner voice, I took a look at the distance from the ledge on the floor below me but that didn’t seem high enough to be exciting, so I went back up. I told my friends what I was trying to do, and they laughed, making bets with each other that I wouldn’t do it. This is the part of the story where I think – If only I was in Mount Isa… My girls here know me, they would have known I meant it and they would have stopped it. But I’m in Townsville, with friends I’ve only known for a few months.
My gut is still screaming. Im still not listening.
I put some extra clothes on at this point, to avoid bark rash. My last thought is that Im probably going to break a leg. There is an easy fix, just don’t fall.
I fell. I fell 10m to the grass below.
I straight away called out for help. I felt winded and I couldn’t breathe. I didn’t try to get up, so I didn’t know that I couldn’t. It wasn’t until the ambulance arrived that I realized things weren’t adding up. I felt like I was lying face up with a mouth full of dirt and my legs up in the air, as if someone was holding them there. The reality was I was face down in the dirt and no one was touching any part of me. I kept crying out for someone to please put my legs down, no one had the heart to tell me they were down.
Finally, I heard a quiet voice say “Kristee, they are down.” And that was the moment I knew. This was really bad. I didn’t say another word after that. The paramedics cut my jacket off and I heard the quiet gasps as the crowd that had gathered saw the football size bulge in the middle of my back. But I still remained silent as I slowly slipped into spinal and neurogenic shock.
My body lost the ability to activate my sympathetic nervous system wreaking havoc on my blood pressure and ability to breathe.
1200km away my Mum was hearing the news over the phone. There had been an accident. Her reaction to the news was similar to what I was going through. She couldn’t breathe, she was violently physically ill, all she could do was scream.
I was taken to the Townsville Hospital to be stabilized while I waited for a bed to become available at the Spinal Unit in Brisbane. I drifted in and out of consciousness to find different family members each time standing guard over me as I screamed and vomited. They held my hand while I cried and soothed me as I begged for relief from the fire raging over my body.
In a rare moment of calm consciousness, I picked up my phone and called Jay’s Real Estate. In tears I asked to speak to one of my friends and she answered the phone with trepidation, as if she knew what I was about to say. I didn’t know at the time, but my Mum had already informed my friends about what had happened. When she answered I quietly sobbed her name and just whispered “I’m so sorry, I’ve done something really bad.” I couldn’t say what or how bad, I still didn’t know the full extent of my injuries at that point. That was the last moment I remember from my time in Townsville.
The Royal Flying Doctors came for me. The pain of being loaded into the plane was beyond anything I have ever experienced. It was excruciating beyond words. When they told me that they needed to land in another town to pick up another patient, I cried and begged them not too. I asked them to leave that person behind because I couldn’t bear to endure that again. The pain was too much, and the pain relief rendered me unconscious until my arrival at the PA Hospital in Brisbane.
I woke up being wheeled on a bed from the helipad to the operating theatre. I could only see what was above me and it was late at night, so I panicked. I didn’t know where I was or what was happening. The paramedics kept reassuring me that I was in a hospital, but I couldn’t see anything that resembled a hospital within my line of sight. I was alone and scared, and I just wanted my Mum.
When I finally woke from surgery, she was there. And she was there every day for the next 6 months. If I woke up at 5am and she wasn’t there, I would call her in tears and then she was there. She showered me, she prepared my meals and she stayed until I fell asleep. She didn’t miss a minute. She too spent 6 months in hospital.
There was a moment. A moment where the doctor delivered the news to me. Where he told me, I had a severe dislocation of my T9 vertebrae that I had severed my spinal cord. I had a complete spinal cord injury and was now a paraplegic. I presume he answered my mother’s questions, telling her I would never walk again.
The moment was there. I just don’t remember it. Of all the horrific moments from the accident, that is the only one I’ve blocked out. I can’t find it anywhere.
I remember lying on a shower trolley while the nurses and my mum gave me my first shower. It was just silent tears while my mum stood there in scrubs picking all the sticks and dirt out of my hair and promised to make me feel better. That’s a Mum thing right there – they think anything can be fixed with a hot shower and clean hair.
There are a few more moments that define my time in hospital. A select few stories that I’ve allowed to remain in my memories.
My first time in a wheelchair. I was wearing bright pink pajamas as Mum wheeled me outside to get some fresh air. There’s another one – they think fresh air can fix anything as well. My head was spinning because my blood pressure was rapidly dropping as all the blood began pooling in my legs that no longer had the ability to circulate it back up to my heart. There were more tears. I just could not grasp how I had gone from being 18, having the freedom I had always wanted and my whole life ahead of me to this. I was still yet to grasp what ‘this’ even meant and how my world was about to change forever.
There were tears for the first few times I sat in a wheelchair. Nothing could make me feel any better about this situation and not for lack of trying. Mum had one more trick up her sleeve – she painted my toenails. She gets an A for effort.
There was another moment in my room with my mum and little sister, I’m not sure what sparked this particular one, but I broke. I actually felt my heart break into pieces. I was an 18-year-old girl, I was still someone’s baby, I’m still her baby now but I was just a kid with my whole life in front of me and I couldn’t see it anymore. Suddenly there was nothing there and I was broken. I couldn’t see a way that I would ever get to experience life the way that I deserved too, I couldn’t imagine anyone ever wanting to hire me, I couldn’t imagine anyone ever wanting to love me, I couldn’t imagine anyone ever thinking I was capable of being someone else’s Mum. It was all gone and there was just an empty nothing.
So again, I cried. I cried like I have never cried before. I have still never cried that way. It was unfiltered and unrestrained tears of heartbreak and desperation. My five-year-old sister stood beside me rubbing my back and soothing me with tissues and words of comfort. She was 5 years old and she was the only one that had the bravery to attempt to console me. I couldn’t stop, and it felt as though I would never be able to stop. Finally, Mum with panic written all over her face leaned in and said to me:
Kristee, you look really ugly when you cry like that.
And finally, I smiled, and I’m still smiling because I’ve not cried like that since. If I could smile, then maybe there could be light.
I returned to Mount Isa 8 months after my accident. During those 8 months, Mount Isa had not rested. My girls and my Mum’s girls formed the Kristee Lee Foundation and they fundraised their asses off. The community pulled together and raised enough money to be able to renovate my family home so that I could come home.
The day I arrived at the airport they were all there, a crowd of people to welcome me home. Like I was some sort of hero, I wasn’t, but I was so relieved to have so much support. The support didn’t stop there, once word got around that I was home the visitors started coming by. People I had never met before but who wanted to help, they air conditioned my house, they gave me money, they offered their services for free. You will never hear me complain about being from a small town because in that moment that small town became my family and I’m so incredibly thankful for them.
Mount Isa does a really good job celebrating their heroes and achievements, they grace our billboards, name our streets and influence our events. But something we do even better is support our community members in need. It’s not as flashy, it won’t draw crowds from interstate and you might not even see it in the paper, but it happens and it’s happening. And you’re bloody good at it.
After I settled in and things began returning to normal the clouds started gathering. Everyone returned to work and school and I spent my days alone at home waiting for the afternoon where I could have some human contact. I returned to university and began studying online but I was lonely and without purpose. Mum’s intuition picked up on this and without ever having a conversation about it, she came home one day and said, “Get dressed you have a job interview this afternoon.”
I interviewed for my first job with Nikki Row. She was looking for a casual administrator to help out at the ATODS office in Cammoweal Street. I had no experience, minimal confidence and very little independence. Thankfully, Nikki saw something in me and she took a chance, giving me the kick start to returning to life that I needed. With my first job came my first car and a car is an immeasurable tool of independence. Suddenly I didn’t feel trapped. I was contributing to my community and I had freedom within the safe confines of my hometown where seemingly everybody knew my name.
After a taste of freedom and independence, I wanted more. The areas of my life where I wasn’t able to exhibit my independence grew glaringly obvious. I hated sitting back and watching my friends flourish, I wanted to be happy for them, but I couldn’t while I felt like the same opportunities couldn’t be afforded to me. I felt myself getting bitter because I wanted more.
At this point I was still relying on Mum for so many aspects of my personal care and daily living. I needed her help morning and night. I knew it shouldn’t be this way and that if help was always so readily available to me I was going to accept it. She was making life too easy for me, just by loving me. So, I did something drastic.
I listened to my gut and I packed up and moved to Townsville to live alone. I took myself from a situation where I had morning and night carers that I relied on and I moved 900km away from them without a backup plan. Talk about sink or swim.
Thankfully, I swam.
I swam there for four years. I made new friends, connected with old ones and spent my time switching back and forth from studying and working depending on how I felt.
In case you haven’t realized by now, I’m an Aries. Determined and passionate yet impatient and impulsive. If I showed you my HECS debt and asked you to guess what degree I studied to amount to that cost, you would guess medicine. I like to tell people I’m a Jack of all trades, Master of none because I’ve got one year of almost every degree at JCU under my belt. I spent years searching for my passion, and nothing ever seemed right. I started each degree all guns blazing and by the end of 12 months had lost all enthusiasm.
Eventually I found myself back where I was four years ago, knowing that I deserved more but not sure how to get it.
Mum called me one day to tell me she was moving to Townsville so that she could be near me while my little sister completed high school. I told her I didn’t want to be here anymore and that it was time to go back to Brisbane, she didn’t even flinch. Together we trusted my gut, packed up my house and three dogs and drove to Brisbane, so I could have another chance at finding whatever it was that I kept looking for but could never find.
I took a position with Spinal Injuries Australia in their Marketing and Fundraising department, helping to manage the schools-based injury prevention program while also volunteering as a speaker. I travelled all around Queensland with this team, delivering safety messages to school students.
It was around this time that I started paying attention to a sign that wouldn’t give up.
During a family holiday to the US, while I was in Townsville, an unusual encounter directed us to hire a car and drive to a town we had never heard of to visit a centre we knew nothing about – Project Walk, a rehabilitation centre for spinal cord injuries. I had not thought much about it since that visit, but I couldn’t ignore the messages being sent my way any longer.
Three years after that first visit I finally listened and I planned my first trip there. With the financial help of my Mum and Dad, I once again trusted my gut and moved to San Diego for 3 months in 2012. I drove myself the 6 hours from the Las Vegas airport to get there, moved into a self-contained apartment and began training 3 hours a day, five days a week. I was a long way from the girl I was during my time in Mount Isa. Doing things I would never have even dreamed.
Project Walk changed my life. I met people with the most incredible mindsets and I absorbed every bit of their spirit that I could. Nothing seemed impossible around here and suddenly I found the feeling I had been looking for all this time. Understanding. To be understood is the most comforting feeling in the world.
I had spent so many years holding in so many feelings, never wanting to admit my fears or express my sadness. So many years holding it all in that I now felt like it was too late, they were too big to ever let out. There was just too much. I had built a wall and pretended that I was ok with the fact that I would never walk again, never being brave enough to admit that it was something that I wanted. I didn’t want to ever experience that feeling of heartbreak again. It felt safer to pretend that it wasn’t something I wanted in order to avoid being let down if it wasn’t possible.
To be surrounded by so many people who were brave enough to not accept this injury and the restrictions it placed on them – I had found it. That is what I had spent so many years looking for, understanding without even having to voice what it was I felt.
When I look back on all these moments, the decisions I made and the paths I followed, I know in my heart that I trusted my intuition every step of the way. Eventually it brought me to exactly where I needed to be.
After two trips to Project Walk it became clear to me that it was not financially sustainable to keep returning to the US to be in my happy place. In just 12 months my parents had spent $50,000 to make this possible for me, I had to find a way to make this possible for the long term. So I went out to create my own.
A trainer from Project Walk named Genny came into my life at this exact moment. She showed up in my room the day I returned from my second trip and asked me if she came back to Australia would I be interested in training with her. Without a doubt. So Genny returned home to the US, packed up her entire life into a storage shed, broke up with her long-term boyfriend, said goodbye to her family and moved to Brisbane.
She borrowed a car and showed up to my house three times a week to train me in my living room. I wasn’t the only person she was training, so many of my friends that I had met at Project Walk were from Australia, all of us over there in a foreign country for the same purpose. Now Genny was driving all over Brisbane to train us to ensure that we could access this level of therapy without having to leave the country. I knew this was my opportunity, so I went to my Mum and I asked her to trust me with her life savings because I was going to invest in Genny. I was going invest in her knowledge and experience but mainly I wanted to invest in her compassion. She has the biggest heart of anyone I have ever met. I finally worked up the courage to go to her and ask if I could be a part of creating something with her and in true Genny style she was overwhelmed, not by my offer of financial help but because I believed in her and what she was doing so much. It was a compliment of the highest honour.
We created Making Strides in October 2013. Myself, Genny and our business partner Jim started this little centre out of a small warehouse in Burleigh Heads. Jim has a strength and conditioning background and has spent most of his career working with elite athletes and sports teams. He came to us with no spinal cord injury experience, but enough charisma and empathy to make you feel as though he has been right beside you through all your troubled times and was determined to see you through to a better future.
Making Strides began taking clients in January 2014. We relocated to a bigger facility in April 2014. In just 3 months we had outgrown our facility. It may seem like poor planning, but it was a level of immediate success we could not have foreseen. Our word of mouth spread like wildfire and we had people from interstate showing up at our door asking for help from the very beginning. To this day we always feel like we are always two steps behind Making Strides, we don’t grow it, it grows itself and we are constantly trying to keep up.
In those first few months of operation Genny said to me in passing one day that her dream was to have an exoskeleton in the facility. An exoskeleton is a robotic suit developed to allow paraplegics to walk. So, I set about researching every exoskeleton in production and found one that was the furthest along to being commercially available. I emailed ReWalk Robotics to enquire about becoming a training centre for the ReWalk exoskeleton. The head of distribution for the Asia/Pacific, Yishai, wrote back, telling me they were not interested in establishing any training partners in Australia, they wanted a distributor. The ReWalk had received its CE mark and was about to receive FDA approval for personal sales in the USA and they wanted to enter the market in Australia, they would be in Melbourne in April for a technology conference and would be meeting with potential distribution companies then.
This was our opportunity, this was going to be the feather in our cap – a world first technology available for clients of Making Strides. This would establish us as a serious leader in spinal cord injury rehabilitation in Australia and the world. The only problem was I knew nothing about distribution. I’ve taken 8 units of a Business degree at this point, so if we’re going to make this happen – if we’re going to convince a multinational company listed on the New York stock exchange that we know how to distribute robotic exoskeletons worth $150,000 to Australians, we need to do something special.
Genny and I flew to Melbourne to hand deliver them our proposal at the conference. Genny had an immediate impact on them with her passion and desire to deliver this exoskeleton to Australia and I backed her up with my knowledge about the market and unique perspective as both producer and consumer. We achieved what we set out for – a place on the shortlist up against two of the largest disability equipment suppliers in Australia.
Yishai visited us 3 months later in July, the tour around our 100sqm training floor was brief, you can see the entire room from the entry. It’s not the size of Making Strides that impresses people – thankfully, it’s the atmosphere. Yishai spent one day at Making Strides and that was all the he needed to know that the big distributors he was courting didn’t have a fraction of the passion that we collectively had about our market and his product. I got the call late one night in September, the CEO had accepted Yishai’s advice and a contract was being sent that would establish Making Strides as the exclusive distributor of ReWalk Robotics – the first robotic exoskeleton available for both clinical and personal use in the world.
I never finished a degree and I had no experience in owning or managing a business, but I took all of the tools and experience I had gained after working under some of the best managers I could have hoped for and I applied them to everything I do. I use the lessons I’ve learned, the advice I’ve received and the guidance my intuition is giving me, and I move forward. In just 4 years, together we have created something incredible. Something that people travel from all over Australia and the world to be a part of.
We created a workplace culture that very clearly reflects our values and our staff and clients have responded to that in a way that I never thought possible. They’ve become family. We offer each other hope, understanding and friendship during times that are too dark for some of us to even see clearly. For all of us this is so much more than just a job and it is creating opportunities far bigger than we could have imagined.
At the beginning of our 5th year of operation we achieved a second goal we had set for ourselves in the very beginning. We have been announced as an industry partner for the Phase 2 clinical trials that Griffith University will be undertaking in 2020. Scientists will be transplanting nasal stem cells into 3D printed nerve bridges in the spinal cord of people affected by spinal cord injury to regenerate damaged nerves. Stem cell therapy will not be enough alone, those participating in the trials will need long term rehabilitation, the brain will need to be retrained to remember how to walk again and how to interpret sensory cues from below the level of injury. Making Strides will be responsible for delivering this rehabilitation and monitoring adherence. In anticipation for the beginning of the trials we are currently working on a mobile application that will enable us to deliver therapeutic home programs to clients post rehabilitation to ensure that patients from around Australia can participate long term.
Finally, just this month we have achieved the third of our first three big goals. We have just signed the lease on a brand-new facility with double our current floor space. We reached capacity at our current facility 12 months ago – both in terms of staff and clients. We are now looking forward to moving into a larger space to allow our staff of ten to continue expanding and our client base of 200 to undergo considerable growth with the upcoming introduction of the NDIS in South East QLD this July.
Every day I see how thankful our clients are to be able to have a place like Making Strides in their life and this is a somewhat uneasy thing for me to see. Because as much as our clients think that they need Making Strides in their life, I need them in mine so much more.
They give me purpose and most importantly understanding. I have finally found my calm water. The water promised to me all those years ago. I trusted my journey and listened to my inner voice and it took me to exactly where I needed to be. It’s taken a long time to get here, but now that I am here I wouldn’t change a thing. If you asked me if I could go back to that moment and step back inside off that ledge, knowing what I know now, I would say hell no. Never would I give up the people I have met and the experiences we have shared to go back to that moment. My disability feels like a small price to pay to have them in my life.
However, if you were to ask me what I miss most. It’s the little moments I miss, moments that prior to my injury went unnoticed.
I usually find these moments during a training session at Making Strides, where for a brief amount of time they make something that I thought was impossible – possible and I get an overwhelming feeling of sadness that I had forgotten what moments like that felt like.
At Making Strides I can kneel, stand, crawl, ride a spin bike and even walk. But those aren’t the moments. Our trainers invented a setup whereby I could stand without assistance from another person and without anything physically in front of me. At first this was just another day but with a new way of standing, until Alex walked up to me beaming, stood beside me and just held my hand in silence. I tried to hold back tears and he just smiled and squeezed my hand and said “Hey, we’ve never done this before, it’s nice”. It was more than nice, it was incredible. I’ve never missed standing up until that moment. I will continue missing it but not at the expense of all the incredible moments that having him in my life affords me.
I’m so lucky to get to work with both my partner and my best friend. When I have these moments, it’s always with them, so they’re always that little bit extra special. Another moment came while training with Genny, Alex was joking around beside us and due to a well-timed positional stretch – I laughed. I laughed out loud for a really long time and Genny looked at me confused as to why I was so hysterical. I’ve really missed that sound, I forgot how infectious and fun it was. With the loss of the use of my abs I also lost the ability to cough, sneeze, yell and laugh. I hadn’t heard that sound in 14 years, I’ve really missed it. There is a little piece of my identity in my laugh and somehow, I forgot all about her. But now I’ve remembered her, and I want her back, more than anything.
Now that I’m surrounded by strong people who have allowed me to be brave enough to say out loud that I want more. That is exactly what we will keep doing at Making Strides – asking for more. We will continue to advocate for those affected by SCI to receive adequate funding to be given the opportunity to find their ‘more’. We will continue to grow our partnerships with Australia’s leading researchers in the search for a cure for spinal cord injuries. And we will continue to be a place of hope.