“We met over social media, Instagram to be exact. We both had recently gone through a life-changing experience with our partners that changed the trajectory of our lives. Our boyfriends had sustained spinal cord injuries just two years apart and when we met, we saw a great missing piece in the hospital and rehabilitation systems: we, the partners (us), were not considered and truly had no support. It was an extremely difficult time for both of us; we felt isolated and were left to deal with everything – from packing up our homes, selling them, finding a new place to live, insurance, medical decisions, and supporting our men emotionally. Our emotions and mental health after our men were taken from us and admitted into rehabilitation sort of fell to the wayside. It was so great to see many programs and regimented recovery systems set up for our guys in rehabilitation, but we quickly realized there were no systems in place to provide the grievance for the partner. But let’s rewind.
Brooke’s story
Evan and I started out as friends while working at a restaurant in my home town. We began meeting up after work for movie nights, wine tastings and dinner at his house as friends, and I soon realized he was too much of a sweetheart not to begin something more. He was so kind, thoughtful, and caring; he was also a very interesting and compassionate human, and that excited me. After a couple of months of friendship, he told me over dinner he wanted to be with me the moment we first met, and that was that. We quickly started our lives together, moving in together shortly after we began dating to an apartment in the big city. At 24, Evan became the youngest Superintendent ever at the construction company he was working at, and I was due to start my dream job as an international Marketing Manager for a beauty company. We seemed to have our paths planned out, and were looking forward to our lives together. Everything was perfect…or so I thought. Sometimes, life takes you on twists you never thought would happen to you.
On May 28, 2014, I got the call no one ever wants to receive. His colleague called me telling me there had been an accident, Evan was in the hospital, and I should come right away. I was 1.5 hours away at the time, so my mom and I drove to the hospital not knowing what to expect or what had happened. When we finally got there, I learned right away Evan had been inspecting a delivery load in a truck when one of the loads weighing 3,500lbs fell on his head as it was improperly secured. It shattered his hard hat and he was left paralyzed on the floor immediately.
When I was allowed to see him, I found him wearing a neck brace surrounded by doctors and nurses, and his face was so swollen I could barely recognize him. He told me he was scared, but I shouldn’t worry as whatever happens it will be OK. He then told me he couldn’t feel his body, and he couldn’t move his legs. Shortly after, the doctor then came into the room and told me he had sustained a serious high level spinal cord injury, was paralyzed, and he would be confined to a wheelchair for the rest of his life. I did not even know what a spinal cord injury was, or what this meant for our future together, all I knew is it was scary, horrifying, and I was living in a nightmare. We were then told he would be placed into a coma because he was not strong enough to stay conscious until his surgery, and I watched as they intubated him. I was helpless.
They ended up doing the surgery the next morning, and he was in intensive care for 2 weeks, clinging to life. I was by his side for the next 5 months throughout his rehabilitation hospital stay as he tried his best to recover from his traumatic C4 spinal cord injury. He was so weak, so sick, and his mental state was suffering tremendously. I had no idea what the future would hold for us, but I knew I could never leave him. So, I decided to give up my new job, and focus on his (and my own) recovery and care full time.
The next year and a half was the most challenging of my life. We were trying to heal individually and as a couple, but also learning our new life and how it would look for us. I packed up our old apartment in the city and moved our stuff to a new accessible apartment that was more suitable for a wheelchair. It was far away from our friends, so we felt quite isolated. We were both feeling alone and scared about the future. I learned no matter how much I sacrificed myself and tried to make his life worth living, I couldn’t make it better for him. I needed resources of my own – support and love – from someone who actually understood my situation as a woman thrust into the position of caregiver and partner to someone who was severely disabled. No one understood, and it was very lonely.
We decided to make a change and finally moved back to the city to the area we had lived before his injury. We wanted to begin our lives again, and try and heal from the trauma this life changing injury brings on you. Slowly but surely, we began to see some light in our lives. We travelled to California for rehabilitation and during this time, Evan proposed to me with a ring he had designed himself in secret. We ended up getting married in Italy just two years after his injury, and travelled to Amsterdam, Rome, Florence, Barcelona, and The Cote D’Azur in France – all with 6 bags, equipment, and a power wheelchair. It was tough, but life changing, and we were grateful to be able to see the world regardless of our limitations.
When we returned home after our wedding and honeymoon, life was good, but I was still feeling lonely and isolated, and seeking a friend who knew what I was going through. Everyone in my life was trying to be helpful, but when you don’t know anyone who is going through what you are going through, it is hard to get advice and relief. There was nothing available online, no resources for women like me – caregivers and lovers to someone with this complicated injury.
Then one day, a couple of years after my husband’s accident, I stumbled upon Elena’s profile on Instagram. She was a young woman who too had a quadriplegic partner, and she was posting about life after spinal cord injury on her page. I messaged her, and we decided to meet up…
Elena’s Story
I met my boyfriend of now eight years, Dan, in 2012 through mutual friends. We spent the majority of our time outdoors: hiking the mountains, walking along the river with the family dog, Boomer the Australian Shepherd, going to outdoor concerts, kayaking, and cooking – so much cooking. Our passion for delicious food was the highlight of our weekend plans. We redid the backyard, planted seeds, and played Crib in the backyard as we watched the grass grow for an entire summer. We spent every Sunday dinner at Dan’s parents, who lives few blocks away. Our life was simple, in a good way.
In 2016, I surprised Dan with our first out-of-country trip together to Cuba, Cayo Santa María. We packed our bags on December 26th in anticipation to finally get away on holiday. We had talked about it for 3 years, but each time our bills, mortgage, and Dan’s work ethic took priority. Dan was a stone mason by trade and had worked for one and only one company for the entirety of 12 years, having missed only one day of work ever. I was working in the school system with inner city children who needed extra support by creating a sustainability program to teach children how to grow their own food. We were given a garden plot from a homeless shelter close by with the understanding the children and I would share half our produce with the shelter. The day I booked the trip I remember it was a cold, rainy day in December. He was exhausted. He showered and fell asleep on the couch. I remember booking it with so much excitement and waking him up to say the deal was done, and we needed to celebrate with a mai tai cocktail immediately.
We were ecstatic to get away! We had no idea that when we packed our bags to go on vacation and locked the door, this would be the last time Dan stepped foot into our home. We had an amazing time in Cuba, our resort and room was perfect, and we met 4 other couples who were also vacationing. Besides me getting the Norwalk Virus and Dan aiding me for 2 out of 7 days I spent in bed. We rang in the 2016 New Year and promised this was the year our lives were going to take off. We talked about getting married and having babies and both agreed this was THE year! This year was going to be unlike any other, we could just feel it.
On January 2nd, we spent a day at the beach with our newfound friends, dancing with the entertainers and just soaking up the sunrays. And right before we were set off to get ready for dinner, we decided to go for a quick dip in the swimming pool at the resort. We danced and watched the performers doing water dives and tricks, and as I set off to use the restroom, I watched Dan doing a diving competition with one of them. Not thinking anything of it, I continued. When I returned back to the pool, a large group of people were gathered around the pool, and as I looked around for Dan to ask what happened, I swung my body around to see it was him lying at the edge of the pool, chest down, arms and body on the edge and legs floating behind him. I screamed in horror, jumped into the pool and yelled for someone to call an ambulance.
I began to run my long nails down his arms and legs, asking him if he could feel it, and then if he could move them. We had been watching Spanish House episodes on repeat in our room for the past couple days and I think some one Dr. House’s advice stuck with me. I was assured the ambulance was coming, and I ran back to our room, stumbling and tripping over my feet along the path to get our passports and insurance and to change out of my swim suit. I also happened to grab our travel pillow and small travel blanket. When I returned, they were loading him into the metal bones of an ambulance – no neck brace, no proper stretcher – they lifted him into the back on a blanket. I held his neck from flopping back and forth with our travel pillow, covered him with the blanket, and cut an IV tube and placed one end into a Styrofoam cup with water as he was complaining of thirst. Off we went to the first medical clinic where he was analyzed and assessed.
It was at the hospital we learned Dan had broken his neck and nobody knew if he would be able to walk again. That moment will never escape me. To say I was in shock doesn’t even come close to how we both felt. He was awake, but unable to move anything but his wrists. He was terrified; tears were streaming down his face. I had a panic attack and had to collect myself quickly without showing him how terrified I was. The hospital was dirty and the staff all wore street clothes; they were very casual with their time and nobody seemed to be in a hurry. The Cuban people are the most beautiful and kind people, and that was something I continued to learn for the next week that we stayed in the hospital.
At first, I was apprehensive and unable to understand why the equipment was so outdated and everyone was so causal. The following day, I took a 3-hour taxi ride back to the resort because I needed my medication I have been taking for 10 years. I cried in the taxi until I fell asleep. I woke up to the taxi driver saying, ‘Lady, hey lady, we are here!’ I remember going to the room, taking a shower, screaming on the bed in all of Dan’s clothes and wishing so badly the last 24 hours could be erased from my memory. I watched all of the couples at the resort walking hand in hand and the raspberry Kool-Aid blue water and the white sandy beaches were just there, unable to be touched by me. It was over; the vacation had now turned into a nightmare.
As I hopped back into the taxi, I asked to stop at an ATM machine. The ride cost me $300 and I couldn’t wait to run back into the hospital, back to Dan. I prayed he was okay and someone stayed with him, but nobody did. I called his parents to break the devastating news, and the Embassy to report of our departure from the resort and arrival at the hospital. I begged the hospital to send all x-rays to Canada to our hospital to get us out safely and they simply could not. They didn’t have any internet connection or capabilities to send anything back to our country.
So, I demanded to be in every appointment, took photos and records of every x-ray, used Google translate to communicate with the hospital staff and with Dan. I used my keyboard on my cellphone and would get him to blink as I read out each letter to construct sentences and Google translate them for the staff. My phone bill was $7,500 that week. When I fell asleep from exhaustion, I slept in a chair for an entire week beside him and had him move his wrist to hit me in the head if he needed something. I was his nurse, his doctor, his advocate and I had to lie saying I was his wife in order to stay with him in the room. Cuba is not only a socialist, but heavily Catholic country. This was just what I had to do. I was a zombie on autopilot.
A few days in, Dan had his surgery in Cuba before Canada would send out a flight with the necessary medical team to bring us home. I spent my every waking moment on the phone tracking doctor’s down in the Cuban hospital and having them speak to necessary people in Canada to release us to come home. We were meant to stay for another month, at which I freaked out. I made a big enough deal that the Chief of the hospital came from his home to speak with me and I demanded we go home as soon as possible. Dan had an impossible time falling asleep, he was in so much discomfort, all we had was time. Time to wait for the operation, time to wait to go back home.
One night, after putting his earphones into his ears, I dialed his parents and they spoke. It broke my heart to hear the pain on both sides of the phone. He cut the conversation short and asked me to put music on for him and turn off the lights. I did, and as I was walking out of the room to do more phone calling, I heard him sing along to Cat Stephens Moonshadow. ‘And if I ever lose my legs, I won’t moan, and I won’t beg, Oh, if I ever lose my legs, Oh, if, I won’t have to walk no more, and would you still love me?’ I said, ‘Yes’ and turned around, closing the door just in time as my eyes flooded with tears.
We had a translator meanwhile named Yipse, and she was amazing! She helped me through so many medical decisions and explained everything to me. She shared her personal story of life in Cuba – the history, the struggles, and the pain she had experienced. She made $40 a month by being with us as our translator. The day the Canadian medical team came to get us, I will never forget. So much happiness to be able to finally go home, but so much sadness to leave behind the kind people we had met along our journey. I remember running with the medical staff to the ambulance and hopping in, Yipse holding my hand and saying, ‘Don’t ever forget me,’ tears just running down both our faces. It was a quick realization we were one step closer to boarding a flight that would soon bring us home onto Canadian soil and back to our families. For Yipse, this was her life; she wouldn’t be able to leave for so many reasons.
When we finally landed back home at the Vancouver airport where we were greeted by members of both our families. It was unbelievable and I think we both were out of emotions to spare. Dan was taken into the hospital and I stayed nearby on my own. My family member had a place they were not using where I was able to shower, sleep, and collect my thoughts. I remember thinking how it was strangely quiet in the apartment and I had never felt so alone. I would show up each day to ICU to visit Dan, and it wasn’t long until the doctors in Vancouver confirmed he was indeed a quadriplegic and his recovery was still unknown. Within months, he transferred to the Spine ward and onto G.F Strong, the rehabilitation center here in Vancouver, Canada. We asked the nurses within weeks to please just be honest with us and tell us how long he would be in the hospital and when we would be able to go home, to which one very helpful and amazing nurse replied, ‘Oh honey, it’s going to be at least a year.’
Right then and there we discussed putting the townhouse up for sale and never looking back. I remember driving home, taking down the photos we put up on the walls together, packing up his clothing, smelling them and sitting in the walk-in closet and just scream-crying. This was so unfair. This is not what we imagined when we said this year was going to be completely different. Dan’s family were amazing, they helped pack up and took charge in replacing the paint and flooring before it went up for sale. Luckily, it sold within five days of being on the market. But that’s one thing I felt sad for. The home Dan purchased at 21, was now someone else’s. The grass we grew and the love we put into our garden was someone else’s. Someone who had no idea why it’s even theirs now and no longer ours.
I spent the next four months next to Dan at rehabilitation everyday, learning as much as I possibly could about spinal cord injuries. Our life was not easy and it still isn’t always, but we have since managed to create a new routine. We both lost our home, careers, and life we once knew. But, we’ve rebuilt it as much as possible for the time being. Dan went back to university a year into his injury. We’ve used all of the money we made from the sale of the townhome on medical equipment, supplies, and living in a large city. I had to get a serving job, care for Dan, and commute two hours each way to university near our previous city. Life was a wild whirlwind. I didn’t sleep. I would have to leave work on multiple occasions, mid-shift, because Dan had an accident or needed help. It was a tough first year with many tears and many bottles of wine. It has now been 5 years since his accident and Dan is now in the Recreational Therapy program. He volunteers his time teaching other people with disabilities how to cook and use adapted cooking tools on his IG page ‘QuadChef.’ I recently had the help of Jamie Oliver to surprise Dan with a cooking lesson with Jamie Oliver’s head chef Jack Dean at his cookery school.
After the first year is when life began to make sense. I met Brooke Page, my partner in WAGS of SCI (Wives and Girlfriends of Spinal Cord Injury), a community we created together back in November of 2017. She was the wife and I was the girlfriend and what we were going through was spinal cord injury, so it only made sense we came up with the acronym, WAGS of SCI. WAGs was born from the realization we were the main support for our men from day 1 and there was zero support for us in the hospital or rehabilitation centers. We were mostly looked as and referred to as our partner’s helpers and nurses. There were no activities or education pieces for us, nobody could teach us what our lives were about to look like with our men. Everything we and the thousands of women we now support and know came from lived experience.
We began WAGS of SCI to provide women who are in our shoes with shared experiences and knowledge. We believe in celebrating life and love with our men. We decided to stay because our men are still ours. They are more than their wheelchairs; they are still the guys we fell in love with. In 3 short years of running WAGS of SCI, we now have 27 global Ambassadors, have been featured in the Washington Post, host the WAGS of SCI Podcast, a Private Facebook group, have given multiple presentations and speaking engagements, and fundraise all year round for other women who need financial relief or a simple date night with their partner. We believe in love and spreading awareness to anyone else who needs to see/hear this message. If your partner sustained an SCI, the most expensive injury someone can sustain, this is not the end. We are here for you to provide a multitude of resources we wish were available to us when our men were injured. We have recently partnered with an incredible SCI advocate in personal injury, Wishart Brain and Spine Law, who helps us push forward.
Covid-19 had brought with it many challenges for our caregivers and the disabilities community. We are a community that is unrecognized and unpaid, caring for our men with no financial help and resources. Many of the members in our community refuse to get married due to losing everything, and any little bit of benefits the injured individual gets from disability funding. We are staying home, keeping our partners safe and out of hospitals, cancelling our nursing care because we are afraid of contracting Covid-19 from having nursing staff coming into our homes, but we desperately need the help with feeding, showering, bowl and bladder care and other daily living tasks for our men. We are exhausted; many of us don’t have benefits from being an unpaid caregiver to care for ourselves. It’s very sad but a real issue in our community and one we are working so hard to bring more awareness to with our advocates and ambassadors. We hope we can help all women across the globe feel less isolated, unseen, and unheard. You matter, your voice matters, and we are here for you. Girl power!”
This story was submitted to Love What Matters by Elena Pauly and Brooke Page of WAGS of SCI. You can follow their journey on their Instagram (WAGS, Brooke and Evan, Elena, and Dan), Facebook, and their podcast. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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