I am a paraplegic- this is my story

    November 27, 2016 is the day my life changed forever.  I was in a car accident but I don’t remember much about the accident.  I remember the doctor systematically going over my injuries, fractured C2, burst T12 incomplete spinal cord injury, broken rib and massive bumps on my head.  I was transferred to Health Science Center for surgery on November 29, 2016. My amazing surgeon pulled the shattered bones out of my spinal cord and I am now fused from the T10 to the L2.  I was in a neck brace for 3 ½ months. On December 2, 2016, I stood up for the first time and attempted to walk. That is where my story really begins.    C:\Users\Kellea\Pictures\December 2016\IMG_1604.JPG            C:\Users\Kellea\Pictures\January 2017\VBOC4047.jpg    The Physiotherapist at HSC brought me to the exercise room in a wheelchair.  I had to wait for my body to adjust to sitting up as I had been in bed for 5 days.  Once I was able to sit up, the task to stand was the next thing I had to figure out.  I took my first steps with the help of a walker but my brain had to figure out what was going on.   My walk was very slow and I didn’t realize I was lifting my left leg up high, because I couldn’t feel most of it.  The weirdest part is my brain couldn’t get the messages to my feet, telling them to walk. I forgot how to walk. I had to watch my foot and put my heel down first, saying out loud heel, toe, heel, toe which soon became my mantra.  My doctor wanted me in the Rehabilitation Unit as HSC however they were full and I was transferred to the Grace Hospital so that I could begin a physiotherapy routine as quickly as possible.
    Over the 2 weeks at the Grace Hospital, no one said “you have a spinal cord injury” to me.  I just figured I needed to regain strength in the lower half of my body. I honestly think I was still in shock.  I heard the doctors say that my recovery was going to be long, 18 months to 2 years. In my mind, I was going back to work in a few weeks, 3 months tops!  Things hit hard during a physio session when I found out I could not lift my leg with a very small weight on it. I had to leave the room and almost melted down in the washroom, but my fantastic physiotherapist, Donna, brought me back and asked me to move my leg without any weight attached.  I did it! Donna explained to me that the movement was still there, the message was getting through and I just had to build up strength. It was in that moment that I began to realize the seriousness of my situation.
And then I finally cried.  I remember it like it was yesterday.  An occupational therapist asked me to join a group of patients who were making cookies.  I made my way to the recreation room, pushing myself to walk with a walker and sat down, thinking its cookies…how hard is this going to be??  I started to stir the batter and realized that a simple task I wouldn’t have otherwise thought about, was difficult. The pain and weakness in my back was horrible and at that moment I knew that recovery was going to take a long time and I would have to take this day by day.  I burst into tears.
    I was at the Grace Hospital for 2 ½ weeks, pushing to leave so that I could be at my sons Christmas concert.  I started a routine of daily physio and working with the doctors to address my pain and learning how to not give up.  Sadly my team was only in place at the hospital. If I had been in HSC Rehab, a plan would have been in place prior to me ever leaving the hospital.  At the time we had no idea how much needed to be done to get me home. Having a systems meeting with everyone who was going to be involved in my care makes so much sense now but with Christmas quickly approaching, staff on holidays and my Manitoba Public Insurance file in transit to an out of town MPI office, I was on my own.  My husband had to get the house ready and I started to google physiotherapists in our area. I found an office close by, called and told them my situation and they set up an appointment. And then I was discharged. Nothing can prepare you for a feeling of complete and utter fear of being on your own, barely being able to move without wincing in pain, the unknown of recovery and being provided with 3 days of pain meds while everyone is saying goodbye, good luck and Merry Christmas.  I waited on a bench for Clint to pull the truck up. I remember every last kilometer of my ride home, the last set of tracks we had to go over and the bumpy gravel road. I didn’t want to leave my house ever again.
    I met my physiotherapist, Bryan, in December 2016, shortly before Christmas.  He reviewed all the paperwork from the hospital and I remember him asking me why I was there.  I thought it was such an unusual question but I told him about the accident and that I was told I would need physio.  So we made an appointment to start 3 days a week as soon as the holidays were over.
    I went home and started to google.  In most cases, I’d say stay off google.  But through all my searches I stumbled across an article, “Incomplete Spinal Cord Injuries:  The Early Days-Craig Hospital”. I started reading and then I froze. It outlined everything I was going through and I remember looking at Clint and asking “do I have a spinal cord injury?”  We just sat there, completely unsure but I knew immediately that I was dealing with way more than I ever thought.             https://craighospital.org/resources/incomplete-spinal-cord-injuries-the-early-days
Being home brought on new challenges.  Clint had a railing built in the garage and a railing put in place at the front door before I ever left the hospital.  He also knew I would not be able to sit in the living room without an adaptable chair. I required a power recliner to help stand me up or stretch out, whatever I needed.  Everything I used to do stopped abruptly. I could barely stand for more than a few minutes, I couldn’t cook, lift anything, do laundry, sweep or do anything that was just part of my regular every day.  But we figured it out, I had many amazing people bring meals and Clint became a caregiver. We mastered how to shower, change a neck brace without moving and got through the basics. My Occupational Therapist, Ashlyn, was assigned to my case through MPI, but was unable to get out to our home until January 2017.  The house needed to be adapted so that I could use the shower safely and be comfortable in my own home. Our main shower now has a handle, shower seat and support arms on the toilet. The tub has 2 handles for helping me in and out, but I couldn’t start using the tub for almost 9 months until I had more strength.  
    Next challenge was how I was going to get to physio.  Driving was impossible as I was in a neck brace and even if my neck was not fractured, I didn’t have enough strength in my legs to press the gas and brake.  So, we found Handi-Transit through the RM of Springfield. They were amazing and set up my Monday, Wednesday, Friday pick up and drop off schedule. Honestly, from January to March 2017, Wally and Alana were my companions, making sure I was safely on and off the bus so that I could focus on physio.  On Monday, January 4th I got to physio.  I looked at Bryan and asked if I had a spinal cord injury.  He told me I did and was not sure if he should have told me or not at our first appointment because he didn’t want to upset me.  Now that my brain was able to fully process my injuries, I only had one thing to do. Fight like hell to regain control of my body.  
            C:\Users\Kellea\Pictures\iCloud Photos\Downloads\A818237F-5232-45C0-8AB7-1EE3BEEA853A.jpg    I spent 15 months in physio.  In April 2017 I began driving so I then started physio every day, 5 days a week.  To say these sessions were hard is an understatement. There were days it took everything in me just to get out of bed.  There were days I didn’t want to push my body because it hurt too much and then there were days that I was ready to go and work like crazy.  My physio highlights include finally walking 2 miles on the treadmill, regaining some balance, doing one modified burpee and using 8 pound weights.  The biggest change is that I regained enough strength and balance that I no longer use a walker! I do use a cane and have a leg brace as my left leg continues to be weak but I couldn’t be happier with the results.  I have stopped going to physio daily as there are no more significant gains. It’s hard to think of it that way, but I do have to keep active so that I don’t lose the strength and balance that I’ve worked so hard to regain.  
C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_0004.JPG                                     C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_0010.PNG
    Over the past 15 months, there have been so many other challenges that I’ve had to face and figure out, which is just part of my life now.  I connected with the Canadian Paraplegic Association which is one of the best resources I could have found. I was almost embarrassed to go to the appointment, feeling that since I was able to walk, I was in the wrong place.  The counselor there assured me that I was exactly where I should be and that whether I was walking or in a wheelchair, I am a Paraplegic. As hard as that was to hear, they provided me with a wealth of information. I was able to share literature with my family as even they don’t fully understand the things I deal with on a daily basis, but how could they?  It took me months to finally realize the enormity of my situation and through many ups and downs, I know that adjusting to a new life is hard, but something I have to do. I can choose to be positive or negative and I’ll tell you that finding a positive is the best thing to do, not the easiest all the time but the best.
    So, the issues….aside from what I’ve already talked about, there are many behind the scenes issues.  I don’t talk to a lot of people about these things but it’s important to talk about them here. I can walk.  I don’t use a wheelchair, unless I am somewhere that will require a lot of walking. In the essence of the word Paraplegia, there are many people who would disagree with me.  I have been asked “what are you complaining about, you can walk” or the best “you should be grateful”. As much as I can walk, it is a struggle. My body is fused from the T10-L2.  That means that my torso does not move therefore my hips and my shoulders move awkwardly, more than they should. I have had a cortisone shot in my hip because the pain has been horrible due to a new gait.  I found out the hard way that I will need a wheelchair when I travel. The walk through an airport is too much for me but I know that now and will prepare when I travel. My body will need to get used to moving differently and right now, it is a battle.  For 41 years, I moved the same way, now not so much. The more I walk, the more pain I have. It is a difficult balance to keep moving when it causes more pain, but moving is the most important thing I can do to maintain where I am at.
    Bladder and bowel:  As private of an issue that this is, it is a huge issue for me.  It’s the hidden part of my disability that takes a lot of time to work through.  The nerves around my bladder and bowel have been damaged so they work, but not as well.  I have been on many medications for constipation and if you take too many, then you’re stuck at home dealing with the outcome.  If you don’t take enough, than you have an entire other issue. Bottom line, bowel function will be one of the hardest things I will need to figure out.  It takes up a lot of time during the day, which doesn’t make some days any easier. My bladder is better than my bowel however there are times I cannot fully empty my bladder.  This has led to a lot of specialist appointments and I have been taught to self-catheterize when needed. As of right now, I am completing a daily log on catheterization and follow up with a nurse several times a week.  It has taken almost 2 years since the accident to get to this point. There are days that I don’t leave the house because I am afraid of needing to find a bathroom quickly or knowing that I can’t empty my bladder. It has been nothing short of stressful and I feel like the doctors might think I’m crazy.  But I have been reassured that I am doing everything I need to be and that I will get through this.
    Nerve Pain:  Due to the spinal cord injury, my nerves have been damaged below the T12, thus I suffer from nerve pain.  For the most part, during the day I can manage the pain. Once I am home from appointments and resting, the pain in my feet starts and moves up my legs.  The best way I can describe it is that my feet feel like they are freezing and then they start to burn. This radiates up my legs. I have tried medication for the pain, but the side effects from the medication were too much to handle.  I have started CBD oil and have been using it since May 2018. There are fewer side effects but at times I can still feel nerve pain, depending on the day. I see the Spinal Cord doctor every 6 months and my goal for October is to work on achieving better pain management.  
    Weather change: It’s not that I didn’t believe people when they said they could feel a weather change in their bones, I simply couldn’t relate.  But now I can! It’s amazing how the weather can affect our bodies. Over the past few weeks with the rain and lower temperatures, I am in physical pain from my neck, shoulders, through my back and down my legs.  It is like an ache that just never leaves. Once I get used to the change, my body adjusts but it takes time. I wouldn’t change living in a climate with four seasons but I could do without the extra pain.
    Weakness:  I am weaker all over my body, simply from not being able to exercise like I used to.  My lower half is very weak because of my injury and it has taken almost 2 years to regain the strength I have today.  I am not able to squat low to the floor, skip, jump or run. I don’t know if that will ever get better but I am able to do high squats and I work on plank and bridging to strengthen my core.  I have recently started back to the gym and it’s a slow process. My gym days now include a 20 minute walk at 2.0 mph and a 0 incline. It may not seem like much, but that’s all I can handle right now.  I have a goal of walking a 5km walk in June 2019 and I am going to make sure I get there!
Frustration and Patience:  I get frustrated very easily and I am learning not to be too hard on myself.  There are many things I used to be able to do, but can no longer do. The oddest example that sticks out is that I can no longer put up Christmas lights!  I can’t climb a ladder. Between the weakness and balance issues, some things are just too unsafe to do. But there are still many things that I can do and that is what I focus on.  My patience wears thin…especially by mid afternoon and evening. Depending on the day, how many appointments etc, I can be ready for bed by 8pm. I have referred to myself as a “useless piece of skin” because I am overwhelmed and have done nothing with my day, my weekend or longer.  And this leads me back to frustration because I used to be active, ran around like crazy to my kids sporting events, work and had a social life. MPI encouraged me to see a Psychologist. I kept telling myself I was fine, I could handle things and that I could use my family and friends as a sounding board when needed.  I was wrong. Seeing a Psychologist has helped me to adjust to all the changes in my life and to see how much I have to offer. I am still Kellea, my core belief system is still the same, but my physical self is different. I have lost the confidence to walk into a room, standing tall and proud. But I am working to find that girl again.  It’s just taking some time.
Stages of Grief and Loss:  I have been through every emotion possible over the past 2 years.  Before I knew exactly what I was dealing with, I was very positive and thought I’ve got this.  And then reality hit and crying became an everyday thing. Through counseling, I’ve learned that to fully heal emotionally, I need to work through the stages of grief, which include:
  • Denial

  • Anger

  • Bargaining

  • Depression

  • Acceptance

  • These stages are not linear and depending on the day, I can bounce back to anger, even though I have come to a place of acceptance.  I realized that trying to take my boys to the beach just isn’t possible right now. I found out I have no balance when trying to walk in the sand and between the walk to the beach, the chair I require and everything else the beach entails, we never made it.  I became incredibly angry thinking about the way life used to be. And that’s okay. I let myself be upset, found an alternative to the beach (our local pool) and have accepted that my life has changed and I need to adapt. I will miss wearing flip flops because my toes can’t keep them on anymore, but there are worse things to be upset about in life.  
    Pain and Exhaustion:  People often ask if I have any pain in my back.  I hurt every day. That’s the easiest answer. I hurt in my hip with every step I take.  My back aches from morning to night. If I stand too long my shoulders start to ache because my core is so weak.  My neck pain comes and goes and when it’s really bad I get to use a weight bag (best picture ever). The burst T12 is responsible for my abdominal muscles and once I have exhausted the muscles, they are done for the day.  Exhaustion is something I am not used to. I would just push through whatever I needed to prior to the accident. Now I can’t. Once my body is done for the day, it’s done. I’ve been told to use the “gas tank” analogy. As soon as my gas tank is empty, there is no refilling for the rest of the day.  And if I have a bad night with pain, then I start the next day with only half a tank of gas. So, I have to pick and choose what events I want to attend. If I don’t have the energy for something I don’t have a choice but to cancel. I make sure that I don’t book too many appointments in one day, however there are days I don’t have control over when a doctor can see me.   I take CBD oil 3 times a day, I use Aleve when needed and I have a heating pad at night. I try not to focus on the pain, I try not dwell on it and I try not to complain about it. Honestly, no one wants to hear about me being sore and tired. So, I push it aside, push on through my day and do the best I can with what I have.
    C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_1347.JPG               C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_0227.JPG
    Work:  I have been off work for 22 months.  I am so very lucky that MPI has been nothing short of amazing.  Eventually we will work together on a return to work plan, when my body is ready.  Sitting or standing for long periods is near to impossible so we’ll figure it out as we go.  I have missed out on many opportunities at work over the past 22 months. As much as people say they would love not to have to work, I would give anything to be able to work!!  I know that I gave 100% when I was at work and I am now dedicating that 100% to recovery. When I get back to work I will need to find a healthy balance that allows for both my work life and home life to be productive without wiping out all my energy.
    Invisible disability:  If you saw me sitting in my car, out for supper, or standing in a store, you may think there is absolutely nothing wrong with me.  But then the questions start…why do you need a handi-cap pass? Why aren’t you back at work? Why don’t you just get over it and move on?  These are questions I’ve been asked many times. I have heard people in my situation say it would be easier to be in wheel chair because then people would just get it.  I was shocked when I first heard that statement, but I totally get it. The pain, exhaustion, bowel/bladder issues, sometimes it’s just easier to say nothing. It’s hard.  People assume and even when I try to explain, they just don’t understand. Prior to my accident, I didn’t understand.
        Life after an injury/illness can be overwhelming, terrifying, upsetting, exciting and fabulous!  There is no right or wrong answer. I still attend a yearly gala event with a group of amazing ladies. Although I haven’t been able to dance the last 2 years, I’m hopeful that maybe one day I will be able to.  But I’m still there and can still share in the joy of the evening. I book a hotel room, take breaks when I need to and rejoin the group when I can. I have been blessed with having an amazing support system. My husband and my boys have been my reason for getting up certain days and pushing myself as much as I do!  They have been nothing short of amazing, helping with no complaints, listening when I’m down and always letting me know how much they love me. My family and friends have also been nothing short of amazing, offering help, listening to me complain, cry and laugh and love me for me. I am unable to do many things but being asked to join, whether I go or not, means the world to me.  Life after an injury or illness will change you, but your core being doesn’t change. It’s taken 18 months of therapy to say that but I truly believe it.
    C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_0085.JPG    C:\Users\Kellea\Pictures\iCloud Photos\Downloads\IMG_0031.JPG

    When I was asked to write this article, I thought sure, I’ll have it done in no time.  It’s taken me almost 2 weeks to get through this. It was harder than I thought it would be to relive the past 2 years, but it’s made me realize how far I’ve come.  It has also reminded me of how many people I had cheering me on and celebrating all the successes over the past 2 years. I have an entire team of people supporting me.  So here’s my chance to say thank you to:
  • My husband, my children and my family

  • My friends

  • All the people who brought meals, visited me and continue to check in

  • Staff at Health Science Center

  • Staff at the Grace Hospital

  • Dr. Barrington, best surgeon in the world

  • Dr. Casey, best spinal cord doctor ever!

  • Physiotherapists-Donna and Bryan

  • Psychologist-Jeff

  • Occupational Therapist-Ashlyn

  • MPI case manager-Liz

  • Chiropractor- Dr. Greg

  • Urologist- Dr. Maslow

  • The Canadian Paraplegic Association

  • Family Doctor- Dr. Lacerte

  • I am truly blessed to have all the people as part of my team, helping me navigate the unknown.
    Thank you for taking the time to read this.  If you have any questions, please don’t hesitate to ask.
    Kellea Small

    Thank you Kellea for taking the time and gathering an overwhelming strength to write your story and share it with us.  I hope many others can string inspiration and strength from you and develop a foundation of support throughout the paraplegic community and all other communities relating to your story.

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