This is extremely hard to write and it’s taken me almost 7months to physically and mentally get this out in words…

At the very end of 2016 my nightmare had become reality. I’ve been told no many times, but this time I nearly believed I had lost. I came back into the emergency room after my MRI scan and what I was told shook me to the core, but I understood the questions and I was very calm and mature…how one would say no to a simple answer, I was saying no to life or death.

My AVM haemorrhaged in my spinal cord at C1,C2 of my spine on the base of my brain. The doctors said I would be at high risk of losing my oxygen supply and permanently being on life support with a tube down my throat, or otherwise I would feel like I was passing out and than my heart was just going to stop. If I had a stroke or my heart stopped, if they resuscitated me it would cause a massive haomerrage where they wouldn’t be able to stop the bleeding and I could die. Where one would buckle I answered with my 12 year in the making answer that I never wanted to use. What would you like us to do Marissa if this happens?

The night before emergency I laid in bed and I felt as if my feet and legs weren’t moving. To my fear my left foot wasn’t moving, I hadn’t experienced that since hospital stay 12 more than a year ago. I got the light turned on and I got help to sit up on the end of the bed. I realised I lost mobility in my left leg from the knee down. I got help to stand up to walk to the bathroom. When I stood I couldn’t lift my left foot off the floor to take a step so I didn’t go to the bathroom and chose to lay back in bed and I tried to sleep it off. When I was woken in the morning I checked and I wiggled my toes and my feet and I had movement! I was relieved and I chose to go on with my day and do my rehab in the pool. From 6am till 3pm I wasn’t myself my body was weak and I didn’t feel like my body was right. When you live in chronic pain everyday you have ok days and bad days and you push through it, cause if you give up on your bad days you make it even worse and will struggle to see a good day again. I had to go to the pool otherwise I knew I was really going to physically struggle the whole day. I got to the pool and I listened to my gut thinking this was a bad day I chose not to use any resistance in the pool during my rehab training and I just walked all my laps and didn’t do my standard daily exercises. I felt a little funny and slightly worried about the night before. I got home from the pool, showered had my second brekky for the day and I needed to have a nap by 10am, because my body felt really exhausted. By 11:30am I drove to my sisters place and I felt my left leg get lazy when I was changing gears. I updated my sister, best girl friend and brother in law, I said I wasn’t going to drive and how I was feeling and what had happened since the night before. My friend and I took my niece to the shops and as time was passing I was losing control of my left leg and with every step I was dragging it along. When we got back to my sisters place it started getting worse. My whole body was extremely numb, I couldn’t lift my left foot off the floor at all and this was a test I didn’t want to fail. I had to take action, I called my specialists and mum and they noted everything I was saying. My nerves were heard through the phone, because I knew something was wrong.

I sat in my sisters living room with my twin sis, two of my best girlfriends, brother in law and my baby niece and nephew. We waited for the ambulance and as the minutes were going by I was staying extremely calm but before they got there I tried to stand and I could no longer use my whole left leg and foot at all.

I rode in the ambulance and I am talking really calm to the paramedic telling him every symptom I was feeling and what was going on. When your case is one in 25 million almost 95% of the time all the ambulance staff, nurses, and even doctors don’t even know what an AVM is, let alone what could happen within this short drive to the hospital.

I had my back and head sitting up with my legs laying flat. I was slowly losing control and my arms were drawn into my chest, my whole head, neck, spine, chest, arms and legs were numb. My feet were freezing cold even with my shoes and socks on. He took them off and my feet were ice cold and wet. My whole left leg was beginning to fade in colour, it was turning really pale compared to my right leg and I couldn’t move it in the slightest. Then suddenly my right leg alone had a massive seizure for a minute and I didn’t know what was going on. It stopped and then about 5secs later my left arm had a massive seizure for what felt like a minute and then stopped. And then my right leg had another massive seizure then stopped and started again. This happened about 10 times. After this I said to the paramedic that I felt like I was going to faint and how I hadn’t fainted before, but I feel like I’m just going to pass out. I was still extremely calm and talking through this, I knew I had to keep it together so it didn’t get worse I had to keep as much control as I had left. The paramedic spoke on the radio and called out a special code. When we got to the hospital I was rushed with a team of doctors and about 10 people in my face rushing me through and checking me and asking me questions. All I knew at this stage was I couldn’t move my hands, or arms, or legs, or neck. I was stuck, my whole body numb…paralysed. I was quadriplegic, my nightmare had come true.

I woke up every morning laying flat on the hospital bed. I couldn’t move my legs or feet, my arms or hands, my neck or back. I couldn’t roll to the side, lift myself up, I couldn’t lift all four limbs off the bed. I couldn’t touch my face, rub my eyes, itch my nose, feed myself, wash myself, go to the bathroom, brush my own hair, brush my teeth, use my phone, hold anything in my hands. When I woke up I couldn’t rub my eyes I had to yell out for the nurse so she could come and I would ask her to put eye drops in my eyes, so I could open my eyes clearly. I lost the freedom, to what makes you who you are. What I didn’t lose was my spirit. I was talking and I was thinking and with that I wasn’t going to give up!

I spent a week in the High Dependency Ward, with a nurse at the end of the bed and needles and tubes coming in and out of everywhere. My team of some of the best neurosurgeons, neurologists, spine specialists, pain management team, came to my bed in groups of 10, more than twice a day. I could only have 2 visitors at a time and the nights your all by yourself. My chest felt heavy like there were weights on top of me. My body was weak, exhausted. My breathing was slow I had to practice breathing exercises with a tube every hour to help open up my chest, in case the nerves from my neck started to prevent my oxygen supply. I had to be ready for a fight! I fought through the danger zone and the first 72hours, when everything could just turn off. Even when you’re prepared you’re never ready for that.

At the end of my first week in hospital they moved me down the hall to the spinal acute ward. They got me comfortable in my own room and they mentally prepared me for a very long stay. There are only 10 patients in the spinal acute ward and 20 patients in the spinal rehab ward and some patients are there 3-6months till even a year.

This was my thirteenth hospital stay, but this one was only the second time my AVM haemorrhaged and the first time I lost all movement and was quadriplegic.

I knew since my AVM was inoperable and radiation treatment in the US almost 10years ago didn’t work at shrinking the size of the AVM, I was always going to be at risk of having a massive bleed that could just kill you straight away, or having another stroke, or having seizures, or end up some what or totally disabled.

Ten days and nights I laid in bed, trying to move, trying to get the nerves to switch back on. I had so many of my closest family and friends come and visit every hour of the day, keeping my spirits high, massaging and lifting up my arms and legs, feeding me, moving the pillows to keep my feet from dropping, putting my ear phones in my ears and turning my night meditation on, itchy my nose and my eyebrow, and wiping my eyes and brushing my hair. I had my own Physio, OT as well as my new spine doctor added to my team of specialists and I knew it was going to be hard work if I was ever going to move and walk again.

I had nurses and doctors coming in and out all the time. My medication was increased now totaling more than 30 tablets a day. I was on steroids twice a day to help with any swelling and pressure in my spine and brain. I had to be on blood thinners three times a day, very well knowing my chances of having another bleed increases by 10% for up to 6months after you have a bleed. If this happened they wouldn’t be able to stop the bleeding and I could die. I was plugged in to an infusion called Lignocaine, which is a drip of chemicals that continuously goes into your body from your stomach every minute. The ml’s were slowly increased every day and I was on the infusion for 9 days. I was planning to do the Lignocaine infusion and Ketamine infusion as an outpatient in January/February 2017 to help reduce my chronic pain and nerve pain that was becoming unbearable, but since I was in hospital I decided to do the Lignocaine infusion to help reduce the effects from the bleed and hope that this would be the best chance in saving me. The infusion helps manage the pain, migraines, as well as reversing nerve damage, and I was praying it would help me move and walk.

I was given my own temporary chair that my family and friends would push so I could go outside over the weekend and than 3 days later I got my very own motor chair that my OT specially adjusted so I could gain some type of independence and operate myself.

In the spinal acute section in the hospital every night, at least every 2hrs a pair of guys come and their job is to lift you and tilt you to the side, check your skin, tilt you back. Their important job is to make sure you don’t get any pressure sores. I lost the movement to roll to the side and lift myself up, so when they tilted me to the side and rolled me the bleed had damaged nerves causing me to get severe vertigo. I physically felt like I was falling off a ship every time I was tilted to the left. My mind reacted like I was falling off the bed but my body was still, I had no reflex reactions. Even one afternoon I was in sitting in my motor chair outside in the sun and one of my best friends thought it would be funny if she throw something at me, thinking my body would react and my arms would go to catch it. But my arms stayed super glued, crossed over each other in my lap like a magnetic force attached over my chest. It was no surprise but it was a good laugh to try and lighten up the situation. At night the lifters would come to move me and I would get them to adjust pillows and put me so I was laying on the side and then later they’d tilt me to the opposite side, than 2hrs later reposition me back on my back, what ever made me most comfortable. You have to be in bed with only a hospital gown, no underwear or clothes, and the bed always needs to be checked so you’re not at risk of damaging your skin. Every 30-45mins I would need to get a nurse or the lifters to fix the position of my feet because they would drop and I would be in a massive amount of pain from the pressure, they would have to flex my feet back up and this would be incredibly painful. Some nurses and lifters would stay a little longer and we would talk because they knew I was struggling, getting no relief they would try to massage some pressure spots to ease the pain. I would keep many pillows under my arm pits, under my legs, under my feet, and I would continuously need to have them moved and repositioned to help assist in the insane pressure and nerve pain burning and throbbing, locking up in my feet, knees, arms, shoulders and neck. Imagine when your foot falls asleep and you need to shake it off to get it feeling normal again. Well I was dealing with this dead weight and pressure and pain in all four limbs and when your not able to move anything, you’re left trapped in your body in extreme uncomfortable pain making it almost impossible to get any sleep. I didn’t sleep for days, more than a week awake all day and night. I would have my ear phones put in my ears with my mediation ready to help me relax and breathe through the pain and stress.

At nights I cried, but I was thankful for the simple things, like a four wall room with a door and a window. A window I could look out and see the plants and the sky. When I would open my eyes in the morning I would stare at the ceiling and be grateful that I woke up that day. I would try to first lift my arms and legs off the bed and even though they wouldn’t budge… I would pray for the strength to keep trying and I would still smile cause I knew I was going to be ok.

I was stuck in my body, a body that lost its movement. Something I learnt recently was that life is movement. When movement of walking and moving all four limbs is lost it is hard to imagine life. But where one would see stillness I was fighting…I was trying to lift my arms and legs, wiggle my fingers and toes, bend my knees and elbows, I was trying to turn on the nerves and retrain them for I was not going to give up. I trained 3hours a day in Physio and OT plus in my room in bed and in my chair I would practice. I was secretly trying to activate every joint, every muscle, every nerve, every tissue, every fibre from my neck down to my toes. My nerves were burning and on fire. From the base of my brain, all down my spine, my hands, arms, legs and feet felt like hot lava when I was training and when I was resting. But at the same time my body was numb like rubber. There’s a magnetic force gluing my body together. If I try to pull my arms away theres a force resisting it.

When I laid in bed and looked to my right and saw my motor chair plugged into the wall charging it made me think how it took 4 people to lift me up in the air to get me onto a special chair, to then push me to the bathroom or shower and when it took 4 people to lift me up in the air to place me and position me into my motor chair to give me some type of freedom for the day. I used my fingers to lightly push the remote control handle to get the motor chair to move and when I drove down the hall to go to my Physio and OT sessions, I worked every last hope and strength inside me to never say no, never give up, never not push myself, no matter the unbearable pain I gave myself no excuses and not once did I show any weakness on my face. The other spinal patients, nurses, doctors, physio’s would always still see my smile no matter the situation.

The only human features I had was my voice that gave me the power to speak and with that I talked to inspire hope. My eyes and with them I saw my family and friends as if they could be moments of lasts. I still could feel touch and with every touch of a hand and kiss I felt the presence of the ones that loved me. I used my ears to listen to music, to powerful motivational speakers, people of wisdom, people that spoke of hope, sounds of Mother Nature to help me dream and wonder. Time was not wasted…when one doesn’t sleep, sometimes this is when greatness is achieved. To earn what is desired one must want it bad enough to work the hardest they can to achieve their dreams. My dream wasn’t to be a 26 year old girl stuck quadriplegic in her motor chair in need of full time care, never able to walk, swim, travel. When reality was caving in and days were adding up the realist in me mentally prepared for this very well being the change I wasn’t ready for but what had become a nightmares reality. Until all my hard work every second of every day slowly but surely gave me the biggest come back ever imagined.

Hospital 13 was beyond the worse experience of my life and with my year and a half rehab training I managed to turn the worst hospital experience into the quickest recovery of all time. Quadriplegic for 10 days I slowly regained upper body movement. I sat in my motor chair practicing lifting my knee up, I could see the muscle flex but my legs and feet wouldn’t lift. When I was in Physio they strapped my legs in the bike machine and the machine moves your legs for you. As I looked around the training room my heart dropped thinking I could still permanently be in a wheel chair. I just would of hoped that I would of had more time and more years before that happened. But I didn’t give up I didn’t sit in the sadness instead I trained harder. Then in my third week in hospital I fucken walked! A movement where we cried because it was true, our prayers were answered, my persistence and hard work payed off! I was free! I was living again! Really I felt reborn for my prayers were answered and because it was the real moment I felt life was too precious to lose, walking another day with people I love- I’m just not ready to stop fighting for that yet.