In Your Darkest Moment, Look At The Bigger Picture — And Plan For A Miracle
What would you do if you woke up tomorrow and couldn’t move? What would you do if life was no longer yours? How would you respond to people if you were unable to breathe for yourself, unable to talk and although you were being told to “blink one for yes and two for no”, you had no spatial awareness or feeling?
I won’t sugar coat it. It’s a living hell. I know, because I have been there. In 2008, I contracted an autoimmune disorder known as Guillain Barre Syndrome (GBS) although my diagnosis was changed to CIDP (the chronic form) after my symptoms didn’t seem to get better. “They aren’t getting worse,” I remember the doctor saying which in hindsight is hilarious considering I was already in ICU, on life support, tubes in all places and unable to move.
I had been walking the day before my ICU admission although I was very tired. I was coughing and when the doctor came to check on me, she told Mum she’d come back and listen to my chest in the morning, claiming her “stethoscope was dodgy”. It was probably more a case of, “My friend and I are going out for a few wines”. Mum stayed with me that afternoon (thank God for mother’s intuition!) and I was lucky she did. Whilst lying with me on the bed trying to get me to rest, she noticed my breathing was very labored. I should have savored the moment – it would be months until I would be able to breathe by myself again.
My experience in ICU
Being in ICU is a funny thing. You are there because you are so sick and “need to rest” but life is a constant buzz. Machines which beep continuously. You are watched like a hawk. When you can’t move, you are re-positioned every few hours. You are fed through a tube. All of your medications are given through a tube. You are washed in bed. No more than two visitors at a time. Inside voices don’t exist (I think there is a prerequisite for needing to talk at a certain decibel!) And don’t even get me started on the toileting regimen! At a time when all you want to do is sleep to escape the nightmare, you do anything but.
I remember one of the nurses saying to me that everything would work out the way I wanted it to. My silent response? “Awesome. I can’t wait to die.” It was true, I couldn’t wait to die. Have you ever imagined your life from a bird’s eye view? For months, I was mentally floating above my life, looking down and seeing the remnants of a person who had lost their soul and will to live. I couldn’t blame that girl I saw. She was surviving, not living. The outside world became irrelevant because it didn’t exist. Aside from my parents tag-teaming around the clock and telling me small tidbits of what was happening at home, I didn’t care about what I was missing out on.
I had a friend come and visit me once and I tried to get her to accidentally turn off the ventilator. The rage I felt when she refused to is indescribable. It’s one of the moments that has stayed with me and I’m not really sure why.
It’s strange the things that really stick in your mind. I had a wonderful psychologist come and visit me and although the conversation was extremely one-sided, I liked her visiting. She said once, “part of moving forward is knowing where you are heading.” How could I move forward when my path to living a normal life was being disrupted by machines beeping, chronic pain and bed baths? Even the slightest tap or push on my skin set my whole body on fire and I couldn’t even let them know.
Weeks went by and nothing changed. I wasn’t dying but I wasn’t getting out anytime soon either. Keeping myself in check felt like I was walking (no pun intended) a tightrope. Life was overflowing but confined to four walls. A pivotal part of my journey was when a doctor (not mine) came to see me just to say hi. He also told me something that changed my mindset.
Nurture your relationship with yourself
People think that if you are paralyzed, the nerves are so damaged that you won’t walk again. He told me that mine had just gone to sleep and although he couldn’t say when, he was pretty confident they would wake up. He put the TV on and told me that every time an advert came on, he wanted me to visualize moving my fingers and toes. It would feel weird and it might hurt but it would remind my sleeping nerves of what they were capable of.
Suddenly, I felt like I was in control of something and I began to be my own best friend. I realized that the relationship I had with myself was essential to getting the hell out of there! Instead of focusing on everything I didn’t like about my life, I started to think about those that I did. I took the time to really appreciate why I was still alive.
How I was talking to myself was directly influencing my happiness. My head had been full of negative self-statements and I began to add “until now” to the end of every negative statement which ran through my head. I started by developing one positive statement. I surrounded myself with people who viewed me positively and refused to be treated by a doctor who said I might never walk again.
Every time an ad came on the TV I’d close my eyes and pay attention to my fingers and toes. I imagined my fingers playing the piano and pointing my toes. Whenever my mind wandered, I noticed the thoughts but let them float away and returned my attention to waking up the nerves. I had to embrace trust. I allowed myself to see a happier and brighter future but still allowed myself to crumble when it seemed beyond my grasp.
One night, I was finishing my day in the usual way and I was way too tired to do anymore. I was annoyed that I was tired because I just wanted to keep visualizing moving my fingers and toes. I prayed I’d be able to sleep and for strength to continue the next day. When I woke up, I felt different and I noticed that I simply felt much happier. It was when the doctor came round that I realized a miracle had happened. My breathing had been good overnight and I was being taken off the ventilator. I went from wanting to be off the ventilator to being so scared that it wouldn’t work and I’d die (the irony right there is that I clearly didn’t want to die).
Long story short? I made a full recovery (apart from not being able to jump but I’m okay with that!) There is so much more I could say about being in hospital but there is something much more cathartic within these words. Struggle caused me to want to give up but helpful struggle gave me a purpose. Reaching this stage of my life doesn’t mean that it’s trouble-free, I just have the confidence I need to find a way to overcome it and to find the support I need to do this.
I see challenges as the shit bits of life where I practice coping in tough situations. What’s surprising is that looking back, I see the challenges I thought were insurmountable or the goals that seemed too far away were more easily achieved than I thought they would be. Moving my fingers and toes was the easy part. Learning to walk again was really tough but I will say this, sometimes we surprise ourselves in what we are able to achieve. This experience made me stronger and better equipped to deal with other hurdles. Every challenge brings opportunities, so learn to look for them.
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