I have found it hard to write recently. But I also don’t know how to start this part of the story so maybe a part of me has been putting it off. When I started writing this blog I thought that this was going to be a story of struggle but eventual triumph. I thought that I had life all figured out and that I was going to write a lovely ending tied up in a bow. I would have my ending of the Paradise video where the Elephant finds its tribe and loves life. What I have discovered, is that life is full of twists and turns. The goal is to be able to live a happy and fulfilled life along with the dips on the road and to recognise that they are just that, dips, and not permanent situations. I was doing really well with my Narcolepsy management but recently I have felt like I’m going backwards. I am still not over the fact that I can’t drive at the moment. It’s a helpless feeling, I know I will get there again but the path to doing so feels like Everest right now. I’m also hyper sensitive to the fact that I turn 30 this year. The feeling of expectation of where I ‘should’ be weighs heavy on my shoulders. Yes I should be grateful and comparison is the thief of joy etc etc. But all I feel is raw anger. Like I’m in a bad dream that I can’t get out of. I reflect on the years lost to sleep and I want to fill them with achievements instead. I did achieve, but not in the way I wanted.
I wrote the above paragraph above on a particularly bad day. I reflect on it now and I zoned in on one word, achievement. My sense of achievement now is different and I got caught up on society’s view and not my own. After some thinking in the shower, I began a series on my Instagram called FIghter Fridays to acknowledge the struggle that all people with Narcolepsy experience but also the achievements that we don’t acknowledge ourselves never mind with the world. As therapeutic as complaining about our struggle is, we also have to realise that we eventually have to stand up and knock the dirt off ourselves. People need tools to cope with this and I want to change the conversation towards coping with this illness rather than just complaining about it (although I will still probably complain lets me honest).
Sorry if you came to this blog looking for a LOL but it’s important for me to show the true picture. What use is me faking my story to look good? The beauty of blogging and sharing stories is the feeling of relating to another. The feeling that someone else completely understands your struggle. The feeling that you are not alone. So if you, like me, have been struggling recently, please hang in there. I know that we will reach our sweet spot of coping.
I wrote the above paragraphs over a month ago now, nearly two months in fact. Little did I know then that my life was going to throw me another curveball to deal with. Since then, I have moved into my own apartment and began a new solo adventure. It’s been hard but as I write this I feel an immense feeling of pride. I did something I never thought I could do and I’m eventually coming back to myself and building a new life. I have weirdly found a new sense of self and my confidence is at an all time high. I’m finally standing up for myself and it’s about bloody time. Big shoutout to my support system who I couldn’t have done it without – you know who you are. So here’s to a new season in the life of Christine with a whole new set of characters and plot twists – sure life would be boring if it worked out the way you wanted to right?!
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’”
— Eleanor Roosevelt
Let’s get back to the story post hospital – warning to those who don’t like TMI….you are on the wrong blog…
Basically – I shouldn’t have been let out of the hospital before having a bowel movement. That first poop felt like I was trying to pass a shard of glass. I was also terrified of bursting my stitches and I was breathing like a sheep in labour. It was distressing. I was left alone to complete, what should have been a basic activity, in a dimly lit hotel room. I was crying. I was sweating. It was a whole ordeal. The end came when my mammy rubbed my back. It was over. My stitches were intact, although my dignity definitely was not.
There’s something about the way your brain reacts to a shock like the one I had that fateful day in London. It can’t quite understand what happened and so it repeats what happened on a loop over and over. You tell people who enquire about your health out of politeness every.last.detail. I believe it’s because your brain is trying to rationalise what happened somehow. It’s trying to understand why this happened to you. It’s trying to find meaning in the madness.
I remember, high on pain meds, I rang a friend at home. I don’t remember much of the conversation and to this day cringe when I think about it. She was at a formal event and I was recalling the ins and outs of my hospital stay in great detail. This was the start of the mental impact of the operation and little did I know that recovery was going to be about more than healing the physical wound.
Early the next morning, we rolled our suitcases…well rather, my parents rolled mine, to the lift and with a ding and the opening of lift doors, our journey home began. We checked out and waited on our taxi. There was a nervous energy in the air because it was snowing in London. The tube was cancelled in loads of places and we had heard that planes were being grounded at Heathrow. Colleagues of mine had texted the night before to check if I was flying home soon in a don’t-want-to-panic-you-but-get-home-now vibe.
After what seemed a lifetime of waiting and wringing of hands, the taxi arrived. The luggage was unloaded and I was helped into the people carrier taxi. It’s strange to think about now but I was really frail. The vertical wound made it hard to move anywhere fast and even the slight step up into the car was like Everest. When going to sit down anywhere it was the slow lowering gesture you often see older people do after letting go of their zimmer frame. I was nervous about this onward journey. My pain was under the control of meds. What if I was sitting too long? What if the plane got delayed or worse cancelled?
When booking our plane tickets, we selected Special Assistance because as mentioned above, I was very frail and I wasn’t able to walk long distances. I had been in Heathrow airport before a few times and each time I remember being shocked by how huge it was and how long it took to get from one side of it to the other. When we arrived at the airport, the people were waiting for me at the taxi drop off. The taxi door slid open and the lady, eying my Mammy’s grey hair and age, motioned for her to get into the wheelchair and started to reach into the taxi towards her.
‘Ah no that’s for me not her’
She looked at the two of us from one to the other and back again and then helped me into the wheelchair. We made small chat and before I knew it I had arrived at the Special Assistance bay inside the airport. The way they operate varies from airport to airport but in this one, they basically dumped you out of the wheelchair into what I would describe as a loading bay. Then you had to wait for a wheelchair to become free and you could either have someone push it or have someone in your group push you. Finally, a wheelchair became available and I lowered myself into my new wheels.
What I didn’t anticipate was the lack of control and frustration I felt being wheelchair bound. I am independent to a fault and I like things going the speed I want them to without even thinking. Before I knew it, I was like a woman possessed, barking orders at my poor parents to hurry up and show their boarding passes and directing them through the airport and being frustrated at their pace. Security wasn’t going fast enough, I wasn’t going fast enough and I thought they weren’t going fast enough either. If anyone had saw me that day they would have thought I was a right brat.
Underneath my attitude was worry. I was convinced that our flight was going to be cancelled. And what then?? I couldn’t stay here any longer. When I get sick, even now, I have a homing pigeon signal in my brain. I really don’t like being away from home. Unfortunately, as an adult, I have had to get used to the fact that I will often be sick without my Mammy for comfort. That is a fact of life. Now i suppose it represents going back to my version of home and things that comfort me. A bustling airport in a wheelchair was NOT my idea of comfort.
Security was the most stressful part. I always hate the pressure of it. It feels like you are on a gameshow. To be fair, the security line probably would be a good concept for one. Or like those shows where you are watching a magician try and untangle themselves from a lock under timed conditions. You try and take off your coat, watch and what feels like all your earthly belongings before having to wrestle your electronics from your carryon and all the while praying that your bag of liquids doesn’t bust open. There is judgement at the speed of your deconstruction of your person. You have to be fast but not too pushy. Slowness or lack of awareness of the requirements of security is a big no no. People will find a way to feel superior about everything. Oh wow Susan you know the rules of security by heart? Big whoop.
I was so quick at presenting everything that day, even though it made me feel pain and discomfort. I didn’t want to hold up the que. That in itself is some sort of internalised ableism. Don’t trouble the nice healthy people with your sicky problems.
It was time to board the plane and can I just say….Special Assistance and the wheelchair meant sweet fuck all to the keen que-starting-for-no-reason travellers. I had my eyes opened that day. People would step on your head if it meant they could get on the plane first. Even if the person they are stepping on has already been stepped on enough by their own condition and sickness. People who were in general boarding were trying to step in front of me and when it came to boarding the plane they were running past my wheelchair like a crowd of wolves. I was horrified. Is this really what it’s like to be wheelchair bound?? Were people really that selfish? Sadly, on this occasion, they were. I felt an immense sense of sadness for people who are wheelchair bound either permanently or frequently due to their condition. We still have a long long way to go before we make them feel comfortable in public places and not like their vital accommodations are an inconvenience. They deserve better, they really do.
We boarded the plane eventually and one hour later we touched down in Belfast International. I was greeted by my sister who took great pleasure in taking a cute video of me being wheeled up to the car by my Dad. I breathed a sigh of relief, I was home.