It Hurts Now (2022 - A Year in Review)

I never thought I would have to begin a blog like this before, but here I am absolutely exhausted from this year. Everyone around me seems to be reflecting on their year and how they are looking forward to Christmas. For me I just do not want to even think about it.

My brain has always struggled around Christmas and every other holiday in the year. It is a change in my routine and I am constantly finding how people engage in different ways. You must buy presents that equal the same value that the other person got you. You must be grateful for everything you get, even though you specifically asked for nothing. You must express your gratitude at the previous year and the valuable lessons learnt. You must attend loud parties that end in you being one of the rare people that are sober, and wishing you had found a last minute excuse not to come. And you must change your regular eating habits to eat food only eaten once a year, even though you would much rather sit on the sofa with a sandwich and ignore everyone to watch a unrelated TV show.

It is exhausting even thinking about, let alone partaking in the whole fiasco. The older you grow Christmas changes and you realise it is not the festive amazing day you used to think it was. Your mind always worries to how you will let people down easily to avoid sensory overload at meetings and gathering. It also provokes you to believe you need to partake in every festive activity ever made to feel "christmassy".

And over time your mind becomes maturer and you look at the festive season in different ways to others. Some people enjoy showering people with gifts and making a big fuss. For me I just feel like I am putting on a huge facade to keep everyone around me happy. What I actually want to do this year is ignore that Christmas is even a holiday and forget everything that has happened this year.

I have had so much stress placed onto my shoulders this year, and over time I realised I have had enough of it all. Every week of the year was filled with phoning a consultant, going to a hospital, having a procedure done or waiting in line to get a prescription at my pharmacy only to be told they did not have it.

My body and brain is done.

I have never felt so desperate for a break of some kind. I thought that by not going to University I would be able to rest but my mind was constantly active. Every day I was silently worrying about my health and how long it would be before a doctor would tell me bad news. All the while trying to keep it together for my family and friends.

People would ask "How are you?" I would reply "I'm good thanks, yourself?" as it was so much easier.

My perspective of life changed so drastically this year and I have no idea how to feel relaxed anymore. The time I tried to relax and feel as though my life was finally on track, I had the worst month of my life.

I do not think people realise the monumental task of being a cancer survivor. The minute treatment stops you would think your worries disappear, and you live a happy healthy life.

But then you live with the after affects of treatment. You see people around you leave you or act differently because you are not who you used to be. The older you grow you see people around you dying of the same cancer and feel guilt when you have to speak to their families. Knowing you survived and their kid didn't, and watching them compliment you through their time of grief. The appointments rack up in numbers as you realise your body is not working how it should be. You get sent for invasive procedures all over again and relive the trauma for a second time. You hold a nurses hand as the doctors try and rule out cancer for a second time, as she tells you how well you are doing, all the while your eyes are filled with tears. The weeks of waiting for an appointment because of the cancellations and your symptoms getting worse. The agony and grief you feel when you get a diagnosis knowing you will never live a normal life. The constant feeling like no matter what you do your life is deteriorating in front of your very eyes. Being sent into procedures on your own and being terrified but putting on a mask for the clinicians and your family because there is nothing that can be done.

I am nearly twenty years old and every blood test, every CT scan, every MRI, every appointment, every phone call and every hospital stay reminds me of my mortality. I look at the face of death every morning I wake up never knowing how my life will pan out for me.

I am so tired of it all. I honestly get to the hospital and just want to give up. I do not want any of this anymore. I don't want the sympathy, the pats on the shoulder, any of it. My body is done with everything.

When you fight constantly for nearly two decades the voice of your younger self tells you constantly "I'm tired, when can I stop?", and every day I tell it "Not yet, soon but not yet.". I look back and think if she saw me now she would be scared. I feel I am constantly sheltering her, trying to be brave and solider like so much so I do not even feel human anymore. She stands behind me crying, while I shelter her from the incoming rain of trauma.

I grew up so quickly, I feel I let her down. I feel like I didn't protect her from her biggest fear, because I know how scared she was about it. I went into war mode, and when you spend every second of your life fighting you realise one way or another your body will stop on its own.

This year has made me realise how I am ungrateful for the life I have. I was told as a kid it would get better. As a teenager I was told it would get better I just have to try harder. Now as a adult I am told it's tough, but life will get better.

When? Tomorrow, next week, next decade? How long do I have to wait to find this silver lining everyone talks about? Because surely if it was going to get better it would have done already?

I feel like my face has two go to modes right now: bright smiles for everyone to see and total exhaustion for closed doors. I have unconsciously trained myself to do that.

The battle maybe over but the war is raging on.

And how do I know that? Everyday I wake up with the mindset to control my head and body. Keep it together as best you can, and try not to be a burden. When you close your doors that is when you can let loose, you can do whatever the hell you want. Out there in the world, you are just another person.

The world makes it clear everyday what they think of disabled people, ill people, LGBT people, anyone who isn't "normal". That wears you down and you soon realise these people can say whatever they want with no repercussions. All the while you stand there taking the abuse knowing if you fight back you will be in the wrong.

How do you think it would affect your mind after two decades of hearing slurs, derogatory comments, people saying you're faking your illness or a waste of space? How do you think I feel knowing I refuse to get help sometimes because I have had so much medical neglect? The years of being told "you're just hormonal, go home", "It is just anxiety.", "You don't have that what are your talking about?" and "Stop coming here nothing is wrong.", when in fact something was very wrong.

You get tired after a while, and your brain then tells you these people must be right because they are qualified. Then it gets worse until one day you casually mention it to a doctor and they say "That is not normal, get to the hospital now.". That has been my life. Over and over again.

And when the moment comes and I say to someone "I have had enough." I get the words "Don't say that, you'll be fine soon!".

To put it into perspective more I have never had my own bodily autonomy. What that means I have had things done to my body without my consent. No ones fault, they tried to save my life. But the marks are still there. The huge abdominal scar left from my tumour-removal operation, the tiny scars from my treatment lines, the bruises from the missed canulations, the lies you tell and smiles you fake to avoid telling people how you really feel, the reminder at appointments how close to death you actually were and the never ending feeling that this nightmare will not end.

Sure I have a choice now over who can do what to my body, but how well would that go down with everyone? "Hey I just stop taking my meds because I am bloody tired of doing it everyday!", I can tell what reaction I would have from that. Because I am reminded constantly by people, doctors and strangers how inspirational and brave I am just for existing.

Every time I get told that I loudly roll my eyes. I am a human being who unwillingly has to go through medical procedures monthly, and somehow me existing is inspirational to you? I do not see how. I do the same things most people do:

Complain about the state of the world, clean their room, act as a part of society and look after my own animals.

None of that is inspirational. It is just partaking in society. What people find fascinating is how I (a young person) am in a wheelchair, uses hearing aids can accesses public spaces just like anyone else.

After a while those sentences are not the compliment you think it is.

I had someone tell me once while I was in my wheelchair "In 5 years medical science will advance so much I won't have to use it anymore.". At that moment in time I thought to myself if me being in a wheelchair makes you want to say that with your mouth, you need help. Like I am trying to cross the road, I was not asking for your unsolicited advice thanks.

How does me being disabled affect other people apart from me? People are seen as heroes if they help a disabled person, but when someone stands up for themselves its a negative. We don't need coddling, we do things just like you do. And have a darker sense of humour doing it.

How long do I have to put up with all of this for, until my mind and body say "Okay I have seen enough of this world, bye!".

I understand some people may react badly to me saying all of this, but there comes a tipping point in ones life. This is mine. I am tired, in pain and want to curl up and not have to worry about how I am going to get from one place to another without damaging myself.

2022 is another year for some people, and for me I cannot wait to see the back of it. I have had more trauma from this year than I care to admit and wish to just forget it ever happened. I am done trying to be the person everyone knows and loves. The one who is kind to everyone no matter how badly she dislikes them. The one who puts on a smile when they truly want to cry. The one who pushes themselves so much no one sees the struggles. The one who just wants to collapse and stop talking and let the world go by.

The exhaustion is real, and so is the burn out from it. And now is the time I think selfishly about myself and what I want. Which when you think about it is not selfish it is just sensible.

I am done with this year and done pretending everything is fine. It is not.

Molly-Tastic Treves