I figured since we have to deal with the whole “save your life before your body hits 0” conundrum, that it was best to resume my research to familiarise myself with this new chapter I have to enter.

The shitty thing about this whole process is that nobody actually explains things to you. People don’t want to talk about what to expect, the processes, and the reality of the situation. A lot of professionals would rather avoid it until the very last minute keeping you in an ambiguous state of never-ending anxiety, confusion, and questions.

Lately I’ve had to deal with making huge decisions in terms of my health. It’s a really dark time and I’m sure uncertainty is a massive contributing factor to the stress and anxiety. It’s all well and good to tell patients “not to focus on these type of things”. “We’ll cross that bridge when you get there”, “remain positive” etc etc, but that just isn’t the reality for a lot of patients.

We’re not talking about which direction to take when we get to the traffic light. We’re literally talking about being cut open, having third party organs inserted inside your body like a robot, being stitched up and hoping that your body won’t reject it, and just hope for the best and let nature and science take its course. BEFORE that part, the lead up to it all which involves another gruesome journey. Yeah, it’s not exactly a situation where you can just switch your mind off and not think about it. It also requires a severe amount of planning if you are predominantly alone.

Some of us don’t have proper support systems to help, ease, educate or console during such a scary and critical time. Some of us aren’t elderly and don’t have much experience with issues like this that are usually in older age. Some of us may have extreme health anxiety and trauma around that entire area. Some of us are needle-phobic (or whatever the term is), and are terrified of surgeries. Some of us don’t have the comfort and reassurance of mom and dad or siblings. On top of that, some people’s friends, family, and support live completely opposite locations and countries. And massively, some of us have a billion responsibilities that can’t simply be left at “focus on your health, the rest doesn’t matter”… I could give a 100 different perspectives and POVs that many people don’t think of because these things have sort of always existed in the average person’s life.

I’m young, and I am all of those things. Ambiguity and mixed messages is really not appreciated in a time like this. I suppose that’s why there are other communities and resources to help those like me.

I did this when I started the journey in saving my vision. I watched videos of people getting eye procedures awake and took weeks to watch one without closing it. I did this too when they wanted to introduce lasers into my treatment. I also did this when I was 12 and first diagnosed with diabetes and didn’t know what the fuck to do, because no adults in the room wanted to help me. I don’t think I can watch a video of someone getting a transplant, yet alone a double one, but I figured the treatment part would be somewhat digestible and can prepare and educate me a bit more.

Well, wasn’t I wrong? Very wrong 😅

First, I joined some groups with patients who are currently undergoing treatment. Think your local neighbourhood Facebook group where the community get involved in all sorts. Patient uploading photos of their machines that they get hooked up to, comparing and showing them off like it’s Cars & Coffee. Then you have the daily debacles and discussions about everything treatment related. I once stayed there long enough that I got to the part where they all diverge the gruesome and ugly parts of treatment which I’m sure I couldn’t process quick enough and still haven’t fully. The sad reality that I am as usual, the younger minority in the room.

Safe to say, I had a massive panic attack. It was so bad I left all of them except one 🤣 slow flashes of my new reality slowly sinking into my brain as if it was a paralytic nightmare I couldn’t wake up from. Nope, that’s just my upcoming future. When the emotional stress and pain is so high that you temporarily don’t feel the physical pain that is normally there in the background. Silver linings and all that…

The other groups I have joined are all related and have similar depressing flavour profiles. Even when you join nutrition ones for those with my condition, trying to do everything in my power to stabilise my body and work with it… until once again, I am met with the reality and exhaustion of the fact that 90% of my choices are now limited and restricted. Food, drink, medicine, movement, and everything in between. Can’t have too much protein anymore because my body can’t break it down. Can’t take creatine anymore in the gym because it will kill me. Can’t have some of my favourite fruit and vegetables because of what’s in them. Can’t do my old workouts or move like I used to, because that will also kill me faster. Getting insane water retention even though fluids are such a grey area right now and I have to be seriously careful. One wrong move and you have about 10 different side effects that affect your simple day to day. It’s like a Pinterest board that represented a perfect compilation of “you’re so fucked”. When your body is in this condition it’s like the little things that used to help you or bring you joy, slowly gets ripped from you one by one and you feel like you can’t do anything right even when you have the determination and motivation to. Think of it like being stuck in hell. I’d argue it’s like purgatory because you don’t know if you are going to the afterlife or you’re going to get a second chance. You just have to sit your butt there and pray for the best.

I’ve joined more local groups that help with things that I utilise such as transport and local medical groups. They’re less intense, but there’s always an underlining sadness because I deep everything and all I think when I see those people is how unfair life has been to them too. That even though there is a slight comfort in knowing that people are going through similar journeys to you, it is bittersweet because it’s not exactly a journey that any of us should be taking. I’m thankful for the community for giving insight, putting themselves in vulnerable positions, and writing about their experiences regardless.

I made a sort of friend who is local to the island and going through what I will have to very soon. I’m not sure if it’s me or just being at this stage in life, but your mentality just changes to “fuck it”. Think of Yoda telling you to “let go of control” and “stop caring”. That’s the vibe I’m referring to. My point is, at this stage in the game I don’t have time or capacity for formalities and beating around the bush. I’ll literally text my new pal freaking out and asking a bunch of questions that I’m sure are very annoying. It feels like I’m talking to someone in my future as they are in the exact same position as me with the same organs needed (luckily we don’t have to fight for the death over matches to see who wins what). He was amongst the first few people I contacted when I opened the heartbreaking letter and had another bad panic attack and breakdown (another story for another day). It’s nice to be able to talk to someone who is already attending all the places that you will. It’s scary yet comforting to have a bit of an insight as to what to expect when it comes to treatment and our bodies. Asking David questions is like smoking a cigarette. You know the result is not going to be in your favour but you ask anyway because you feel you need to.

The part that I appreciate the most is that he never sugarcoats and answers the best he can. I think it’s important to have people in your life like that. I really hate when people take it upon themselves to “protect” you or shield you from something you are asking about in the first place and that is relevant and important to you. Sometimes it’s good intention and sometimes it’s medical professionals who simply don’t care to.

David is my forced friend and involuntary medical assistant now. Maybe we can put matching stickers on our machines and compare whose surgeries are worse and take bets on survival? #friendshipgoals

To wrap my experience with groups up, I can’t stomach them for now. If we’re being honest I just cry. I cry thinking about everyone who has to go through this awful journey. I cry about the life I never got to properly experience due to survival and hardships. I cry about the pain that I feel and the pain that I know I will have to power through like I always do. I cry knowing that I don’t get the same compassion and empathy as people who are deemed “less strong” or less “dominant” than me. I cry knowing that my little bit of freedom is about to be stripped from me a nd I have no control over it. I cry knowing that I may not survive this treatment because of the condition of my body and the consistent exhaustion and damage I still put it through. Probably why I have sleeping problems because I definitely don’t have time in the day for all that crying hahahaa

I swear, grieving and healing simultaneously is like being hugged and stabbed in the same minute. I just have a way with words, don’t I? 🤣 Safe to say I won’t be going into those groups as much and I’ll be alright with just my little journal that I’ve been used to since a child. Maybe when I can process and accept my own stuff because I am definitely not in the strong position to read and look at everybody else going through it. My misery does not like/want company, thank you very much. Serious respect for those who share and speak out every day as it massively helps individuals like myself. Means the world in such a scary time. (you’d think I don’t know any other synonyms for “scary” but it’s the most fitting word and vibes.

Chau for now,

Chloè