There are some things that you can never forget; like the smell of your pee when your liver and kidneys stop working. The strain it can take to fill your lungs with air. What it is like to try and swallow when your throat is coated in blisters. How you give up eating because it hurts too much and you are more likely to vomit it back up than hold it down anyway. How worn out the body can get maintaining a temperature above 40 for weeks. Over a month. To become nil by mouth, relying on nutrients to sustain you from a saline drip in your arm.
What it is like to waste away, slowly losing all your muscles from being bedridden for months. To struggle to walk even to the bathroom; forcing yourself because you have too much pride to use a bedpan.
What it is like being subjected to test after test, needle after needle. Results returning such as liver ALTs >5000.
The reality you’ve lost control over your own body.
The fear of not knowing what is happening.
Funnily enough a person can adapt to such conditions quicker than you would expect. When something becomes your norm, you are able to still put a smile on your face, laugh at jokes, find some small pleasure in the things you still have.
Love is a big one, to have love when so physically vulnerable is like a fuel that feeds your fire. At times it is the only thing that keeps you going, wills you to fight. But it’s hard to see your loved ones faces and know how powerless they feel, how powerless you all are over this thing that has consumed the lives you had before.
Whatever kind of normal that was, it is better than this.
When the doctors can’t provide any answers and slowly your body is shutting down, all you can do is stay positive for the ones surrounding you. You live for their smiles even though it is a struggle for them, when the only logical route of this madness is death. And all they can do it hope for something to change.
All you can do is fight.
Fighting an illness that has no name and only macabre prospects has a few aspects. One is to stay healthy- eat food keep fluids up. Luckily there are intravenous methods for an intact of fluids otherwise that would have been a hard one.
Exercise is obviously out of the picture as the ability to stand on one’s own feet slowly fades away.
But there is mental exercise.
Nothing too strenuous, so as to cause stress to the mind and body- just the right amount. Reading, Sudoku, video games, drawing all assist this process.
Dulling the mind is damaging, having too much time to think about what is happening is worse.
Look outside at the world around you if you are blessed enough to have a window to do so, remind yourself what you are missing. Things can very easily be put in perspective; the natural processes at work can remind you what an amazingly beautiful planet we live on.
A planet you have not yet seen enough of.
It’s hard to remind yourself of these things when you’re dying because you start to say goodbye to it all. You make your peace with the world and what was your life.
And something wells over you that it’s going to be ok, because you can see it is going to be so much harder for the humans who surround your bed every day. Especially if one of them copes by sitting in the corner of your hospital room drinking whisky at 3pm every afternoon. Even after you request this room as your personal space.
You will once again be a part of the cosmos and the idea of that is so tempting.
And you have wished for this very thing to occur on numerous occasions, due to thoughts where fueled by confusion and anger and sadness about the world.
About human nature as a whole, because let’s be honest, it is a crazy messed up thing. But it can be beautiful too; it is easy to forget that though.
It’s too easy to only see what you feel.
You continue to anchor yourself in your body, appreciating the things you can do, breath through your nose, while your throat closes up with thrush.
Accept your body is rejecting the catheda is so needs for intravenous sustenance, sick of the process of replacing them.
Once you start to fight it, and the test results change you don’t get your hopes up. There still aren’t answers as to why any of this is happening.
Panic attacks are a regular occurrence, breathing into a paper bag as the little group of men in white coats stand around your hospital bed and try to tell you that you somehow got on a plane to a tropical place or maybe China. THAT is why you have this mysterious illness.
You respond sarcastically that you think you would remember that.
Make a Wish foundation are called, a new liver is nearly ordered for a transplant after weeks of not being about to take pain medication due to organ failure.
Getting your first PAP with a metal duck, a male family member in the next room.
The cold unlubricated tongs- traumatic in itself.
You start to feel like you might heal and go back to school and catch up on all the study you are missing.
You do not realize you are wrong, not for now anyway.
Everyone says goodbye, just in case.
You are in so much pain, just let go.
Then one day, after a week of feeling stronger than you have in months the doctor comes in and states he has some good news and some bad news.
Your spirits have been lifted since you started to feel better, but this raises your suspicions.
He asks which news you want to hear first, and you say good- knowing that having that information will help you predict the bad. The doctor comes out with well the good news is we finally know what the prognosis is. You feel duped with this good news because you feel it’s a bit late.
You already started to fight this with no help from any medicine they gave you. Your mind shoots to what the bad news is, and you feel his withholding of the actually prognosis is a telltale sign. What he then states blows over your head in confusion and pure bewilderment, questions spew out.
Don’t people die from that? I am feeling so much better? This doesn’t add up? You’re wrong!
You’ve a few months into being sixteen, your birthday spent in bed fighting the beginning of this invasion of the body.
Your parents are in the room with you, the looks on their faces is something you will not forget. Tears streaming down your mothers face, your dad moving to comfort you and her while his face wells up, trying to grasp and take control of the situation.
You’re filled with guilt in that moment because you now know you caused this.
That is when you start to become numb, and put on the face that makes everyone ok but you.
The doctor clarifies you are going to be fine, medical advances have come leaps and bounds. Education around it on the other hand very little. You will be ok and lead a normal life but recovering for this first freak episode may take a while.
But there is still the burden of a lifelong illness.
But it is hard to see the potential of life when you still can’t walk on your own, your spleen is five times its normal size and there are social ramifications to this new news.
But you’re going to be ok.
It is weird becoming a statistic, and not just any normal statistic a complete anomaly to the average scenario.
In some ways it makes you feel special- total freak always knew it!
It adds to the weirdness and difference you have felt for some time now. But in reality you are so lost by this new path you have been thrust upon, how to be alive again after accepting death. What this new life means how do you make the most of this second chance, how do you adapt to this new card you’ve been dealt.
How to make time for yourself and feel worthy to plan a full life.
The answer is you don’t.
You drift until you anchor.
But that is another story.