4 Year TPNiversary

[real version]

Usually, I write these anniversary letters in a very certain format – one that has a certain structure and focuses mostly on the positives of what I’m grateful for and what things I’ve learned while being on TPN for the past four years. I wrote these anniversaries to demonstrate all the ‘life lived’ that being on TPN gave me since this time is all because of it.

This year it’s hard. It’s hard to be grateful. And of course, I can go into the family, friends, and therapy support and the ‘grateful to be alive’ and ‘be home’ part of it all – but I’m challenging myself to be real. To be honest and sit in the sometimes-shitty parts of it all. I’m always putting on a smile for my doctors and everyone else but I’m going to tell things how they really are.

It has been incredibly difficult to think of the past year as anything but a waste.

This year has proven to myself that I didn’t know the meaning of the word ‘limbo’ until now. I feel like someone trapped in ice at the bottom of the arctic ocean- left to maybe be found someday or maybe not. Completely frozen and lost to time and space.

[I hear from others that people are “always thinking of me” – but why do people who say that never tell the actual person that they’re thinking about them? All these thoughts that get lost just like the person who never gets to hear those words.]

It is a pain like no other to feel like you have a purpose and dream in your life that you’re good at, but your body won’t let you. It kills me every day that I can’t be out in the world stage managing. [I dream all the time of stage managing shows and events but I’m always stuck dreaming in the past; is it because there is no future?]

In the time you spend in limbo, you can try to hold out as long as you can- to try to not lose the person you are but time always wins. You always get lost and placed in a liminal space, where, if you catch a glance of yourself in the mirror, you won’t know who it is staring back at you. They might feel familiar but it’s someone you hope no one that knows you sees.

I’m trapped, not by choice, to my bedroom, stuck here for the next–

It’s silent in here but in my mind it’s always noisy because I’m always trying to think of a purpose; make a purpose; this time can’t go to waste– please don’t let this be wasted time.

“So what did you do the past year?” – I can’t say nothing….why- why do I feel the need to have accomplished something?

            Is it because this won’t be the only time?

                        The “excuse of being sick” only counts ‘once’ in life?

I thought about maybe applying for the Olympics –

At first, I thought, ‘why should I even try; I’ll never make it’ but then I thought, ‘even if I did make it to the team, would I even be able to make it?’

I ask people what I should be doing here in limbo, with all this time. They tell me I should learn another language, learn a new hobby, take this time to learn a new skill or do something meaningful-a purpose (again).

            Do they realize I’m in limbo because I’m sick? I’m not just isolated.

I get tired– so tired. And weak. I feel like I’m falling apart, which I kind of literally am.

I learned that my bones are headed towards osteoporosis; long term tpn does that to people.

I also learned, that’ll make my teeth fall out-fun.

I can’t believe it- osteoporosis in my early 20’s. I knew I was an ‘old soul’ but I didn’t mean it

literally.

Now I have to worry about breaking my hip or my spine and -

from all the time spent in limbo in my dark room (from the migraine for 9 months) I’m

vitamin D deficient. And I can’t even really fix that-because I can’t go outside.

I have a love-hate relationship with being stuck in my room for the past year; it sucks to be stuck in the same place for a year- people isolated in their homes during COVID could at least move to other rooms of their house. I always have to open a door with such caution. I have to open the door just enough to put my nose up to it to smell the air from the next room. If there’s an odor, I have to shut the door quickly and equip myself with nose plugs and an emesis bag. I then have to run through that room to get/do what I need and run back and shut my bedroom door. All the doors have seals now. When my mom was here, she had to tape the seams of the doors shut. The smells can’t enter the ‘safe room’ or else I’ll start vomiting.

I guess something I learned in the past year is that you can endlessly vomit. I got stuck a few times. You think it’ll end, or that your body will get tired, or that there’s not more that could come up-especially as someone who doesn’t eat, but it keeps going.

That’s why we had to seal me in- into my safe room- into limbo.

The consequence of all of this nausea, which has since been more manageable in the safe room, is the chemical burns on my lips.

Hard thing to heal. It’s still not healed after a year. Something about the skin not being able to recover because of how deep the damage was.

Annoying.

Sometimes days can be busy- the days when I’m feeling worse; when I’m sicker. It’s difficult setting up my room and all my IV meds throughout the day. I’m my own caretaker and nurse and I have to make sure I’m keeping myself safe. And I do a very good job-an excellent job-always-

            I have to.

It’s been very tough being stuck in limbo. The whole thing about these limbos is that there’s no timeline.

“So what’s the next course of treatment?” – there is no treatment.

“So how are they going to fix you?” – they don’t know how and there is no cure.

“The doctors can’t just leave you like this, right?” -they definitely can; that’s what is happening. But don’t be confused, this isn’t anyone’s fault. This is just the reality of my experience with my chronic illnesses.

So now for all my default statements because turns out I couldn’t hold my promise from the beginning and worry about being unfiltered and how others might feel reading something that isn’t uplifting-

            “I’m okay, I’ll be fine,”

            “I’m just venting,”

            “I’m not giving up, it’s just heavy to carry sometimes,”        

Okay, now that I’ve calmed you down, I’m going to go rest.

Just know, that I’ll be here, same place as usual, in limbo.

–      Emma