My mother became terminally ill when I was 17 after an aortic dissection revealed a genetic illness. I am now 21, a first-generation low-income scholar and college senior, studying two hours away from home. I have spent the majority of my education caught in entrapments, leaves of absence followed by intensive studying, and commuter experiences. While I am residential now, I spent the first two years at a local community college before transferring, here I was her primary caregiver. I also was responsible for my brothers, both of which were Make a Wish recipients.

Today, my mother is disabled, in hospice, and nearing the end of her time on this earth. She suffers from chronic and severe gastroperesis, Vascular Ehlers Danlos Syndrome, aneurysms of most major arteries, bleeding lungs, a reconstructed leg that causes body-wide nerve damage, chronic seizures and mini-strokes, pancreatitis, vertigo, and several other diseases, syndromes, and ailments. Her issues are excruciatingly painful, causing dislocations of every joint in the body, and leave her fragile, vulnerable, and immensely ill. She has recently suffered several injuries related to her disease. She is dependent on in-home care to provide that which I am unable to while in school.

Last March, I submitted a letter to my local community. With encouragement from those who felt it was educational on death, grief, and a unique nice of the American medical system, it is attached below, verbatim, along with the correspondence it inspired.

Let me tell you a little secret from I personal experience.

End of life care in this country sucks.

End of life in general sucks.

Some of you are wonderful.

Some people are not.

Want to find out where the stress and anxiety and frustration from loving someone who's that sick comes from? (Everyone has an opinion on it, so why not actually talk about it for once, right?)

It's not coping with the illness, though that's a portrait of suffering that I could never justly paint in a post like this.

It's dealing with people who will judge how you mourn or grieve or act. I am actually living a life and functioning, believe it or not. I don't run around bleeding on people. I go to class, I get up early, I work all week, I do my job, and I get my work done. The fact that I've found a way to lock up what all this feels like is not an overnight talent: it took years of therapy.

If you can't "feel" how I feel about it just by watching me talk about something unrelated to someone uninvolved, especially if you’ve only talked to me an hour or two every other week, you’re really not getting an insight into the experience. I don’t invite everyone along. It freaks people out. Imagine being a 20 year old girl going through that. Now imagine being a 20 year old girl trying to know what to do with a potential new friend going through that.

You learn fast, LOCK IT UP or you will be alone. People can’t deal with it. It’s too much. You’re too much. Lock it up.

I don't have to justify that. I am not cold. I am high-functioning, most of the time. I know from painful and chronic experience that there's a time and a place. I'm also an introvert who has to force energy to be able to interact with new people, even when I like and adore them, and that forced energy is usually too-loud too-friendly half-invested, meaningless conversations because that’s all I can handle. You don’t get an insight from that.

I'm also someone who's been doing this for FOUR YEARS. You cannot be at Level 10 Break Down 24/7 for four years straight, every moment of every day. Even if you are on edge all the time, and you have nightmares every night, and it always comes up one way or another, you're not going to have that on the surface at every second. People will literally leave you and disappear from your life because you're going to wildly overwhelming. You say, "I'm fine" or "it's fine" because saying anything more turns into more words than anyone knows how to handle.

People don't really want to know how it is. When they say they do and you tell it like it is, they tell you to go see somebody. You don't get to say, "you shouldn't have asked" because that's all they know how to do. It freaks them out, reminds them of mortality, reminds them you're intense, reminds them that loss happens. They say "are you seeing someone about this?", "what's your support system?". They got sick, or they are going through the same thing, or they got scared and they leave.

Believe me, I know. I was 17. I lost everyone and everything.

I shouldn't have to explain that.

It's also dealing with people who tell you that you're selfish for going to school, it's people who tell you that you're controlling if you fight against something that's not right for her, it's people who tell you that you need to see a therapist because you're too emotional, it's people who tell you that you're cold because you're not more emotional. It's all the people who judge years of experience and you and your most intimate relationships and your most psychoanalytical coping mechanisms -- things they can't gauge by taking to me for an afternoon four years in --- because they're thinking I seem fine. Too fine.

It's dealing with people who think their experience is more valid than yours even though they're not living it. I'm sorry, but being a second-uncle-twice-removed who met my mom once at a Christmas party when she was 5 is not harder than being her daughter during this time.

I know she is loved. I know it's hard to love someone who's hurting. I'm not invalidating that experience for her dear friends and family. I'm also not going to open the floor to a pissing contest about what's harder. You don't compete, and no one is asking you to. I am not asking you to. You don't have to prove anything to me. You have space and I get that. I offer you that. BUT what's true? What's true is that if you don't live here, or you're not literally her parent or child or spouse, you don't know. I don't care if you've known her longer than I've been alive. If you're not here, you don't know.

It's dealing with people who want you to comfort them. Usually, I can. But not every day. I am emotionally exhausted in every area that even touches this experience and I'm sorry, but I can be as kind and I can even understand and I can even empathize with you, but for some folks, sometimes, I just can't. I don't have it in me. It's asking a lot for someone to let you cry on them when they know you don't understand and they've done their share of crying. You're not watching Bambi, I lose the ability to be invested if the story is sad on a stranger's ears. It's not someone you love.

If that's selfish, I'm sorry but sometimes you have to be. Do you shower her, feed her, comfort her when she can't shower and can't eat? Where you the one who was there every night, for years, through the worst seasons and the best ones? Were you shaving her legs and doing her hair and walking her wheelchair so she can feel the sun and holder her when she sobs and holding her while she screams while her wounds are unpacked? Have you said "goodbye" in an ICU so many times you don't know if you're in denial when sometimes you don't really think it's the end?

Are you afraid of being in denial then missing moments you should have taken seriously, of meaning the goodbye? Do you mean the goodbye every time, and watch it blast you to pieces over and over like it's the first time? Are you aware that you start to shut down, to cope, and it's not the first time. IT's the second and third and fourth and fifth. Are you aware that if you don't hold onto a little denial that you'll fall apart and never get a normal life back? Are you afraid that you’re life will pass you by because you spent so much time on a precipice that you weren’t able to function? Do you do everything you can to be emotionally and psychologically available, to the point of constant exhaustion, for someone you love more than anything? Do you do everything you can to balance that with continuing to build a life so that if, and when, it happens, you aren’t left with nothing? So you will be able to grieve, not rebuild? So that your family has someone who’s reliable and worked to give them a structure and a life that they can crawl into when theirs collapses because they stayed, they had to stay?

Are you angry? Are you numb when you shouldn't be, raw when you shouldn't be, and scared all the time?

I know she's pretty and friendly and nice. I know you love her. Many people love her. You should love her. She’s kind and charismatic and wonderful. Everyone falls in love with her. She has armies of admirers, and maybe you really are her biggest fan and maybe you really do have a connection that’s more and different than everyone else. Maybe it doesn’t matter if it’s more because it means something to you. I recognize that. I hear that. I hear you. You have space. But you can’t have all of my space. If I gave myself and my time and my heart to everyone, I wouldn’t have anything for you or anyone. I would have given it all away long before you ever showed up. I would have nothing left for her, or for myself, or for my brothers, or my father. That’s what I can do. I’m sorry if that’s not enough.

Most of all, it's dealing with the care system.

Before I say any of this, I'm going to warn you right now. By voicing this frustration, I'm going to get painted as emotional and compromised. Why? Because showing any weakness and attachment to objective choices for someone's medical interventions is the easiest way for someone else to gaslight you and take control to do what's easiest and most convenient for them as a provider as opposed to what's right for the person you're invested in, step by step. They will tell you that you're young and you don't know what you're talking about and you're "too close" and you don't have "X-decades of experience being an X aid/nurse."

(Funny how I have once I have a conversation with an actual doctor and I'm the one that's agreed with.
Funny how they don't like me telling the doctors what they've done.
Funny how they don't like me coming home, making phone calls, and being told what's going on.
Funny how they wait until I leave to start things up that they know would never fly if I was there.
Funny how they want a quiet, empty house and a bureaucratic assembly line with the most extreme decisions possible and a deliberately separate, in house power structure.)

Anyway.

I'm generally strong enough to intellectualize even the most emotionally vulnerable topics to have a distant discussion.

With that said, if you ever want to experience true condescension, be a young daughter trying to advocate for what your terminally ill mother wants -- even if it's in opposition to what others think is desired. I don't care who you are, you don't know what my mom wants more than my mother. The fact that you can even try to play that card is so low I can't barely spit it out.. If it satisfies you to make people cry, to have your way, you need to NOT BE IN THIS INDUSTRY.

You will be called overemotional and dismissed, and it doesn't matter how entirely valid everything you have to say is. If you don't shout loudest or have a claim to decades of experience, it doesn't actually matter what you have to say. What's even more remarkable is when they KNOW they're doing things you do not support, do not approve of, and will raise hell over, but they wait until they know you're gone to do it. Or to say things they know you'd shut down immediately when they were there. Because it's convenient and it makes them feel better. Sorry to tell you folks, but it doesn't matter what you want. It doesn't matter what you do for every other 90 year old patient, or if you're used to making people into disconnected over-medicated bubble boys because sheep are easier to heard than horses.

Forget it. You can't shut off and shut out a human being. You can wrap and lock up and scold and bully a grown adult because they're vulnerable and small and evoke an impression of the childlike. The fact that my absence is openly taken advantage of by those who want to cart my mother around in this creepy, dehumanizing game rather than provide nuanced care on her terms makes me so damn livid that it's actually difficult to continue to focus and do my work, and my job, and essentially execute my life in school.

I don't complain. I don't go on about what it feels like to know that the people you are most invested in, the only ones that know and understand me with any substance, the only ones I would give up every dream I've ever had and come home for, are in a situation so messed up I can't even articulate it most of the time. I don't cry. I don't stop my feet. I don't scream. I keep my head down, I do my work, I go home whenever I can, and I live in two places at once: on the phone AND at school, here and there, CT and MA.

I don't make unreasonable and unfounded demands, and I can articulate to the last letter exactly why that which I advocate for is A) the best, most well researched choice at any given moment and B) what my mother actually wants and C) why what she wants is the ONLY THING THAT MATTERS. Not what I want, or my brothers, or my dad, or a nurse. No. What she wants. No "but what if that's not-", no. No "but she's compromised-", NO. This is her life. She is a young woman in her early 40s and telling that she has no bodily autonomy or right to control her life or influence over her own care or SCOLDING her for moving or wanting something or getting injured is completely inappropriate and unacceptable.

Medicating her furtively, without telling her what you're giving her, IS INAPPROPRIATE. And frankly, I'm certainly no anti-intellectualist. I recognize your training, but I know more about her disease than I do about my own major in the third year. I'm not an idiot and you're not a victim of another "domineering family". Your patient is not your mother.

I've taken 30 college classes, I've traveled all over the country, I've met with more doctors than I can count and I remember every single one. I acknowledge that someone has more medical experience than I will ever even desire to pursue, but I have one thing that your A.S. in health whatever does not: 21 years of every hour of every day being with my mother. I know her better than almost anyone on this planet. I know how to read her, her emotions, her body language. I know when she's cognizant. I know.

I trust her to know her body. In fact, she is more biologically self-aware and resilient than any human I or many doctors who are far more qualified have ever met.

I don't care what's easy for an aid or a nurse in an afternoon. I don't care who's got a power struggle complex, or who has crap they couldn't leave at home that day. I'm a remarkably patient and compassionate and professional person in these situations.

BUT that patience and empathy is conditional to trust when it comes to my mom. If you fracture that trust ONCE, that's it.

She is the most important human being in my life. I let you into my home. I let you near my mother when she is helplessly dependent on you. I let you near my little brother when he's helplessly dependent on whatever adult is around. And I have been neck-deep in this reality since I was 17 years old. I am not an idiot. Suggesting my terrifying calm means nothing when I'm making a choice you disagree with and that becomes "you're emotional", is earning you a set of four letter word real fast.

Saying "you're not here" is so disgustingly insulting I could throw you from a cliff. I spent my first two years of college staying home with her and coordinating her care. This has been my life FOR YEARS. I had to literally be in counselling for a year and a half before I was able to cope with not being there 24/7 so I could finish school, and I'm still tempted to run home sometimes.

If I hear one more person gaslight me or my family by saying, "oh, you're too close to this", I WILL LOSE IT. I am too close. I'm closer than you will ever be. If I hear one more person tell me to" hurry up and accept that she's dying" because I disagreed with them wildly overstepping in some area of her care that she (not me! I literally never intervene unless I'm reiterating her voice and I DON'T CARE how frustrating it is to listen to her for you) wants.

This is when I kick myself for talking about her like she's not there. People do that a lot. She notices. It hurts.

I am too close. Too fast, too raw, too loud. That's what terminal illness is. That's what loving someone who is suffering is.

It's not pretty or easy. It's not something most people ever give you a space to really talk about, because they don't know what to say. And it's the weird phenomenon in which you have crap so people with horrible viewpoints and a lack of empathy unload their crap (as in, sadism and insensitivity) onto you in reflex.

Also, most people are wonderful.

Most people are loving and kind.

Most people are good.

It's a spectrum and it's life and that's all it is.

This is the quiet moment, after the fact. This is when you lock it up.

I'm locking it up.

With love, and grit,

Yours

From this letter, I received an outpouring of love, and a surprising (albeit small) consideration on issues that have previously gone ignored. Given that putting something in writing is not my first instinct, but rather, a last resort after informal speech went unheard, it was short-lived.

However, what happened instead was a profound, essential conversation.

In answering questions, a follow-up letter went as follows:

Dear (redacted),

Thank you for your continued support, and compassion. Unfortunately, writing is an area we've exhausted. It's a core area of system failure. Not to mention, all too often the patient gets little to no say if their families want something else. My mom has an advocate in me, and our family, but I chill to think of those who aren't so lucky.

Ah, the written wishes (as asked about). That's the thing, it's a moving target. The condition is never stable, the symptoms are always in flux. They're always trying to force new sedating-medication on her, or to get her to sign papers she already said she doesn't want to sign. It's not just "dying" and wishes for burial and funerals (and of course, I'm the one with that information because it's 'too much' for everyone else), but it's the care at the end of life.

Some people don't get that she is sick, but she's still a mother in her early 40s. She has a marriage. She has children. She has friends. She has a life. She writes books, she keeps up with shows she adores, sometimes she even travels. Lately, there has been little but weeks of sleeping - but there's been turnarounds that have given us all whiplash, and I refuse to let go of the idea that there should be space for those opportunities to happen organically, if we ever see it again.

She's in pain, but sometimes it's a functioning pain. Sometimes it's paralyzing and keeps her bedridden for months. But she deserves the fullest life possible in every single day, and sometimes that maximum is richer on days she can move and stand, and sometimes that life is rest and palliative management on days she can't. Treating her like a vegetable every day is not the right choice for her because she's alive. She's in motion. They don't get that. They want her to hold still and wait. Literally, wait to die. And forget that! She has so much time. Sometimes she rests. Sometimes she really, really lives. They are constantly stomping on her ability to decide when and how to do either.

If she falls every couple of months, they want her confined to a bed 24/7 with a catheter or bed pans and constant knockout meds. But that's 100 days she could be dancing in the kitchen in between (...theoretically). And it seems that they want to have increasing amounts of "rules". If she falls, they YELL at her for moving. If she bumps and dislocates her elbow, they YELL at her for being clumsy. What is the purpose of that, you know? They're condescending, and they treat her like an infant, and they can't come out and say what they want to sometimes, so they lie to your face and treat you (me, my mother, my father even) like a child.

It seems as though those who spend the least time with her are the ones who get to tell everyone else how to adminster her medication and where it is -- sometimes medication designed to put you under, literally -- except her, and they tell everyone else that they are in control of her body and she is not.

They have shamed her when she gets injured, or makes a mistake, or tries to speak up. They ignore what she wants when she's conscious when she's unconscious. It's a nightmare. They don't understand how dehumanizing and terrifying that is. She's not just aware, she's speaking and conversational and alive. To have people ignore your desires and consent when they think your sleeping and to take your rights away from you when you're sick, not clinically insane but sick, is pure cruelty. She needs compassion, not a lobotomy.

You can't institutionalize the experience of dying. Especially not for fully cognizant adults. It is wrong and unethical in every way. If you did that to someone who had the energy to stand and speak forcefully like their peers, you'd go to prison at worst, and be de-licensed at best. You probably wouldn't do it in the first place.

They sometimes forget she's a person. Not a puppet or a little kid or an invalid. An adult woman who knows exactly what they're doing, even when she's too sick to speak.

We're on state care, we're not going to get into a hospice of quality in which the family has priority influence. We are dependent and powerless and they know it. They don't care. It's a job. It's what's easy for them during their exhausting 9-5. But their decisions are a human life and they don't have the time or patience for the empathy I work so hard do demand. It's so, so wrong.

Outside of the DNR they force you to sign when you need a certain level of pain management, there isn't a thing that paperwork does until after you're already gone. It can't make your caregivers more human. It only decides who gets what and where you go. That's an incredibly cold thing for someone who's still very very alive and living a full life.

It reminds me a lot of asylum anxiety nightmares. My mother used to suffer from them when I was young. They've returned to her lately.

Yours

Shortly thereafter, I received a series of messages and letters --- all of which from people who fall in the "wonderful" category of loved ones, connections, and community members. They were beautifully thoughtful, and had much insight to offer on those who continue to make an experience harder. Above all, they were amazed they hadn't seen some of the cruelty they were near but rarely noticed.

My letter was helpful to their awareness. Their love was cathartic. The next day, after being overwhelmed with love and support, I wrote them their own letter:

Yesterday, I talked a lot about things that bum me out. Gritted teeth and frustration are part of this story, but they're not the only things that follow me.

A fire to do what you love, make someone proud, and make every second count is right there.

Reaching out and healing rifts between people that once seemed harder to love than they are is right there.

Telling people what they mean and being comfortable with positive honesty is right there.

Doing the bold, terrifying thing to make a beautiful, amazing, breathtaking thing is right there.

There's a lot of beauty in suffering. I sometimes hate those words, and they don't always feel right when they're in my mouth, but there's a truth to it. It's hard to say when you're being ripped to pieces by wind and debris, but there's awe in the eye of a hurricane, and there's heart and faith beyond the aftermath. You surprise yourself by what you can survive. You realize who and what's most important -- who you throw yourself on top of in a tornado, what you grab when you run out of the house as it's burning, and who you want to call when your city is in rubble -- and you learn to live with those things in focus, and everything else becomes white noise.

These obstacles have made me brave. They have made me bolder and bolder, and I'm still getting there, but something is always happening. I am always in flux. And I've come so far from the scraped-knee kid running through the mud, screaming at the top of their lungs, and more worried about holding her breath underwater than anything else. From the white-as-death children's hospital patient getting prepped for ICU and last rites. From the kid who couldn't talk to people, who didn't know if she'd graduate high school nonetheless college. From the kid I was when this all began, when my mom's aorta dissected, when a priest and a surgeon told me to say goodbye, when everything changed forever. From every other piece of glass in this tornado, big and little and fatal and biting.

Life is so short and precious and unpredictable.

Go somewhere. Love somebody. Love yourself.

Do what scares you. Do what inspires you. Do what moves you and grows you and changes you. Do the things you think you can't.

Prove someone wrong. Prove someone right.

I am being so real it's not even funny when I tell you: it ain't over until it's over.

Fight and live and love hard for every second you got. When you're short on time, you regret settling. You regret what you didn't do. (As my mom says, "it's only a cliche because it's so true we keep saying it).

As a hero once said, "Always keep fighting. Love yourself first. You are not alone."

My mother believes this. She still teaches me this. There's time for love and learning, still.

Yours

Being open about these struggles didn't make the problems go away, especially not immediately. Over time, however, changing the narrative to be proactive and self-researching worked in my favor - and a months later, we witness tangible (if subtle) change.

The days are long, her pain is bad, and sleep has become a larger and larger part of her day. We've had to get rid of a family dog for jumping on her fragile body, and the diagnoses pile up immeasurably. Even if fighting one were possible, the sheer abundance terrifyingly leave us all powerless. This loss is an inevitability - one that not anyone can truly come to terms with until it's over. I am helpless. It is terrifying.

However, the honesty of coming forward with this experience has brought light to how others are being treated by this company, how loved ones are advocating for their own family members, and most of all: solidarity with those who are familiar with grief and losing a parent, and can relate to something I was feeling very alone in.

Ultimately, my story is still unfolding, and it is as imperfect as I am. However, I will say - with conclusive confidence - that my takeaway is solid: if you need support, reach out. If you need to say something, say it. If you need help, ask for it. You are one person, and you are never as alone as you think you are in the recesses of your on mind, on your worst days, living out your worst fears.

You are human. You will need self-care. It will hurt, it will be frightening, some people will do just what you might be fearing: run away. In the end, though, the world will know exactly where you stand -- and the people who can handle that will step up to catch you when you fall, and be there for you when the worst day comes.

Don't lock it up.