'A little over a year ago, my stepfather chose to keep my sister alive. Today he is sending her to a full-time care facility.' UPDATED
"A little over a year ago, my stepfather chose to keep my sister alive. Today he is sending her to a full-time care facility."
TW: traumatic description of brain death
My little sister was in a serious car accident October 2020, she broke too many bones and it released fat into her blood stream. The fat collected in her brain and deprived it of oxygen. It's called Cerebral Fat Emboli, yeah I had never heard of it either. The scan they showed us looked like her brain was just full of big white spots. She was 17 at the time.
One doctor told us- "her brain is incompatible with life" among other things, but I remember that line specifically. it was stark and cold, but it got the point across and I believed him. My step dad and mother took it to an emotional level and acted like they had been insulted when we reflected on the conversation.
Another doctor gave his opinion- this doctor walked into a room with my sister's beaten body, my step father, and my mother- noticed my step dad's Trump hat and made a joke about him needing to win.
I remember yelling but I don't remember what I said. I was angry that anyone could even crack a smile at that moment, none the less make jokes, none the less make freaking political jokes.
He told my step dad who had control over the decision to pull life support or not "we just have to pray, if this was an older woman- then I would agree to pull the plug, but I have faith that she can get through this. I can feel it."
I didn't believe him, I don't believe in God, but I did get a glimmer of hope that hadn't been there before. My step dad went full force belief that she would fully recover. She had to be resuscitated two more times that month. My step dad still chose to keep her on life support. Eventually she started breathing over the ventilator.
When she finally opened her eyes a few months later. I realized we had made an awful mistake, she was not there at all; her eyes always looked through me- her muscles stayed tensed and her arms tight to her chest. Always. It looks so painful when I feel her arms. She always had a grimace, she sometimes twists her face into a silent wide eyed scream. Her face stays wet from tears.
She was the most important person to me, I loved her with all my heart. Her and I had been through too much and helped each other navigate life. She was beautiful, intelligent, and amazingly creative. The singular person I never expected or prepared myself to ever lose. And now here she was, all her vibrancy and life trapped inside this corpse.
My step dad stayed with her at the hospital till the day he brought her to his home. He got his living room set up like a small hospital; he would bring her to a day care once in a while and they say she has "friends" there.
Anytime I think of her, it feels like my heart is going to vomit out of my throat the pain is so deep. This would be so much easier to handle if I thought she had moved on; but my soul is crushed at the thought of her having an inkling of consciousness in that body, and even more- I can do absolutely nothing about it.
Today I found out he is sending her to a full time facility because she has made no progression and they are starting to think she will not actually recover. My mother seems relatively unphased, but I find it impossible to not see the depth of this moment.
The choice he made to keep her alive, and now she will spend the next 50 or so years trapped inside a shell, staring at the white walls of a building full of strangers, seeing the occasional familiar teary face.
Unable to express the violent boredom she feels, if she can even understand what being bored is- maybe she is just screaming in her mind, endlessly tortured by her confusion. An everlasting hell.
Here’s what people had to say to OP:
I am truly sorry that this happened to you and her. My grandfather had Alzheimer's and the condition he ended up in made me understand the value of quality of life. I didn't cry when he passed away, I cried while he was still alive because he was unable to move or communicate.
Eventually, he got to the point where he couldn't even swallow. So when he passed away, I felt like he was free from a body that he was trapped in. I understand how you feel.
We would not even do that to animals we love.
Subushie (OP)
I can't tell you how many times I've screamed exactly this.
Over a year later, the OP returned with an update.
I see her face in young people and it hurts. I need to vent this. Whenever I meet young adults that were her age when the accident happened, I feel protective and sad. I feel like Im seeing my sister again and I hate it.
For context, about 3 years ago my sister was in a serious car accident at 17. She finally passed away 8 months ago after 2 years of suffering, stuck in a broken shell.
I can be out sometimes, and my friend's sister will come hang out; I love her- but I get weird and sad almost every time. I feel like I need to give her advice, like I need to make up somehow by passing off what I have learned that I couldn’t show to my sister. I do my best to stop myself, because I know it must be annoying, and because I annoy myself with it.
We also have a family that we're close with and their little girl reminds me so much of LeAnn. She's smart, witty, creative, ambitious. Everything my sister was. She tells me about how good she is doing in school, and I get heart broken; then I get angry at myself for being so selfish.
The nights after I see people like this- I always end up sobbing when i'm alone, I feel like I need to vomit my heart up. I think about all the life LeAnn missed out on, relationships, breakups, friendships, discussions, realizations, the grief, the loneliness, the rage, the love, the boredom... so much boredom.
She'll never experience any of this that makes life so beautiful and so terrible, that we all take for granted; and I missed out getting to watch her live it. I see her absence everywhere.
Nearly two years later, the OP returned with another update.
I woke up the next morning to a call from my friend. She invited me to a bar for some drinks with our group and I reluctantly said yes. It was a beautiful sunny day, we sat on the patio, had some beers, laughed, walked around the bayou, enjoyed the breeze- I felt alive again for the first time in a long time.
I remember the last moment of that day still so vividly; I was sitting by the water thinking I only had 2 letters left and it came to me:
"I would have missed this..."
That thought changed my life.
I've since made a solemn vow that I am going to stick it out untill the end, for better or worse.
After that day- I joined the GriefSupport sub along with other support groups and got a therapist to help navigate the tremendous pain I was experiencing. Later I started commenting on posts in the support subs to give insights on my experiences. I hope I have helped some people by sharing my thoughts and what I have learned.
Now, I am at a phase where I feel like I am plateaued in my recovery and seeing some of these posts (in the support subs) are forcing me to relive darker days that I don't want to anymore. Making me realize something- I no longer need grief support.
This realization feels like major milestone for me, that I finally see myself as stable enough to no longer need the encouragement and advice these communities offer. And not only to me- but the stories, support, and love you have given eachother has also been a boon in my journey.
With the new year I wanted to write this post for myself as a marker, to say a goodbye to this sub (GriefSupport), to thank all of you for your stories and your compassion, and to leave some parting thoughts of hope, for any of you that feel a connection to where I was a few years ago:
Things will get better.
I know it is cliche, but if there is anyone you can trust those words from- I would think it is me.
Something I've learned and try to share often: This grief you feel will never go away, it will never get "smaller". But, you will grow bigger around it and you will become more because of it.
Know there is hope. Right now very well may be the worst part in your life and we know that nothing can ever be the same without them. But If you take things one day, sometimes one step, or even one breath at a time. You will experience good days again, you will feel love again, you will be happy again.
Life is a painting- any beautiful painting needs dark colors as well as bright colors, but it has to be completed. These dark days will make your future bright days all the richer and more vibrant, but you have to fight through this to see them. I'll be happy if even one person reads this and takes away the most important lesson I nearly didn't get a chance to learn.
Don't miss the rest of it.
Here’s what people had to say to OP:
I always tell my kids to be careful, because there are things worse than death.
I work as a CNA. I know first hand.
I commend OP for surviving all that. I'm not sure I would have.
There is a villain and it was that doctor. He should lose his license for bringing faith and prayer into that situation.
This is just awful I get wanting hope and worry of the wrong decision. I wouldn't even know which option go with. I get wanting them to pass in peace but that still I don't know If I could ever do something like that. Just an awful situation, at least OP is doing better and her sister is at peace.