Ahead-of-time TL;DR: Shit is wrong and I can’t deal with it effectively without perhaps some violence to myself. WHICH I AM NOT PLANNING. Which is why I can’t cope. Meanwhile my sister’s life is hell, which is a huge reason I can’t cope, and I hope someone knows what to do.
I hope that maybe someone here has some advice. Right now there is nobody in my life I feel I can talk to about this without burdening them too. I’msorry to be burdening you guys with this. A couple years ago my sister was in a car accident that caused a previously unknown to us congenital defect to become symptomatic (Chiari-Arnold Malformation). She spent over a year being told she was crazy and making things up for sympathy before she finally was given a skull MRI which showed her brain literally falling out of her skull and into her spinal column. That year, she was working several part time jobs (one was UPS and they paid for her college), a junior in college full time for classical voice so that she could get a music degree to go to grad school and become a music therapist, and participating in a church ministry she and our mom had founded. She was an involved mother, she was busy about the community, she was performing with celebrities and a Mass Choir.
She used to come by my house to hang out before and after school, since my house is on the way. She started to miss school and spent a lot of time on my couch. By Halloween 2015, which was the last night she would ever sing an opera song (she could sing in 11 languages), she had basically moved onto my couch. After her surgery (early Dec), she recovered at my house until about March or April of 2016. We were really hopeful that the problems caused by the Chiari, like the headaches and the other results of her brain stem trying to occupy the same space as her spinal column, would go away. She was having trouble breathing and swallowing and being able to control her body. The surgery alleviated these things.
But new problems cropped up. Cognitive problems, memory loss, having to give up the guitar and the piano because she no longer had control of her fingers the way she once did. So she took up ukulele and basically taught herself between December and March how to play. She wrote some music. She was gonna make jewelry and sculptures until she could go back to work. Her neurosurgeon recommended that she go to the Cleveland Clinic, because they are experts in brain health. Her insurance was sure she didn’t need to go that far. By the time Halloween of 2016 rolled around, she was showing up at my house because she would get into the car to go somewhere and forget where she was going. She would call me to ask for details of things because she had forgotten them. To this day, she hasn’t been cleared for work and UPS couldn’t find a job that she could perform. She slowly began to lose hope that her life could go back to what it was.
Now, in February of 2018, she finally got her appointment to the Cleveland Clinic. Unfortunately, there’s a good chance that the problems she is suffering now are permanent because they weren’t repaired early. She had to go to the doctor so many times that finally, in desperation, I told her to tell her primary care physician to just refer her to the Cleveland Clinic and make a note to her insurance that the family will pay cash. I do not have $650 for a visit to this place but I very seriously looked into doing some unusual lines of work to make the money. Thankfully, her doctor sent her to a spate of specialists for all kinds of stuff and all these doctors, eight of them, recommended that she go to the Cleveland Clinic. Finally, she will go in April.
But now it feels too late. She can barely hold a pen to write for more than a few minutes because her hand is weak. Her fin motor skills are essentially gone so she can no longer make jewelry or sculptures. She can’t drive the way she used to, and she loves driving. Sometimes she can’t make sense of words people are saying to her, and sometimes she can’t think of words and must circumlocute to get her point across. She can’t read thick books because she forgets what happened before, and her memory has become so bad that while I was helping her fill out paperwork for disability (which rejected her, of course), sometimes I would be transcribing her answer to a question and then she would simply begin to say the same answer again, not even realizing that moments before, she had just said the same thing. She has begun losing control of her legs, her body forgets to breathe at night so she needs a CPAP, and so on. She’s only 37 years old.
I have spent the past four years watching my sister’s life and sense of identity being dismantled piece by piece and seeing my family try to cope, watching my 15 year old niece wilting under the knowledge that her mom may very well end up in an assisted living home before this year is through. I can’t do anything to fix this. What if the Cleveland Clinic can’t do anything? My sister has never been one for being suicidal (that’s mostly been my demesne) but the things she says are redolent of defeat. She can’t even find any comfort at church, where people assume that if she manages to put on makeup and dress herself and not spazz out in public, she must be fine. Today she fell because her hip just decided it wasn’t gonna do any work I guess, and a lady from church approached her as she was crying and said “Well if it hurts so much why don’t you go home? I’m just saying, if it’s that bad...” This lady doesn’t know that no painkiller in my sister’s possession is going to make my sister’s hip stop hurting. She doesn’t realize that once my sister goes home, she’s going to feel like it’s back to the every day life of feeling trapped in our parents’ house where her hip will still hurt. At least at church, she is able to see friends and just be out for a while.
I’ve been keeping records of my sister’s symptoms, googling stuff, emailing neuroscientists, reading scholarly papers and going to doctor’s appointments with her, and all of that since 2015. My burden is not bigger than hers, by any measure of anything, but I don’t know how she is even managing. I feel suicidal a lot lately, because I can’t do anything but watch my sister become a prisoner in her own body. I can’t fix things for my niece or my parents. I know that maybe the Cleveland Clinic can’t fix anything and that fills me with even more dread. I think a lot about cutting myself just so that I’ll stop feeling anything about anything and can be more effective in my everyday life, but I feel like that will land me in the hospital and create a further burden on my family. At the same time, I have pressures in my own life too and while they are nothing like my sister’s problems, they just pile on, making me feel paralyzed. But I feel so selfish thinking of myself. I can hold a pen for hours. I can walk without burning pain and loss of muscle function making me fall. I remember words and understand words other people say to me.
I just can’t cope any more. People say things that they think are helpful but sometimes those things, I don’t know. Those things feel like spitting into a hurricane. I love my therapist but all the breathing exercises in the world can’t stop this feeling that I’m just hanging on the edge over some abyss. I’m only not planning my suicide right now because my brother already died way too young and very soon, I will be my niece’s sole functioning parent, and I know she needs me. I read you guys’ stories on here though I don’t comment a lot because I can’t say anything adequate to the situations I read about. How do you keep going? How do you hold it together when the world has its hands in your chest ripping out your heart and squeezing your lungs? I’m seriously considering taking up heavy drinking. Thank you and I’m sorry.