So the number one thing I do in my life when I’m coping with or recovering from a difficult situation is ‘I use my words.’
I haven’t written regularly in a very long time, and much of the past five years, I haven’t written more than a brief blip about politics or religion here and there, whether on this blog or Facebook. I’ve written a little about the reality of what it was like to take care of my quadriplegic brother, but between not wanting to dwell on something I was still struggling daily with, and feeling like I was indulging in a damn pity party or fishing for compliments, I mostly decided to lay low.
I used to write compulsively when i was depressed, but something about the combination of physical, emotional, and mental exhaustion prevented me from being able to string together a coherent paragraph about my life, and while putting thoughts into the ether used to help me process and get over whatever emotional turmoil I was going through, writing about taking care of Jeremi mostly made me feel trapped.
Truth is, I love my brother, and that never stopped, even during the most difficult days, but an equally valid, yet far more difficult truth to write about and admit, is that I absolutely hated taking care of him.
And maybe that’s the crux of why I haven’t written much about it. It’s hard to admit that in spite of the fact that I chose to take care of him, I hated and resented it almost every single day. And eventually, I resented Jeremi as well.
The truth is, I’m not some spectacular example of self-sacrificial love. I never wanted to move back to this town to take care of him. I never wanted him to live with me. I never wanted to have to be the main person responsible for his care.
Steve had always dreamed of having J live with us later, but I never did. I grew up feeling like a horrible person because I used to hide out in the kitchen or bathroom eating snacks, because I knew if I went into the living room where J was, he’d want some of whatever I was eating, too, and he was likely to drool on me or bite me or choke and spit or vomit all over me, and I hated all of that.
I hated being stuck at home, of never going on a family vacation, never going anywhere as a family because it was so much work to take J with us that it was just easier for one able-bodied person to stay in the house with him, and everyone else to go on outings alone.
It sucks to love someone and resent them at the same time. I grew up feeling like a selfish, hateful, resentful human being. I grew up feeling guilty every day of my life because there was always something I resented that happened.
I felt like I never got quite what I needed because J took so much of the energy my parents had that there just wasn’t much left over for me. As a young child, too young to understand what was really going on, I just felt like he was the ‘favorite’ because he got most of what they had to give.
And all of that was before I was 12.
So fast forward 25 years and there he was. Sick and dying. My parents were also not in the best health and would have killed themselves trying to take care of him, and in my eyes, the only option was for me to uproot my family and take care of him.
But I didn’t want to.
Because I knew.
I knew there would never be enough help. I knew we were on our own, and that I wasn’t going to be able to do it all. I knew I was going to be miserable. But I couldn’t see a way out. I knew that if I said no, I really would be that awful girl who’d hidden out in the bathroom so she wouldn’t have to feed her brother a damn snack, except this time, he would die because of my selfishness.
Even knowing what I know now, having lived five years taking care of him and wishing most days I wasn’t, even having nearly destroyed my mental and physical health, and because of it, endangering the well-being of my family, even knowing that the best choice for Jeremi’s health was not the best for mine or that of my family…I’m still not sure I could say no if I had to choose again.
Because the guilt of that little girl is still there, and stronger than ever, thanks to the constant reminder of the past five years that I still can’t take care of him without feeling resentment, anger, and self loathing for feeling resentment and anger.
He’s moved out now. He’s happy, healthy and safe, and I am SO glad that is true.
But I’m not.
I’m exhausted and broken, and I’d love nothing more than to run away to Costa Rica and pretend, even if it’s just for a short time, that I have no obligations or responsibilities to anyone but myself.
I don’t know how to process 30 year old self-inflicted wounds, and I don’t know how not to hate the fact that I absolutely do not ever want to be the primary caregiver of another adult again as long as I live.
And here’s where the processing begins.
The truths is, if I had to do it all over again, if I had to make the same choice today that I made five years ago…
I would say no.
That little girl who hid out in the bathroom was a child.
It wasn’t her responsibility to take care of a brother who couldn’t take care of himself. We shouldn’t have had to be alone in the house in the first place.
Now understand me here. I’m not placing blame.
My parents did the only thing they could given the resources that were available at the time, and there are no good options in a situation like that.
But as the child who lived through it, I had a lot on my shoulders that I wasn’t equipped to handle, and that I never should have had to deal with in the first place.
I wasn’t a villain. And I was exactly as selfish as every other human in the history of mankind was at that age. I was certainly no more selfish, and probably a little less so.
Five years ago, it wasn’t my responsibility to nurse J back to health. I didn’t have to do it.
And had I been thinking clearly, I would have taken a more objective look at what my kids were going to have to go through.
They’ve lived the same life for the past five years that I had for my entire childhood and adolescence.
On some deep psychological level, I think I was trying to make up for what I believed were wrongs I had committed against Jeremi.
And I was trying to do what I’d been taught from a very early age: when it comes to family, you do what you gotta do. You make the sacrifices necessary to support family, even if it means destroying yourself in the process.
But when you have kids who depend on you, who rely on you to be the safe landing spot when they have a problem or crisis, who depend on you to help them know how much they mean to you, sacrificing your own health and happiness means that you also sacrifice their safe landing spot.
My parents did the best they could to support both of their kids, but the truth is, two people just don’t have enough energy and personal resources to support two kids’ physical and emotional needs when one requires most of their energy just to keep him alive.
It wasn’t that they were inadequate, it was that the load was too big for anyone.
And that’s the thing I didn’t realize until I lived it. My parents pushed past physical and mental exhaustion and burnout for decades because it was their child and there wasn’t anyone else to do it.
Steve and I did the same thing, but J wasn’t my child. I already had three kids, and they were taking up everything I had just on their own. I never had enough to give to J without sacrificing what my family needed from me, but I didn’t realize it until I was falling apart.
I’ve broken myself, physically and emotionally, and I’m working on picking up the pieces and starting again. I’ve learned some valuable lessons, but man, sometimes I wish I could learn things without having to go through hell in the process.
So the process has begun.
Wish me luck.