The End

Edited to add: This is a morbid and somewhat graphic post. Move on if you can't handle it.


I'm typing this from my Mom's room at my Grandma's house. I'm sitting in a white plastic chair, with a purple and green and blue afghan over it, next to her bed as she lies next to me sleeping. Her bed was removed from her room yesterday and replaced with a nursing home style bed, one that moves up and down, because she wasn't comfortable anymore.

I keep having people trying to warn me, trying to comfort me, trying to make me understand things. They think I don't understand this, that I don't understand that this is the last leg of my Mother's journey. How could I not? Her skin clings to her bones, stretched thin at some areas, sagging up in others. Her breaths are longer, much more drawn out that any normal sleep breath pattern should be. She has tubes attached to her. One for the colostomy, one for stomach contents, one for urine, one in her nose for oxygen. Tubes everywhere. She can no longer move with ease, and sleeps more than anything. She does not eat, sustaining herself on water and pop because it is what she wants. Of course I understand this.

What I don't understand is why I'm not supposed to grieve in my own way. My grief takes the shape of action. I think people think I'm in denial, and I'm not. I've known since her diagnosis 25 months ago that my Mother wouldn't get old and gray. I've known since then that even with all the luck in the world, cancer would eventually take her. There was a year where it didn't look that way, when it looked like maybe she could come through it. Then that stopped as the problems started mounting. As much as people don't believe me, I have been through this before. I've seen two of the most important people in my life whittled down to nothing, turned into living corpses. They were eaten by age. My Mom has been eaten by cancer. Throughout this whole thing I've talked with her doctors, done my own research, and talked with my Mom too. I've known the entire time exactly what is happening. I know how it works, and I know what the end looks like.

I think that people don't understand how I am still living my life. That they don't understand that I have to live my life. I can't just be here every second of the day, watching my Mom die. I don't know how to do that. Even if I did know how to do that, I have my own baby to worry about.

About a year ago (I think, timeframes are getting fuzzy) my Mom and I had a huge talk. It was about three hours long, maybe three and a half. There was yelling, there were accusations, there was crying, and hugging and love. We talked about everything we could think of. She told me, "When I die I don't ever want you thinking that there was something I couldn't forgive you for. I don't want you eaten up with guilt about anything. So let it out. Tell me why you love me, tell me things that make you angry, tell me what you don't understand. I want to have this conversation so that you can come back to it when I'm gone." And we did. It was heart-wrenching and awful and beautiful. My Mom and I acknowledged, to each other and out loud, that that was out Big Goodbye. Later, a few months ago, she was at the hospital. I can't remember if this was for the colostomy bag or for a talc pleurodesis, but it was for one of them. And I sat in her hospital bed with her, and she started crying. Violent sobs from my Mom's lips, and desperate effort to stop them. I hugged her, held her head on my chest as she cried and stroked her hair the way she did for me as a small child. We sat for an hour or so. When she was done, she lifted her face to me and said thank you.

At both of these occasions she made me promise on Emily's life that I would not let her cancer kill me too. That I would keep going, keep laughing, keep having board game nights and movie marathons and that I would keep moving forward. She told me, both times, that the only thing she wouldn't be able to forgive is if I let my life end because hers ends.

I think what others don't understand is that I have been grieving. I don't grieve as others do, I don't sob uncontrollably or go to group therapy or have lengthy discussions or anything. I accept things for what they are and have a quiet grief that rears its head long after whatever is happening has happened. And when it rears its head it is not in a way that people can identify as grief.

Here, next to my Mom, I can be honest. I've never had to pretend in front of her, never had to try to be someone I'm not. I'm not the typical perfect daughter, and she never wanted me to be. I am her perfect daughter, blunt, tactless at times, stubborn to a fault and compassionate. I am strong. She taught me to be. Right now next to her, I can cry a bit. I can let her know that I am heartbroken. That day at the hospital she told me she was beginning to leave. I knew it, and I was surprised that she knew it. Now, there's only a glimmer of her left and it only appears sometimes. I am not cold-hearted or in denial. Rather, I am trying to keep the memory of my Mom, of Patty fucking Higgins alive. I am trying to remember what she used to look like, what she's taught me, and how she wants me to live my life. I am trying to fuck cancer in the ass, to beat cancer with my love for my Mom. Yes, it is killing her. No, her body will not be with us for much longer. But she, her essence, herself, has been slipping for a few months now. I feel like very few recognize that, and that they take what I'm sure is seen as a flippant attitude from me as some sort of juvenile refusal to recognize what is going on. It's the total opposite.

I know exactly what is going on. I know that I'm already dreaming about her, that in my head and in my heart she is alive and laughing. That part of her is already on the other side and that the part of her that isn't should be. When I am here, I have to see a part of my Mom that she would never want me to see. I am here because it is important to hold her hand, to touch her hair, to touch her skin and to tell her I love her. Not because it makes her hold on, but because maybe it can help her to let go.

With all of my badassery, my toughness and stubborn ways and strength, I am heartbroken. I've been confronted with a world without my Mom in it for a few months now and frankly, I don't like it. But what I don't like more is knowing that she is lying here, struggling for breath. I am in no way ok with this life, for a life without my Mom on the other end of a phone line laughing at me or telling me which whiskey is best or crying with me over a book. I am terrified about the next several years. My heart is in pieces when I think about it. I don't want a world without my Mom. But. I would never dishonor her or disappoint her by denying what is happening.

I think this is the worst part for me. She is the one who has always told me that it is ok to be me, that it is ok to struggle in my own way, that it is ok to loudly be who I am. She has told me when I have called her, crying because a majority of my life is spent feeling inadequate, not good enough, like I don't measure up to expectations, she's told me that I only have to live up to my own expectations and no one else's. I hope and pray that twenty four years of her telling me that will get me through the rest of my life. But it beats me down a lot when I feel like others don't understand me. It doesn't change me, but it hurts me. I am not like most people that I know and she's always been the one who thinks that that's the best part about me.

This post is disjointed and rambly, probably full of grammatical errors and too many commas. And now, in the privacy of my Mom's room, I can cry a little. Just a little. I don't understand why it is wrong to live fully, even though she can't. Her words are the words that ring in my head. And now, she can't remind me that I know what to do, that I have the tools and the strength to be myself fully and that I shouldn't bend to expectations that don't work for me. I'm having to tell myself those things. I'm fortunate to have a couple people around me to talk with, people that know me far better than some that are claiming some deep-seeded relationship with me because they knew my Mom thirty years ago, better than those who think I should act a certain way because that's How We Do Things. These people are my rocks.

I don't think it's wrong to want her out of pain and misery, and I don't think it's wrong to try to keep Emily's life as stable and happy and cheerful as possible. Emmy talks about death every single day. Today she told me that Gramma sent her a message in her heart to play with her hula hoop. She's dragged it with us everywhere today. That lifted me up so much because I know that I am doing it right.

I need this post to end.