Twenty-five days without you, Mom. I'm still figuring it all out. I don't have a better handle on it today than I did a month ago; I feel pretty much the same. The thing I never really understood about grief until now is how fluid it is. Someone told me (I can't remember which kind soul told me this, but it's true) that grief is a lot like sitting on a shoreline. Like water lapping at the sand, grief kind of washes over you from time to time. Some days I'm okay, some days I'm not. Some days I THINK I'm okay, and then a wave sneaks up on me and the next thing you know I"m pulling the car over on the side of the road and crying in the Bean Town parking lot.
Today I feel like talking about the alone part. Mom wanted to travel this path by herself, with only my dad, my brother and I walking alongside her. When she woke up one morning and couldn't swing her legs out of bed, Dad had to call the ambulance to come get her. She worried and worried about what the neighborhood was going to think. She preferred that any perceived weakness, physical or otherwise, be handled privately. So we did it all ourselves: trips to Mayo in Mankato, intake at Lutz Wing, therapy appointments, scans, tests, diagnoses, daily life. We did it ourselves, and it was okay. More than okay. I've been thinking a lot about that lately.
Technology today has provided front-row access to witness the lives of our friends and family at really every level imaginable. Some people crave the connections to others; they update their social media regularly and let people become part of their experience. I admire that; transparency on that level is a scary thing to me, and I'm always in awe of the people who can express that to the world. I wasn't really raised that way; the model I grew up under was very private when it came to personal stuff. I don't think there's a right or wrong, I think you do what works for you.
We did what worked for us. From the day my parents left their hometown and struck out on what would be a journey to four more cities and six more houses, we were pretty much on our own. Both of my parents came from the same small town; they both have siblings and I have a whole lot of cousins. But once we left Salem, we only visited a few times a year and only a handful came to us. I can remember packing up houses alone, moving into houses alone, and countless holiday and birthday celebrations that had exactly four attendees. This isn't a sad thing; let me clarify: it was exactly right. The few times I can remember big family reunions, there was always an undercurrent of chaos that never really felt right; like visiting someplace fun but not wanting to live there, if you know what I mean.
Mom had her own personal reasons for keeping us tightly together. I feel certain that I understood my mother on some pretty deep levels. Some things she told me, some things I just figured out on my own as I grew up and learned the extended family dynamic. Mostly, I think Mom wanted our family and her love for us to be at the very center and core of our beings. She wanted us to never doubt it; to never wonder if we were loved or where our place was in the world. No matter what came our way, what mountain there was to climb, we would always have her and would have each other.
That doesn't mean we always got along...! Mom was a strong personality with an unwavering sense of justice. She knew the difference between kind and unkind, between right and wrong. As my brother and I grew up there were the usual teenage battles; our struggle to be fiercely independent vs. her will to make sure our independence didn't come at the cost of our morality. The thing is, I could have a knock-down, drag-out fight with my mother and even when we were the most angry, the most hurt, or the most frustrated with each other, there was absolutely NO QUESTION about the love part. I don't think Mom always felt that herself growing up, and she was going to be damned sure that my brother and I didn't grow up that way.
I think that fierceness with which we love each other, the four of us, was born from the tight family unit they made for us growing up, and the way that being alone, just us, was always made to feel exactly right. We had each other, always, at the end of the day. And at the end of her days, she knew how she wanted to spend them.
I know that some of our family and friends do not, can not, understand the decision we made when it came to traveling this journey privately. The thing is, we traveled our whole lives together privately. Everything about it felt right; it just was.
And now that she, the sun around which we built our lives is gone, I think the hurt in my heart and the profound hole in the center of me, is just the price I have to pay for being loved like that. She loved us so much, she loved me so fiercely, and I have always known it. No matter how much it hurts to be without her right now, I would not trade it. I would not. Sometimes, when I feel like my edges are coming apart and my threads are unraveling and I feel like I'm wandering around without a compass, I just ask myself: would I have wanted this any other way? No.
If we had made the calls earlier, told the whole world what we were managing, we would undoubtedly have been surrounded by dozens and dozens of friends and family trying to help us carry the burden. We have felt so much love and support since Mom's passing, I have no doubt in my mind that we would have felt that love and support all along. But in our case, doing it together, alone, was the way it had always been, was the way that it was and the way we needed it to be. I know now that I couldn't have navigated Mom's illness the way I did if I had been also making time for extended family and for the hospitality I would have wanted to provide them and at the level Mom would have wanted for them.
Somehow Mom knew that this was a path for us alone; I would not have wanted to spend even one second less next to her bed, holding her hand, telling our stories, watching television, eating lunch. I would not have wanted one single second to be spent calling people and explaining things, and entertaining company and putting on my company manners. It may have been selfish of me, but I got to have all of her minutes. All of them. I'm so lucky.
Mom asked for this, she said so many times that she didn't want us to make any phone calls. I felt a little guilty at the time, but I see now what that was. I wish I could thank you for it, Mom. It was your last gift to me. I wouldn't trade those 37 days for anything in the world.
August 25, 2016
August 4, 2016
The Journey (Part One)
**Because writing is my personal therapy, I spent a great deal of my summer jotting down thoughts and feelings as I navigated my mother's illness and what I knew was ultimately going to be the outcome of it. I left everything jumbled; it is a mass of scattered moments, thoughts and feelings, out of order and unedited. There are pages and pages. Rather than spend time sorting them into coherent blog entries, I will post them as is, one at a time, as I feel ready to put them out there. Please excuse my formatting; even my English Teacher Self is out of energy. This is more authentic anyway.**
Why is it so difficult for me to put words on paper when I am going through hard things? When life is good, words seem to flow easily from my fingers. When I am faced with tragedy; with stress and struggle, I sit and stare endlessly at a blinking cursor on a white screen. This summer, begun with such lightness of being, evolved into the most difficult summer of my life. And many days I sit, in front of the blinking cursor, staring.
I am losing my mother this summer. I am trying out that sentence, trying to make it feel like it belongs to me. I don't feel like I have lost her; I can't really even imagine it to tell you the truth. But I am losing her, actually, as I write this. I'm sitting in her room at Lutz Wing, in a pink corduroy recliner with my laptop open. The Mentalist is playing on the TV because Mom loves that show. She is alternating between sleep and awake, unable to talk to me, but still able to look into my eyes and curl the edges of her mouth slightly into a smile.
It's called Creutzfeldt-Jakobs Disease. At least, that's what the neurologists think it is. It's awful. I can't elaborate at the moment...that post was days ago and I still get mad when I read it so I will just let you Google it if you are interested in the details. Let me just say that it took first her balance, then her mobility, then pieces of her memory and then her speech. It hasn't taken her yet, but I know that is coming, and probably soon.
I've said all the things I needed to say to my mother...though I have to mention that I needed to say very little. The beauty of this whole experience, while hard to see sometimes through the pain of it, is that all the things that I needed her to know, she knows already.
I talk to Mom every single day of my life; I have for as long as I can remember. She knows all my stories, usually right after they happen. She knows what our routine looks like, what we had for supper, what story I read at bedtime or what argument I tried to mediate throughout the day. There is nothing that we have left unsaid, nothing left undone. I was lucky enough to share a bond with my mother that I know without a doubt is rare and unbreakable.
That's probably what is keeping me going at this point. From diagnosis to today, we have only weathered this storm for 33 days. It moved like wildfire through my mother's body, and there are moments when I can't believe how much has happened in such a short time. But even though every single one of those 33 days has been met with new challenges and limitations, we move through them more easily because of the deep bond forged over the entirety of my 41 years.
I know my mother on levels I can't even describe; she gifted me with insight into her childhood, her own life's challenges, and her personal dreams and ambitions on a regular basis. She was private to the world; she was an open tapestry to her family. As my brother and I sat with her one night in the hospital, telling stories and reminiscing with her, it occurred to me that our little family unit is interlocked so tightly together that nothing, not even death, will loosen those bonds.
I look back at some of the things I have been writing this month; lots of them are too hard for me to read. I think all the stages of grief can be found scattered throughout the entries. I am not sure yet which ones I can post, which ones I can say out loud. Maybe some, maybe none, who knows. I will let my conscience be my guide I think...they will tell me when they are ready to be told.
In the meantime, tonight I just hold my mother's hand in mine, look into those wide eyes and wait for tiny little twitch at the corner of her mouth that shows me her smile. She is preparing for what is next; I am learning how to exist without her voice. I am learning that I don't actually need it; she is in me already. I can hear it in my heart. It beats steadily in my chest, the strength and certainty of her love for me. For today, that is enough.
Why is it so difficult for me to put words on paper when I am going through hard things? When life is good, words seem to flow easily from my fingers. When I am faced with tragedy; with stress and struggle, I sit and stare endlessly at a blinking cursor on a white screen. This summer, begun with such lightness of being, evolved into the most difficult summer of my life. And many days I sit, in front of the blinking cursor, staring.
I am losing my mother this summer. I am trying out that sentence, trying to make it feel like it belongs to me. I don't feel like I have lost her; I can't really even imagine it to tell you the truth. But I am losing her, actually, as I write this. I'm sitting in her room at Lutz Wing, in a pink corduroy recliner with my laptop open. The Mentalist is playing on the TV because Mom loves that show. She is alternating between sleep and awake, unable to talk to me, but still able to look into my eyes and curl the edges of her mouth slightly into a smile.
It's called Creutzfeldt-Jakobs Disease. At least, that's what the neurologists think it is. It's awful. I can't elaborate at the moment...that post was days ago and I still get mad when I read it so I will just let you Google it if you are interested in the details. Let me just say that it took first her balance, then her mobility, then pieces of her memory and then her speech. It hasn't taken her yet, but I know that is coming, and probably soon.
I've said all the things I needed to say to my mother...though I have to mention that I needed to say very little. The beauty of this whole experience, while hard to see sometimes through the pain of it, is that all the things that I needed her to know, she knows already.
I talk to Mom every single day of my life; I have for as long as I can remember. She knows all my stories, usually right after they happen. She knows what our routine looks like, what we had for supper, what story I read at bedtime or what argument I tried to mediate throughout the day. There is nothing that we have left unsaid, nothing left undone. I was lucky enough to share a bond with my mother that I know without a doubt is rare and unbreakable.
That's probably what is keeping me going at this point. From diagnosis to today, we have only weathered this storm for 33 days. It moved like wildfire through my mother's body, and there are moments when I can't believe how much has happened in such a short time. But even though every single one of those 33 days has been met with new challenges and limitations, we move through them more easily because of the deep bond forged over the entirety of my 41 years.
I know my mother on levels I can't even describe; she gifted me with insight into her childhood, her own life's challenges, and her personal dreams and ambitions on a regular basis. She was private to the world; she was an open tapestry to her family. As my brother and I sat with her one night in the hospital, telling stories and reminiscing with her, it occurred to me that our little family unit is interlocked so tightly together that nothing, not even death, will loosen those bonds.
I look back at some of the things I have been writing this month; lots of them are too hard for me to read. I think all the stages of grief can be found scattered throughout the entries. I am not sure yet which ones I can post, which ones I can say out loud. Maybe some, maybe none, who knows. I will let my conscience be my guide I think...they will tell me when they are ready to be told.
In the meantime, tonight I just hold my mother's hand in mine, look into those wide eyes and wait for tiny little twitch at the corner of her mouth that shows me her smile. She is preparing for what is next; I am learning how to exist without her voice. I am learning that I don't actually need it; she is in me already. I can hear it in my heart. It beats steadily in my chest, the strength and certainty of her love for me. For today, that is enough.
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