Warning: this post is a bit gloomy and bordering on "a little too personal to share on the Internet," but I have reached a point where I feel like I need to reach out beyond my immediate community, for my sake (catharsis) and my mother's (maybe someone out there has a new idea).
For the last 6 years, my mother, who is also my best friend and the one person who I have always been able to count on, has been living on her couch, writhing and moaning in pain. That sounds extreme. Because it is. When she first fell ill, her doctors thought she had the dreaded "Shingles" and I remember her crying because someone had told her that it could last as long as a year. But a year quickly came and went, and she didn't improve. She got worse. Her pain spread beyond her torso, where it had started and moved to her hands, which swelled to comically large proportions. Her hands... she'd always said she could take anything-- the loss of her legs even, but not her hands. She's an extraordinary knitter, seamstress, cook and gardener. She's the most well-read person I have ever encountered, hungrily reading two, sometimes three, books a week. But without the use of her hands, she could do none of those things. Not a single one of the things she most loves to do was within her reach (literally and figuratively). It was at this time that she began to slip away. She started to transform from the person in my life who could literally do anything she tried well into a person who could do nothing but lay, uncomfortably, on her couch and watch endless hours of television-- old, scratchy, black and white movies to be exact.
During the early years of her illness, I was always hopeful. I was sure something would magically make her better and bring the woman that I so looked up to back to me. We would one day cook together, the way I'd always thought we would. We would make things and do things and I could show her the world, the way I thought I would one day when I was able. She would come back and all this would be a bad, distant memory.
When I got married, three years ago, she was really in very bad shape. She said on more than one occasion, "I wish you would wait so I could get better and enjoy the experience of seeing you get married." Of course, I couldn't wait because who knew how long it might take for her to improve to that degree. But she would get better... certainly by the time I started having kids and she would be the most perfect grandmother. She would play endlessly with my children and support me the way I've always needed her to-- guiding me gently and without judgment. I imagined her in the delivery room and coming to spend weeks at a time to help me get my bearings, cooking for me while I recovered, knitting the most beautiful baby clothes. She would be better by then, for sure.
Now, I have two children and she's not better. She wasn't in the delivery room and she's not been able to spend more than a few hours over the course of the last two years at my home. And it wasn't her helping me. It was just her trying to appear to be a participant in her own life. She can't hold the babies for more than a few moments, without being overtaken, again, by the pain. She can't handle the stress of my toddler wreaking havoc, as they do, all around her. It's too stressful to bear. My visits to her house are short, stressful and utterly heartbreaking because somehow, I still go to her with a tiny glimmer of hope that each time it will be different: that she will be able to get down on the floor with Addy and play for hours; that there will be a pot of something cooking on the stove; that she'll show me something she's made for one of them (this has happened... just once. She recently completed a tiny pink baby sweater for the girls. It took five years, but it is the most beautiful thing I have ever seen in my life. I show it to everyone who comes over, beaming with pride. My mother, my amazing, wonderful, talented-to-no-end mother, made this!).
Of course, everyone always wants to know: what's wrong with her? Well, unfortunately, the answer is pretty unsatisfactory to most people because it's elusive and intangible. It's not a disease that's easily classifiable. There's no tidy explanation. We've found that people have a hard time when the can't put a recognizable name on things. In the beginning, they tested her for everything. There were litanies of tests and doctors and specialists and alternative medicine practitioners all trying to come up with an answer. Lyme Disease? Lupus? HIV? Cancer? Autoimmune disorder of some kind? None of these fit the bill. No treatments worked. The specialists eventually got frustrated and slipped away, defeated. The doctors tried what they knew to do and when everything failed to bring her some comfort, there was nothing left to try. Now, she has her one neurologist who is very devoted, but out of suggestions. So, after more treatments and surgeries than we can count, her only treatment consists of handfuls of narcotic pain relievers that make her days as close to tolerable as possible. That's just enough to keep her from putting a gun to her head, but she can't go anywhere or do anything. She can't drive. She can't be away from home for more than a hour or two. Ultimately, her diagnosis is this: somewhere along the way, she contracted a vicious virus that attacked her nervous system, leaving her tender nerves badly frayed and incapable of transmitting normal signals to her brain. So, her whole body hurts... all... the... time...
As an pretty unhappy side note to her main complaints, her teeth have begun to rot out of her head. All the pain-induced vomiting and the stress-induced grinding have taken their toll. Human beings are funny. I think that if she felt pretty, she'd have a little more power over this thing. But she looks into the mirror and all she can see are those yellow and brown teeth. She's a beautiful woman, but she's atrophied and withered away. Her teeth are almost hard to look at at. Her hair has thinned. And her already fair skin has grown transparent from lack of sun. She's a broken version of the woman who raised me to think for myself, take pride in even the smallest of my accomplishments, to be bold and independent. She's weak, tired and finally, utterly hopeless.
What does that mean? Well as hard as it is for me to write this, it means that she's contemplating ending her struggle, her life. When she first began to talk of suicide, I used to cry and beg her to stop being so cruel to me. "How can you say that you have no reason left to live?" I would ask angrily and indignantly. I couldn't understand what she meant by, "no reason left to live." She had me. She had my children. She had the world's most devoted husband and a mother who doesn't deserve to see her child die. She can't give up, I would think. There's got to be another way.
Now, I just don't know. Now, I can see what she means. While she has me and her grandchildren and her husband and her mother, she can't enjoy any of us. She looks at her life for what it could be and not for what it is and the only thing more painful than those frayed and failing nerves is the reality that her life may never improve. And of course, her question then becomes, "how long can I go on like this?" It's already been six years. SIX YEARS. I can't even believe it's been that long. I couldn't do it. I couldn't spend six years on the couch in agony without knowing when the end would come.
My family is moving to Europe. I am going away and I won't be there for her. That's the hardest thing in my life and I can't reasonably and authentically write about life in the Foreign Service without addressing this aspect of it: you leave everyone behind, which is difficult even when everyone is healthy, happy and well. A day doesn't go by without me wondering how I am going to feel someday about having been so far away from my mother in her darkest hours. I imagine many folks in the FS have similar concerns. It's really the dark underbelly of this great adventure.
Anyway, she may be without hope, but I'm not. I am still hoping that something, someone, might come out of the mist with a new idea, a new suggestion, that will change everything and make all of this seem like a terrible, distant nightmare. Because I want my mommy back more than anything in the world.
