I haven’t written any posts in quite a while, and it wasn’t a planned break. It wasn’t anything traumatic that stopped me, or perhaps, depending on the perspective I take, it was a whole season of trauma. I am always full of contradiction.
Sometimes I tell people it’s all physical. I tell them that my emotions are currently unbalanced because my hormones are currently unbalanced. Other times I say that that my hormones are unbalanced and I experience varying types of chronic pain because of my emotions; I have a genetic predisposition to depression and anxiety, that, when coupled with many traumatic experiences interspersed across my lifespan, created a recipe for a body and mind that are more decrepit than the number of my years would normally determine.
But in my own private thoughts, I am dying.
Before I get concerned comments and emails, I am not revealing a cancer diagnosis or a death sentence or a desire to commit suicide. There is still no medical diagnosis, root cause, or overarching explanation for the pain I experience, mentally and physically. That’s what offers me the opportunity to alter my description of my physical and mental insufficiency. There is no name for this, and that seems to lend itself to a certain amount of poetic license.
A few months ago I found an old, tattered copy of Little Women. It was a relic I’d saved from childhood that came from a thick plastic zipper-bag one year for Christmas, ordered by my mother from my Scholastic Book Order. I received it along with many other childhood treasures, most of which were more precious to me than Little Women. Heidi and The Secret Garden and Anne of Green Gables are all still around somewhere too, and these three each experienced multiple readings over only a few years’ time. But Meg, Jo, Beth, and Amy sat on my bookshelf for a number of years before I had the courage to pick it up, and even then I’m not sure that I finished it. Coming-of-age stories were always a favorite, but I had a hard time relating to any of the four sisters, and the length of the book itself was daunting. Yet I understood its value enough to keep it.
When I found it again a few months ago I was eager to read it, and I did. I stayed up late to find out if Meg’s marriage would survive, despite realizing that Alcott’s perspective was way too optimistic for it not to. I grew frustrated with Amy’s selfishness and materialism, rolling my eyes at her as if she were my own sister. And of course I skipped ahead to see whether Jo and Laurie would end up together. What surprised me most, however, was that, at 37 years old, I did feel a connection with one of these young girls, even though she was perhaps the youngest at heart. I began to feel like Beth.
While the other sisters grow and change, Beth seems frozen in time, growing in knowledge and character, but not in ambition or striving. She’s happy to learn the womanly arts designated to her sex and rarely complains, but also shows great talent at various artistic endeavors, especially music. She never seems childish, yet plays with dolls well into her upper teenaged years, when her sisters are “coming out.” What I related to, however, was her illness. I couldn’t put a finger on why I felt such affection for her until late in the story, when she finally confesses to Jo that, even without an obvious medical condition, she knows that she will soon die. In her own words, she tells her sister that she has never had the desire or the willingness to look toward the future that the other three were now welcoming, that she felt no need to seek a husband or even to venture much beyond the house, because in some way, whether she chose to acknowledge it or not, she has always known that she would die while she was young. And soon after this talk with Jo, she does so, with no regrets, and with contentment of knowing that she is on her way to meet her Savior.
I’m 37, so I’m almost 20 years older than sweet Beth is at the time of her death, but I admire her contentment. I relate to Beth because I feel older than my years, and because I often find myself living under the assumption that my life will be shorter than average. There is a real logical explanation for this. Members of my father’s family carry (and carried) a genetic mutation that causes Early Onset Alzheimers. Like the more commonly known form of Alzheimers Disease, EOAD involves a gradual deterioration of the brain over time which results in the gradual loss of memory and ability, eventually disabling the immune system in a way that generally leads to death. Like the common form of Alzheimers, EOAD shortens the patient’s lifespan. Unlike the common form of Alzheimers, however, EOAD isn’t something that affects the elderly only. “Early Onset” means exactly what it says. People can get it in their 30s, and it’s aggressive, and fast.
Most of the members of my father’s family had symptoms beginning in their late 40s and were diagnosed around age 50. All of them were dead before they turned 60.
I’m not great at math, but that means that if I am a carrier of this gene mutation, I am now well past halfway through my life, and I may only have about one decade left before I begin my decline. Or I could even have Alzheimers Disease now.
I’ve had MRIs of my brain, and the various doctors that I see are aware of my propensity to develop AD. I am involved in a widespread scientific study of the disease that includes genetic counseling. I have not yet chosen to find out whether or not I have the problematic gene mutation. I want to know, but I’m scared. It’s been almost a year since I first met with a genetic counselor, and at that time I told her that I would probably follow through with the test as soon as I was ready. But every time I think I’m ready, I’m not. When I think about having this blood test done, I imagine myself like a bungee jumper standing on the edge of a platform, ready to jump. The platform is small, and there’s a lot of falling to do. But it isn’t the fall itself that’s risky for me.
The difference between me and the bungee jumper is that, until I jump, I don’t know whether or not I’ll come back up.
Saying goodbye to 2018 this week was a relief for me, because this has been a year of weariness. Weary was the word of the year for me. I am weary of my health problems, weary of worrying about them and about how much worse they may be. I am weary of my children’s struggles with autism, ADHD, anger, and depression. I am weary of listening to them argue. I am weary of feeling chronically and interminably tired. And I’m really weary of Fortnite dances.
I’m aware that turning the page on the calendar doesn’t mean any of this will go away. Fortnite dances, it seems, are a way of life now, and it certainly doesn’t do anything about my genetic status. But what it can change, if I act on it, is my perspective on my life. I am weary, yes, and that’s OK, it’s even understandable. But my complaint about my kids’ obsession with Fortnite applies to me too. My attention is in the wrong place. I am focused on my end game, on my misfortune, on counting the years I have left. I am focused on my tiredness and my inability to fix my kids’ problems or make them easier to handle.
Instead I need to focus on today, on January, on 2019. I need to see what I have and want it, and realize that what I don’t have I don’t want. I need to stop counting what I have left and start counting the days I’ve had, the blessings my Heavenly Father has rained down upon me. I need to stop allowing my exhaustion to frustrate me and start being thankful and proud of all that I’ve accomplished today.
I need to realize that I am satisfied. There is no need that I have that my God has not already fulfilled. If I believe that there is, then I am only dooming myself to feel that my life and I are totally, incurably inadequate. And if I’m going to die (and I am, whether it be at 37, 57, or 107), that’s not the way I want to feel in the end.
I want to greet God on my knees in praise and thankfulness, not weariness. So this year I’ve chosen Philippians 4:12 as my focus for 2019:
No matter what age I am when my time comes to meet my Savior, I want to know in my mind and my heart that my life was as full as He ordained it to be. I want to learn the secret of being content so that, no matter what the Lord requires of me, I am ready to give it. I want to walk in contentment. Beth March didn’t do that perfectly, and neither will I, but I will at least know that I’m going the right direction.
Photos by Thu Anh, Evan Kirby, Eugenia Maximova, and Eye for Ebony via Unsplash.