When I turned 16, my parents planned to purchase a used car from a friend of my dad’s and have me pay for a portion of it, so that I would have my own car to drive myself to and from school, band practice, voice lessons, and all the other countless things I spent my time on. But I only ended up driving that car once, and it wasn’t on the road.
The problem was that the car didn’t have an automatic transmission, which meant that I had to learn to drive with a stick shift. I was daunted by the idea, but my dad assured me that it would just take practice and eventually it would become second nature. So one summer day I let my dad take me in the car up to one of our farm fields for my first lesson on manual shift driving.
It didn’t go well. In short, I tried it, but I had trouble with the timing of hitting the floor-pedal clutch while also shifting the gears with my hand, and watching the road, and knowing that an automatic vehicle wouldn’t require this of me, I wasn’t willing to practice. After only a few attempts, I gave up, arguing that it was a useless skill for me, since I couldn’t foresee any need for me to learn to shift gears manually.
I’ve been gone from the blog for a while. I did a little writing here and there, but mostly I just got consumed by other things going on around me. Life, for me anyway, has an automatic transmission. God knows when the gears will shift, but for me it comes as a total surprise, and usually with a pretty big jolt.
At the end of April of this year, the gears shifted, and I received one of the biggest jolts of my life.
My father’s side of my family carries a genetic mutation that leads to Early Onset Alzheimers Disease. I’ve known this definitively since March of 2006, when my father received the results of a genetic test after his own Alzheimers diagnosis at age 50. But, in a lot of other ways, I’ve known this since I was seven years old.
I remember my grandfather, my father’s father, better than my younger brother and cousins, but what I remember is that he was different, and I could tell. I remember a distinct memory of sitting in his lap and asking him to read me a book, one I knew well. But instead of reading the words, he made up a story based on the pictures, and I recognized then that he couldn’t read. There are other moments that stick out too – my grandmother getting frustrated with him when he put on two different shoes and refused to change them, some oddly placed comments and outbursts at holiday gatherings, and eventually, his inability to talk or even look at me, as he sat in a “jerry chair” at a nursing home where he received little to no care.
I also remember a night in November. My younger brother and I were both trying to squeeze into my dad’s armchair, and play-wrestling in the process, and he managed to knock out one of my loose teeth. We were laughing about this, and then the phone rang.
My grandmother was at our house as well, though I don’t remember why. My father answered the phone, but the caller evidently asked to speak with my grandmother. When my grandmother took the phone, she burst into tears, and I knew Grandpa had died. He was 56.
I saw and even touched my grandfather several more times after that, which I will describe in greater detail in my upcoming book (more on that another time). But even though I remembered so little about him, I saw his disease and his death as something that wasn’t really over. Later, when I learned that his younger sister was also inflicted with Alzheimers, I knew that this was pretty accurate, and upon my father’s diagnosis, when I was already in my early 20s and had two small children, I knew that God had been preparing me all along.
My grandfather’s death promoted my first attempt at prayer. We weren’t a church going family then, and I knew little about the Bible or about Jesus Christ, but I wanted to talk to God because then maybe Grandpa would still be listening to me. My father’s illness, though, came at a time when I had a strong faith and had received the grace of Christ into my life, but I was also struggling. My two babies, then one and two years old, were challenging me, my husband was gone about twelve hours a day for work, and I had no one nearby to talk to. The babies consumed my energy, and my depression and anxiety were just barely in check.
The news, that time, came as a confirmation of something that I already knew – my grandfather’s disease had also been his sister’s disease, his father’s disease, and it was now my father’s disease. I realized that, over time, I had come to believe that it was a genetic disease, even before I knew anything about genetics. I believe now that God allowed me to know, even as a young child, that my father would get this disease.
I also believe that the news I received at the end of this past April was also something I’ve known since I was a young child.
I am a carrier of a genetic mutation on the 14th chromosome, called the PSEN1 mutation. While there are some genetic conditions that only make a person more likely to develop Alzheimers, PSEN1 is definitive. I will have Alzheimers Disease, and I do have Alzheimers Disease.
I am 38. I will likely die in less than twenty years.
Yes, of course I know that God can miraculously heal me, either through the brilliant scientists who are desperately searching for a cure, or by simply touching my body Himself. Yes, I pray for that. But there is a line that I need to draw between praying for a miracle and expecting one. God hates that I’m carrying this disease, that I have symptoms now, even while I’m still raising my children. Yet disease, it seems, is a part of the curse of humanity, a curse that we chose ourselves.
My disease was there from the beginning, embodied as a snake in the Garden of Eden. When Eve, and then Adam, chose to accept the idea that God may have lied to them, they also accepted a curse on behalf of all humankind. Genesis says that this first sin committed by the first woman and man, unleashed all sin, and humanity’s propensity for it (Gen. 3:22-24). From this beginning, women were cursed with painful childbirth and a longing to be loved and cared for by another (3:16), and men were called to work, to toil, and to put forth great effort and strength, to produce food for themselves and their families, sometimes with little or no results (3:17-19). And, in verse 19, God throws in one last promise that is true for every single person who ever lived, including me:
“You will eat bread by the sweat of your brow until you return to the ground, since you were taken from it. For you are dust, and you will return to dust” (Gen. 3:19).
To quote Kansas, “all we are is dust in the wind.”
I have no doubts of God’s love for me, or for my father or grandfather, and I have no doubts in his ability and desire to miraculously heal me. But I also know that I’m a sinner. I know that that, like PSEN1, I was born with genetics that guaranteed that I would be a sinner. I know that Jesus Christ died and rose to take away the consequences of my sin, and I love Him more than ever now as I anticipate the time when I will meet Him face to face. But, even though my sins are forgiven, as a human person I still face consequences for them. Short of a God-given miracle, I, like everyone else living in this time, will die.
So prayers for a miracle and for a cure (which is a miracle) are happening, and being actively worked for, but they are secondary for me. I am hoping for a miracle, but I am not expecting one. Instead, I am preparing to invest my life in my faith, to make sure that my actions and words serve as an accurate witness, that I fill my children with my love while reminding them that I can only love because God loved me first (1 John 4:19), and, gosh darn it, I’m going to enjoy every flippin’ minute of the time I have.
Plans are being made, and actions are being taken that were once only ideas. We adopted a dog. We looked at real estate in Colorado. My husband told his Naval command that his next tour would be his last (four years to go!). I quit my job. We’re planning vacations and tattoos (they’re usually equally exciting to me). I’m redesigning our home’s interior to my liking, just because I want to. And I’m writing a book.
I am not the skydiving type, but I am diving into everything I can of God’s creation, His people, and His plans for me. Having a finish line has narrowed the course of my race.
Please stay with me through this. I want to know that my words are helping people think and dream and love. I want a way to express the emotions that will come up as I feel myself forgetting, deteriorating. I am putting myself out there, the real me who God intended, so that when I’m gone, my words will still be here. I’m not abandoning the other topics and series that I’ve begun here; in fact they may be even more significant to me now. But my true desire, now, is to be an advocate. My kids, now, have just as much a chance of carrying this disease as I did and do. But, if we speak out about the pain it causes, the lives it changes, and the damage it does, the efforts to find a cure will receive more funding for greater levels of research for a cure.
Photos by Dylan Gillis, Tom Doerfler, Alexander Andrews, Mat Reding, Veeterzy (with Adobe Spark), Deanna Ritchie, and Pedro Lima.