I began this blog with the intention of committing to a specific range of topics and sticking to them, but instead I've found myself branching out and making it a bit more personal then was my intention. I still want to commit to not making this a journal of my daily life, or even my daily thought life, but nevertheless my thought life, and the events and situations in my life that stimulate it, are what I have to bring to you. I hope to also include some opinions and theories based on research into the psychological and sociological topics that interest me, but as I've come along with this over the past month I've also felt led to share the lessons I've learned and the moments that touch my life, in the hopes that I can offer new insight or even hope to someone who may read this. (If I do, please comment! I think there is also a link to contact me privately by email, or alternatively you could post it as a comment, but mention clearly that you do not want me to post your comment, and I will read it without posting it.)
I am not a fan of ignoring or bottling up my hurts. I believe that the first step of learning to cope with or manage the negative feelings and painful circumstances of life is acknowledging one's emotional responses to them, and that keeping them contained in some back corner of one's brain prevents a person from dealing with the pain, which can only result in more pain in the future. Usually I can be accused of just the opposite of this, in fact -- I am often guilty of stating my feelings in the moment, without stopping to think about how others may react. In the past few years, however, I have experienced a few hurts that have shown me that bottling the feelings, or keeping them boxed up on a shelf as I like to think of it, has its place. For the first time in my life I am encountering something so painful that trying to deal with the hurt as I experience it is simply too much for me. If I were to allow myself to truly experience and express my emotions on this as I felt them, I would be an invalid, because these feelings would overcome my ability to live a normal life. For that reason, I store them away and don't talk about them much, and then only with those with whom I feel safe. I can have it no other way, simply because I have a family and responsibilities and I need to keep on living each day.
My father was diagnosed with Early Onset Alzheimers Disease at fifty. My grandfather, his father, died in 1987 of the same disease, along with my great aunt a few years later. It is suspected that their father also died of the disease, and possibly a number of other relatives before him, though the Alzheimers diagnosis was not available at that time. About a year ago my father received the results of some genetic testing and what we'd always suspected was confirmed -- our family carries a gene mutation that causes the disease. With this confirmed it leaves me with at least a fifty percent chance of contracting the disease, probably around age fifty, and dying about ten years later, at sixty. And there it is -- my greatest pain, my greatest fear. It is a fear that consumes me, despite my best efforts to keep it in a closed up box at the back of the closet that is my brain. It is a fear that prevents me from being able to fully cope with the reality of losing my father to the disease, probably within the next five years. In fact, my father's disease leaves me so terrified that I find myself afraid of my father himself. This disease being what it is, it seems to be gradually consuming his personhood, and while I value him no differently, to see him and speak to him is to see a shell of the man I once admired. He seems lost in a fog, lonely, at times reaching desperately for the parts of reality he can still grasp, at other times just quietly slipping away.
When I think about the very real possibility that I will one day be the one slipping away, it grips me. I am not afraid to die. I am somewhat afraid of the pain, or more likely the mental anguish of slowly becoming lost in my own mind. But the fear that threatens to undo me is that of what I will do, and what I have done, to my husband and children. I may carry a gene mutation that will cause my brain to slowly turn to ameloid mush, and unlike the more typical form of Alzheimers disease that comes after age sixty-five, this may begin as early as my late forties, and kill me by sixty. And so my thoughts go:
When I am fifty, my children will be twenty-seven, twenty-six, and twenty. My husband, who will be tasked with carrying for me, will be fifty-eight. I have one child with a disability, who may or may not continue to live with us at this point. I may never know a son or daughters-in-law. I may never know grandchildren. I may never see my children become the age that I am now. They will have their own lives, and I will interfere with them, needing care around the clock, but unable to thank them for it because at some point I will forget their names. And then the worst thought of all -- if it happens to me, chances are strong that it will happen to at least one of them too.
On Christmas Day, the first year after my father's diagnosis, E, IC, and DJ and I were driving up to visit my parents for the holiday week. We stopped at a truck stop, where friendly employees and truckers headed home themselves stopped to admire my sweet babies. One trucker sat down at the next table to talk to me while I nursed, and mentioned that he'd always wanted to have kids. The reason he didn't? He had ADHD, and didn't want to pass on such a "terrible thing" to a child. This was the moment when it first hit me about what I had potentially done to my children, simply by becoming their mother. Already lost in one of the worst periods of depression in my life at the time, I hit rock bottom for awhile. I had never seen myself as a good mother, but now my parenting didn't even seem to matter -- my children were doomed by their genes. While the genetic mutation was not yet confirmed in my family, I had always assumed it to be there. Three generations of dementia and early death can't be wrong.
The floodgates opened up again last night when I read a friend's blog in which she lamented the possibility that she may have passed on bipolar disorder to her son. I cried for quite a while, I sat in a dark room and watched the rain, and I pitied myself and my family. I asked God why.
Then this morning, sitting in church trying to keep my brain the in service and not on which child needed what and when, I followed my pastor's instruction to open my Bible to John 9, and God spoke to me, and I was reminded once again why we call it a "living Word". In this passage, Jesus is walking along with the disciples when they see a blind man. Apparently this wasn't unusual; the man had been sitting in the same area begging for probably most of his life (9:8). They didn't have the Americans with Disabilities Act in ancient Israel. The disciples ask Jesus the same question I asked God last night -- why. Why would God allow this man to be born this way? Informed by what they had been taught as good Hebrew boys, though, they made an assumption. They asked, "Who sinned, this man or his parents, that he was born blind?" (9:2). Having read this story a hundred times, their question seems immature to me now, but isn't that exactly what I was asking God last night? Why, God? What did my father, or my grandfather, or my great-grandfather do wrong that made you decide to curse my family with this awful sickness? What can I do for You so that it doesn't happen to me? Why am I facing this horrible way to end life? Why is there even a possibility that my children will have to deal with this? WHY? Though it was uncommon for Him to do so, Jesus gives them a direct answer:
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
My pastor went on to talk about how the disciples looked at this blind man. They saw him, and perhaps anyone who was seen suffering, to be a sinner, doomed to suffer with illness because he had sinned. Jesus directly challenged this assumption, and explained that God uses illness to show His greatness. Our pastor wanted to change our perspectives with those of the disciples, to see weakness in others as a canvass for God's strength. Today, for me though, I was sitting in the other seat. I was the blind man. I might even be the blind man's parents. I realized that I was still holding onto an idea I'd had as a child -- that my family was cursed with this illness. It's amazing how childish thoughts, left unchecked, can grow to become a part of our adult perspectives. It'd been there so long that I'd accepted it as fact, never accepting this simple truth, that our weakness, including illness, exists to showcase God's strength.
No, I have no idea why or how God will use Alzheimers disease to reveal his goodness through my father, or perhaps me. I still can't really imagine something good coming from something that still hurts me so much. But what I can see is how God has already used my father, and I have enough faith to know that He still can, even as he slips away. I don't believe that God will miraculously heal my father, like Jesus did the blind man, and I don't believe that He will heal me if I do indeed develop this disease. What I believe is that there is more to life than how or when we die, and that Christ conquered death, not just so we can go to heaven, but so that even crippling illness and death can be enveloped in His love. I don't quite know what that will look like, but if I see it in anyone, it will be my dad.
*Please note that this post was written on Sunday, 5/15/11 around 10PM, but Blogger was down, so it is being posted now.