backstory for "No Easy Answers"

I sit here in the night, reading my thoughts manifested on a laptop computer screen. I find this is the easiest time to record my thoughts, with the starlight pouring in through the open blinds, or with the sound of the wind whistling up the hill, across our slanted, virtually unobstructed ten acres, and with the cold lifting my senses and wrapping around my form like a lover embracing me after a night’s chill. My thoughts are simple tonight:

It’s not fair.

I have been diagnosed with Parkinson’s disease. I feel so many things, anger—at my doctor, at myself, at the life I have led that may have led to this condition, at Parkinson, whoever he was, for creating this damn disease in the first place—fear, disbelief, helplessness,… uncertainty. I need to find out what it is, this Parkinson’s disease. PD, my doctor calls it. I need to find out what causes it. I need to find out if it is treatable—what I can do for it and for myself. I want to find out about its progression. I’ve heard of it, but I can’t say that if I ever saw someone with PD that I could pick them out in a crowd.

I stop typing in my journal and start scanning the internet for answers to my questions. I am floored. Symptoms are caused by degeneration of the neurons that extend from the substantia nigra to the putamen and caudate nucleus, resulting in a deficiency of dopamine. Dopamine is essential for muscle coordination. It is also involved in emotional responses, appetite suppressing, addictive behavior, and feeling pleasure. Maybe that is why I have started to smile less (or perhaps it is because I have been depressed ever since my diagnosis). There are various treatments available, mostly pharmaceutical. There is one cutting edge treatment involving an electrode surgically implanted in the brain, called deep brain stimulation. It costs $100,000. The outlook for PD patients—such as myself—is bleak. The early symptoms are tremors; I won’t be able to walk, or write, or even lay in my bed without shaking. Everyday tasks, like fixing and eating meals, brushing my teeth, and (God forbid) wiping myself after toileting will become more difficult as I grow worse. Even my writing, my speech, and my facial expressions will diminish in legibility. My brain cells will continue to die. Since my symptoms have already become discernable, that means I have already lost 80% of the neurons in the area affected by the disease.

I stop what I am doing, lean my head to one side, cup my forehead with one hand and start to cry. The wind whispers as it races by outside the far window, making me shiver. Was that a tremor? No. That was just a shiver. Thank God for small favors. Did someone say “Knowledge is power”? This knowledge makes my head hurt and my eyes sting. After a while, in the quiet light of the laptop, I dry my eyes on my oversize t-shirt and heavily make my way to bed.

Morning breaks, and with it, the reminder of the life that awaits me. I just want to turn over and go back to bed. Just wish I could sleep it off. Like a night of too much fun on the town. I sigh to myself, pull my large, warm comforter to my chest, and cry again.

Eventually the dog’s whining drives me out of bed, so I plod down the stairwell past my laptop and into the kitchen to start the coffee. The stars are visible in the morning gray. In the silence, I hear a car whiz past our property, stereo bass causing a slight seismic vibration, until the headlights vanish around the trees. For want of some noise, I turn on the television. Janice will want to walk this morning. I need to make up my mind before 7:00 rolls around, whether I will go with her or not. It just seems like it would be easier to sit down and watch t.v., to try and forget for a while. So I plod over to pour myself a cup of coffee, sit down heavily in my e-z chair, and push the red button at the top of the remote control. I’ll just sit here and drink my coffee and think, I tell myself. But soon my stomach stirs uncomfortably and I know I must make up my mind. As fascinating as the cartoon which I inadvertently turned on is, I switch off the television and head for my coat by the door. So my neighbor Janice and I go for our walk as usual on Tuesday morning. It is a brilliantly clear day, the birds are chirping at each other and looking at us from the power lines and the trees lining the road. Familiar drivers pass by and smile and wave. Janice has no idea that something’s wrong with me yet. Will she forget I told her I was going to the doctor? I hope so. She doesn’t, and I tell her that my doctor said they need to do some more tests, and that I scheduled those tests for another day. I am relieved to see that she believes my story. I’m not ready to tell her the truth yet, not until I’m able to handle it myself.

Later, since it is a nice day, I decide to get some shopping done. My first stop is the Target store. As I enter, I imagine what it will be like knowing many eyes are upon me, maybe not steadily, but darting looks now and then. As the security guard greets me, I wonder what he would be thinking if my symptoms were more obvious. I wonder what I will feel. I’ll wonder what people’s smiles mean. Are they being polite or feeling sorry for me? Are they feeling genuine warmth and compassion (rather than sympathy, perhaps) or are they thinking that they are glad I am the one afflicted rather than they. Will I be afraid to pick up glass containers off the shelf, for fear that my hand might shake and I might drop something and have to buy it? I carelessly grab coffee, snack crackers, soup, canned tuna, and bread, and, basket loaded, I head for checkout, suddenly feeling very tired and weak. The basket I am carrying feels like it has just been filled with bags of sand, and the other end of the store might as well be on the other side of a mountain. If it’s like this for me now, I wonder, what will it be like when I have serious trouble walking? I feel fresh tears burning at the corners of my eyes. Not wishing to be caught crying in public, I take a deep determined breath, bow my head, and I stride across the store to purchase my things and head for the exit.

Once I have shut myself into the quiet of my home—quiet, that is, except for the welcoming barks of Ana, my canine companion—I take in a deep breath and step into the kitchen, where I drop my few groceries onto the counter. It’s just past 1:00, so, although I’m not exactly famished, I postpone putting my purchases away in order to use some of them in my lunch. All I need to complete the needed ingredients is mayonnaise and,… maybe some relish. Before I begin eating, I put a favorite audiobook CD into my shelf stereo system. As I eat, I think of all the stories I have read—and heard—in which the characters almost immediately feel rejuvenated after eating something. I can’t seem to recall any stories in which the main character ate his or her food and thought, Shit, now I feel even worse than I did before. Besides the lack of toilet breaks, I think this is one way that fiction does not accurately reflect real life. Of course, I can’t recall many times when I was younger and I thought too much about how I felt after eating. But now I can’t help but wonder if every routine thing I do, every little thing I do regularly without thought, may have somehow contributed to the problems I’m facing. And the tuna fish sandwich does little to improve my outlook. Eating it has made me feel even more tired than before. Too weary to even consider washing my few dishes, I make my way to the bedroom, dog trailing, and take refuge in my soft, thick, heavy comforter and my various pillows, from very soft to firm enough to be supportive. Instead of turning on the television, or even taking out a book to read, I just lay back, resting my head atop three or four pillows, and think, and question, and try to plan. What the hell am I gonna do?!?

The next day is a little better. The sun is still shining—I think it is even a little warmer—so I lay out in it with a book and fall asleep, with two solitary tears drying on my cheeks. I awaken about an hour later, thinking the vitamin D must have done me some good, or maybe it was just the warmth and the rest. It is a comfort to have my little dog, Leila, there. She is always warm to the touch, and she likes to cuddle up right next to me, just like my children when they were small. I think about how, occasionally, she still plays with her chew toys like she did as a puppy, even though she is getting rather old in dog years. Do I ever play anymore?

Leaving the sun to burn off the moisture still left on the grass and leaves outside, I go inside to sit down at my laptop and write. Not my thoughts this time, but a poem. And not a serious, sad poem or even a love poem (as if I would have anything to write about), but a crazy, funny poem, almost like a limerick or a funny country song. It feels good to laugh about the stupid things I write about as I put them down. I can easily find the humor in most everyday situations. But when I get to thinking about the Parkinson’s, it gets a lot harder to come up with something funny to write. So, why make it funny, then? I think. Just make it honest. And I write about how angry and hurt I am that I was chosen among the millions of eligible candidates right here with me on planet earth. I guess that is humorous, in a way, but it is malicious, too. The most important thing is that it’s honest. I have to be honest with myself.

Honest.

That strikes me, not like a bat to the head, or a slap in the face, but like a strong yet tender, loving hug in the midst of a fight or a hopeless cry. I must be honest with myself. And, if I am honest with myself, I must be honest with my loved ones, too. It’s time to tell my friends, and my children.

For the next three hours, I am on the phone with Janice, then Sharon, my old high school roommate, who, had become a family friend (our families had included her husband before their divorce and my husband before he died). Then I call my son, Brian, in California, and my daughter,Lana, who lives only fifteen minutes north of me. She and I talk the longest, and, at the close of our conversation, when she offers to take me out to dinner I say, “Sure, why not?”

It’s funny how your appetite increases when you feel even a little loved and secure, as I do eating Chinese food with Lana. I am able to talk so easily with her about things, even about my drastically altered love life since her father died. Sometimes I am amazed that she is my own child. Even at 36, she seems wiser than her years, as if she has already lived a lifetime, and it feels like we are best friends, despite the fact that I am fast approaching 70. She makes me laugh unexpectedly—so unexpectedly that some of my excess drink spills out into my nasal passages. The alcohol burns a little, before I excuse myself to blow my nose clean in the ladies' room, but the laughter brings me some relief. My daughter has the ability to make serious matters tolerable, and the night’s conversation gives me much reason to admire her, and more to think about.

A month passes and Brian comes to visit me. He notices the shakiness of my hands and looks concerned. I try to pass it off as jitters from hunger, but he knows better. He embraces me for a long time, and when he finally pulls back, his eyes are shining with tears. What beautiful, thoughtful children I have. He asks if there is anything he can do and I tell him, “Not yet. But I’ll let you know,” and I smile.

He hesitates, then smiles back. “You'd better,” he says. Then his tears begin to flow and we hug once more. I find myself crying again, not in self-pity this time, but in gratitude for the love of the grown children I have raised.

More months pass. Janice and I continue our walks. Our conversations are a refreshing change of pace from my talks with Sharon, which are mostly one-sided, with her asking more questions than I care to answer or even think about, like, “Are you sure you should you still be driving?” and “Shouldn’t you get one of those alert badges in case you fall and you aren’t able to get up by yourself?” They are, perhaps, important questions, but I’m just not ready to think about such things yet.

So my daily life continues much as it did before, with the exception of more frequent visits to the doctor than (ever) before and all the pamphlets about Parkinson’s I get in the mail. One describes a support group that sounds like it might be a good idea, but I’m nervous about meeting others who might be in more advanced stages of the disease, so I put the brochure aside.

Eventually, though, I attend one of the meetings. As I expected, I am deeply shocked at my first introductions. Many couples attend the group, and some spouses have to do everything for their mates, because they can only stare ahead and move slowly within the confines of their wheelchairs and mumble unintelligible answers to their partner’s questions (although certain of their “healthy” spouses seem to understand what the wheelchair-bound spouses are saying if they lean over and listen closely).

Once I am over my initial shock of knowing what I may expect, I reach a state of acceptance. Perhaps it sounds a little cliche, but it always helps not to get too upset, and I have found that acceptance is calming. And, as I am losing the prospect of having several more healthy years of retirement, I am gaining the confidence and certainty that comes with resigning oneself to one’s fate, be it a temporary condition or one more permanent. Yet I haven’t given up fighting. I have only accepted that I must take what Nature dishes out and give her my best in return—not with ferocious fury, but with open calmness and clarity. I may lose control of my body, but I won’t lose heart. I will continue learning how to live the life I have now, how to live with my condition.

It has been nearly a year since I was diagnosed, and I am sitting on a lawn chair (not a wheelchair, yet) on the second-floor deck of the house my husband built. The spring air is cool and refreshing after another sunny day. The stars seem brilliant tonight. I wonder why some of them seem to elusively fade out and then reappear. Is it just a trick of the eyes? I look for a shooting star, but I don’t find any. Tonight, however, I feel the bright, sequined sky will provide a fine audience for my thoughts, if not my wishes.

I am eventually going to lose control of my body, yes. This is something that is very important to me. I have no doubt that this one thing is important to everyone, and almost everyone takes it for granted. I have found strength in simply not taking things for granted. I am beginning to see life more clearly. Little things are beginning to matter less. My children and my friends are becoming much more important to me, and I to them. They are all a part of my greater family. Acquaintances and polite “fair weather friends” have all but disappeared.


I have begun to cherish moments like this, like tonight, when I am alone without thoughts of what might be, and with thoughts of what is instead. I am alone, that is, except for the furry, tan, bristle-backed canine to my immediate right on the deck, emitting a soft, rumbling snore. A multitude of stars gazes down at me from a dark blue backdrop, and it appears that a full half of them wink in reply to my reflections.


I'm beginning to see: Life changes perpetually. Now my changes just happen to be speeding up.