Never Walked In High Heels

What I Know Of Her Son

She is a woman who I have been wanting to meet for years. Ever since I first heard my friend describe his mother, I knew that she was amazing just by examining his outlook, and that she had a degenerative nerve disease. When he spoke of his mother, he keeps the latter fact quiet and simple telling me of what she’d done and what she used to tell him. “She’s fine…well she’s not fine she has a nerve disease. But it really doesn’t affect her that much.” And so, when I finally bumped into her visiting her son while walking down the road at a Sunday pace, I was surprised as she was further along in her condition that he had made it out to sound. As close as we were I wish he would have told me honestly what her status was like and what her troubles were. But maybe he is as blind to her disability as he is to mine.

I always wanted to meet his mother. It amazes me whenever I meet the parents of any of my friends. I begin to understand where they got their values and which matters were the greatest influences on their life. This particular woman raised my friend incredibly well. For my own sake, when I am out and dependent on him it is as close as I can possibly imagine to possibly being fully independent. In such cases I am particularly interested in meeting the mother of the family, mothers teach their children to stretch their boundaries and to think beyond what is normal in order to incorporate people of all types. The influence of such a woman can mean that for the rest of their life, their child does not feel awkward whenever meeting someone strange. Mothers open up the world of acceptability to their children, making the entire universe more inclusive. I have met two of this woman’s sons and I can safely say that she did a wonderful job in raising her children to be as accommodating and as understanding as human beings can possibly be.

As soon as we were introduced, her eyes lit up with a flicker of recognition. She was holding on to her walker and instantly called me by name. From this I gathered that she somehow knew my name and that it was familiar in their home. Watching her watch her son handle my bags and meet my needs for minor assistance, it suddenly dawned on me that this behavior that she was witnessing in the young man that she helped raise, nurse, feed and carry was new to her. She probably never saw anyone rely on him in such a dependent way as I do on a regular basis. The fact is, I depend on all of my friends, but particularly him, and I forget that this often looks strange to the outside world.

Then, almost instantly, I came to another realization, that because of her own disability, someday soon she will be dependent on him as well. For many individuals with a long term degenerative illness this impending dependency is the most fearful thing to overcome. The fact that someday you will be dependent on your children, and at that point in time it is how you raised them that will reflect on how they will take care of you. Again, it is the classical instance of an individual reaping what they sow. As parents teach their children to care for human life and value it in all its forms, the trickle down effect is that eventually they will be under the care of their children in one form or another. Those families who do not bother to teach their children such values and ethics will no doubt feel it when the older generation inevitably starts losing its own independence.

For me the most humbling realization was that suddenly I knew something about her children, particularly her sons, that she knew nothing of, that she would someday be reliant upon. In this small way, I know how her sons look out for people in need, protecting and advocating for them. Both in the slightest and most dramatic ways. They are both unafraid to feed someone when a spoon becomes too difficult to hold onto. They can tie shoes without breaking the conversation and are experts at making sure that someone not only survives, but that they are happy, healthy and know that they are valued. If such a day comes for her when she can no longer perform the tasks of daily living without a great deal of assistance, she will also find that her boys are exactly as she raised them and I am already thankful for those effects.

Somedays I wish I could tell her now that her children will take care of her when she is in need. I wish I could tell her that when her body rebels and she is no longer able to do what was once considered a natural reflex without a massive amount of frustration, she will have no need to worry. I wish I could tell her all the ways that I see my friend stepping up to the plate and preparing himself to take care of his parents when they grow older. I wish I could tell her all the stories of all the times he advocates for me, and that I am grateful to have such a fabulous friend.

And then I can’t help but wonder, if she and her husband raised their children to become such honorable and humane people, perhaps she knew what he is capable of all along.

I particularly worry about my generation when it comes to reflections on suffering and doing so with grace and dignity. We are quick to prescribe drugs and change our general health regimens in order to avoid suffering. Why shouldn’t we, if it can be avoided, what’s the point in prolonging it when such pain can be stopped. But it seems as if my generation has a Victorian-like opposition to admitting that the world will always be less than ideal, that our bodies break down and eventually we all have to shuffle off this mortal coil. Indeed, the last great taboo is something we all face in the privacy of our own bedrooms, at our weakest moments. Perhaps, in living our lives, whether in denial or admission to the inevitable, we do find for ourselves exactly how our lives will end.

“There used to be books written on how to die well,” I heard the man on my internet radio broadcast recite over and over. I thought back through an exercise I spent my time doing in drama school for several months in which our movement teacher would ask us to walk around the room assuming a historical persona and then at certain points giving us additional information about that historical setting. Over and over regardless of the precise point in time, we heard that every family was much more effected by death than we are today. At some points, 30% of all women dying in childbirth and little to no security or regulatory systems imposed on corporations, government or personal safety standards, death was always one slip away.

Today death, illness and weakness seem to be the last society taboo. I can walk into a room and say to my girlfriends, let me tell you about my ex-boyfriend and the intimate details of our relationship and nobody raises and eye. If I take the same group of people and say “I want to tell you about how my grandmother died,” the entire room falls silent. We don’t know about suffering and death the way our predecessors did. Most of us can go our entire lives without seeing a dead body and those that we do see at an open casket funeral are made up to look more like figurines than the cold truth of the decomposition of the human body. We are strangers to suffering, assuming that those in need would be better off if the experts took care of them and also assuming that we have little to offer ourselves.

The idea today of a book being written on how to die well seems absurd. One may only walk through their local Barnes & Noble to see that the self help book aisle preach the opposite effect. Guaranteeing love, energy and longevity that will last far beyond what our grandparents dreamed of. In this world, even with all the medical advances that have occurred in the past one hundred years, dying is still guaranteed. But that doesn’t mean any of us bother to know how to be good at it.

Christians especially used to be known as individuals who knew how to suffer and die well. Its true that nobody wants to suffer. But we assume that somehow something has been taken from us, stolen even, if we do so. Its not fair. Certain people can go their entire life without getting a tumor. Why did one take my friend in her mid-30s? We say to ourselves that we don’t deserve suffering and it seems the more faithful we are, the more adamantly we insist that we are good people that have absolutely no reason to suffer. The problem is, the best of us who walked on this earth thousands of years ago, never said there would be no suffering. They just insisted that paradise would come not now, but later.

After my own suffering, even in my youth (and I’m sure it will go on until I die) I have discovered that I am no stoic. I cannot throw back my hands when I’m in pain and say “That’s the way the world is, I may as well succumb to it.” We as human beings combat suffering because the world should not be suffering, because we realize that the world is not perfect. We do have an idea of what the perfect world would be. One that has no life long illnesses, aches, frustrations or injustices. It is because this world has so many blemishes that we can imagine what life would be like without them rather than being naive to such imperfections in the first place. Those who care to admit that suffering is universal and inevitable in life, do so at a benefit to themselves. The human condition is vulnerability. There is no exception to this rule.

“I’m glad I don’t have to worry about any of that”, she began overconfidently. We were in the middle of a conversation about heaven and hell, faith, the afterlife, and the overall meaning of life. A friend who does everything possible not to think about these issues, finally stated not only her denial, but also her relief that these issues would never be a concern. She would never grow old, she would never have questions that for many remain unanswered regardless of having the best intentions to figure it all out in this life.

Many people I know often spend enormous amounts of energy swearing up and down that we are here by some sort of cosmic accident. A billion years ago something mutated and a couple thousand after that, something else mutated and so on and so forth so that there was a vast domino effect that actually took all of time thus far to create the world as we know it. Had the most miniscule thing gone wrong, we might not be here and overall they are okay with that. With age and penury suddenly people are faced with the limitations of human condition. All of the answers they clung close to throughout life, be it the idea that it doesn’t really matter or it matters only so long as we are capable of doing what we want, explodes in their face and they quickly begin to question the structure on which they built their life because their own physical structure is failing them. It is important that this usually comes at some point when they are often faced with the fact that their bodies, mind, their life as a whole, is going to fall short. In short, it’s when my friends get slapped in the face with the idea that they are human and not above breaking down physically or spiritually that the cosmos comes into question. Often I think it would be great not to have to be confronted with one’s own weaknesses until I was much older. To be able to go through most of life being perfectly capable of accomplishing exactly what I want, whether it’s running upstairs to get the book I forgot on my way out the door or running a marathon in order to raise money for breast cancer. Often I think it would be great not to be aware of all the conditions that I have become extremely aware of through having friends suffer through them. Most people in high school don’t know what any number of ailments or disabilities are and quite frankly they shouldn’t have to. Wouldn’t it be wonderful, I always thought, to be like everyone else and not know that the struggle exists until I am a ripe old seventy something, retired, and living out my life exactly as an old person should. Watching my older friends (and sometimes, unfortunately, friends my own age) have that sudden flash of recognition in which they see for the first time that life is not as easy as they pre-supposed it was often causes my stomach to turn and myself want to cry out for them coming to the knowledge that I’ve always had and losing a sort of naivety and innocence that goes alongside Nietzche’s ubermensch inevitably when they lose this presumption, my friends begin to wonder if this is all there is in life, if we are just here by chance and if that’s all that matters.

For someone who has always been acutely aware of their weakness, who’s never had another option except for knowing the overwhelming truth, there is of course an advantage to this situation. Endurance and perseverance in a world that is made for perfectly able bodied people when the idea of perfection is extremely unrealistic for just about everybody in existence is absurd. Being in a state of physical adversity forces you to see the world as much bigger than yourself. It means that having to struggle more than most, you are forced to establish security beyond yourself knowing that, at any moment, you could become more dependent than you were the day before. It means not putting faith only in your own abilities, and it means knowing that there must be something greater than yourself no matter what that thing may be.

There are advantages and disadvantages of course to having what is considered the full capacity of a human being and losing it later in life and never having it to begin with. But as I watch my friends struggle with their own mortality, in many ways I am grateful for not having to do the same and being forced to ask the questions that are inevitable in life but always make everyone, regardless of age, extremely uncomfortable to have to ask. I am no one’s idea of a perfect human specimen, but I hope I am a richer human being for it.

I was sending my electric chair careening down Tottenham Court Road while in abject anger. My muscles were tense, I was doing everything possible to dodge in and out of pedestrians and not get stuck behind any slow-moving tourists. Having just been told that my disability was going to prevent me from achieving my dreams, I was currently wishing that the instructor I had just left would fall down the stairs of her flat onto the icy pavement below and break a leg that evening if for no other reason than to show her just how frustrating having a condition that was less than ideal was. Then I remembered her crooked back and knobbly hands that were riddled with arthritis. I take a deep breath and slow my wheelchair to a reasonable walking pace, reminding myself that she does know on some level what it is like not to have the perfect body. She can empathize if she chooses to. She knows the frustration of hands which will not obey her brain and feet that shuffle along the floor that used to run when she was a girl. She knows her condition is becoming a chronic illness, and she is terrified. It seemed a little absurd, but I have to constantly remind myself of the frailty of the human condition, even as a person with a disability, an uncooperative body, looking the beast of frailty in the eye. I often forget that bodies break down because, according to some, mine was never built properly to begin with. I forget that, unlike me, most individuals don’t have a history of years struggling with their own physique under their belt by the time their physical capacity begins to deteriorate. I forget all of this and attempt to remember these simple and unalienable facts of life whenever anyone stands in opposition.

Sometimes, even after remembering the state of human affairs I would still like to speed up the process by running over a few toes and making certain people have to use crutches for six weeks just so that they can get a taste of my reality. I once had a high school teacher explain that it was a small kink in human DNA which causes differing characteristics. A tiny microscopic difference between all of us human beings creates so many silly boundaries and absurd demarcations as to what an individual considers normal and fully human and what some people would consider substandard. The most universal thing about the human condition however, is our own vulnerability and the fear that we all have of succumbing to it, but regardless of our level of terror brought about by the idea of opening one’s self wide and being honest about one’s condition, be it mental emotional or physical, inevitably we all find ourselves in vulnerable positions. To have relationships, to accept intellectual risk and encourage progress, just getting on a bike and riding down the street, getting into a car, stepping onto an aircraft, all of these choices, events, are the stuff that life is inevitably made of. Without these, the new ideas, the desire to mobilize ourselves, life would hardly be worth living so we need to accept that sometimes we do make ourselves vulnerable if for anything at all, but to experience life.

The absurdity of it all is that we continue to react negatively when someone does fall victim to their own vulnerability. Perhaps because some conditions such as arthritis, birth defects, and broken limbs are often out of our control. However if a condition is inevitable, what would ever possess us to lash out or entrap the victim of that condition? We wouldn’t think of becoming irritated by a fourteen year old because she menstruated for the first time. Such a change is, after all, is part of the human experience regardless of how awkward it may be. And yet, we often cannot look a person on his deathbed in the eye, much less our friend who was once perfectly able bodied now confined unexpectedly to a wheelchair after being struck down while in prime physical condition because of some ridiculous accident.

My impatience with the people who fall victim to these absurd beliefs , that life is only livable if one has full use of all four of his limbs and is the ideal weight, height, and intelligence comes from such peoples lack of experience. They have yet to learn what it is like to be dependent on other people who have very little in common with themselves. How, when you are hungry and you want a meal, it doesn’t matter what that persons’ skin color, religious or political beliefs are, all that matters is if they are willing and able to prepare hot food when one is considered unsafe in the kitchen. This forced dependency on each other, the ability to serve others unlike ourselves, and be served by individuals who you would never expect service from, it may well be these circumstances that make us vulnerable, and without them, we begin to lose our humanity.

It is one thing for a teacher to assume because of my physical condition I am unlike her and unable to find a place in “her society.” But the fact is, she is much closer to becoming like me than she would like to believe. It is the fact of living that one misread stoplight or piece of poor judgment on anyone’s part, not only our own, can cause us to wake up completely changed, dependent and confined in ways we never thought possible. I suppose in a way it is hard for me to remember that in her stubbornness to deny her flaws and weaknesses. She and I are much more alike than I care to admit.

It was late at night when I finally began to think about suffering. The lights were going out and I was sitting in my favorite spot in the flat looking at the river Thames go by. On the staircase I thought “nobody likes to suffer.” Earlier that week there had been flashing lights and sirens on the bridge that crosses an area of our local quay. The road was blocked off for hours, and we had to go the long way around the neighborhood in order to visit our local supermarket and shopping centre. After it was finally cleared away, four bouquets of flowers had been tied to posts of the barricade which prevents people from falling into the river. An eleven year old boy had jumped in on a hot summers day and on the way down, hit his head against the wall causing him to lose consciousness. It took two hours for emergency crew to find his body.

A friend of mine, when he reported this to me, kept saying over and over “We told those kids not to play there; not to jump in.” I could see the frustration that comes with age and understanding dangers that children remain ignorant to or choose to ignore. I don’t think he would be as upset if a seventeen year old had done the same thing, but an eleven year old. My friend was visibly frustrated.

If you live long enough, you will be miserable. It doesn’t matter how much money you have or how protected your life is. It’s a fact of the human condition; you will suffer. And you will be tested in how much you are determined that life is worth living. The alternative is that you die young, as the case of our neighbor boy. In that case you inevitably make a bunch of other people miserable and such is the depressing side of the circle of life. We love; we grow attached to people, things, ideas, places, and they are inevitably taken away and we are given the choice to clutch on thereby suffocating ourselves and the people around or let go thereby accepting the pain, accepting change and forcing ourselves to never have any stability at all.

A book I was reading not too long ago explained that a sociologist interviewed the victims who’d survived the Jewish concentration camps of the second World War to ask what effect the experience had on their faith. The findings were shocking:

“During the 1970’s, a man named Reeve Robert Brenner surveyed 1000 survivors of the Holocaust, enquiring especially about their religious faith.

How had the experience of the Holocaust effected their beliefs about God? Somewhat astonishingly almost half claimed that the Holocaust had no effect on their beliefs about God. But the other half told a different story. Of the total number surveyed, 11 percent said they had rejected all belief in the existence of God as a direct result of their experience. After the war, they never regained faith. Analyzing their detailed responses, Brenner noted that their professed atheism seemed less a matter of theological belief and more of an emotional reaction, an expression of deep hurt and anger against God for abandoning them” (From: Where is God When it Hurts by Phillip Yancey)

Suffering in any form forces us to reevaluate our ideas about the bedrock of what we base our life on. The eleven percent of people who became atheists as a result of their experience, it means taking a good long hard look at one’s own religion, turning around, and walking away. For others it means undergoing that same examination of one’s beliefs and deciding if they are worth keeping, need to be re-edited, or need to be thrown out entirely. Assuming that there is a God out there, many of us, think that it must be pretty easy being in control of the entire universe. One can look at the Old Testament as well as the Torah and characters such as Moses and Abraham who believed in an absolute God with an enormous personality. As individuals who said to their creator, “Sure it’s easy being up there, why don’t you come down here for a bit and try it out huh?”

As humans, when we think about God, we are torn between two dichotomies. The first is we want Him to suffer. We want him to know how difficult life is if He is out there, and do everything He can to improve it. But the irony of it is, if there is a God. Do we have any room in our human ideology for a God that willingly sacrifices and goes through agony? We can’t stand the idea of a God who lives above us oblivious to the concept of human pain and suffering, and yet the idea that an all powerful being that would willingly submit himself to such agony and pain completely out of love is outside our concept of what God is. We have no classification for a God who feels pain by choice. Perhaps it’s a contradiction of terms, someone who is almighty and chooses the difficult way.

I think about the family of the little boy who jumped into the water two weeks ago, how much suffering they must be going through now. The truth is not only do I hate it; I get every bit as angry as my friend. A child didn’t live long enough to suffer, and ironically, that’s what angers us all. The fact is that his life was cut short on a whim. Now his family is left picking up the pieces, asking the questions which inevitably come from suffering and searching for answers.

In this way, the child is very much like our preconception of God. We want every child to live long enough to know what suffering is and to ask questions about life himself rather than asking them in the wake of a child’s death. But ironically, like everyone else, we know that it would be much simpler if neither God, nor the child, nor anyone else had to suffer in the first place.

There are a few things in this world that I hate more than church shopping. Truth be told I think I would rather be hung upside down on my toenails than work for a place of worship. Sitting in a wheelchair in the middle of church can often be one of the most excruciating things about being disabled, particularly since everyone wants to lay hands on me in an effort to heal my disability. As a rule, the more traditional the church and the older the church, the more this embarrassing behavior occurs until eventually I feel sorry for the want to be faith healers that their God is so small that he can only work amongst able bodied people.

So when I felt the need to find a church in London I made a deal with God. I prefer to be known as one of Gods more petulant children and I informed him that I would visit one church. God had one shot to impress me with a congregation of church folk to keep me committed to going back every Sunday. If he couldn’t, I wasn’t going back and I would give up going to church for another three years.

When I first lay eyes on the pastor of my now adopted congregation, I was leery to say the least. His button up cardigan, sandy brown hair, and confident smile immediately made me think of past members of congregations who tried to encourage me when I needed not encouragement, thereby providing discouragement or attempted to put God in their own image. I was not repulsed, so I promised that I would come back a second time. By the following Sunday, I did just that and was alarmed when I discovered, without requesting it from anyone, a ramp laid down to cover the single step it took to get into the church building. They saw that a member of their congregation would be helped by providing wheelchair access and unassumingly they immediately did just that. It was the first time a church had ever done such a thing for me.

A few Sundays later the pastor told a sermon which heavily featured his mother who had died a number of years before from motor neuron disease, otherwise known in America as ALS. In the sermon he talked about being a young man and fighting off faith healers with a broomstick to get them to leave his mother alone. For him, the disease was not necessarily something to be healed as it was something that could provide a better understanding to who God is and what life is all about.

To say that something good would come out of something tragic is at best a cliché. Whenever I’m feeling depressed and someone said that God will change my pain into something that would glorify him, I honestly want nothing more than to punch that individual in the face. Sufferers sometimes can’t hear about the great joys which can inevitably come from suffering, nor should that be forced upon them during a time of mourning. When one has just experienced tragedy, it tests first of all an individual’s patience. We feel that we will be sad forever; that life will never move on and we will be forever stuck in mourning. I am sure there were many hours of desperation my pastor felt while watching his mother slip away from him. Being faced with suffering of course, begs us to question things about God and life which we would be more comfortable ignoring.

To say that it was because of his suffering mother that I decided to join my church and become an active member of it would be a underestimate of the rest of the congregation. Truth is, I was attracted to the church not for the charisma of the pastor, but because during my times o visiting no one had attempted to heal me. This proved that the congregation understood that life shouldn’t be simple and rather the value of life is much deeper than our shallow limitations of what it ought to be or ought to look like.

There is something immensely comforting and wonderful about experiencing healing from a person who has once been wounded himself. It means not only do they have a genuine desire to see a condition improve, but that they have also been through the darkest night and know when it is appropriate to cheer you up and when it is more appropriate to just hold you while you are suffering because there is little else that can be done with any amount of sincerity.

“The other gods were strong; but Thou wast weak; They rode, but Thou didst stumble to a throne; But to our wounds only God’s wounds can speak, And not a god has wounds, but Thou alone.”

—Edward Shillito in the poem “Jesus of the Scars”

Having someone who has suffered as a confidant and friend as well as a leader means that he knows about the difficult questions which inevitably pop up when one is miserable. With the answers he provides I know that he isn’t simply faking a positive response that the problem will go away on it’s own. When he was a young man, his mother said to me when some able body woman he grew up with and declined into what that was completely dependant on anyone for anything. Having a spiritual leader who knows the way such a life is in the frustration that comes from it, who knows pain and suffering as well as death and joy which are brought out from situations that one would prefer to avoid mean that there is a level of genuineness in the help he offers to give. It also means that he fully knows that this world is not how any of us would like to live it. However, he will tell me whenever I am in the middle of such frustrations due to my own disability now that the pain I feel is just for the time being.

We call them Chuggers, which is a combination of “charity” and “muggers.” They are the people who stand on the street wearing matching t-shirts and holding clipboards in an effort to get you to give them money for whatever cause they are currently representing. These people actually are not volunteers; they are outsourced. Turns out some bureaucratic genius came up with the idea of having an agency that will be willing to stand on the street and solicit donations for any cause. One day they might be collecting for starving children in Africa; the next for the Humane Society, and the next day for child refugees in Pakistan, followed that weekend by underprivileged children in India. They are not passionate about any of the issues for which they are soliciting donations. Seeking out alms to protect those in need has now become a conveyor belt of individuals able to change their opening paragraph to suit any charity at will.

Due to my electric wheelchair, for the most part I can successfully avoid Chuggers. They are always on Tottenham Court Road and I am always able to weave in and out of them with great dexterity. Today however I was not so lucky. An overly cheery blonde Chugger got in my way and asked one of the most amusing questions I have heard in a while.

“What are you doing to help children with disabilities?”

She then proceeded to specifically name my disability as what her organization is raising money for. She isn’t seeing my disability and naming it, it truly is what this organization is devoted to. I look at her; the situation is absolutely comic. One would think that I out of all people would receive a get out of jail free card as to avoiding charity markets. After all, they are supposed to be giving money to people like me not demanding it. Today I can’t resist.

“So tell me more about what it’s like to have this disability?” I ask, just testing her knowledge a little more. She is good. She has definitely memorized the pamphlet. The problem is, she is preaching to the choir, considering the fact that I’m sitting right in front of her. I can’t help but press my luck even further.

“Wow that’s awful! How do those kids even begin to cope, what a terrible situation to grow up in.”

She thinks she has me now and offers me a pen and form to write down my bank details. “I’m sorry, I can’t write”.

“You can’t write at all?” She sounds the rare combination of disappointment and surprise. This was not in her training pamphlet when she signed on to be a Chugger. “Why not?” In the UK, Chuggers cannot write down your bank details, you have to do it for them as some sort of legal privacy act. Because I can’t write down mine, she knows she is not getting a donation.

“Because I have a disability”

This explanation has never occurred to her. I have no choice at this point but to shrug my shoulders and drive away.

For most people, disabilities don’t really have a place. They don’t recognize the problems caused by having a disability until they confront someone who is fully immersed in it. We shuffle our ill and dying into homes where experts can care for them so we don’t have to face the failures of the human body which will inevitably become our own. Worse, in Western culture we seem to like it that way.

But once we get to know someone with that condition, then all of a sudden the charity name disappears entirely. It turns into the condition that “Bob” has, but he’s able to live his life anyway and make us laugh at the local pub. We don’t see the weakness of people we know even when we are standing a few feet away from them. Rather, we see them as an entire being as opposed to fragmentary conditions. This is the difference between raising money for a cause and being passionate about one. This is why I call the people who stand on the corner of Tottenham Court Road Chuggers rather than charity collectors.

As I went down the street after my encounter, I couldn’t help but think of her original question which was actually quite poignant. What am I doing to help disabled children? The best thing for kids with disabilities is to have a society which sees them not as a cause or a victim but as unique individuals capable of racing towards their dreams and being exactly who they want to be. For disabled children, the greatest gift I can give them is not from my bank account but rather, be a successful adult and refuse the easy classification as a victim in need of a specified charity. Although, maybe that’s how the overly cheery Chugger saw me. She didn’t see the disability at all until it impeded her work. Maybe all she saw was the successful adult going down the street who wanted to help in any way they can.

It was the last purposeful thing I ever remember my grandmother saying before she was permanently pulled below the waves of dementia. The entire family was gathered in my uncle’s living room, waiting for his last daughter to be married. My mom’s mother had been going in and out of our world and her own for the past several years, but in this moment she was perfectly balanced on the boarder of our harsh temporal planet and her universe where time was cyclical rather than linear. My grandmother turned to me, introduced herself, and then acknowledging the harpist hired to play at the wedding said, “if I had to live my life over again, I would learn to play one of those.”

I think of that statement often when I lay on the sofa in the home of one of my dearest friends and she plays her harp. She is newly married and nesting, the elegant harp looking slightly out of place amongst the used leather couches and prefab furniture. She looks positively angelic as her fingers leave the strings and she straightens her back in a way that shows her immense beauty hidden by her everyday posture. I open my eyes to look at her and for a split second I am jealous of her talent.

“I have got to sell my harp,” she declares walking away from the instrument out of frustration. “Every time I look at the thing in my living room I feel guilty because I know it should be played in a symphony orchestra and not be here to fiddle around with when I feel like it.” She quickly explains that she’s not about to give up playing, she simply wants to sell an otherwise brilliant piece of equipment to someone who could appreciate the music it makes on a consistent basis. She says that as she was learning to play the harp, she always was a disappointment to her teachers who wanted my friend to turn professional rather than play the harp for enjoyment.

And I am instantly reminded of my grandmother’s statement right before a vacant expression overtook her eyes forever.

I often wonder what talents I will regret not sharpening thirty years from now. Sometimes I swear to myself that I will try every activity that strikes my fancy at least once. And then I look at my friend’s harp and my uncooperative hands, a pair of toe shoes, or even the wii at our local pub, and I know such a promise is impossible to keep. The nature of this vast and seemingly endless world is one that might just give you the freedom to race towards all your dreams but it certainly won’t give you the time. Thinking of my grandmother growing up on a rocky hill in the Ozarks, the opportunity to learn how to play the harp was as slim as me learning how to dance en point. And at the end of her life, she still had unrequited dreams which she wanted to announce to someone she thought was a perfect stranger.

My friend begins playing again. For her, as for any of us really, with her talents come great responsibility to use her talents not only to the best of her ability but also with discretion. For her that means selling her professional harp to a musician who will use it professionally. More often than not we take the talents that we do have and, taking them for granted as commonplace, wish we had other skills in our capacity. If something comes easy to us, we tend to think it is easy for everyone and thus unimpressive. For my grandmother, at the end of her life, it was the harpist sitting in the corner of her son’s living room that represented second chances and unfettered dreams. For my friend playing the harp, keeping up her skills is not simply a blessing, but also a burden of responsibility. And for me, my jealously of other skills robs me of my time, so that, if I am not careful, by the end of my life, I will turn to a stranger and say what I would do differently, if I had to life my life over again.

A short story about life, death, and roadkill.

“God’s in an Art Deco mood today.” The sky was a perfect split between pink and blue. Airplane trails had streaked across the sky, and light sprayed over the earth as the sun rose to reveal its full shape. Every day has its own smell; today it was particularly overpowering. The morning air filled one’s lungs and scraped the old air from the inside. It was not a typical springy morning with birds and fresh creek water flowing against age and towards romance. It was more. But not in the car. The car air was stale despite the dawn. It had become difficult to move as the two drove throughout the night only to have more hours of driving ahead. They had fallen into silence for a few minutes until now.

“Shut up.” The intimacy of the car had annoyed her long before now. Yellow lines passed them at a constant beat. Buh-bum. Rest. Buh-bum. Rest. Buh-bum. They had become hypnotic to her as if the yellow lines acted as a baby mobile. She had a good mind to crash the car. At least that was she could get some sleep. She turned on the radio.

He kept talking about life and goals and fluff over the music. She gave up trying to drown him out and turned the radio off. Shaking her head, she rolled down the window to wake up. The fresh air rolled over her body and achieved its desired effects. Except now he started talking about how wonderful the morning wind was and gifts and such. She was losing her patience fast.

“I love long car rides. They’re so intimate. I always feel as if I know the people inside and out when they’re over. But I feel like I’ve been talking the entire trip. What about you?”

With that, she lost her temper. “Do you have to simplify everything like a two year old?” The car ride had suddenly become much more uncomfortable as the sun rose high enough to annoy. It was low enough not to be affected by visors. Where were her damn sunglasses? She continued her rant. “Name one thing that is beyond your understanding. Everything always turns out just joyfully in your mind, doesn’t it? Listen, in eighty years you’ll be gone, and nothing you have done will matter. That is the only thing that’s simple, predictable, and universal.” She stopped and tried to catch her breath. Her lungs pushed out until they touched her ribs and then collapsed to the motion of the lines on the road.

She almost regretted her explosion. Seeing him with his head rested on the back of the seat, his eyes closed, and his face beaming in the sun made her feel abandoned. The drive had gotten longer and her words hung in the air like a burlap curtain. She wasn’t even sure that he had heard her sine he just sat and stared at the sky. She gritted her teeth and clutched the wheel to straighten her spine. The stillness was deafening as they drove, and time sulked in between the cup holders. She wished he hadn’t told him the truth. He opened his mouth, thought, and then closed his lips again.

“Death.”

“What?” she snapped.

“Death isn’t simple.”

“Death is the simplest thing humanity knows. You simply stop breathing. It’s the end.” She had found her sunglasses and opened them with her teeth. They rode again in silence towards the end of the horizon. He pursed his lips in thought. Looking out the window, he could see her expression in the reflection. Her brown were knitted, and her neck was out stretched like a bird’s. He leaned his head against the glass. The sky now had wisps of clouds stroked across its canvas as if the bristles of a paintbrush had just barely tickled its edge. There was no other car in sight as she hit the gas and the engine roared.

“When I die I want someone to year bright yellow to my funeral. As a celebration.”

“This is depressing,” she shot back, flipping her head so hard to look at him that her sunglasses nearly fell off. She had meant to signify that the conversation was over, but that never stopped him.

“It really is so much bigger than us. I think that is why we think death is so frightening. The fact that at any moment we can be gone is humbling.” She didn’t want to answer him. The silence made the moments lag as the yellow lines spurred past with increasing intensity.

“Kind of a shitty grand finale, don’t you think?” she found herself saying. It was the fact that she even answered that annoyed her. The last thing she wanted on this car trip was to get on a carousel ride the same argument up and down. Turning around and heading away from their destination wasn’t an option. Here they were, in the middle of their trip, where it would take just as long to go home as it would take to get there. Well, one thing was for sure, she was not going to allow him to make this drive into some sort of triumphant conversion experience where she came out with some balanced new attitude. It was either because she was so tired and her eyelids throbbed or because she was so irritated with her company, but she really wanted to crash the car. She could grab the wheel and fling it so the small car would flip so easily. There were wire coat hangers, cigarette lighters, tools, glass windows. At that very second the vehicle became a suicide machine.

“Well, I guess death is never considered as a possibility,” she blandly stated.

“Everyone thinks the sun will rise tomorrow. Nobody can prove it.”

He looked back up to the painted sky and began with his own wide expanse of thoughts. He curled up to the side of the car and squashed his cheek against the window. His thoughts and opportunities made the blue sea above them seem like wading in a tear drop. A hawk flew over the car and into his sight. It spread its enormous wings and floated, suspended in the sky. It glided just over his head so he could see the mouse struggling in its mouth. He could practically hear the small creature struggle in the sky. If freedom came it would only result in a plunge. The hawk tilted, turned away from the car, and soared away from the road.

She squinted from the glare on the road. Putting down the visor to shade here eyes, she took a deep breath and relaxed. The lines had begun skipping playfully along the road. She slowed the car as another came over the horizon. The lines ahead shifted from the heat. Her eyes rested on a lump in the middle of the road. As the car edged closer to the lump, she could make out where the fur had turned gray and the scrawny rat tail had flattened against the pavement. Flies had begun to collect on its rankling intestines. The festering eyes were staring at the sky. Sometimes she wished she weren’t so observant. The car sped past, and it was gone as soon as the intensity was at its maximum. The road was clear and now touched the end of the sky.

From the moment I laid eyes on him I was stuck by how much the illness had ravaged his body. I had grown up in a place where I had seen my share of AIDS victims, or so I thought. But the ones I had seen, leaning their partner’s arm at an evening benefit for the local charity, was nothing compared to how ill he was. As he sat up in bed I wondered where the rest of him was. Then I realized his legs were still under the blanket. They were just so small that it looked as if nothing was there.

I don’t remember his name at all, which is funny because I swore to myself that I would always remember sitting on his bed. During my time at university, I volunteered to visit individuals who were struggling with the final stages of AIDS. South of the Mason Dixon line, this meant many of those we visited had been abandoned by their families. This is not to say that none of these people had loved ones who regularly visited the ward, but many did not. Given my age, my mother had to explain to me later just how terrifying the HIV epidemic was and the stigma which still remained.

“Don’t you know I’m… gay?” the last word wasn’t even whispered- it was mouthed. I nodded and kept asking him questions about the horses he used to train before he became ill. No matter how sick people are, it’s always stories which provide the most targeted anesthetic. In this case he was telling me about himself, what he did and who he used to be. He didn’t spend his whole life in this bed being nearly invisible, he was someone. And then he went and did something very strange.

“Your shoe is untied.”

“Wha-… oh yeah. I can’t tie my own shoes. Fortunately I don’t really walk much so-“

“Will you let me tie it for you?”

To say I was taken aback would be putting it to moderately. I was shocked. Can you get your shoes tied by a dying man? Was there precedent for this? I hesitated, not wanting him to lose any more of his precious energy.

“Please. I’m a very good shoe tying kind of guy.” I nodded and moved my foot to where he could reach my shoe, his transparent fingers working the magic it takes to tie a shoe, the motions of which I still cannot comprehend. He did it deftly, as every adult I know does. In a flash, he was finished a simple double knot remained which was tied with such determination that it would take my friend seven minutes to undo that evening.

I am here. Even though I am ill, I lived. I am somebody.

Six years later and I still think of him almost every time someone ties my shoes. Within a month he had left his body and someone else had taken his place in his bed. Long after his name was gone from my mind the stories of who he was and the actions of what he did that winter night stay with me. He was a man who desired, like all of us really, to be known and loved rather than to be immortal. Even in our weakest moments we want to touch, interact , and even to serve in order to confirm that our existence will be snuffed out long after the breath has left the body.

In his case, I think that for the rest my life, his existence will keep burning.