The Voice Inside

Posted on by under Accepting, Dreams, Self

I have this voice inside of me. It’s only now beginning to speak. It’s only now able to ask for what I need. It is only now finding the words, reaching through the voices that have been with me since childhood.

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When we are babies, our needs are simple and our voice is simple. When we are hungry, we cry. When we are tired, we cry. When we wet ourselves, we cry. As we mature, we gain the ability to say more, ask for more, express more. At the same time, our needs evolve, and so does the voice that grows within.

I am forty-six years old. It has taken these years for this voice to develop. If I had lived to only thirty-five, I would not have felt the emergence of this voice. I would not have reached this developmental milestone, would never have known what this new stage feels like.

Some of have said that we have emotions of which we never speak simply because we don’t have the words to describe them. Perhaps we all are waiting for the voice inside to find a way to express what truly matters to us. It is not the voice of raw childishness (“I want” “pay attention to me”), nor is it the voice of rational adulthood (“you can’t” “you shouldn’t”), but rather a third voice that can only emerge when the time is right.voice

In the Bible, Jesus says “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” These are good words to live by, but it seems that Jesus glossed over an important point. How can you ask for something when you don’t know the words to frame the question? Without a voice with the ability to express the need, the searching question lingers inside you, unformed.

I have this voice inside of me. It’s development is something over which I’ve no control. It has simply appeared and is with me now. It’s as if I were to suddenly grow a third arm, the seeds of which have been with me since birth. What should I then do with this new arm? Should I have it cut off because it’s “not normal”? Or should I make the best use of it that I can?

This voice has been silent all these years. I can feel it as it stretches, reaching for the words, finding the way to express what I need and formulating the right questions. If the eyes are the window to the soul, then the voice is the door. And the door is opening.
Open

I will listen as the voice speaks. I will give it the room it needs to grow, hushing the other voices that are louder and have been with me longer. I will hear what it’s saying and trust that it knows of which it speaks. Maybe, just maybe, it will become a friend and companion for this second half of my life.

With all due respect and credit to Tori Amos for the phrase “silent all these years.”

Happy National PKD Awareness Day

Posted on by under Accepting, Health

I have a wristband. It’s one of those silicone rubber types, in a teal green color, and in six letters it delivers a simple message: END PKD.

When I wear my wristband, no one asks about it. It is overlooked, much like the disease it represents, a genetic disorder that is one of the four leading causes of kidney failure in the nation.

end_pkdPolycystic kidney disease, or PKD, affects millions of people worldwide. My wife suffers from it. Cysts filled her kidneys to the point where they became more than twice their normal size and began to cease functioning.

There is no cure for PKD. The outcome is always the same: sooner or later, the sufferer reaches end stage renal failure. At that point, the only options are dialysis or an organ transplant.

Last year, my wife, who is in her mid-forties, received the news that her kidneys were failing. She was put on the national organ transplant waitlist but we both knew that waiting for a donor to come forward was a long shot. The idea of spending years dependent on dialysis seemed both unpleasant and medically less than ideal. A living kidney donation, we were told, was the best alternative. But whose kidney?

In February of this year, I decided to offer myself as a potential donor. If I said it was an easy decision to make, I’d be lying, since there were many factors to consider. We do not share the same blood type and we are obviously unrelated, so I thought it might not work out. But making the offer and getting screened was a small act that felt like the right thing to do.

As it turned out, the screening showed I was a suitable match. On August 15, we had the transplant surgery. I came to believe it to be a way to move forward and do something positive for her, for our children, and for our families.

As you read this, my kidney is working in my wife in place of the ones that PKD destroyed. However, this does not end PKD for her or for the population. Much has yet to be done to understand how the disease works. Current research holds out hope that, by reducing cyst growth with appropriate medication, those with the disease can delay end stage renal failure and live with their own kidneys for as long as possible.

Today is National Polycystic Kidney Disease Awareness Day. I am wearing my wristband both as a symbol of where we’ve been and as a reminder of what we still need to do. If you see me, ask me about it. I’ll be happy to tell you what it means.

25 Ways to Appreciate a Kidney Transplant

Posted on by under Accepting, Health

Last year, we learned that my wife would require a kidney transplant. This did not come as a surprise, since she suffers from polycystic kidney disease (PKD), a genetic renal disorder that affects one in every 500 people and sooner or later destroys the kidneys’ ability to function.

0817131036After some soul searching, I decided to give her one of mine. It was not an easy decision to make since there were many factors to consider, but I am at peace with it now. In fact, I’ve come to appreciate some things about a kidney transplant that I never would have thought of before.

After having read Amy Gutman’s 40 Ways to Appreciate a Kidney Stone, I thought I would create my own list of ways to put a positive spin on a tough situation. (She, in fact, only came up with 25, so we’re on par with that, and I think it’s plenty.) So here it is…

25 Ways to Appreciate a Kidney Transplant

1. It’s not cancer. An organ transplant is major surgery with all the attendant risks. However, it is a fairly proscribed event–especially kidney transplants–with defined boundaries and well-understood outcomes. Cancer is still the king of menacing diseases. There is so much that remains unknown about cancer, and so many ways in which it works, and the outcomes are so uncertain. It really destroys lives.

2. It’s not some mystery illness that eats away at one’s quality of life without any hope for a cure. In fact, there is very little that is mysterious about kidney transplants any more. The first one was performed successfully in 1954, and today, thousands are completed nationwide every year.

3. We only need one kidney anyway. The reason for why we have two is buried in the mists of prehistoric time. Today, in most developed countries, the second one is a redundant system we’ll probably never need. And studies have shown that the long-term health of donors is not significantly different from that of the general population.

4. A kidney has an almost plug and play quality to it. It’s a relatively simple organ that performs its job well. Once you get the right match and make the transplant, it starts to work. My wife was producing urine almost immediately, and her blood chemistry improved dramatically within days.

5. Urine never looked so good. The production of urine is a bodily function we all take for granted. But were it not to happen, we would die. My leftover kidney has taken up the task heroically, and while I have been annoyed these past few days by how often I visit the bathroom, I am also very thankful that all is well for both me and my wife.

6. Kidney transplantation is quite literally life-saving. I’ve never saved a life before. Now I have.

7. Becoming a living donor does not require that you be a blood relative to the recipient. While it can make screening easier, it by no means is an absolute rule. I am a case in point.

8. Becoming a living donor does not require that you be the same blood type as the recipient. I am Type O and my wife is Type B, so I’m what’s called a “universal donor.” But more than that, there is so much that is understood about the transplant process, and the anti-rejection drugs have become so effective, that blood type matching is less important than it used to be. Frankly, the fact that it was a living donation is more relevant to her long-term outcome than any blood type match.0816130915

9. In by 6, out by 5. We had the transplant done at the University of Maryland Medical Center (UMMC). They perform hundreds of kidney transplants a year. They are so good at it now that when surgery is scheduled, you are whisked through a process that seems almost routine.

10. When surgery is planned and well executed, recovery goes quickly. While I am still recovering at home, I left the hospital two days after my kidney was removed. My wife will spend about a week in the hospital. The healing is already happening. Which leads me to…

11. With planned surgery, we didn’t have to cancel or reschedule anything. This has been on the calendar for months and we were psyched up for it.

12. Effective pain management is a blessing. With the pain under control, I was able to get out of bed sooner than I probably would have otherwise, which the doctors told me was key to getting my normal functions back on track. Pain can also affect you psychologically, so having it controlled helped me think clearly.

13. Neither my wife nor I have experienced any adverse reactions to our medications. I’ve heard that for some donors, the pain medication makes them nauseous or woozy, which diminishes the positive effects. I had no such problem.

14. Being a living donor, people treat you like a hero.  I didn’t do this for personal glory, but the recognition is nice.

15. Donors at UMMC get a great hospital room. It’s more like a hotel room, with an eighth-floor view of Baltimore outside. It sounds like a small thing, but it made a big difference for me in my recovery.

16. It’s not a traumatic injury, like a car accident or a gunshot wound. It is a tightly controlled operation which means that the recovery is faster and more certain.

17. It builds community and brings out the best in people. My wife is now a part of the transplant community, and I am part of the world of living donors. It is a fellowship from which our membership can never be revoked. Furthermore, just saying that I am an organ donor brightens people’s days and inspires them to offer cheer and support.

18. You get to meet interesting people. All of my nurses were wonderful. And the surgeons and anesthesiologists were top-notch. In addition, my wife’s surgeon turns out to be a member of our religious community. What a small world!

19. Insurance covers the costs. Kidney transplants have such an established track record as an effective treatment that most medical plans cover it to some degree. Even Medicare has provisions for transplants.

20. It’s not living with an alcoholic spouse.

21. It’s not living with an autistic or chronically ill child.

22. It’s not living with abuse.

23. It’s not living with mental illness or a neurological condition.

24. I got used to wearing the hospital gown. I can see the appeal of sun dresses.

25. I’m losing my fear of needles. So many have gone in, what’s the point (pun intended)?

If you found this interesting, you can find more on this topic here and here.

Stay At Home

Posted on by under Career, Dreams

As much as I like the idea of becoming an unconventionally employed, stay-at-home dad, I get to wondering what impression I would be giving to my kids.

“What does your dad do?” they would be asked.

“He does a lot of gardening, and laundry,” they would say. “Sometimes he plays his guitar.”

“No, I mean, for a living,” the questioner would say.

“????”

We’re told that work is a thing you do, not a place you go – a common saying of telecommuters and the tech industry. Right?Trust me.

But part of being a parent is being a model for your kids to learn from, for better or for worse. They get their impressions of being an adult based on what they see the grownups in their life doing. If I took on the role of primary householder, what model does that present, especially to my son? Would it show the benefits of an unconventional life or demonstrate that dad is a slacker?

A lot hinges on semantics: what do we mean by “do”?  When people say “what do you do?” they really mean “what activity do you perform for which you make money.”  For some people, the answer to that question is obvious and clear: “I’m a doctor” or “I’m a lawyer.”

For many others, however, what they “do” and what they want to be doing are very different, and answering the question can be much more complicated. “I serve coffee, but I’m really a musician,” for instance. Or the job has no recognizable label: “I key summaries of government activity into a database so that others can search and retrieve the information based on topic or stage of government action.”  It does not roll of the tongue easily, or have the same cachet as “I’m a reporter.”

My kids are already at a disadvantage because they don’t really know what I do.  I leave for work every weekday and come home in the evening, presumably having done something valuable in that time. It is hard for me to explain it to them because what I do is very academic and very derivative, and it takes place out of their view and field of experience (more on that another time).

Back during my involuntary hiatus in employment, I was telling a neighbor about how my job search was not going well.  I had hoped to use the situation to find an ideal new job but was close to settling for any job offer that came across my desk. “As long as it’s not soul-sucking,” was his advice.  And he is right, of course, but sometimes you have a trade away your soul because you’ve been left with no choice.  Forget about gaining phenomenal guitar-playing prowess. These days it is enough just to keep the roof over your head.

In this age of declining prospects for employment for the next generations, I see two alternatives.  One is that we continue with the current model for education and career and hope to God that it is not your kid that ends up on unemployment.  That requires a lot of blind faith and wishful thinking.

The other is that we redefine the concepts of employment, career, and what people “do”.  If we did that, we must infuse these concepts with personal passion and social goals.  We must be more liberal about labels and pigeonholes, and what is deemed “okay” for one’s life pursuit. If a kid wants to be a “rock and roll education reform administrator” instead of “lawyer”, we should not just think it is fine; we should encourage that choice and support it unreservedly.

I think I’m too stuck in the old industrial model of dad-commutes-to-work, dad-brings-home-the-bacon for there to be any hope for me.  But I hope my kids can find not a career in the conventional sense but a life’s work. And if that means staying at home, let it be so.

Cicada Days

Posted on by under Fiction

This is an excerpt from a short story I wrote after my town was visited by 17-year periodic cicadas, back in 2004. Since another brood has just emerged this year, I thought it would be good to share.

Annie waited for her father in the shade of the dogwood tree.  He would be home from work soon, so she sat on the concrete steps leading to her front door, listening to the cicada noise.  The insects made a sound that was remarkable to her five-year-old ears.  She listened closely.  Sometimes it was a soft, background whir; sometimes it was a loud, throbbing buzz.  Sometimes it was both, the sounds layered one on top of the other, creating a two-tone droning chorus of insects.  The buzz undulated in and out with a sonic frequency only the bugs understood.  The whir, though, was constant, continuing deep into the night long after the buzz had died down.

Annie watched the cicadas around her, on the tree branches, the bushes, the blades of grass.  There were always a few in the air, flying awkwardly, seeking a better place, one less crowded perhaps, or maybe one bright with insect life.  When a cicada would land at her feet, she’d hold her finger out to let it crawl onto her hand so she could bring it close to her eyes.  They did not seem to be very smart, she thought, as each would just stand on her hand or move slowly up her arm.  With a bulky body, black triangular face, round red eyes, long, orange-rimmed transparent wings, to her they were both fascinating and a little scary.  She’d let them crawl on her bare arm a few seconds, until she could no longer stand the prickly little insect feet against her skin, then brushed them off and watched as they flew on to wherever they needed to be.

On the steps in front of her, cicadas were scattered randomly here and there.  It was hard to tell the live ones from the dead until one moved.  There were so many dead.  Some never emerged completely, expiring while only half out of their skin.  Others appeared to be normal, except they were dead.  From where she sat, Annie could see the surface of the street that ran past the end of her driveway.  There, hundreds of bugs lay smashed by passing cars, their bulbous bodies flattened, their lifeless wings fluttering in the wind like feathers or leaves or maple tree seeds.

But even with so many dead, there were still enough alive to make the noise that surrounded her, that filled the hot, humid air.  It was impossible for her to know just how many cicadas were in the trees around her.  She imagined it was one creature that produced the sound, distinct from the goofy black bugs crawling around at her feet.  It was hypnotizing, and unbearable.  She closed her eyes and put her hands over her ears.

bug girlAnnie felt something touch the top of her head and she flinched, swatting with her hand.  She then opened her eyes to find her father standing on the step in front of her, stroking her hair.  She took her hands away from her ears.

“Hi, bug-girl,” he said, smiling.

“Hey Dad,” she greeted him.  Then, quickly, she said, “Dad, I gotta tell you something.”

“Yes, honey?”

“There are so many dead ones.”

“Dead what?”

“Cicadas.”

“Oh, right,” he said. “But there are so many more alive.  Millions and millions.  Think about that.  The dead ones aren’t so many, then, right?”

“Yeah,” Annie said. “But the dead ones still make me sad.”

“Don’t be sad.  It is part of nature,” he replied.  “It is how things are.”

She was quiet for a moment, watching a cicada crawl toward her father’s shiny black shoe.

“Nice shoes Dad,” she said.  “Don’t step on the cicada.”

She stood up and instinctively sought his hand with hers.  Together, they walked up the remaining steps to the front door of the house, threading their way through the insects.