Wednesday, October 26, 2011

Repost of One of My Diagnostic Journey Essays

What follows is an article I wrote in February 2011 and which discusses my diagnostic journey. I have edited parts of it and will likely continue to do so. If you think this article may comfort or bring awareness to someone, I'd love for you to forward it.

The Rarest of the Rare

After more than 13 years of symptoms problematic enough to interfere with daily living, I have finally been diagnosed with a genetic disease called, depending on the specialist or the paper, sodium-channel myotonia congenita, atypical myotonia congenita, or acetazolamide-responsive myotonia. It falls under the heading of potassium-aggravated myotonia, which itself is part of a larger family of ion channelopathies. My disorder is, according to the little bit of medical literature I've been able to find, one of the rarest of the rare.

I have to wonder.

I had what I now recognize as symptoms even as a child - large muscles, tightness in my back, an unnatural tolerance for the hardest of back rubs - but it wasn't until I was an adult that I began to feel as though I was constantly pulling one muscle after another. At the time, I was a struggling single mother who worked full time but could not afford health insurance. I "toughed it out" and "pushed through the pain" for five years - only to later hear that I was "too young to feel so old." (Precisely.)

Later still, as symptom after symptom appeared and ANA (antinuclear antibody, the standard blood panel for detecting many autoimmune diseases) after ANA came back negative, I would get shrug after shrug. The doctor who'd once told me I was too young to be in such pain now told me that maybe I was simply dealing with the effects of aging. As my world and the number of activities in which I took pleasure began to shrink, I began to see skeptical looks on the faces of the medical professionals who examined me.

I was prescribed muscle relaxers, but they did little to nothing for the muscles that were tight, and they left me more fatigued than ever. I quickly ruled them out as a treatment option.

A new general practitioner ordered an MRI (magnetic resonance imaging) of the brain, neck, and spine. These MRIs showed osteoarthritis of my neck and spine, but not of a serious nature and nothing unusual for my age. A neurologist told me I needed a rheumatologist; rheumatologists speculated about fibromyalgia and chronic fatigue syndrome, but ruled them out.

Another general practitioner, a gem of an internist who refused to give up and whom I still see, referred me to another neurologist and requested he perform an EMG (electromyography). The neurologist told me point blank that my problem was anxiety, I needed a neurospychiatric exam, and that he could order the EMG but that he "would bet money it would be negative." I bartered. I'd take the neuropsychiatric exam (and shut down that line of thought) if he'd order the EMG.

The neuropsych was normal. The EMG was not. I suppose I'm lucky that my mental health exam was normal; after all, one might think that depression and anxiety could be natural side effects of physical disability, especially physical disability that has gone without acknowledgment or treatment for years on end.

My first diagnosis was of cramp fasciculation syndrome, a fairly rare syndrome that encompasses twitching, cramps, and possible muscle stiffness, pain, and paresthesias (sensations of numbness, tingling, cold, etc.). It didn't not fit, but it also didn't explain the cumulative nature of my muscle stiffness and pain. It didn't explain why each day I was forced to do a little less than the day before, why a trip to the mall would make movement difficult for two or three days afterward. The medications I tried reduced the amount of twitching I experienced, but I didn't much care about the twitching to begin with - the excruciating pain that resulted from the muscle tightness was the real problem.

At this point, my new neurologist (oh, yes, there was a new neurologist) ordered a muscle biopsy; the changes it showed did not help anyone diagnose the problem. My neurologist went on maternity leave, so her mentor ordered genetic testing from a private laboratory. When the results showed a mutation of my SCN4A gene, he said I needed a specialist. The doctor he recommended was no longer taking patients, so my wonderful general practitioner was able to get me in to see a research university specialist.

The university specialist, after taking a full history, looking at my records, and performing a new EMG, gave me my diagnosis. He had a resident sit in on the EMG. As he was instructing the new doctor in EMG technology, he was also instructing him to listen carefully to patient histories and cautioning him to avoid jumping to conclusions. Neurologists, he said to me later, dismiss patient complaints like mine as psychiatric far too often. He'd seen it many times before, and it was heartbreaking.

I am grateful to the university specialist for the validation. I'm even more grateful to him for making sure that the residents he's responsible for training will be responsible and good doctors themselves. And I'm heartbroken that there are not more doctors as open minded and thorough as he.

I have my diagnosis now, which means I don't have to deal with skepticism (at least not the kind I previously experienced from many medical professionals) and I do have treatment options that will work. But my experiences up to this point have not been unique, have not been uncommon, have not even been abnormal. Patient after patient just like me will tell you that my story is our story, is a story that can arguably be said to be the standard. So many who are struggling are still getting negative blood test results, still getting shrugs, still getting "maybes," still getting skeptical looks or insulting accusations. They're being told there are no options, and they're being lied to. What are the treatments for ignorance and indifference, and how do we ensure that they become the rarest of the rare?

General Update about Things

*My husband came home with beautiful pink roses yesterday. "Roses!" I said, happy as could be. "Why did you get me roses?" "Oh, I don't know," he said. "Maybe there's something about today that made it a good day to get you roses." Yes, my friends, I had forgotten our anniversary. We went out later for our coffee date, and it was wonderful. (Coffee is what we do for our anniversaries. Mostly because it is inexpensive and allows for flexible scheduling.)

*I might have already mentioned this, but I have a poem forthcoming in the January issue of Contemporary American Voices. That's the online literary journal edited by Lisa Zaran. I've read her work for years and have even been in a couple of the same journals as she (which thrills me).

*The weight loss continues and is really taking no effort on my part. Not to worry; there is no reason to believe that I am ill. Appetite suppression is simply one of the side effects of the new medication. I'm eating almost whatever I want, but I'm not overdoing it. (I say "almost" because I'm still avoiding a few things because of their effect on the myotonia; for instance, I discovered just a few days ago that white meat chicken is still a bad idea. However, the meal that led me to this discovery was delicious. Seriously, what a great way to say goodbye to that food.)

*The views for the medical essays have dropped off. Which is not at all surprising, but is disappointing, since they were written simply to make a point. I took down a couple of the medical-related posts that were on this blog some time ago; I think I will repost the Associated Content piece here (the ability to repost anywhere is why I went with AC and kept my rights to begin with). I don't think the piece will get many more views, but it may get a few - and maybe someone will find it worth passing on and it will gain a little momentum again.

Tuesday, October 25, 2011


I Want Some of That

I had an invite;
was maybe, probably,
the only one who needed it.
I watched the drinking buddies,
men and women,
couples, singles,
all so easy with each other.

I sipped my beer and knew
I'd never really
be a part of this.
I sipped my beer and knew
I'd never really
want to,
so it was cool.
We were all on friendly terms,
and it was cool.

But I want
some of that.
I want barbecues
that do not feel like work.
I want to feel safe
if I'm a little out of hand.
I want
some of that.
I want some
of that.

Sunday, October 23, 2011

New Review

My friend Jen, otherwise known as the Momma Hen, recently reviewed Angst, Anger, Love, Hope. Her review can be seen here.

If you love family living blogs, you'll love Momma Hen.

Tuesday, October 11, 2011

Just for Fun - Our Halloween Decorations!

We get pretty enthusiastic about Halloween around here.

We got a bit of a late start this year, but today we finally cranked up the spooky music and got the hallway decorations up.

I hate writing captions for photos, so I'll just make all the notes here. Hmm. Okay, the bat is white because he's made of glow-in-the-dark material, as is the skeleton in the foreground. The pumpkin man was never going to look like his picture on the bag. Never. Even if we'd had enough stuffing, which we didn't. But I still think he's cute. Everything else is pretty clear.

Hope you enjoy!

Thursday, September 22, 2011

The First Principle is the Hardest. . .

Most of the members of our household are Unitarian Universalists. Now, there are a whole lot of people out there who don't know what those are - which is a little stunning to me, given UU history, but not so odd when I think back and realize that at one time I myself didn't know a whole lot about UUism. What I have always known, however, is that Unitarian Universalism is a mainstream religion, so it does absolutely confound me when people insist on believing otherwise.

So, I'd like to take a moment to discuss UU history and values.

Unitarian Universalism was created by the merger of Unitarians and Universalists in 1961.

Unitarianism had been in Europe since the mid-1500s, and in America since the early 1800s. There have been many famous American Unitarians, among them Paul Revere, Ralph Waldo Emerson, John Quincy Adams, and Louisa May Alcott.

Universalism became popular in the late 1700s; English Universalists fled to America to escape religious persecution, and the movement took off. A few Universalist names you might recognize include Clara Barton, John Murray, and P.T. Barnum.

The Unitarian and Universalist denominations were both Christian. Because both organizations eschewed dogmatism, however, the consolidation led to a more inclusive approach to religion. Now, you may meet Unitarian Universalists who are Christian, Jewish, atheist, Muslim, or of any other belief system. Unitarian Universalism is a popular choice with families whose members come from more than one religious background, because it does not require that anyone relinquish long-held beliefs or customs. In fact, it honors the religious traditions of its members. Anyone who wants to can attend Passover, Christmas, Kwanzaa, or other religious holiday services, and no one is pressured to attend any of them.

It would be a mistake, however, to assume that the lack of a creed means that Unitarian Universalists as a whole have no value system. Unitarian Universalism congregations "affirm and promote" seven principles. Those are:

*The inherent worth and dignity of every person

*Justice, equity and compassion in human relations

*Acceptance of one another and encouragement to spiritual growth in our congregations

*A free and responsible search for truth and meaning

*The right of conscience and the use of the democratic process within our congregations and in society at large

*The goal of world community with peace, liberty, and justice for all

*Respect for the interdependent web of all existence of which we are a part.

The first principle is the hardest for me to internalize. Then again, as a Christian I've always believed that I should love my enemies, and I've always struggled with that one, too. I think that most people who are honest will admit to some difficulty recognizing the inherent worth of others sometimes; furthermore, how much inherent worth a person has, or what it means to love, isn't always clear - and sometimes it's easier to plead ignorance or argue minimums than it is to work at recognizing and loving.

I do admit to bristling a bit when people hurl ridiculous comments out about Unitarian Universalism. For instance, when I hear that my beliefs are dangerous or unhealthy or wrong or one of the other ways the insult is often worded, I would love to respond with, "Um, so you don't believe that every person has worth and dignity? Or maybe the problem is that we shouldn't be compassionate? Or do you take issue with peace and freedom?"

But I don't. Instead, I blog.

Wednesday, September 21, 2011

The Story I Promised and More

The Story

Okay, remember how I promised a cool little synchronicity story? Well, here it is:

Not too long ago, my son and I were traveling by car and I got us lost. Really lost. Like, we'd only been about five minutes from home when I thought I'd take a simpler route back to the main road we needed and we ended up driving for almost an hour.

I drove us through every little town in the area - many of which I'd heard of, but had never actually been to. The roads we traveled were mostly residential, so I wasn't able to pop into 7-11 and ask for directions. Panic was starting to set in when one of us changed the radio station. And here's what we heard, courtesy of Bob Marley:

Don't worry about a thing.
Every little thing's gonna be all right.
No, don't worry about a thing.
Every little thing's gonna be all right, now.

I started to laugh, and I looked at my son and said, "I wonder if he's singing that to me." Now, it had been a long time since I'd heard the song, so I really didn't know what was coming next (though I admit the lyrics may have been buried in my subconscious).

"Mom," said my son a minute later. I glanced over and he nodded toward the radio.

This is my message to you.

Just then we had to merge onto a multilane thoroughfare, which always makes me nervous. But traffic was fairly clear and I had no trouble navigating, and as soon as we were on the road, I saw an exit sign to a highway I recognized. I made the right guess when I had to choose between going left or right, and we were home between ten and fifteen minutes later.

Other News

I saw a new doctor this week, and the story behind that appointment is itself more than a little synchronistic. Turns out that one of the very few experts in the world in sodium channel disorders is only five minutes down the road from me. Really. He's in a business park right beside Walmart.

I got his name from a woman on a periodic paralysis listserve who drives her daughter up from North Carolina to see him. When I told him I got his name from a woman who drives in from North Carolina, he said, "Oh, that's not the farthest. Hmm, what's the farthest? One person comes in from a ship on the Caribbean. Oh, and one guy comes in from Utah."

I deal with symptoms for almost fifteen years before I get a diagnosis, and when I do get one, for something very rare, I'm just a stone's throw away from one of the most experienced doctors in the field? Amazing.

Two other really cool things about the appointment: the doctor was really nice, and getting on the schedule didn't take long at all. Most neurologists around here seem to have to schedule three months out or more.

The good doctor really seemed to understand what I was saying about my shoulder, and he also has a theory about why even deep tissue massage doesn't seem to have an effect: he thinks the muscle worst affected runs under my shoulder blade.

He's adding to my medication, and although he said that whether it would help is pretty much a crapshoot (my word, not his), I'm really hoping this will do it. Hey, much stranger things have happened to me than taking medications that have worked as expected, right?

Saturday, September 3, 2011

Angst, Anger, Love, Hope Reviewed by Philadelphia Stories!

The review can be seen here.

I'm very excited. The only thing that would make this better is if reviews ran in the print version of the journal. I don't think they do; there weren't any in the summer issue, at any rate.

But still - Philadelphia Stories! That's a fairly big deal.

I wonder if this technically bumps me from obscure poet to minor poet? That would be sweet.

I'm still planning on adding the cool story I mentioned earlier, but I also still don't know when. I've been doing a bit more editing lately, so I haven't been up to doing much more than clearing out my email each day - and I've only done that to keep the job manageable.

Friday, August 5, 2011

Interview with Tom Williams

My interview with author Tom Williams can now be found here on his blog (so can another poetry sample). If you have a chance, check out his other posts; Tom is a really sharp and interesting guy. The interview was lots of fun - I appreciate it, Tom!

If those reading can comment at the bottom of the interview, that would be awesome! I'd like Tom to know if he gets a little traffic coming his way from this blog.

Friday, July 22, 2011

Good Things

An essay of mine about my experiences getting a diagnosis is now available in the VoxPop section of Philadelphia's Metropolis.

The essay seems to be responsible for an increase in views of my Associated Content article on the same topic; righteous anger at patient mistreatment seems to be slowly but surely making its way through cyberspace. Now to hope we reach a critical mass and force some change in the physical world!

I'll soon be doing an author interview with my friend and fellow author Tom Williams on his blog, The White Rajah. Not yet sure of the date.

I've lost 20 lb. in just over three months. Of course, that's because I've been nauseated and my diet has been severely curtailed, but still - it's 20 lb.! It needed to go, and I'm not complaining.

There are some good personal things going on, too, but it feels a little exploitative to go on and on in a public forum about those I love as opposed to just talking about myself.

I also have a cool little power-of-positive-thinking/synchronicity story to share, but I'll have to get to that at a later date. My arm is done for the day.

Monday, July 18, 2011

Book Signing

While visiting relatives this summer, I joined my sister (Melinda Clayton, the brilliant author of Appalachian Justice and Return to Crutcher Mountain) in our Tennessee hometown for a book signing. Neither of us had ever had a book signing before, but we came through it not only unscathed but quite pleased. Hope you enjoy the pics!

Tuesday, July 12, 2011

Giving Outbrain a Try

Outbrain is a service that adds reading recommendations to blog posts. I'm hoping it will drive traffic to the blog by adding links to some of my posts to others' blogs.

We'll see how it works out.

Friday, July 8, 2011


Raising an Adult Takes Courage

"Remember, Tracy," my mother said, "you're not raising a little boy. You're raising a man."

I listened, and I'm thankful I did. I've had a great kid with which to work, granted, but I'd like to think that his current groundedness has something to do with the right combination of self-esteem building and value building. (This is where I send out a silent prayer that his groundedness continues, knowing that life is unpredictable and that sometimes the best parenting in the world won't be enough to surmount its problems.)

Enough has been written about praise and positive reinforcement to overwhelm anyone looking for that information, so I won't discuss any of it here, helpful though much of it is. Instead, I'll say something these resources don't often address: Self-esteem building is inextricably connected to value building. Think about it: When neighbors steal from us, we keep our distance. When someone hits us or calls us names, we think he or she is a jerk. When we do those same things, we know that we have done things that are hurtful to others.

If we have hurt others, all the praise and positive reinforcement in the world will not erase what we know. In order to like ourselves, we have to live as likeable people. Likeable people make mistakes, and likeable people sometimes do heinous things. But likeable people try to do their best, and they make it a point to do better when they have fallen short of their responsibilities. (Dealing with guilt is a heavy, heavy issue, and though there may be a natural progression to this concept from the one preceding, the discussion is best left for another day.)

It takes courage to raise an adult.

It takes the ability to be clear eyed and clear headed; it takes the ability to break your own heart.

In a figurative sense, our children are perfect. But it is exceedingly harmful to them to teach them by words or deeds that they do no wrong.

When we refuse to see the misdeeds of our children, we are refusing to help them learn. If they need help, we are refusing to get it for them; after all, how can we remedy a problem we refuse to acknowledge? We are allowing them to fall into habits that will lead them to dislike themselves.

So we have to accept that our perfect children will sometimes do imperfect things - will seek instant gratification by stealing cookies from the jar, will pinch or pull hair or spread rumors to get attention if feeling insecure.

We have to be willing to show our children that negative behaviors bring negative consequences - willing to tell them they have to skip going to the movies, or that they must do extra chores. We have to be willing to sometimes see them superficially unhappy if we want them to have any chance at becoming genuinely happy.

Further complicating matters is what happens when other children observe a child's negative behaviors. Remember the examples above about stealing and hitting and name calling? Those end results happen. Kids don't make friends with people they cannot trust to treat them with kindness and respect. Simply put, they don't make friends with people they find difficult to like. The child who misbehaves is left isolated, and that isolation does nothing but reinforce the terrible belief that one deserves to be alone.

Raising an Adult Takes Love

Raising an adult takes an incomprehensible and unlimited amount of love. You may think this is self evident, and it would seem so. But in so many cases, to so many people, it is not.

It's important to love children enough to see them clearly and therefore teach them and guide them, but unconditional love is vital in other ways, as well.

I have a tendency to be overprotective, one I must constantly fight, and I hate the traffic here. Scares the heck out of me. I've seen drivers do some bizarre things, things that never would have entered my mind (such as using a left turn lane to turn right, cutting across other lines of traffic). I would like to cross the street with the kids. Heck, I would like to hold their hands when they cross. But I don't. I simply remind them to have their phones on and to be careful. Children need to grow into adults able to spot dangers, and they won't if never given the opportunities to do so. I have to love them enough to refuse my own instincts.

When I divorced my son's father, things were uncomfortable. Contentious, even. There were times in the early years when the temptation to let my thoughts fly out of my mouth was strong, times it would have been easy to insert a snide remark into a conversation, a remark that would not have even been consciously noticed by my son but which would have done the work of coloring his perceptions of his father just the same. I am sure my ex-husband faced the same temptations.

But I loved my son more than I hated his father.

Allowing my son to believe negative things about his father might break my ex-husband's heart, but it would just as surely cause conflict and pain deep within my son. And should I succeed in pushing the man out of our lives entirely, my son was sure to grow up with a chasm of need.

My ex-husband had more reason to be insecure. He lived far away. He couldn't visit often. How easy it would have been for him to be afraid that our son's attachment to him would be broken, and to begin to believe that the way to strengthen it was to weaken our son's attachment to me. But my ex-husband loved our son more than he hated me and more than he feared the unknown.

I'm so glad we made the choices we did. Our anger died away, we both became able to see our mistakes and better understand the other's, and we became friendly over the years.

And all of that could have become upset had one or both of us become insecure upon the remarriage of the other. But the last thing we wanted was for our son to feel even slightly uncomfortable in the home or new environments of either. We each loved him more than we feared losing him.

Instead, we taught him that love is never divided, only multiplied. That the more love one gives, the more love one has for giving.

We have all seen it to be so.

Monday, June 27, 2011

Some Posts Have Lost Their Comments


Just wanted to fill everyone in. If you've commented and your comment has disappeared, I did not delete it. I think it might be because I've started using Disqus for comments.


Update: Actually, all posts had lost their comments. But I have removed Disqus, and all comments have been restored. Whew!

Sunday, June 26, 2011

Another Recap of Links

I do this occasionally, just to make all the links to Angst, Anger, Love, Hope easy to find.

Paperback on Amazon

Ebook on Amazon

Paperback on Barnes and Noble

Ebook on Barnes and Noble

Ebook on Smashwords

Paperback on the JMS Books LLC site

Ebook on the JMS Books LLC site

Address to the BuxMont Unitarian Universalist Fellowship on June 26, 2011

What follows is an address I delivered at my Unitarian Universalist fellowship. I used poems throughout the service; I don't reprint them here, but I do provide the titles in the correct locations. I would caution readers that it is often a mistake to confuse a poem's author with its speaker, though it is very possible to get an idea of a writer's ideology through his or her writing.

Through the Inside Out - Using Solitude as a Path to Communion


For the sake of context, I should start at the middle.

In what my happy memories tell me was a very long time ago and my worst memories tell me was very, very recent, I lived in Trenton, New Jersey. I had a few bad relationships behind me and was working at a dead-end job. I had no car, no computer, and no means, and the one-bedroom apartment my young son and I shared was small, threadbare, and roach infested. It was so roach infested, in fact, that one could look closely at the face of my digital clock and see tiny dead baby roaches against the numbers.

I feel the need to tell you, lest you get the wrong impression, that I kept the place as sparklingly clean as I was able. Resigning myself to others’ faulty impressions of me was, and in fact is, one of life’s greatest challenges for me. I knew very well that the poor were thought of as ignorant, lazy, and dirty, and when I might have gotten close to forgetting, one customer or another who came into my workplace was sure to let me know. At the same time, clerks and shoppers in the mostly minority neighborhood I lived in would often give me angry looks and would sometimes make rude comments as I went about my errands. The people who resented me for my imagined life of privilege would climb into their four-door sedans as they headed home, and my son and I would make our way home on foot across four lanes of traffic. Thankfully, there was a median on which I could shift my shopping bags or laundry basket from one arm to the other; I could not use both arms, of course, because one hand had to be free to hold my child’s. Racism is not and never has been limited to race.


I knew very well that the difficulties I faced were in part the result of a life lived thoughtlessly and selfishly. But though I could partly accept the consequences of my actions, I could not bear the guilt of knowing that my bad choices were crippling my son.


We made the best life we could with what we had, but there was precious little in the budget for socializing or entertainment. I had one close friend who had children of her own and with whom I had nothing else in common, and we had a small handful of acquaintances who would invite us over for the odd barbeque. On the weekends, Dan and I would walk to Dunkin’ Donuts or to the nearby farmers’ market for a treat, and on the way home, we would stop and rent dollar movies from the local Blockbuster.

Our routine lives in my heart as a blurry collection of some of my most cherished memories. In our most difficult moments, we sometimes forget that difficulty and happiness are not mutually exclusive. I certainly very often forgot, and forget it, myself. I wish I had realized then how important it is to breathe in each moment.

I began writing because I needed to do something; I needed to organize and make sense of my anger and guilt and grief, needed to make hope tangible. I needed to do something, and I could not afford to do anything that required more than paper and pen.

VERONICA GHAZAL (A ghazal is a kind of form.)

Writing did help me organize my thoughts and make sense of my feelings, and in so doing, helped me become a stronger person. It did not, however, take away my loneliness or my dissatisfaction with our circumstances. Instead, writing helped me very much to distinguish loneliness from solitude, to become comfortable with the person I was becoming, to recognize that I should enjoy my time alone with my thoughts, because the opportunity was finite. Writing helped me learn to see the moments worth savoring that lie outside the hardship.

Looking inward in the way that writing poetry requires gave me something else, as well. From the very beginning, so much a part of the process that it was never an idea but was always a simple experience, existed a conversation. Some day a person with the same feelings as I would read my words, and then neither of us would be alone.

That is still one of the most significant reasons I write poetry. I write fiction, when I write it at all, to see if I am up to the challenge of writing fiction. The answer is usually no. I write essays to make points that I don’t hear others making. But I write poetry to converse.

I’m socially awkward. I don’t say this from a place of low self esteem, and I’m not soliciting denials or compliments. My discomfort in social situations is simply one aspect of the many that compose me, and it is one that has improved a bit with time and effort but which I fear will never be eradicated. I become nervous in face-to-face encounters, my mind shuts down, and I ramble incessantly, circling around my point and making the kinds of revisions aloud that I generally make on paper. And I don’t become nervous because I see myself as unworthy of attention or friendship or conversation, I become nervous because I have become accustomed to life on the periphery. I do not lack faith in my talents or my character, but in my ability to connect with others in person in a way that they will find meaningful. I say to you now, most sincerely, that I will continue to try to love and listen more.

When I write poetry, I visualize others as most of them most surely are – compassionate, rational, and open minded. And I know that I am at the very least correct about those readers who stick with me for more than a poem or two. At least one out of three of my poems is likely to be offensive to someone, so only the very compassionate will continue to give me a chance to speak.

In an odd way that is of course no substitute for actual, engaged listening, writing has allowed me to hear those in the world who are compassionate, rational, and open minded, as well as those who are hurting, hoping, and frightened. In order to imagine my words as meaningful to others, I must think about those others. Empathy may be instinctive, but it also must be practiced, and poetry has been my practice.

It isn’t necessary, however, to write poetry as a means of looking both inward and outward. It isn’t necessary to know someone will read your words in order to imagine that someone hears them. I am a big advocate of talking to one’s self. Very often, when going through a stressful situation, I imagine talking to the other players involved. Sometimes I come away from these conversations knowing that my real-life words or deeds have been justified, but sometimes the words I imagine coming from others tell me things I have been unwilling to admit to myself. My make-believe conversations often lead to real-life actions.

I don’t always talk to the people around me, either. I happen to be a Christian, so I often talk to God. The movie Shadowlands credits C.S. Lewis with a fantastic quote: “ . . . I pray because I can’t help myself. I pray because I am helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.”

I believe the same dynamic is at work when one speaks to an imaginary sounding board. I’ve talked to a bespectacled, cigar-chewing therapist; I’ve also spoken to Oprah. She asks me terrific questions.

Now, I’d like to make it perfectly clear that I’m not equating anyone’s concept of God or gods with a good counselor or with Oprah. If I believed God to be imaginary, I would not call myself a Christian. There are simply so many ways in which I have experienced God that recognizing the psychological aspect of prayer does not diminish my belief in a deity or in prayer itself as something more than a psychological tool.

But I don’t believe anyone has been created without the gifts of imagination and introspection, and it is only right that we put them to use when we need them. Just as I am not dismissing the idea of God, I am not suggesting for a minute that theism is necessary for connecting with one’s self or with others.

I know that many, many people advocate silencing one’s thoughts and that meditation is a wonderful tool for them. Frankly, I stink at it. And I have truly made the effort to develop the ability. Like a student who really does need the radio on in the background while finishing an assignment, however, I find complete silence to be counterproductive. There is a valid reason for this, and it’s quite alright to ask me privately what it is if you really want to know. So this is the method that works for me, but I recognize that it will probably not be useful to everyone.

I would like to leave you with one last poem. It is a valentine of sorts, and though it was written long before I came to BuxMont, it was written for each one of you.


Friday, June 17, 2011

The Spoon Theory by Christine Miserandino

I read this a few years ago, and it is still the best explanation I've seen of what it's like to live with a chronic illness. It's definitely worth checking out if you're curious.

The Spoon Theory by Christine Miserandino

Monday, March 7, 2011


Reading and Related

I'm really enjoying two books I'm bouncing back and forth between right now, John Dominic Crossan's Jesus: A Revolutionary Biography and Paul Tillich's The Eternal Now. Tillich is one of those theologians you have to read if you're at all serious about theology, and yet I've never (why am I admitting this?) read any of his work before, not even when I was in divinity school.

What's that, you say? . . . Yes, I went to divinity school for a little while. . . . Seriously, stop laughing. I'd have finished if the money for school hadn't run out. . . . Do you need a drink of water? . . . Come on now, this just hurts.

The University of Melbourne's Trinity College and the Melbourne College of Divinity offer an excellent, accredited online program. I'm not sure, but I believe it's the only program of its kind; it was at the time I was taking classes. The Melbourne College of Divinity is one of the best divinity schools in the world. I was thrilled to be able to take the same courses, taught by the same professors, as students who attended on campus.

I'd still love to get my Master's of Divinity some day, but I don't know if that will happen. I'm keeping my eye on an unaccredited school that is going through the accreditation process right now. It's affiliations are far more conservative, but the price would be right (it would cost almost nothing) and, if the school were accredited, the degree would be valid. It also offers bachelor's degrees, which might be useful to others I know, and it's self paced, which means that, in theory, a student might be able to finish more quickly than at an on-campus institution. I'm doing some watchful waiting.


We went dancing last night! Specifically, we went to a set of video shoots for a friend's three bands. I haven't danced like that in ages, because I haven't been able to - it was heavenly. My husband and I had a blast, but the kids were a bit more ambivalent. They seemed to have two settings: having fun when on the dance floor and bored out of their minds when not. I'm not sure why there was no middle setting that made listening to music and watching the dancers a pleasant experience, but maybe that doesn't develop until college. [See Update after Health and Related.]

Health and Related

Everything is going extremely well. (See above.) My arm is not a hundred percent yet, but I was told we weren't even trying for a hundred percent immediately, so I'm not worried. There are lots of options on the table. One thing I want to do very soon is get a deep-tissue massage. I'm sure a decade's worth of shoulder kinks aren't going to untangle themselves overnight with medicine alone, and I'm guessing I'll see a tremendous difference once they're worked out.

My article about my journey to diagnosis was featured on the US Rare Disease Day website in its patient stories section, but the editing left it with some serious errors of syntax. Thankfully, only my first name was attached. And the story is circulating in one more way, which is what really matters.

Update: Sadly, the medicine I was taking lost a lot of its effectiveness after a couple of months. Since it did not stop working entirely, the dosage was raised, but it's still not having the effect that it was overall. I think perhaps the side effects from having the dosage so high are contributing. It is also still not having much of an effect on my arms.

Sunday, January 9, 2011

Of Rings and Dreams

When my now-husband and I first began discussing marriage, he and I lived several states apart, and my parents lived one state away from me. Aaron and I didn't really get the chance to shop together except to sometimes pick up dinner ingredients.

When we discussed engagement rings, I made it clear that I didn't want an expensive ring and I didn't want a diamond.* One day as I was shopping in a large discount chain store, I stopped by the jewelry counter to take a look at the rings.# One particular ring on this day caught my eye. It was of yellow gold and had one tiny, oval ruby in the center; four square rubies, much smaller than the center stone, were channel set into the band. It was beautiful. I don't remember how much it cost, but I do remember that it was inexpensive.

The weekend Aaron met my parents, he and I stayed at their house. To thank them for their hospitality, he and I decided to cook dinner one night. We went grocery shopping at another store in the same retail chain that carried the ring I liked so much. We looked at the jewelry counter to see if the ring was available; it was, and it fit.

We looked at a few rings online together at a later date, and it was one of those, a beautiful, classic blue sapphire, that Aaron bought as my engagement ring. He had thought the ruby too small - as he put it, "chintzy."

I loved, and do love, my engagement ring. But I still thought the first ring was breathtaking. I continued to look in the jewelry counter at the discount store in my hometown to see if the inexpensive ring I liked so much was ever so cheap that I could justify purchasing it for myself. I watched the price go down and down again, and I finally saw that ring go into the clearance side of the jewelry counter and then, finally, disappear. (Just to clarify, something generally has be a mind-bogglingly good deal for me to justify purchasing it for myself. This kind of shopping is something of an amusement to me and, certainly, a habit that would now be very hard to break.)

After Aaron and I moved and married, I would continue to look for the beautiful little ruby ring in the discount chain store here. I never saw it.

After we'd been here about a year, my husband and I visited friends and family in the South. I had agreed to make the cake for a friend's wedding, the date of which happily coincided with the reunion of my siblings and their spouses at my parents' house.

The wedding was beautiful, and my friend was much more flattering of the cake than I felt it deserved. She gave me a thank-you note at the reception, and I discovered upon opening it later that she had slipped a hundred-dollar bill into it.

A day or so after the wedding, Aaron and I again went shopping together at the discount store in my parents' small town. Once again, we saw the ruby ring. The ring was deeply discounted because the design had been discontinued, and my husband suggested I purchase it. I'd already rationalized doing so.

For a very long time, I have believed that there is truth to the theory that we can manifest that which we desire into our lives. That does not mean that I always have faith that I can do so.

I struggle with the idea, even in the face of all the evidence to the contrary. Yes, life has sometimes been hard. But my life has been, and is, beautiful. And if I had a physical list of what I most wanted out of life, there would already be a check mark beside each bullet point.

I hope it doesn't make me selfish that I'm not finished dreaming yet. My biggest dream is that the fulfillment of my most important dreams continues in its entirety - that my family and each person in it grows in wholeness and health for years and years to come. To tell the truth, I'm not sure how much I have to do with that dream, regardless of my attitude, considering the free will of others. But I do think that, at the very least, my dreaming will help me contribute to the lives of those I love in the best way I can. And I also think that free will is far from the only influencing factor in most life situations, so it's still up to me to do all that I can possibly do.

The far lesser dreams would sound a bit silly if I were to speak of them, so far from them as I appear to be. But the dreams in our heads are just our best interpretations of the dreams of our souls. Picturing exactly what we want is a bit like visualizing God; the best we can do in the latter case is come up with an idea that represents, to us, the qualities we believe God to have. We don't know exactly what our dreams look like until we get them, and we never really know how close to them we are. But I will let myself have these dreams, and I will conjure up the pictures that work best for me. And I will pull my little ruby ring out of my jewelry box and wear it when I want help with either.

* I realize there may be those who think it takes the romance out of a proposal if a bride-to-be-to-be makes her ring wishes known, but I can say that both Aaron and I remember his proposal as romantic, I loved my ring and still do, and we're both happy he didn't overspend.

# Shopping at a discount chain store for an engagement ring is also thought to be inappropriate by some, but again, it doesn't bother me. There's the whole political/economic issue of shopping at such stores (which is, to me, the only truly important concern), but the stores themselves are such a part of our economy that a simple boycott is not the solution. (And do not believe that the higher-end rivals of the chains most commonly disdained have better business practices. They do not. I worked at one such higher-end discount store for a short while; my hours were limited to prevent me from qualifying for benefits, and as part of my training, I was forced to sit and watch an alarmist video about the evils of unionization.) I've always found the quality of the jewelry sold at discount chains to be comparable to that of jewelry sold at chain jewelry stores of the type found in malls and shopping centers, so that doesn't worry me, either.