How many fathers do you know who are neglected? Forgotten? Ignored?
Today, like every year on Father’s Day, the internet, blogosphere, newspapers, and of course, the greeting card racks are full of declarations of love and appreciation for fathers. We also see stories about people who lost their real fathers at an early age and were raised by a brother, an uncle, or a godfather, even with the help of a friend of the family. Stories about dads who were absent for some other reason. Stories about mothers who struggled to fill the role of both parents when the biological father failed miserably at his parental responsibilities, or who simply opted out of the role. There is one person we see little mention of, let alone appreciation for, on Father’s Day, though: the stepfather. And it seems that often when we do hear about step-parents, the biological and step-parent are not present in the same story. A mother remarries after the father of her children dies, or a man whose wife left him and the kids eventually remarries. If we do see both in the same story, it is most likely not without tension or serious conflict.
My mom got remarried when I was sixteen, to Bill, who was in many ways a stark contrast to my father. Dad was the literary type, Bill political. Dad was passion, Bill was reason. Dad was an English teacher, a freelance writer, Bill was an FBI agent. Dad was a democrat. Bill is republican. (‘Nuff said.) In my baby book, my mother wrote of me that at a very early age “She already knows how to turn on the tears and melt Daddy.” Yeah. I knew from the minute I heard “FBI” that wouldn’t work with Bill.
Despite their different interests, they were very similar in character. Honest, good men. Men of their word. Loyal. Devoted. They had some heated political debates, but other than that, their differences weren’t an issue. Both were there whenever my brothers or I had a problem – even when one of us actually was the problem. Bill has always done whatever he can to help any of us, has always had good advice to give (even though I didn’t always necessarily want it), and has been a second father to each of us in one way or another.
My parents dissolved their marriage without conflict, and always remained close. This did not change when my mom got remarried. My father and his significant other were more often than not over at my mom’s with the rest of us on holidays and at other family gatherings. Over the years many people have commented on how unusual that is. Not every man would be willing to have the spouse’s ex over for Christmas. Not every man would be alright with his wife remaining so close with her ex, getting together with him regularly, and so on. This is true. When my dad’s health deteriorated to the point that my siblings and I worked out different shifts so that one of us would always be with him and taking care of him, my mother was there taking care of him too – and Bill was there helping all of us in whatever we he could. He didn’t have to be that patient. He didn’t have to even try to understand their relationship. And he didn’t have to do whatever he could so that she could be there for Dad and for us. But he did.
He did everything he could for all of us. Because we are family. Because that’s what fathers do. Dad and I talked about this before he died. He told me more than once how grateful he was to Bill for all he did and does for all of us, and especially for that. I am also grateful to Bill, though I don’t always find it easy to say so.
Like most people, I’m thinking of my father today, the memories that bring a smile to my lips and warm me with love now accompanied by a bottomless longing, since he died three and a half years ago. And I am also thinking of Bill, my step-father, who also means so much to me, and to whom I am more grateful than he may know.
So I wish you a Happy Father’s Day, Bill, with love.
A brave and beautiful exploration of grief, by my friend, Telaina Eriksen.
At 3:30 a.m. on February 15, 2013, my friend and mentor Emily Rapp lost her only son Ronan to Tay Sachs Disease. From the time I heard the news to this moment as I sit and write this, as I go about my range of daily activities (the care of my children, grading, email, cooking, etc.), the weight of Emily’s loss will ricochet from New Mexico and hit me here in Michigan and then it will be gone again, back with Emily and her family. The vastness, the emptiness, the heartbreak. I imagine many of those who love Emily, Rick and their families are feeling this exact same thing.
I remember Emily writing once about how hard it was for her when people said, “I can’t imagine” about the terminal illness of her only child. Of course they could imagine. Especially other parents. They just didn’t want to. “Good”…
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“What does it mean to be human, at this time, in this country? I believe it means practicing a radical generosity and empathy, especially when it’s a struggle. You must look around in the soft darkness of your waking life, which is the partner of your dream life. You must understand that accompanying you always is your animal, primal, complicated, desire-driven, calm but desperate, brutal and brilliant self, blinking and breathing gently in the dark, waiting for you to let in the light.” –Emily Rapp, “Someone to Hold Me“
Early Friday morning my friend and mentor Emily Rapp lost her two-year-old son, Ronan Louis. At just ten months Ronan was diagnosed with Tay-Sachs, a genetic disorder that is always fatal. I wrote to Emily shortly after Ronan’s diagnosis. I searched endlessly for words, knowing that sometimes there simply are none. Finally I simply wrote that nothing I could say hadn’t already been said by so many others, and that there are no words anyway, nothing anyone could do say or do would take the pain away, but I’m sorry. So very, very sorry. What I really felt though, was a need to burst into tears and cry out I can’t imagine your pain I hurt so badly for you and am here for you and want desperately to do something, anything, to help, but I’m not sure how well I communicated that. I wanted to somehow take some of her pain away, to cry with her, anything. But this was her son, her baby dying in front of her eyes, her pain – and I wondered how I could even begin to understand what she was going through, particularly because I don’t have any children of my own.
Sometimes I feel other people’s pain so acutely it overwhelms me. I’m not one who can hide my emotion, and am not particularly interested in doing so anyway, but do recognize that many people are not comfortable letting any feelings, let alone grief, seep out anywhere other than privately. And I know from experience that often others don’t know how to respond or how to take someone who does reveal themselves that way. I tear up all the time, over books, movies, songs, sometimes not even knowing where the tears came from, or what they’re for. But usually my tears are for other people, many whom I’ve never met, and often for animals.
On occasion, my teary-eyed moments have been met with curious expressions by people who, it would seem perceive the extent of my emotion as “inappropriate” to whatever precipitated it. I’ve been told “You’re just, you know, hypersensitive,” or asked “Don’t you think you’re overreacting, just a little?” Sometimes these perceptions have led me to question myself, and stifle even brief surges of emotion, saving them for private moments, when I’m more comfortable letting go and simply feeling what I feel, whoever, or whatever, that emotion is for.
But this feels wrong, is wrong, and what I should really question myself about, if anything, is why I would keep compassion to myself. This is tantamount to hiding the fact that you care about someone, or something. As if we could be too compassionate, or treat others too kindly.
The more I’ve reflected on it, the more I find this absurd, this notion of over-empathizing.
As if we could measure empathy.
As if we should.
Not a day has passed that Ronan and his family haven’t been in my thoughts. After I wrote to her, Emily welcomed me to visit her in Santa Fe. I’d love to, and would have already, were it financially feasible. Many times I’ve imagined meeting Ronan, feeling his soft hand wrap around my fingers and smelling his hair and looking into those eyes, with his beautiful, long lashes. I wanted so badly to get out there and meet him and deeply regret not having been able to. But physically meeting someone, knowing them personally, is not a prerequisite to being deeply moved by them.
Reading about their journey has allowed me to look into their lives and learn about how Tay-Sachs affected Ronan’s body, to gain an understanding, as much as is possible for a person who has not lived what this family has lived, of what it means to watch a life you were meant to nurture slipping out of your reach, knowing it will be gone. It has allowed me to imagine how it would feel when others innocently asked about my child, and wondering how I would answer, to only attempt to fathom the vast and continually fluctuating range of emotions, and being forced to make impossible decisions, that should be required of no one. It has enabled me to empathize with a mother losing her child, though I have no children of my own, and to empathize with Ronan and his father and even other parents whom I’ve never met, who lose their children to this devastating disease. If you have read Emily’s words, you have gained an understanding of the grief and the anguish unique to parents whose children suffer and die from Tay-Sachs.
And if you’ve read her blog, you’ve also seen that not everyone is going to understand her grief, or agree with this particular way of managing it. Some have criticized, some have judged. This makes even less sense to me than criticizing another’s level of empathy: how you could criticize anyone wading through the current of grief is something I will never understand.
As if grief could be measured, weighed.
As if it should.
Grief is a wild card. There is no way to predict how it will hit you and no right or wrong way to deal with it. We will all know it at some point, and can only get through it however we may need to at that point in our lives. Some will find support with family, friends, or groups, some turn to religion, others will drown it out in a bottle, and writers will write through it.
As she watched her son progressively losing function, knowing he was dying, knowing there was no way to save him, Emily emptied her grief onto the page, sharing her son and their experience with the world in her blog, Little Seal. The strength she needed to nurse her son to his premature death, is beyond my comprehension. The courage it had to take to let the world in and experience this with her.
I believe that we read – and we write – to know that we’re not alone, as much as to let others know that they are not alone. We read and we write to understand each other, to understand ourselves. Empathy is essential.
“Empathy is the only human superpower – it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke social change.” – Elizabeth Thomas
I’ve read and cried through every beautifully-written post, grieving for her family, for all the families who have watched their children suffer and die, unable to prevent any of it. Undoubtedly many of you, like myself, were unfamiliar with the disease which, due to its being rare, does not get the attention that more prevalent illnesses do. But from Emily’s willingness to share Ronan’s story in her blog, and in her book, The Still Point of the Turning World, which comes out in just a few weeks, will come understanding. Empathy. Awareness. And with those things, comes hope.
Today, as I write this, my heart aches with a profound sadness. Some sadness for those who would limit their empathy or try to control grief, holding tightly to the notion these should be experienced the same way, to the same degree, by everyone. But mostly I am sad for Emily, and for Ronan. My tears are flowing freely, my love and empathy expanding boundlessly around me, and I hope they reach my friend, and her family.
Sometimes we are touched closely, by people far away. Sometimes we know them intimately, other times we are acquainted to a degree, but sometimes we don’t know them at all. Sometimes we find them along the way, similar circumstances drawing us together, the struggles we share pointing us toward each other so that we are not alone, or do not get lost trying to find our way on a journey that offers none of us a road map. Other times our experiences differ widely, and we may know little or nothing of what another is living, how it must be for them.
And yet we feel them. We feel for them.
As we should.
As we must.
Though it’s been years since I’ve made any resolution seriously I’m making one now largely because it’s been gnawing away at me for awhile, and announcing it like this might strengthen my resolve. A couple years ago one of my mentors in the MFA program pointed out that I’d been hiding behind my writing to avoid writing. We were discussing the most recent packet of work I’d sent her and she something like “You know what I think? I think you’re writing this stuff to avoid what you really need to write.” Scenes from old movies came to mind, where characters would be in some desperate situation, trapped in a burning building or hiding from a psycho. There was always one who’d be running in frantic circles, shrieking, on the edge of hysteria (almost always a woman, who’d fall and break a heel in the process) when someone finally smacks her so she’ll calm down and think clearly. With that statement I knew Emily wasn’t going to let me get away with anything, and that though I sometimes like to think I’m elusive and mysterious, she somehow really knew me and exactly what I needed; if I stayed open to her feedback and didn’t take things as personally as I usually did, she was going to really help me.
She was right. I hadn’t realized what I was doing then, and sometimes still don’t see it. Then I’d work hard at perfecting a scene, focus on description or delve into other characters and their motivations. The problem wasn’t so much what I was writing, it was what I left out. I wasn’t sure where the real story was, but she helped me figure that out by showing me how I was avoiding the real work: probing my own psyche, questioning my own feelings and motivations. Good writing requires plunging into the deep, and digging deep enough to uncover the real story requires fearless examination of what you find there. I wasn’t getting to the soul of the story because in focusing on crafting the words into vivid description I’d effectively kept myself from looking for it. I’ve since made some progress, and the characters have changed and setting have changed, but this part of my story has remained the same to a degree.
At the orientation for my cohort the program director said to us before closing, “This program is going to change your lives.” I might have said it, but definitely remember thinking Thank God – can we get started with that? Sitting in a room full of writers all beginning our journeys I had the feeling I’d finally met My People. I wanted desperately to connect with others, and was sure it would happen there, if anywhere.
Though I can strike up conversations with complete strangers and get along with most people I meet, it stops there. I mix with people in probably any social group, at any socio-economic level, and am comfortable among rich or poor, white and blue collar, liberal and conservative, one religion to the next, meeting tons of people everywhere, getting along with most. I could probably have a party and invite all of these people, float freely between their clusters making sure everyone is comfortable, enjoying themselves, and make it work. But this is both a benefit and a downfall. I get the variety pack, the sampler platter, but never really, truly get to know them. I do well breaking into conversation with others whenever we meet, but have never been good at progressing to a deeper level. Bus loads of people and I are stuck in a sort of relationship purgatory: we’re more than acquaintances, may even know some deep shit about each other, but don’t call, write, or get together. We don’t investigate that deep shit, just leave it sitting there between us, like cold pizza we’re too full to eat. I’m perpetually late for departure and watching busses full of friends drive off as I stand there stuck at the port for Friendship, ready to go but unsure how to get there. It bothers me to know there are people I could surely really connect with, but when I get to the point when we either keep talking and connect or back off and maintain friendly distance, I choke.
I listened to the readings and read the work of the others at residency and focused on how alike we were. I loosened up and confessed to one that I felt like a mere wannabe writer who doesn’t belong. “They’re going to figure out I’m a fraud, politely thank me for my interest, then dismiss me.” He nodded as I said this. “Any half-way decent writer has a fair amount of self-loathing,” he said lightly, adding that he was still wracked with doubt sometimes. Before moving on to say hi to someone else he put a hand on my shoulder, smiled and said, “This is the right place. You do belong here, and you’ll fit right in.” I wanted to believe him, and worked at it until I did. Steve had been right – things were already starting to change.
I still have to work at it though. This past year I’ve read some blog posts and essays about women and friendship…and sat silently, coveting the honesty and intimacy those women share, the type of strength and bond unique to girlfriends. The few girlfriends I have live across the country, and we remain close, but not being near enough to get together leaves a void I feel frequently, and sometimes I’d give anything to spend a few hours at a café with them. Those friendship would have even stronger bonds were it not for my tendency to withdraw when I’m not feeling or doing well and don’t want to complain, despite sometimes needing to. Some people back off swiftly when conversation is anything less than cheery distraction. My girlfriends are supportive and understanding, but I often hold back, worried. Unsure.
That doubt and insecurity have also kept me from reaching out to other women, even as I’ve read about their friendships and thought about people I’d like to know better, “Facebook friends” that could be developed into meaningful friendships. But for the insecurity. I start to write an email, but an image comes to mind bringing my intentions to a halt: a piece of notebook paper folded several times into a tiny square or some cute little shape, the message inside simple: Will you be my friend? Circle one please, “yes” or “no.” Jesus. I’m like an awkward little kid. I don’t want to look like that desperate little kid. I tell myself I’ll write it or finish it later.
I’ve also started many emails or letters (even comments for blog posts, for God’s sake!) to writers whose work has deeply resonated with me. I’ve actually got half-written letters to a few people that sit unfinished while I worry about sounding stupid, unimpressive, or just bothersome. I begin writing a post in a flurry of ideas or emotion but then I hesitate, unsure. I need to take a break and come back to edit it. I want to wait and reread it after an appointment. More than once while I hesitated someone else with the same or a similar idea has published something like what I was writing, or said it the way I wanted to, leaving me throwing my hands up with big drama. Well, hell! I can’t do it now. Someone else just did, and now I’d look like a loser trying to imitate their idea. Hesitation. Indecision. Vacillation. All the opposite of “resolve.”
In the mean time, life has gone on, others have written (and actually sent) letters, others have read them, friendships have been nurtured, all while I’ve sat on my ass, biting my cuticles and cowing down to big, bad Insecurity.
Well, screw that. I can just get over it or I can sit here wallowing in it, but I’m damn tired of letting it stop me. It is 2013. And this year I’m going to be busy. I’ve got letters to write (and send), and blog posts to get up and old friends to whom I owe more than I’ve been giving, and new friendships to nurture. Thus my resolution: resolve and reach. To stop vacillating between determination and insecurity, and to reach out and reach for.
10 p.m. I pull my leg up, bending my knee and planting my foot on the edge of the chair to scratch my ankle while reading the article on the laptop. This makes me think of my father. One of several odd little things that do. My yoga pants are boot-cut and allow easy access to my socks, which also reminds me of him. It’s these little, seemingly insignificant actions, the details that were his and his alone, that comfort me every day.
Three years ago today my father died after a long, admirable, come-here-go-away relationship with hospice. For years he’d had medical problems, an impressive number of heart attacks, a quadruple bypass, chemotherapy, transfusions and more. The only surprise with my dad was that no disease was ever able to put a dent in his positive outlook, his love of life and people, and his incurable charm.
The itching is vague and intermittent, lacks any visible cause – no rash, no bug bite – just like it was for him, but so far, thankfully, not severe, as it had gotten for him. I pull the sock down over my heel, and examine the evidence of Gold Toe around my ankle. His voice whispers in my mind then, asking me, Honey, if you don’t mind, could you just take those little scissors and cut the edge of my socks? His ankles had swollen to the point that his socks were unbearably tight. Though I do remember being mildly shocked by how tight they were, I’m trying to remember detail now. How deep were the indentations on his skin? Exactly how puffy were his ankles? Mine are nothing like his were, but there are now marks where there were none two months ago. I’ve approached this in my usual Junior Detective style, considering how long have I had the socks? (Ages.) What is the general condition of the socks? (Old, somewhat stretched.) Is it even possible for socks this worn to leave such a detailed pattern on the skin? (Uh, that would be no.) What do I know of fluid retention that began in the ankles and is now also in the face? (Kidneys, the liver – the usual suspects. Or maybe something else) I flip through a mental rolodex of my symptoms versus his diagnoses. This makes me feel close to him somehow, though I wonder sometimes if that even makes sense.
And what if it doesn’t? How could that feel so strangely comforting? I’ve tried to sort this out on occasion, but lately find myself wondering why. How important is it to make sense? What sense is there in death or grief or illness anyway? This week I was cleaning out my office, where many of my father’s books, journals, and other belongings have sat, mostly untouched, since he died. When we moved everything out of his apartment, I couldn’t bear the thought of throwing away his belongings, or giving them to anyone else. It felt like erasing him. Like letting go. And I wasn’t ready to. I took boxes of his things to my apartment and, unable to do much else at the time, piled them in the office and left them alone. I took the laptop out to the dining room. Being in the office was unbearable. Just walking in, looking at those boxes, unleashed an unstoppable surge of tears. Now, three years later, I have started going through some of these items, treasures from his past, many of which mean something to me only in that they meant so much to him.
Our culture is one that thrives on excess, on business, on filling up every second of every day, every inch of your computer or tv screen. We are bombarded with junk mail, spam, a 24/7 cell phone, texting at all hours, non-stop news and more. The more stuff filling up the time and space, the less I want around me. I’m downsizing. Simplifying. Going through closets and boxes and throwing away articles of clothing I haven’t worn in ten years but have kept just in case. Despite a few moments of hesitation (but I might need it for, I dunno, something) this feels more liberating than I imagined. Until I enter the office. I expect to spend hours agonizing over whether to get rid of things in the name of simplifying, or holding onto things I’ll never use but want near anyway. Instead I sift through his things late into the night, feeling warm, smiling, like I’m spending this time with him.
Since he’s been gone, I feel a gentle tug sometimes, an uncanny sort of calm that never seemed possible to my high-strung self. On occasion I feel a peaceful acceptance at moments that would normally have me fraught with worry or indecisiveness. I spent many late night hours going through cards and letters friends had sent him, or some of his mother’s things, worrying over the fact that I couldn’t let them go, even though many people said I should. It’s time they’d say. Or Why do you want to hold onto that? More often than not I don’t even know why. Because it was his, that’s why. Because it was part of my father. That’s all that matters.
This week I took a few things out of one of his boxes and put it with a bag of items I’ll give to Salvation Army or Goodwill. Most of his things I put back on the shelves or back in boxes to keep. I’m not concerned with whether I should let go of this or what it means to keep that book but get rid of a CD. I’ve no idea how long I will keep these things, or if I will ever give them up. Today this is what I need, what works. So I will sit here, with some of his things nearby, examining my ankles and remembering his, and listening to all of his favorite songs. I will play what we came to consider our song, one that we danced to in the living room one summer afternoon in 1989, and I will sing along with Cyndi Lauper until the tears crack my voice, but it will feel good. It always feels good to listen to our song, dance in my living room, imagine him there, and know that he is here.
Recently I was stalking people who’ve graciously accepted my Friend Requests on Facebook, iTunes playing in the background, when I realized my pulse had gained speed. The capital letters that dominated so many comments on a political post stood out on the screen. Ugh. I stopped reading and took a break to enjoy Jim Croce for a minute. “You don’t tug on Superman’s cape, you don’t spit into the wind, you don’t pull the mask off that old Lone Ranger and you don’t mess around with Jim.” That’s right, I thought. You don’t screw around with the dude using caps lock either.
I discovered Grammarly on Facebook, when I noticed that many of the pictures a lot of my friends were sharing were from Grammarly’s page, and was a fan straight away. Aside from their real services, they provide regular comic relief for language-obsessed individuals such as myself, often in the form of hilarious pictures, e-cards and faux-inspirational posters such as this one. These allow me to laugh a little about grammatical horrors that otherwise make my skin crawl. I take pride in my writing, and while I confess to having used caps lock on rare occasions, I know that I can get any point across with the right words, and shouldn’t resort to shoving it in my reader’s face.
As a word nerd, I am deeply disturbed when the media takes liberties with language, compounding words and names to invent new ones designed specifically for the hipster crowd. If the newscasters sound hip and cool, they will gain a loyal audience with the younger generation (or those who are no longer considered younger, yet are somehow cool anyway). The media coins terms and names like TomKat, Brangelina, and – oh, snap, I just forgot my other examples – and inserts them in every possible newscast. Because, c’mon, it’s keewl.
These words and phrases go beyond simple annoyances to us grammar geeks, who heart language so. For me it elicits a visceral reaction, one not unlike the gag reflex brought on by the site or smell of another’s vomit. Yet I must admit it: I have used caps lock, and I have now mashed words together, to offer a new verb, one which doesn’t require further definition, but that I will define anyway. ‘Cause that’s just how I roll.
Caplock. (v.) To write, post, text, tweet or what-ever using all capital letters. To lock the capitals (letters) on a keyboard, phone, ipad – what-ever! To caplock. The act of caplocking. She caplocked.
Andy was thrown over the edge by Jim’s latest rant. He’d gone too far this time, and Andy had to walk away from Jim, after, like, more than twenty years of being BFFs, due to their heated – and capitalized – political debates. But before un-friending Jim, Andy let loose and caplocked. He never heard from Jim again.
The dude was constantly caplocking. On HER page. HER TIMELINE, for God’s sake! Her friends talked to her about his nasty tone of voice, and she realized they were right. She caplocked, on his page this time, and broke up with him.
1. You doubt the ability of your audience (a.k.a. the recipient of your assault) to get the point without some form of visual aid. Can they fully comprehend your point just by reading your words? Do they realize how passionate you are about the subject? If they can’t see your reddening face, the veins pulsing on your temples that prove how mad you are – well, you just can’t be sure. That’s a risk you can’t bear to take. What if they don’t get it? O.M.G. What if?
2) You doubt your ability to effectively argue without some back-up demonstration to highlight your point. This stems from an underlying lack of confidence in your overall verbal skills. But language evolves, and the notion developed that a word written or typed in all caps was either spoken with more force, or had more meaning than its lowercase version. You can now rely on caps to strengthen your point in virtual “conversation.”* (Really?? “Conversation”??**).
Phew! Thank God we don’t have to take time to consider which words would do the job best!
3) In days of yore we had calm, even-toned (read: mature) conversation in which the use of wit and a wide range of vocabulary were valued and effective tools of debate and discussion. Now, what you lack in imagination and vocabulary, you can compensate for with volume. Ruefully, the tête-à-tête has morphed into a perpetual showing of individual will: all participants talk over each other, struggling to be heard over others. The winner is the loudest, he who continues yapping until others give up trying to talk. (Persistence pays!) This drowning-everyone-out phenomenon has permeated the virtual world in the only possible way: the equation of caps lock = yelling was born. If you can not rest until your post, with its enlightened message, will be the first seen, the most read, and of course, generally considered the strongest argument, you can count on caps lock. When you caplock then hit that enter, you are the baddest man in the whole damn town. Badder than old King Kong. Meaner than a junk yard dog.
*The recent “love” of the quotation mark, and other punctuation infatuations, will earn their own post. Stay tuned.
**Hyper-punctuation. Excessive intonation. These are but two signs of a systemic problem, symptoms of DGAPS, or Deteriorating Grammar and Punctuation Skills Syndrome. Like a flesh-eating bacteria, DGAPS has seeped into our language, and unless we stop this sickness, the disease will quickly progress like, well, uh, you know.
Congratulations to my friend Heather Mingus, whose post “To Love and Be Dog,” (*with pics of her adorable dog Hank) was “Freshly Pressed” today!
Her posts are humorous, insightful, and cover a broad range of topics, so be sure to browse her other posts. Nice job, Heather!
“Nothing. Everything was normal.”
“Thank God. That’s good news.”
I look out the window, or at the floor, or trace the lines of my palms, maybe concentrate on my nails or cuticles.
“Um, it is good news, isn’t it?” I imagine them wondering silently: She’s okay, but is she, you know, okay?
“Yeah.” Of course it’s good news and brings some measure of relief, but it’s not all-inclusive, and therefore offers only a brief respite. There’s a downside attached. For the patient whose doctor wants to be certain that the heartburn is just that and not indicative of heart disease, a negative result equals winning deliverance. The one who’s been accumulating symptoms but has yet to find a diagnosis, that same result rules out another disorder, allowing her to proceed on her scavenger hunt – a mere consolation prize.
More than three years have passed since I first spoke with an ENT about a hearing problem, namely that in my right ear I hear what must be blood pumping through my veins, given that sound is always in perfect time with my heartbeat. Pulsatile tinnitus, he tells me. It is unnerving, but nothing to worry about, he said, and no way to treat it, so I try to ignore it. Later that year I returned because of a scratchy throat and raspy voice. These were the first in a series of symptoms, many of which began roughly around the same time, the rest joining in succession, each symptom with me still.
Some doctors I’ve seen: a hematologist, an endocrinologist, an otolaryngologist, a physiatrist, a few physical therapists, a gynecologist, a neurologist, a gastroenterologist, a dentist, and I’ve yet to schedule the optometrist. (He’s next.) The usual checkpoints: labs, heart, lungs, more labs, allergies, more labs, MRIs, X-rays, CT scans, and now regular phlebotomies.
With each new symptom, every different specialist, each new round of tests, I’ve thought This is it. Now we’ll know what’s causing all this and how to treat it. There have been negative results. Positive results. Another referral. Another pile of new patient paperwork. Another round of tests. And another diagnosis – or lack thereof. Each one is another clue, another step behind me in this endless scavenger hunt. I imagine renting commercial space somewhere central to all my doctors where just after they assemble, Dr. House raises his voice strolling up to the whiteboard – “Differential diagnosis, people!” – and they begin to brainstorm.
A couple close friends have asked if I’m worried about what the results might show. But what it could be hasn’t been the issue (well, there have been fleeting moments…). What plagues me is the idea of the search going on endlessly while disorders are ruled out one after another but the symptoms remain, maybe new ones appear, while time, and life, pass by. The realization that there may be no end to this relentless fatigue, the feeling that someone is standing on my chest, the sense of fullness and heaviness descending from my right ear, down the neck, extending into the collarbone, and now down the arm, or any of my other symptoms. (My right side just feels so wrong.) My health, my body has assumed the role of dominatrix. Throughout the day she tells me what I can and can’t do. If I am stubborn and fight she whips me into submission, and punishes me for disobeying.
You see how problematic this relationship is. I only submit to journals, websites, and the like.
My body, my boss. She knows my mind runs far ahead of me, passion racing alongside. I have projects, plans. Things I’m aching to accomplish – freelance work, my own writing projects, plans for fundraising and awareness campaigns, return to volunteer work. I’ve got shit to do – and she’s standing in my way. Insistent on dictating my agenda. Refusing to relinquish control. I start something, she throws some stabbing pain my way. Plans to go out? She weighs me down with fatigue. Writing? A little dose of nausea, just enough to force me to lie down. She controls everything. Plans. Finances. Relationships. Illness takes control away from you, and unless you can name it (read: know how to treat it), you have no idea when you’ll get control back.
Some people think it’s crazy that I’d rather get bad news than to leave with no more answers than I came with. But if we don’t know what’s causing the problem we can’t stop it. I want to understand so I can do something. Take action. Take back some control. I just. Need. To know. Sure, there are medications deemed “appropriate” for some of these manifestations, and maybe some will alleviate the pain, help clear the fibro fog, or make things easier to do. But some symptoms ignore every attempt to stifle them, others only scream louder. And I don’t want to just try one pill after another, always adding more to the daily regimen, never figuring out what brought this all on. Even if these issues can’t be resolved, just knowing what to blame would help.
For the patient the diagnostic quest is an indefinite sentence to Uncertainty. A negative result may mean you can rule out heart disease or lupus or pulmonary trouble off the list of worries, but that doesn’t mean the symptoms disappear. People who know the patient often hold the erroneous assumption that after getting the test results one either gets a definitive diagnosis or normal life resumes. I don’t understand what’s wrong. I mean, they said it’s not cancer, right? As though not being able to name it or see unquestionable evidence of suffering means it can’t be real. She looks okay. Must be okay.
In an interview on 60 Minutes Dr. William Gahl, of the Undiagnosed Diseases Program, explained that the patient without proof – visible signs or a definitive diagnosis is often viewed as a hypochondriac, obsessive, or simply a complainer turning something insignificant into a major issue. (You can watch the 12-minute segment here.)
If my doctors discovered everything stemmed from some easily treatable problem, I’d burst with gratitude and do whatever they said. If they found some rare disease or tumor it would be scary, sure. I’d get a second opinion, weigh the options, then be able to make decisions. At least I’d have some idea of what might happen and how to deal with it. I could fight. I could plan. Or I could adjust. I could regain some control.
So I wait. Research. Hope. And try to press onward while trying not to push too hard. But I feel worse, push harder, make it worse, feel more desperate, do more research. Get behind, feel worse, push harder… Anything to get out of this cycle. Any direction. Any diagnosis.
Anaїs Nin once wrote, “My ideas usually come not at my desk writing, but in the midst of living.” Ideas don’t wait to come until you’re sitting, ready to write, so I jot down a lot of notes to return to when there is time. If something in the news hits me I spit out my immediate reaction on the page then stop, and return to it later, after I’ve calmed down and can approach it a little more level-headed. When I was an editorial intern I remember reading a few essays that were insightful and necessary and relevant…and too angry to be effective. They reminded me that no matter how passionate I am about a subject, if I don’t step back, let it breathe, check my emotions and revise, my words will read as nothing more than an irritating rant.
This is what’s hard for me about blogging. The very nature of it demands letting go of infinite revision. Some bloggers don’t revise their posts at all and just sit down, write it, and up it goes. Others write short essays, revise them a little, and up they go. We each need to find our own balance, I suppose, which might depend on the purpose of each individual blog. I don’t want to spit out a rant as quickly as possible for the simple sake of posting, only to have a blog comprised of spontaneous emotional outbursts that weren’t given enough time or thought. But I also need to post frequently, regularly, and silence my inner perfectionist to do so. I’ve let too much time pass without posting while waiting for the muse to come and say “This is how it should be done.”
Recently I was watching Robert DeNiro, (because I watch him every chance possible) in an interview on Inside The Actor’s Studio. He talked about how he “was afraid to make a move,” when preparing for a scene and felt like he had to go through some whole complicated creative process to get into the character and scene, and would hesitate, thinking “I have to feel it, I’m gonna have to do this…” A teacher told him simply, “At the end of the day you’ve got to get up and do it. And the sooner you get to knowing that you’ve got to get up and do it, the quicker you’ll do it.” Once he just jumped in he realized he hadn’t needed to pamper himself or go through this or that first: “You’d just arrive there, you’d be there, believe it or not.”
Okay. Simple enough. Just sit down and write. I’ve got a great idea and all the emotion in the world to fuel the writing, and can get myself to sit down and just write it. But I can’t always stop there, and do sometimes have to go full speed ahead, take a breather, then come back. What I’m finding though, is that something lights a fire under me so I sit down and spit out my rant. Then I back off to let out some emotion and let in (hopefully) some rationality…and then while I’m letting it brew, I discover someone else has written something very similar, or taken an idea similar to one I had and was sitting on, but they actually did something with it. Which, of course, elicits another annoying voice that says “Well, now you’ve done it. You’ve waited and someone else wrote it and now you can’t, lest it look like you are taking someone else’s ideas due to the lack of your own.” Great. Allow me a moment, if you will, to respond to that voice: Shut the hell up.
A few nights ago I called my friend L to get her opinion on a post I was writing. News of Representative Akin’s comments on “legitimate rape” was spreading across websites like a trojan horse, and though I often remain silent on the idiotic things politicians say, this was an immediate and ferocious blast of isolated thunder for me; my fingers could hardly keep up with my thoughts. It seems a couple people misunderstand the word “empathy,” so I wanted to demonstrate how they might come to better understand it, but was worried that it might be a little graphic for a blog post, so I read it to her to see what she thought. Then today I get online and see an article responding to the same thing, with a couple paragraphs written the same way I wrote mine. And all is lost. Surely I can’t write it like that now, when someone has already done it the same way.
I fired off one of those “I can’t believe this!” texts to my friend, who has encouraged me to finish and post it anyway. And I will. For one thing, there is a similarity, but so what? We argue two different points, both valid. If we all stopped writing essays and books and songs and films because someone had already tackled that subject before or written it that same way before, we’d be missing out on a lot of good work. Anaїs Nin also wrote that “It is the function of art to renew our perception. What we are familiar with we cease to see. The writer shakes up the familiar scene, and, as if by magic, we see a new meaning in it.” So someone wrote something the way I wanted to and they beat me to it. So what. I’m learning my writing needs distance and time – just not too much.
I’m going to put my that little insecurity to bed, finish the piece, and post it soon.
I’m proud to report that a writer I admire has honored me with the Liebster Award. I’m copying and pasting the details about Liebster here, as she did, and I don’t feel bad about borrowing that much from her. After all, she started it.
What is the Liebster Award?
The Liebster Blog Award is given to up and coming bloggers who have less than 200 followers. The Meaning: Liebster is German and means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing and welcome.
1. If you are tagged/nominated, you have to post 11 facts about yourself.
2. Then you answer the 11 questions the tagger has given you & make 11 questions for the people you are going to tag.
3. Tag 11 more Bloggers.
4. Tell the people you tagged that you did.
5. No tagging back.
6. The person you tag must have less than 200 followers.
Away we go…
11 facts about Mademoiselle Gardner.
1. Listens mostly to original scores when I write, as well as “soundscapes” or “ambient” music. For me it is one variety of mood music, and Favorites are Marconi Union, Thomas Newton (American Beauty), Cliff Martinez (Traffic, Solaris)
2. People often take me the wrong way, think I’m mad when I’m really just tired or hurting, or they don’t get my sorry attempts at humor or whatever, and it bothers me. A lot.
3. I want to at some point start an awareness campaign about hereditary hemochromatosis.
4. I love doing research. I mean I really love it. Seriously. Like give me something to research and I’ll be on it, pronto
5. Playing detective turns me on, and this is a role I could go either way with: movies about grifters, con artists, guys planning complicated heists draw me in just as much as those about CIA or other highly intelligent people. (See movie list below.) Planning. Detail. Focus. Intelligence. Challenge. I freakin’ love it.
6. Cheese? Avocado? Yes, indeed, there is a God.
7. There are periods of time when I don’t call or email friends like I should, and it has absolutely nothing to do with them. I don’t want to complain or sound down when chronic pain, fatigue, or depression has got the better of me, but don’t want to lie about it. So I often try to wait it out and call when it’s a little better.
8. Those same culprits also leave me behind in work any number of things; generally I feel guilty and horrible about getting behind, but I am making progress with putting my health first.
9. When I was maybe nine or ten I played the flute briefly.
10. Music is essential. And I’d really like to learn to play the guitar someday.
11. I admire or appreciate several people but can’t seem to tell them that. Even friends I love. I’m often fraid the friendship means more to me than to them.
My answers to Amy’s questions:
- Do you have regrets, or is regret for suckers?
Sure – but just a few. Not about college, career, etc. though. Regret can be an impetus for growth. I regret not telling my best friend how much he meant to me before he died and not saying goodbye the last time I saw him. I don’t want to let that happen with P, whose friendship means just as much to me. Regret can also be a garbage bag to lug around when one wants to dive head first into a pity party. I regret the hurt I’ve caused others, and things I have or have not said. I do not, however, regret my horrendous mistakes, my dark years.
- What’s your favorite song right now, at this moment?
I’m mostly a classic rock kinda girl and listen to (God help me) what is now considered “older” music, but I often crave a particular song for awhile and play it over and over for a month. Right now that is “Like a Stone” by Audioslave. (Two words: Smokin’ hot. x4. You can watch the video here.)
- What sounds do you hear right now?
Crickets, and the incessant hum of my laptop fan.
- If you could go anywhere in the world, where would you go?
On a trip across continents. The first few on the bucket list: Greece, India, Australia, Fiji, Iceland, Bora Bora, back to Italy and, of course, back to the place I love – la France.
- What story have you been sitting on and too afraid to tell? Will you ever tell?
It’s about losing the ability to trust oneself. I will. I have to.
- Have you or would you date someone ten years younger or older than you?
Yes, I have. And if Robert DeNiro came to me today I’d do it in a hot second.
- What do you love about being you?
The same thing that makes me so vulnerable: my intensity. I love, live and work with passion. It is worth every bit of the vulnerability.
8. Is monogamy possible, or does everyone cheat?
It is absolutely possible. It is also absolutely possible that people who believe in it go against their own belief. (See question #1) I do think some people say that it isn’t possible so they can justify their own actions or alleviate their guilt. It is also possible that people who believe it is normal to cheat or that everyone does find themselves unable or unwilling to do so.
9. Paper or plastic?
Neither. BYOBag. But plastic does come in handy; I have a dog, you know.
10. What do you want to be when you grow up?
Grow up? Who said anything about growing up?
11. What five movies do you love?
My questions for nominees:
1. What motivates you?
2. What are you proud of?
3. What is your current WIP about?
4. Do you have anything in particular that you do, music that you listen to, incense burning, or any other thing that is part of your writing mode?
5. What writer has had the most influence on your own work?
6. What do you like most about yourself?
7. Is there anything you’d like to learn at some point, like a hobby?
8. How old were you when you started writing?
9. Are you happy with where you are in life right now?
10. If your house was on fire and you only had a second to grab a couple things, what would they be?
11. Is there a story you have been hesitant to tell, and will you ever tell it?
I only have two blogs to nominate right now, but will post others if I come up with them. However, these are awesome blogs, and you should check them out now.