...the most poignant of all lyric tensions stems from the awareness that we are living and dying at once. To embrace such knowledge and yet remain compassionate and whole- that is the consummation of the endeavor of art.
-Stanley Kunitz.
The content of this blog including all writing and photography, unless otherwise noted, is my creation and belongs to me. I'm thrilled that you're here, but I'm not so thrilled if you're here to filch. If you must steal, go big, go Nabokov, and leave me and my little blog cabin in the woods alone.
I hate Old Person stereotypes because all my grandparents were or are some of the most vibrant, energetic, inspiring and interesting people I know. But with apologies to them, I’m going to indulge in the stereotype a bit. You know that Old Person, the one who can’t hear well and turns up a hearing aid when you call, the one who chides you for not calling enough, then goes on to list the litany of aches and pains and daily complaints? Yes, well this blog is turning into an Old Person. Speak up, dearie, I can’t hear you.
The appointments: good, because I’m writing this post from home and not the hospital. Good because I won’t be having sinus surgery any time in the very near future.
Bad because my lung function went down about 15%. I’m not surprised because I’ve been feeling the absence of that 15%. With a lung function that likes to hang out in the fifties on a good day, 15% is a significant difference; but for now, no iv antibiotics. Just increased treatments.
Bad because an issue that seemed to be taking a nice long nap for the past three years has woken up, wailing, red-faced and hungry. This means more tests and doctor visits. This means more worries. This means more bad dreams, awake and asleep, about the monsters that fester and bubble in my murky, unhealthy depths.
After the appointments which I walked out of feeling exhausted, relieved, grateful, scared, sad, and frustrated, I told S: I just want one break.
One. Break. One month (actually, confession: I said one year….greedy) without needing to think about health or without needing to maintain my body so intensely only to operate at a sub-par level. One without worries, without constraints, without the constant body scan. How I would love a single day without medicine. Before I take a single bite of breakfast every morning, I’ve already utilized eight medical interventions.
I’m going to crawl into a cave for a bit. I’m going to retreat, indulge in some denial and silence, and be sick in private. I’m going to figure things out or work things out or punch things out on a punching bag or maybe paper. When I return, there will be no more health reports. I’m done with the litany. They taste like prune juice. Bingo, though, I’ll always love.
I’m tired, yes, and a bit worn out. But I’m also very blessed, and not a day goes by without thanking God (okay, with a bit of an eye roll)/universe/source/ creation/luck/fate/destiny/randomness/the great whirling dervish of life for the gifts I’ve been given. You are most certainly on my list of gifts, yes you, all wrapped up in your skin and the bow of your bright eyes and your wild horse thumping heart that keeps me from feeling too alone.
That’s the sound of men rushing out of the room. Almost ten years of marriage and I’ve finally learned the quickest and surest way to find alone time: What are you thinking about, darling husband? Tell me what you’re feeling.
So. Feelings. Other than the bone-crunching desire to slice off the penises of Penn State powers-that-be.
Nervousness. Hi-ho, hi-ho it’s back to clinic I go in a few days. I’m working through my nerves with deep breathingcalming images denial lavender tea a few good books.
If writing is one of the great pleasures and necessities of my life, reading is the place where it all began.
My family once road-tripped through the US. I spent the entire vacation curled up in the back of the wood-paneled station wagon with a pile of books. My mom and dad begged me to look out the window. I insisted I was looking out of a window.
My beloved fifth grade teacher would go to the public library and handpick books she thought we’d love. I’ll never forget the feelings of excitement and pleasure on the days she came into class holding her canvas tote bags filled to the brim with hardcover selections. I’m sure the bags were heavy and I’m sure she worried about library fines, but she gave us that joy every two weeks.
Poet and writer Edward Hirsch does a good job explaining the feelings I have for reading:
Reading has been a deeply liberating experience for me. Like many of us, I feel as if it has given me most of my interior life and delivered me to myself. It has also taken me to extraordinary places where I otherwise never would have traveled.
I’m also feeling fortunate. I’m lucky to have the virtual company of a circle of women who share these consuming passions with me. About two weeks ago, I received a letter and a gray bracelet in the mail from Teri. The bracelet is stamped with three letters: FTF. Finish the fucker. This bracelet is gas in my tank, sun on my seeds, a little love incubator for my literary hatchlings. The bracelet is rumored to have magical powers which I can solemnly attest to…since receiving this gift I’ve had two more pieces accepted for publication! Forgive the exclamation point and know that details (and links!) are forthcoming. Finish the fucker, indeed.
A few days after I received the charmed bracelet, I opened my mailbox to find a manila envelope from MSB. Inside of the envelope was a book of poetry by a poet whose work was completely unfamiliar to me. I leaf through his pages and find myself submerged in another world, feeling grateful for another “window” to look out of and grateful to know someone who sees a treasure chest between two paper covers and thinks of me. Even better, MSB’s gift came with a card made out of one of her black and white photographs. Two loaves of salt-dusted baguettes. I feel nourished.
As if all of this isn’t enough, I kid you not, today my magical mailbox contained another gift. (Yes, I’m feeling sort of embarrassed by this shower of love). This recent gift puts a bit of a tangle in my secret admirer theories. Last time I received a book in the mail, I had no idea who sent it but I thought I had a hunch. To this day the secret admirer remains a mystery. But this time (evil laughter), though the gift was sent practically anonymously, I know for sure who sent it. Days like today make me turn my gaze skyward, not in lament but in disbelief that I should be the recipient of so much love and blessing. My heart buzzes, not just for the joy of a new book which I can’t wait to dig into, but for the heart with which it was sent and the heart who sent it. Thank you.
And now I’ll let you go with a book recommendation: The Lacuna by Barbara Kingsolver. Not only is Teri a wizard who knows how to concoct bracelet spells, she also knows how to pick a damn good book. I love it. I’m not quite done with it because I’m sipping slowly. I don’t want it to end. I allow myself a few pages, a little nip, every day. When I hold it I feel like I’m holding hands with a long-lost friend. It’s woven out of history, Frida Kahlo, Diego Rivera, Trotsky, Mexico, food, cooking, class warfare, art lovers, book lovers, screaming monkeys, guns, intellect, heart, a love letter that made me cry, friendship, longhand communication, an aspiring writer, broken hearts, and love sweet love. I’m a spinning top, giddy in love with this new book.
I sat down to write a blog post a few days ago updating my sinus situation and as I wrote, all I could think was I’m sitting down to write an update on my sinus situation? It made me poof-haired crazy. Has it come to this? Writing about the clogged tunnelage in my little melon of a head? I decided several things.
1. I’m a deficient CF blogger. I write about CF, the daily huff and puff and the corollary emotions. But I prefer to keep a comfortable distance from the uglier aspects for everyone’s sake. There are several CF bloggers who have more guts and less vanity than I do and who are able to write about the ravages of the disease in a sensitive yet honest way. I praise them and I thank them, because many of those blogs lifted me out of the cystic fibrosis quicksands with information and the comfort of knowing I’m not alone. But I realize I am unable to write a “CF blog”. I get shrill. I get teary. I get grossed out. I hate myself a little bit extra. And anyway, it becomes difficult to write a CF Blog when I refuse under penalty of self-inflicted death to never ever use the word p.h.l.e.g.m. in a sentence, so help me God.
2. My sinuses do not require an entire post. Surgeon Number 1 swaggered into every appointment wearing scrubs and the musky scent of egotistical pride for having developed a less invasive method for sinus surgery (balloon sinuplasty). He began every appointment with genuine amazement to see me standing there (still alive!) and ignored me when my insurance refused to cover the surgery. For once in my life, I actually felt thankful for coverage denial, because it forced me to get a second opinion.
I went to meet Surgeon Number 2 armed with a sinus battle plan courtesy of Noan. Surgeon Number 2′s exam was thorough (did I mention the first surgeon didn’t bother to look in my nose a single time?); he took over an hour and a half, but spent most of the time listening and creating a mutually agreeable plan of action. He agreed I was in need of surgery, but felt the conventional method of sinus surgery was the only method which would actually benefit my small and inflamed sinus passages (balloon sinuplasty would have lasted a few months at best). The good doctor gave me several weeks of treatment with oral antibiotics, steroids, and nasal spray. All of this occurred a few months ago and the treatments helped a lot. Unfortunately, it seems the improvement was temporary because soon after the therapies ended, I returned to a stuffy nose and burning cinder headaches. I have an appointment next week to reassess.
The story has not ended yet, but I’d say the moral is to trust yourself if you have a bad feeling about a doctor. Find a better one. There’s no reason to seek treatment from a doctor you don’t trust, or worse, dislike. Medical treatment consists of medicine and treatment– human interaction and relationship. The most important lesson I learned though is that if I must have an eight inch metal scope pushed down my nostrils, it helps so much when the young medical fellow who is learning how to properly scope has coffee colored skin, green eyes, and a delightful English accent. I asked ten times, Is it in? Is it in? Not quite yet, you’re doing great, just lovely. Just lovely indeed. I think of scopes now and I smile.
3. Illness is not a muse. While I was reflecting on the foot-dragging resistance I felt against writing a medical update, I realized CF is not a topic I explore in poetry. Not one single poem is about CF. Lungs make occasional appearances, but the disease? Never. I’m sure it’s there in the spaces, between the lines, or casting a shadow over the words. Maybe CF is the dirt from which the words grow. But I don’t find the disease inspiring or worthy of ink on my page. As Rafael Campo writes in his fascinating article about illness as muse:
The only way we can defy our own mortality is through acts of the imagination, by creating the stories and sculptures and paintings and poems that will outlast us, but that will always be animated by our will to have created them. Even our greatest scientific discoveries can be understood in this way: they are not truly ends in themselves, by which we can ever hope to explicate away our suffering, but are rather part of the same process of dreaming and desiring, wishing and wondering.
Illness is simply a means of transportation. It’s a vehicle which drives me closer to the precipice of life and death, the greatest show on earth. The swizzle of life and death, mingling and steaming and frothing, constantly and simultaneously unfolding within every living thing (yes! in your body too! this very instant!). I’m not interested in the means of transportation; I’m interested in the view: the thin little string that keeps us here, inhaling, exhaling, multiplying, decaying, swinging back and forth, swinging swinging like a pendulum, maybe amazed and maybe not by the wild cacophony.
Autumn has arrived and it comes bearing gifts. Not just the gift of chilly pinprick mornings that send us snuggling deeper under the covers for another five minutes of cocooned slumber, nor the gift of front row seats for the annual leafy fashion show. The gift I’m referring to is my annual welcoming committee: the crackle I hear with every inhalation. The gift I’m referring to is the gutter-clogged feeling of airlessness bestowed upon each bronchial tube. Autumn is the season I begin to appreciate my treatments, even more willing than usual to do whatever I can in hopes of preventing my inevitable fall (pun intended). Autumn is the season I begin to figure out the most convenient time for hospitalization.
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When my brother underwent lung transplant evaluation (did you know not everyone is eligible for transplant?), he was given stacks of paper with information and answers to help him navigate this new world. It was a lot of information to absorb and keep track of. An entire binder was devoted to detailing and explaining the post-transplant medication regimen.
One piece of paper in particular remains in my mind: suggestions for ways to conserve energy while awaiting transplant.
By the time a person is evaluated for bilateral lung transplant, lung function typically hovers below 30%. Medical appointments can be annoying and tiresome for all of us, even in the best of health, but the process can be grueling for the person who is struggling to breathe. (Let me say it frankly: for the person who is dying). Consider what it is to carry the weight of medical appointments, daily physical limitations, ongoing treatments, worries regarding eligibility and making the right decision, watching and waiting for the beeper to buzz, exhaustion, inability to sleep, facing mortality every day, wondering if the surgery will actually happen and be successful, not knowing if your body will accept or reject this tremendous gift, and on and on. Quite a load to carry every day. Energy conservation is necessary and crucial at this point.
Even though I watched my brother pull himself up the stairs and then spend minutes catching his breath at the top, my relatively healthy body prevented me from understanding why someone would appreciate (no–need) suggestions on energy conservation. Even though the process of end-stage disease was unfolding right before me, I couldn’t comprehend the totality of physical deterioration.
After taking a shower, comb and dry your hair while sitting on the edge of your bed or a chair.
I lived with my brother. I witnessed some of his struggles and frustrations, and even still, I was unable to accept that an act as simple as taking a shower would deplete a person’s energy. At the time, I couldn’t recognize how every action ceases being just an action, but becomes the physical embodiment of sheer will and determination. Up the stairs. One step, then another. No matter how long it takes, until you get to the top.
*
Sometimes, after showering, I sit on my bed and give myself a few moments to catch my breath. I love showering; the dance of lather rinsing away, the scent of soap, the weight and pound of hot water. A pleasure, yes. But also an activity requiring energy. How strange it is to live in a body that craves rest after bathing.
*
This winter you’ll catch a cold, hopefully not the flu. You’ll be miserable for a few days, maybe a week. But one morning you’ll wake up and remember what it is to want breakfast. The absence of pain will be as notable for a moment as the aches from just a few days ago. You’ll want to get out of bed. You might even twist the blinds open to let sky back into the dank bedroom. Oh how good it feels to feel good! And within a day or two more, your body will forget the experience of illness, so thrilled to be once again what it has always been. Your body is a magician for the way it heals. It’s also a magician for tricking you into believing in the everlasting strength and health of the moment. There comes a day when the curtain will lift and you will see your body for what it truly is: fragile, miraculous, momentary.
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Today’s poem is for falling into a pile of leaves and for any other lovely way to fall.
This is a story* about an odd, cranky dwarf who could only stay alive by cleaning the same spot on a wooden floor day after day, several times a day. Usually she was happy to do it, grateful even. But every once in a while, even though she whistled tunes, our troubled little dwarf steamed with anger or bubbled up with anxiety the way strange and difficult creatures tend to do…
The door is closed, as usual, but the room feels unusually hot and cramped. It’s fogged with nebulizer steam. A bright overhead light and the computer’s glare assault my eyes. I’m strapped in to the machine. Droplets of sweat roll down and the backs of my thighs are sticking to the leather office chair. Always: a niggling thought I can’t control–can the neighbors hear? My hair begins to bother me, so I pull it up into a knot. Tight. My fingernails irritate me too. They feel like they’re digging into my flesh from the inside and I want to pull them out. I pump my fists open and closed, press my fingers palms-up against the edge of the desk to flex my wrists, pressing, pressing for some relief against the rising sensation of claustrophobia. Breathing in, breathing out, trying to breathe through the discomfort. First med finished, two more. My lips are salty and I can’t sit still. I’m watching the clock. 20 minutes left, 11, now only two. If I have to sit in this room one.minute.longer. Finally, it’s over. Over for now, until I begin again tomorrow morning.
And now, dear readers, we’ve come to the end of our good night, sleep tight, don’t let the bed bugs bite tale of momentary woe and anxiety. A modern fairy tale with no happy endings, just the chance to begin again each day. To shine the floor, bitch, and make it sparkle.
What makes you panicky? Which fairy tale character do you identify with– a glittery wood nymph, maybe the hook-nosed witch, or the tree that stands still to watch the drama unfold?
*This story is not a story about self-pity or complaint. I know it can be (and has been and will be) much worse. I also know that this very second, there are people suffering in ways I will never know and can’t even imagine. Please know I’m only trying to tell a story, not win the infamous Who Has It Worse Competition.
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Today’s poem is for the many ways there are of feeling stuck.
Los Feliz/a neighborhood in Los Angeles named for a land grant owner/feliz in Spanish means happy/can’t hear the name without thinking of happiness/coffee free birthday upgrade/blue sky afternoon for lunch with loves/pickle plate because i love my salty/mexican coke in glass bottle and hoegaarden/a bookstore worth loving/dinner with mother father brother angel S/laughinglaughinglaughing/have you ever tried to get your family to all fit on one chair for a picture/funny face pictures/kisses from S/story from the angel/presents/phonecallsmessagescards from friends near and far/facebook wishes peppered the day with exclamation points/crap maybe I’m not the loner I’ve always considered myself to be/sunshine and rain: love pouring down on me/(fuck you 37)/wrote: my birthday felt like a memorial/but so much better because I am alive to feel the love.
A few highlights…
A poetry section not relegated to the dark corner in the back.
Although I hope to harass you indefinitely with mind dribbles and “today’s poem”s, today’s poem is the poem I’d give you if this birthday would be my last.
To be brave is to be tired much of the time, half stunned by continual dusk. - Joseph Millar
There are some days you wake up and before your sleepy feet have even touched the cold morning floor, you’re already tired.
For the past month, I’ve been struggling with my blood sugar levels. It seems that no matter how diligently I test my blood sugar or how many shots of insulin I give myself (a few days ago I reached an all-time high of eight shots in one day), I can’t control the peaks and valleys.
It’s not just the emotional exhaustion and frustration of seeing those snaggle-toothed numbers on the monitor; there are tremendously debilitating physical effects too. When my sugar is high my body temperature drops suddenly, I get a severe headache, and all I want to do is sleep and vomit. When my blood sugar is low, I am sleepy, drenched in sweat, and unable to comprehend what is going on around me.
I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) when I was about nine years old. It was a fluke. I gave a required sample of urine for a sleepaway camp physical and the specimen showed that I had sugar spilling into my urine. I still remember exactly where my mother was sitting and the way her face crumpled when the pediatrician called her that evening to deliver the news. Oh, sweet pee.
From what I’ve heard, CFRD is not supposed to happen at such a young age. It usually happens later on when CF has progressed and deteriorated the body. I’m learning over and over again that the very things that aren’t supposed to happen, happen. People in Joplin Missouri are not supposed to get the roofs blown off their houses. People are not supposed to get decapitated by a tornado. Want to make a list with me of things that aren’t supposed to happen? It would never end.
But the truth is that I’m probably not supposed to be here now and somehow I am. My pincushion body and I are still here, giving CF the finger with a smile. Staying alive and giving CF the finger every single day is the reason why I’m one of the lucky ones. About 150 injections a month and I’m one of the lucky ones. My treatments are endless. Literally. They will never end, as long as I’m alive. Not only will they not end, but they’ll continue to demand more of me and make my life increasingly smaller as time passes. Yet I know with every cell in my body, defective or not, that I’m one of the lucky ones.
I’d be lying, though, if I said that I never get tired. Some days it takes all my strength or the brute force of gritting my teeth and putting one foot in front of another to make it through the day.
I’m tired of this:
And this:
And this:
I spend a frightening portion of my life trying to replicate nature and make my body mimic what it should be doing naturally. It’s mentally and physically exhausting, and although I know that it’s impossible to replicate nature, I’ll die trying.
My newest source of panic attacks, especially when I can’t seem to control my blood sugar levels, is the thought that my limbs will be amputated. I try to remind myself that it’s only an irrational fear and I stuff down the anxiety that is always threatening to rise and bubble over like a frothy pot of angry steamed milk. Perhaps though, it’s not such an irrational fear.
The effects of diabetes are cumulative and I’ve lived with CFRD over 20 years now. I can already see some of the effects on my skin; I rotate injection sites, but after almost 25 years of this my skin is bruised, tired, and starting to groan loudly every time I approach with a new needle. So I’ve begun to inject the flesh of my inner thighs and ass. Nothing is sacred.
Some years I’ve managed to maintain my blood sugars as tightly as a military bed. There are too many snatches of time, though, that the levels run like wild horses despite my best efforts. I can’t help but wonder what kind of wretched future (blind? limbless?) is being concocted for me by my hurtling, hurting cells in the hazy chemistry lab of my body. What will be the first to go? A toe? A foot? A leg? My heart’s ability to love life no matter what? Maybe this is all a game to see how far we can get dragged, ground to a pulp, cut to a nub, left with nothing but the echo of a cry that life is beautiful. Is life beautiful? Will I love life no matter what?
Bibliomancy. Oh, how I love this word. Before last week I didn’t even know it existed. I’ve been doing it for as long as I can remember, but thanks to Noan I now know that what I’ve been doing has a name.
I’ve written about Noan here before. She is my Robin Hood; she regularly leaves treasures for me to find at the entrance of my lonely cottage. In the short time I’ve known her, I’ve already learned so much. Most importantly, I’ve learned that you can feel friendship with someone whose face you’ve never seen and whose voice you’ve never heard. In reply to one of my posts last week, Noan sent me a piece she’d written for a writing class. I loved it and I asked her if she’d be willing to let me share it–share her–with all of you. It’s with great pleasure that I introduce my first official guest post writer: Noan Cleary.
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Bibliomancy: the use of books in divination
It was spring of 1999, and I was on the search for a surgeon. My younger daughter, Elizabeth, was seven years old at the time. Elizabeth has cystic fibrosis and that year she needed sinus surgery, and she needed it as soon as possible. I had an appointment that afternoon with one of the surgeons recommended by Elizabeth’s doctors, but unfortunately the appointment did not go well. This surgeon, I learned, was not the type of doctor that answered questions. When my husband called to see how it went all I could think to say was: What is the difference between God and a surgeon? God doesn’t think he is a surgeon.
I drove home from the appointment feeling rather beaten down and slightly weepy. Fortunately – because this type of physician-induced miasma was becoming familiar to me- I knew just what I needed. I needed a good book. More specifically, I needed that focused relaxation I feel only when my head is buried deep in a book. It came to mind that Anne Lamott had a new book out, and since I pass a bookstore on the way home I decided I would stop and treat myself to the guilty pleasure of a full-price, hardcover, chain-store book purchase. You can imagine my profound disappointment when the bored young clerk at the bookstore informed me, Oh, we don’t have that book in stock. I searched the store for an alternative purchase, but no other book felt right, and I left empty-handed.
Arriving home, I immersed myself in the nightly tasks of dinner preparation and homework tutoring. I was up to my elbows in long division and marinara sauce when I heard a voice say, Anne Lamott, and looked up to find Rosie O’Donnell on our TV screen. Anne Lamott, Rosie announced, is going to be with us tomorrow to talk about her new book, Traveling Mercies: Some Thoughts On Faith. How funny, I thought; I never remember seeing an author on the Rosie O’Donnell show before. I’m going to have to keep looking for that book, I thought to myself.
The following day I succeeded in tracking down a copy of Lamott’s Traveling Mercies, and that evening I settled in bed and began to read. It had been over an hour, and I was just beginning to feel sleepy when I read something that caused me to sit up and take notice:
On an otherwise ordinary night at the end of September, some friends came over to watch the lunar eclipse, friends whose two-year-old daughter Olivia had been diagnosed nine months earlier with cystic fibrosis. I know that sometimes these friends feel that they have been expelled from the ordinary world they lived in before and that they are now citizens of the Land of the Fucked. They must live with the fact that their younger daughter has this disease that fills its victim’s lungs with thick sludge that harbors infections. Two-week hospital stays for nonstop IV antibiotics are common. Adulthood is rare.
What surprised me most about this passage was just seeing the words cystic fibrosis on the page. I had never come across any mention of a child with CF in any book I’d ever read. I thought to myself: pay attention. And I kept reading.
We stood outside for a while longer, talking about this last flare-up, how frightened she’d felt, how tired. And I didn’t know what to say at first, watching Olivia go chasing the big kids, coughing. Except that we, their friends, all know the rains and the wind will come and they will be cold – oh, god, will they be cold. But then we will come too, I said; we will have been building this barn all along, and so there will always be shelter.
I read that ending two or three times, slightly puzzled. I would love to say that I found it illuminating, or at the very least satisfying. But I did not. I did not at the time want to hear about shelter from the damn storm. I just wanted the storm to end. I wanted a sign that better weather was on its way. But I paid attention because in some twinkle-twinkle-ding-dong kind of way I felt like the universe was trying to send me a message. Since that day, I have pulled Traveling Mercies off the shelf numerous times and re-read that ending, and it is only now, twelve years later, that I realize it told me exactly what I needed to hear.
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Thank you, Noan. You have been my source of bibliomancy quite often lately, offering little chunks you’ve gathered from books and life to help me divine my own way and find shelter from the storm.
Noan chose today’s poem: (click link to read entire poem)
My mother and I are extremely close. We’re also extremely different. My mom is loud, spicy, Mexican, talkative, overflowing with joy and enthusiasm, and has more energy than the Middle East. She loves to dance, sing and eat chocolate and ice cream. Me? Not so much. None of the above. As a child I’d often ask my mother to turn down the volume of the record player (yes, record player) so that I could concentrate on my book. Despite the differences, it somehow works for us.
This blog has occasionally been difficult for my parents to read. I’ve considered censoring myself but for the sake of getting ever closer to truth (my version of it, at least), I’ve written what I’ve needed to write and forced myself to ignore their potential discomfort. I don’t think either of my parents knew what a sailor mouth their daughter has…
Today I’ve caused my mother even greater discomfort by asking her to answer some of my questions about her experience raising two kids with CF born over 30 years ago. She did it side by side with my father (who I adore and who I am painfully similar to) but because it’s Mother’s Day, I will be focusing on my mom. She is phenomenal. She wrote much of her doctoral dissertation cramped in the tiny bathroom of my brother’s hospital room.
My intention, other than publicly declaring my love and admiration for my mom, is to hopefully provide some insight and support for mothers whose children have recently been diagnosed with CF. At the very least, I want you to feel a little less alone in your aloneness. I want to acknowledge you; mothers struggling to do your best with the challenges that have fallen into your warm, frightened, loving laps. I want to hug all the moms who make this world a better, kinder, softer place.
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How did you feel when you received the diagnosis of CF for your first child?
With the first diagnosis I felt numb. Rationally, I knew it was a sickness, but because I had never even heard the name of the illness, I imagined that my baby would somehow be cured very soon. I couldn’t rush home to google CF. There was very little information and even doctors didn’t know about CF! Your brother’s first pediatrician told us he wouldn’t make it to age 10.
How did you feel when your second child was born and received the same diagnosis?
We had consulted a geneticist before getting pregnant and he (incorrectly) informed us that the chances were slim to none of it happening again. So we decided that with low statistical probability on our side, so much love for the first child and more love to give to a second baby, we’d have another one. When the doctor told us that you had CF, we never looked back. We never regretted having you, CF or not.
Do you feel that a period of “grieving” is a natural and necessary part of the journey with CF?
I would call it grieving if you’re referring to anger together with sadness and limitless fear. If this is your definition of grief, for me it started when your brother got very ill when he was 10 months old and needed to be taken to the hospital where I lost his beloved stuffed animal (Laika) and I lost my belief in the fairness of life. Somehow I could handle the emergency hospitalization but losing that dog broke my heart a million times. It still hurts.
Did CF influence your approach to parenting?
I can’t tell you if I would have been a different type of mom to a child without CF because I never had that opportunity. Looking back, I wish we would have been more open or comfortable with CF so it wouldn’t have been such a heavy burden on all of us, trying always to appear as if everything was ok. Because of the almost secrecy, I allowed CF to take too much energy, prominence and space in our lives. By trying to pretend it wasn’t there, we allowed it to define who we were. I also think I was too lenient.
How did you manage your fears and worries? (You always made me feel that everything would be okay, that everything was okay. Now that I’m a mother, I know what a hard thing this is to do when you’re falling apart inside).
I have never managed my fears completely but I have NEVER lost hope either (except once for a short period, before your brother’s transplant). I’ve done everything to deal with my fears: cried till my eyes hurt, prayed a lot, bargained with God a lot, banged walls and hollered, talked non-end about it, kept silent about it. In order to deal with it I have kept busy with work, dance, art, too much bad food, and I have been helped by a husband that will listen and doesn’t cry when I need to cry, having a mother who shares the tears with me; having one sister and a few friends who try to understand.
What is the worst thing about CF for you?
There is not a single worst thing about CF for a mom. There are various: my guilty feelings because it is a genetic disease, my impotence of not being able to make it “all better”, no matter how much I try; coming to terms with the randomness of life’s “justice”; and of course witnessing how you and your brother suffer when you don’t feel well, when you get bad news, when you’re frightened.
Is there any good that you think has come from us being a family with CF?
Yes, believe it or not, there are good things about being a family with CF. We don’t take time, health, laughter and life for granted. Every day counts, and every good thing that happens is worth celebrating. Not many families live like that. Most people live as if they are owed a good life. We have been VERY lucky to be aware of the miracles that have been given to us, such as the success of your brother’s transplant, you getting pregnant and giving birth to your angel, being witnesses to how courageous a human being can be (as we have watched you and your brother); witnessing the love that S has for you. Lots of sadness, but how many families laugh and love the way we do? Both somehow come from the same place of deep love for each other and for life.
How has CF affected your life personally (not just as a parent)?
For a long time CF defined my life. When I used to wonder “Who am I?” my first definition was always a CF mom. That definition always made me feel different from other moms and I hated every mom that had a healthy child. That has changed with time. Now I am a wife, mom, grandma, daughter, dancer, sculptor, etc. And, oh that’s right, my kids have CF.
If you could, what would you tell mothers and fathers of children who have recently received the diagnosis?
Today’s parents have a lot to look forward to in terms of research and many new treatments in the pipeline. Even though CF is a genetic disease, it’s NOT YOUR FAULT! Nobody chooses to give an illness to a kid. It is simply life happening. So if you need to, get psychological help ASAP and get over the guilt. If your child needs to be hospitalized, do whatever you can to have a family member there 24/7. You can (and we did) prevent errors from happening if you’re there and you’re watchful. A support system is very important. Even though everyone else seems to have healthy kids, don’t lose your friends; you’ll need them. Do not despair, there is ALWAYS hope. Doctors know a lot, but they don’t know everything. Nobody knows what the future holds. Take time to take care of yourselves (mom and dad) and find activities that take your mind, body and spirit away from CF (yes, fundraising and outreach are important but don’t let CF become your entire life). Do not forget that you and your child are alive right now- don’t lose the now because you’re worried about the future.
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Thank you for answering my questions Mom. Thank you for being my Mom. I love you and today’s poem–my little offering– is for you.
Happy Mother’s Day to anyone who is a mother and anyone who has a mother.
Happy birthday to my angel who turned nine yesterday. In the typical blossoming cooler-than-thouness of nine year olds, she has adopted the practice of rolling her eyes whenever I hug her. I tell the child she can roll her eyes from here to Kentucky because she’s stuck with my hugs forever.
Now for some housekeeping…
*For those of you who read about my recent clinic visit, I have an update. The no-show endocrinologist called and offered me a sincere apology and a telephone consultation. Although it doesn’t make up for the hours I lost, the courtesy is worth something. Points, doc.
*For those of you interested in the April raffle, I promised I’d announce the books that are up for grabs. I’ve selected anthologies to increase the odds that there will be something for everyone. Although I don’t own any of these titles, I’ve been wanting to add them to my own heaving bookshelf and the next best thing is to give one as a gift. The winner will choose from one of the titles below:
She Walks In Beauty: A Woman’s Journey Through Poems, selected and introduced by Caroline Kennedy
*A reader whose blog I visit on a regular basis responded to my last post with this virtual gift:
It’s a reminder we all need every once in a while, and now I have it on my phone to look at whenever I need to be reminded. I’m so thankful to MSB for capturing the sentiment and sending it over.
*Another treasure came in the mail from N in reply to my momentary rant against words:
A fabulous article from the great Michael Cunningham on writing…a writer should always feel like he’s in over his head.
N has sent gifts in the form of interesting tidbits, links of interest, and literary treasures since Day 1 of this blog. Just seeing her name in my inbox brightens my day.
*Yesterday my beautiful R sent me a photo of something she encountered on her way to work:
I hope you gave the driver a thumbs up, R. Thumbs up (and quiet, heartfelt gratitude) for everyone working to end this disease. Your name will be on the cure.
So many presents to unwrap and savor, I feel like it’s my birthday.
*One final bit of excitement…
I found this in a jacket pocket the other day:
A crinkled fortune in an old jacket, but there’s no harm in recycling fortunes. Perhaps the unexpected event has already happened, but maybe, just maybe, my life is about to sizzle with excitement. Either way, I’m thrilled. I put it back in the pocket to find it again next year.
Birthdays, mirthdays, delight in the mail days, and excitement on the verge days…all cake worthy.
