Weekly Confessional: A Preview of Memories

I meant to post this on Sunday, to keep up with my Sunday Confessional theme. Alas, between work and preparations for my trip to the east coast, this post did not make it up in time. I'll try to get to confession this Sunday, though!

I was hoping to announce this post a great deal earlier than this, but that is not how life decided to play out. After a stint in New York City, I will be visiting Pennsylvania, and between gorging on Elio's toaster pizza and taking in all of the art I was too bratty to appreciate as a child, after nineteen years of being away from the city, I am revisiting the Children's Hospital of Philadelphia. This isn't just going to be a whichever day I decide to walk in, followed by lunch at the local cafe, no no. I have a scheduled visit which includes a walkthrough of the fifth floor west wing, my wing. This is the wing where I spent more nights that I'd like to count; a good portion of my years in Pennsylvania. Five years may not seem like a lot of time in the grand scheme of a human lifespan, but these particular five years of my life were easily the most significant as they shaped me, giving me two open heart surgeries, a best friend, my first ambulance ride, influential teachers I will cherish and strive to impress so long as I live, an animal companion whose life meant more to me than many of the humans that have crossed my path, a cardiologist I admired and would hold all others up to in terms of quality and temperament, and a profound loathing of cold climates. I find it appropriate that this adventure be held in my thirtieth year and had hoped for a number of years this would come to fruition. It gives me all sorts of warm and fuzzy feelings when goals are realized.

I didn't walk away from Philadelphia with many unresolved issues of the psychological or emotional variety; I am a fairly upbeat, confident person when I look back at that time. This is largely in part due to the staff and very nature of CHOP doing all they could to make the lives of their young wards easier, brighter and as cheerful as humanly possible. While sterile white is a common motif among my hospital-related memories, so is the color yellow - bright and welcoming, yellow was the main accent color along with rainbow plaid curtains to draw around my bed when the need for privacy took me. 

"Get to the playroom."

"Get to the playroom."

This was my only mantra whenever I was ensconced to CHOP; a virtual wonderland of video games, board games, books, videos, puzzles, toys and other instruments of happiness to assist the morale and hurry along the recovery process. My favorite was the free-standing Ms. Pac-Man game that had no need of quarters, just patience and will.

This was the room to meet and befriend the ever rotating faces, names and stories that came through fifth floor west wing. Though I do not recall all of their names, I am proud to say I remember a handful of the girls and boys whom I either shared quarters and happy memories with: Raven, Lauren, Jeremy, Nathan, baby Alice, baby Jordan. Raven and Lauren would be about my age now; Raven with her many asymmetrical braids of all shapes and sizes, much gusto in her personality; Lauren with her long, fine brown hair and blue eyes. Jeremy was older than I, almost banished to the adult ward but still able to catch a few years in the children's side. He would be close to forty now, with quiet mannerism, long hair and a love for his acoustic guitar. Nathan was around my age as well, dirty blond or light brown hair. 

It is Baby Alice, though, whose wide, blue eyes sought me out as a source for comfort and familiarity amongst the confusion of her just-begun life. I don't recall how old she was exactly, my mother says between one and two. Her own family was rarely present, as I believe they lived out of state with both parents in the work force. If my mom pulled the curtain that separated our beds to a close Alice would scream and cry until it was pulled back and she could see me. I would feed her ice chips and read her stories by the hour. Reaching through the cold metal bars of her crib I would hold her little hand, still chubby with that layer of new baby pudge, and talk to her in tones that suggested a higher knowledge than my seven years possessed. 

Baby Jordan was around two when we met; a plastic tube from his nose led to a Crayola dark green oxygen tank that shadowed him like a faithful service animal. Already handsome with thick, dark curly hair and dimples despite his thinning frame, he was desperate to be on the go, toddling about the playroom with a fierce determination and joy no illness could snatch from him. HIs father, his poor father, exhausted and overwhelmed, let me, a nine year old, watch over his son as he escaped to the downstairs cafeteria for a much needed cup of generic coffee. Exhilarated with my new found responsibility, I took my duties of Jordan-sitting with an ardent earnestness that would follow me into my career as a child care provider. Hovering behind him like a farmer's daughter with a flock of chicks, I herded him around the playroom where ever his heart desired to venture.

Suddenly seized with the memory of one of my earliest babysitting gigs when I was fourteen, I made what I thought was a rhetorical inquiry to baby Jordan's fate. My mom's face had the answer. She had kept the secret of Jordan's death for five years. Enraged, I demanded to know whose death she had also kept but she couldn't recall who lived and who died. She had a system; whenever I was admitted to the hospital and boisterously inquired after one of my little friends, the nurse would silently shake her head at my mother, too subtle a gesture for the self-absorbed child mind to heed. Mom would then politely suggest that such-and-such friend was probably home, or at school. Not precisely a bastion for recollection, my mother had forgotten the rest of them. Jordan's case was different for her; she remembered the haunted appearance of his father…how completely ignorant he and his wife were to this club which they did not ask to be signed up for, only to find themselves in another club with the worst membership fee possible.

My first bout of survivor's guilt happened the night I discovered Jordan's death. The conclusion was swift and simple: I must live and remember as much as I can, whomever I can. I will live and I will carve my own definition of happiness into the universe, not to be deterred by finger-wagging eejits who would tell me I am an unformed person for not completing the required checklist of adulthood success; for not coloring within the lines, as it were. 

Though I would be over the moon should I be able to hunt down those I do remember, I know federal HIPPA laws prohibit medical officials from divulging any sensitive material and therefore I do not have my hopes set high. However, I do not expect this to be a sad visit. Contrariwise,this will be a harmonious reminder of all the miracles both science and the human heart can design when they are one. It will be nostalgic and sentimental, as I am both nostalgic and sentimental, and I will be sure to take notes on my observations and feelings. 

It is apropos that the woman I am staying with during my time in Philadelphia is not only a fellow adult with a congenital heart defect but a former patient of CHOP. Indeed, we were frequently in and out of the same ward when were both young, and odds are favorable that we once shared a hospital room. Irony. She is an abundant mistress.

For now I wait on the proverbial edge of my seat, eager to experience the thoughts, memories and emotions I undoubtedly will as I revisit the Children's Hospital of Philadelphia. Will I unearth catharsis? Self-inflicted wounds of yore? Ennui? As the immortal Chuck Barry once said: you never can tell.

PFAM Blog Carnival: Mistakes of the Medicinal Kind

Selena from Oh My Aches and Pains is in charge of the October Patients for a Moment blog carnival. The theme is "medical mistakes" and this is her prompt:

"We're all human.  (Even the zombies and vampires among us where once human...)
We all make mistakes...including your doctor. 
EEEeeeeekkkk!  
Since those of us with chronic illness use the health care system the most, I'm sure you all have a story (or two) to tell about the misteps, mishaps and misadventures that have happened to you in the course of getting medical care."

 The only mistakes that come to mind are of the medicinal variety They weren't willful, of course, just unfortunate. 
In 1991, I was prescribed an antiarrhythmia drug called procainamide. It'd been on the market for forty years, so it was reasonable to assume that it was safe to give me when I was burdened with a myriad of arrhythmia episodes. This was my second medication ever, as I had been on Lanoxin (aka digoxin aka digitalis aka foxglove) since I was an infant. So its initial incorporation to my daily routine was not that catastrophic of an adjustment.

It worked. It was really potent with my heart and my monthly run to the ER of the Children's Hospital of Philadelphia became a seemingly thing of the past. For a short while, anyway.

You see, procainamide has a virtual cornucopia of side-effects and one by one they descended upon me like locusts on an unsuspecting farm.

The rarest symptom decided to show up to the party first, plaguing me with bouts of extreme confusion, irrational thoughts and hallucinations - both waking and nightmares. Now, if you had known me as a child, only the confusion part would be leading you to think something was amiss, as it went down with my parents. I'm a crabby person in nature, so any irritability my parents chocked up to school stress (I was bullied) or lack of sleep, which was in fact being disturbed due to vivid nightmares. Assuming it was television infecting my already obnoxiously overactive imagination, my parents cracked down on my tv viewing habits. Indiana Jones and the Temple of Doom was in particular banned. No more monkey brains for meeeeeeeeeeeeee!

It wasn't until the confusion set in and my mother witnessed me leaving the house a half hour early before my bus, walking 15 feet down the sidewalk before becoming lost, confused and thoroughly spaced out that mom got a clue something wasn't all right with her daughter. 
She called me back to the house: "Rachael, where are you going?"
and I remember running back, so happy my mom had found me (remember I am standing in front of my next door neighbor's house - my house is well within view!) "Oh, mom, I was so lost! I forgot where I was and where I was going!"

Finally, physical symptoms manifested, beginning with myalgia - the shrieking muscular pain that kept me in the nurse's office for hours on end, as it was too difficult for me to shuffle from one class to the next.
Then came full-blown drug-induced lupus erythematosus, with joint pain to match the muscles that made me paranoid I had early onset arthritis, the disease that afflicted my grandfather for the majority of his life. Can you imagine a 9 year old sobbing hysterically in a school nurse's office, frightened she is going to die from the unfathomable pain in her joints? That was me, that actually occurred and I remember it plain as yesterday.

At this point my cardiologist sprung into action, hospitalizing me for 9 days to remove procainamide and watch for its ugly symptoms to recede, which they did gradually over time, leaving scarred memories more than any physical impressions.

I now pay attention to the "extremely rare side effects" portion of prescription drug labels. Experience has made me wary, with a profound empathy to the lupus community as I had a taste of what their day to day can feel like. And let me tell you, honey, it ain't chocolate with sprinkles!

My only post script to this is to recount an incident that took place about eight years later, when I was forced to see a terrible doctor who placed me on Procainamide against my wishes. I wrote about that over at The Ghost of Douchebags Past.

Another medicinal mistake was the atenolol debacle...but I have not drank enough alcohol to share that story publicly. Another time, my love muffins, another time.

Sunday Confessional: Walking the Line

I do not come from a family that applied any undue pressure on me to "settle down." The same can be said for my brother, who has been living in blissful sin with his lady love for a number of years. Our parents could just never be arsed to tell us what to do beyond "Get your elbows off the table"; "Don't talk with your mouth full"; "Mario, stop hitting your sister"; and "Rachael, lower your voice." Even the former dropped somewhere between my junior high and high school years.

So having kids - ah, correction - the desire to have children comes as a natural maternal urge within me, as opposed to a necessity built on societal and familial expectations. It has always been there; as far back as I can recall, as far back as my mom can recall. Harkening back on my pre-memory making days, mom recalls how I played with baby dolls in a way she never did; she who hacked off my hand-me-down Barbies' hair off never had the desire to cuddle a plastic doll to her chest and play house. Mom was about Creepy Crawlers, Erector-Sets, Chemistry Kits, and Mini Private Eye play sets, whereas I wanted stuffed animals, My Little Pony, Sweet Secrets and Care Bears. Gender biased be damned, Mom's tomboyish nature was not connected in any way to her maternal urges and children came to her at a "ready or not, here they are!" young age. So when her own ragamuffin took to dressing up her kitten with doll clothes and referring to it as her "baby" mom figured it was only a matter of time before I'd be opening Rachael's Orphanage for Wayward Children.

Which was, of course, a problem in the sense that my health was poorly and probably going to remain a jungle of issues throughout the duration of my life. Children...should not be an option, all of the adults decided for me in my early life. Well, decided for me is not a wholly accurate term as I do not believe anyone would have snatched my uterus from me like thieves in the night. I believe the correct way of describing this is my mom and my doctors took an active role in making sure my forming brain knew there were other options available in the wonderful, wide world of child rearing. 

It is a fact that my first preschool teacher, who ran her care from her certified home, was also a foster mother, and whose (then) two (eventually three) children were adopted. Whether this was just a twist of kismet or if this was a domineering factor in my placement in her care remains to be known. Either way, from the age of three onward my mind was aware of foster children, adopted children, mixed-ethnic families, blended families. It was part of the norm right when my brain was developing, coming to realize there was indeed a world wider than the span of my arms.

For years I didn't have the need to worry about these silly, grown-up and seemingly faraway troubles. I had fun in my childhood, in spite of my health, climbing trees, wading knee-deep in the creek that flowed not fifty yards from my house, riding my bicycle to the neighborhood convenience store and spending my allowance on a slice of pizza, candy and a rented movie. These were my simple joys in life. Kids...they were always "Some day" while I was content enough to be the mother figure of my friends, of the younger children in my annual summer day camp, of the younger children I shared a hospital room with at the Children's Hospital of Philadelphia.

Then...

An incident happened. Something so deeply personal, not really to me as I was an unfortunate witness, but to someone I once called a dear and best friend. Though we are no longer in touch, I feel it would be a disservice to her to share her past with the world.  Let us say an incident happened, one that changed our friendship dynamics forever and made me suddenly hyper-aware of my desire to have children, of the actions I must take to not let this happen prematurely and even if did...what then?

What then indeed. For the first time in my life I experienced resentment toward this situation; it was no longer acceptable to adopt children. What about the joy of naming a child? Of that new baby smell? Of being able to beam with pride when strangers complimented me how much my child looks like me? Of noticing inherent interests, behaviors and quirks? Why was I to be robbed of these things? It wasn't fair and I wasn't going to accept it.

I consoled myself with child care; I took Regional Occupation Program classes in child development, earning myself a certificate by the age of 17 as I spent time out of my school day volunteering at St. James Church preschool, got an after school job babysitting in both my junior and senior years and eventually a full-time nanny position as I went to college for early childhood development/education. 
My career in child care was cut short in 2008 after my health was too effected by the germs my little petri dishes carried around themselves, making me ill if they so much as coughed in the next room over from me. It had been a good decade full of high's and lows, with many a funny story to share with others. 

So I returned to writing, telling myself that I was starting to lose my patience working with kids anyway, and that it was going to ruin my temper for my own children, so best to get out now while I can repair what nerves a tirade of irritating parents and their coddled children didn't trample to death. I'd already been well adjusted back to the idea of adoption, even surrogacy. My moment of self-pity was simply that; a moment. 


Around this time I became aware of the "Childfree by Choice" community. I would never say I ever actively engaged in the community, but I admire and appreciate them. Their humor brings me solace and is something I strongly empathize with because I have a handful of friends, not to mention my own sibling, who is childfree by choice. Despite kids always being part of my agenda, the active decision to not have kids was never weird or unusual to me. The fact that there has been such pressure, ostracizing and social taboo placed on these good folks for simply not populating an already overpopulated planet with their offspring is just mind-bogglingly ludicrous to me. 

So I walk a fine line; a balancing act between laughing with abandon at those sorry enough to take themselves and their offspring seriously, to revel in my ability to sleep in however late I so please, to pick up and take-off whenever I so please; balanced against  the ache I feel when I see infants snuggled in a makeshift sling as mom shops the Farmer's Market, little shoes, dresses and overalls hanging on little hangers in stores, and elementary school Halloween parades.

The line had to be crossed last year when I decided to take my women's health issues into my complete control and, as I so eloquently worded it recently, "dumped my uterus like a bad news boyfriend." Truly, I did not have to cross that line. I could have gone as I had been: on another pill, a limited sex drive, 7-10 days out of my life dedicated to pain, unpredictable heart arrhythmias, and more blood than a Freddy Krueger movie. All of that without the guarantee I would not suffer any accidents, accidents that led to choices of life and death, decisions I believe it is a woman's right to make, but unsure I would make it myself. I could have gone on living like that. Frankly, I am a distrustful person and it was that distrust that made me cross the line and say, "Enough of this tightrope act. If I fall, there might not be a net below to catch me. It's time to solidify my loyalty to one team here." 
I chose Team Adoption/Surrogacy. 

People, I am not the most definitive decision maker. Dare I admit it; I am actually quite indecisive. When I do decide to draw a line in the sand, though? I will usually cross it, cartwheel and stomp on it with steel-toed boots.

I walked that line for so long, though, that What If line that is the very definition of my life in oh so many ways, that even though I know the decision I made was the correct decision for my life, my health, my future...It doesn't mean I am not, at my weaker moments, grieving the loss of What If.

Just because it was the correct answer doesn't mean it was necessarily the easy answer.

Your antihero is in the UCLA Adult Congenital Heart Disease Center Newsletter

TEAM RACHAEL! has been a thorn in my side for ages, trying to get me to contribute to their precious newsletter. While you are probably fainting from the shock of me not jumping on the opportunity to talk about myself in a printed form, you will permit me to explain why I was reluctant for so long. 

You see, I'm supposed to write about my life with a CHD and how it's shaped me as a person, or how I've managed to overcome trials and tribulations to achieve my goals and yadda yadda, cheese, cheese, fluff, fluff, fluff. 

On average these newsletters feature patients with families, children of their own, and/or a spouse, and/or a deep enough level of comfort talking about their profound relationship with The Lord that I find unnerving. I have none of these things in my life, and felt uncomfortable being put into such a spotlight where all I could talk about was traveling, a failed career, struggles of a new career, my vile felines, and, like Napoleon on his exiled island, how shamelessly bombastic I am with a piddly little blog. I am not a hero; I don't consider myself to be an inspiration to anyone, nor a wealth of guidance beyond where you might find a good bite to eat in Cork City, Ireland.

However, they kept persisting and I finally caved in. For an embarrassing amount of time I wavered between having no creative flow, to sparks of zealous mania, which I would lose as soon as I emailed TEAM RACHAEL! to tell them I'd found my inspiration, gird their loins and EXPECT BRILLIANCE! 
Finally, I found enough momentum to see me through to the deadline and I scraped by. A couple of my friends have told me they dig it, but they're my friends and that's what I pay them to say. 

Long story short, I was one of the three women featured in the fall edition of the Ahmanson/UCLA Adults with Congenital Heart Disease Center's newsletter. They sent me a .pdf and said they're working on an online edition, which 'should' be up next week. I don't have that sort of patience, so below is what I wrote for them on my life with congenital heart defect.


There is a fine art to maneuvering through life with a complex congenital heart defect, and while it’ll be a while yet before anyone starts calling me Rembrandt, I do all right for myself. Born with transposition of the great arteries and ventricular septal defect with a heart that sits center-right stage (we’re kind of a showboat), and has gone through both a Fontan operation and a pacemaker, I am not your typical cardiac patient. I’m slightly bombastic, a bit cheeky and more than a dash vainglorious. Thirty years of being poked, prodded, studied and talked at has left me just a touch defensive and I have worked tirelessly to construct a perfectly hardened exterior.

I struggled greatly to come up with a topic to write about because the possibilities seemed endless, with the only goal being that I didn’t want this to wind up being a piece of fluff, painting an image of myself I do not necessarily resemble all of the time. On one hand, I wanted to be irreverently humorous, something I can excel at given the right mood and circumstance.

Making people laugh has been a not-quite altruistic goal of mine, as I use laughter to deflect the seriousness of my health. Even amidst my first full-blown episode of tachycardia, which occurred during school hours in the first grade, I was cracking jokes as the nurses office became ground zero of frantic phone calls, panicked voices and forced calm for my benefit.
Yet another direction I debated was that of profound earnestness; philosophizing the various coping techniques my peers and I adopted, my own being in the form of a blog. It is easier to mentally digest the chaos my life can be caught up in when I have an outlet to, pardon my crudeness, vomit up my emotions. All of the preposterous, hyperbolic, vindictive and utterly raw thoughts and feelings I possess have a special place of their very own. It may not be agreeable for some, but for me it’s the ultimate catharsis.

Waffling between these options has forced me to accept and now openly admit a hard truth; a truth I realized once I started volunteering with Camp del Corazon and again when I attended the ACHA conference last year. I keep up the hardened exterior to mask my vulnerability.

Not unlike a wounded tiger, I sit alone and surly, watching the rest of the jungle from my dark corner, the façade of pride and judgment. I want to partake, not just the philosophizing joker with a bag of tricks designed to twist your attention from my wounds, but keeping a certain level of detachment has helped me not let my CHD define me as a whole person.

So maybe I’ll spin a grandiose tale about butting heads with a medical official, or repeat something funny that transpired with TEAM RACHAEL! (my medical entourage), but you may not see the true depths of my grievances; the isolation of my childhood, the struggles of a teenager who could not rebel even as her friends did, the young adult who struggled to find her footing in adulthood, and the woman who continues to mourn the loss of her uterus despite not living with regret about making the choice to have it removed in the first place.

No, you won’t see these things because I am too quick with my slight of hand. Did you see what I did there? 

Open Call for Women Living with Congenital Heart Defect!

OPEN CALL!

I would like to reinstate my "Heart to Heart" series wherein I interview young ladies/women living with a congenital heart defect. If you are age 17 and up and would like to be featured, please leave a comment or drop me an email! Interviews usually consist of 7-10 questions about you, your life, your life with CHD, your trials and triumphs and I usually ask to include a picture or two, or three (your face does not need to be fully showing). If you're under 18, please obtain permission from your parental unit and have them e-mail me too just so I don't get into trouble.

For reference on what an interview consists of, please refer to past Heart to Hearts.

<3