Thursday, April 30, 2009

Life Support for the Survivors

Death pacts between nurses are made regarding your situation. We pseudo-joke, “Pull the plug if I ever end up like that.” The consensus is that we would rather die than be who you are: completely dependent on equipment to breath, eat, drink and defecate. We talk about your husband amongst ourselves in the nurses’ station, calling him ridiculous because he is waiting for a miracle and leeching the hospital’s resources.
While the nurses question the value of your continued existence, your husband stares adoringly at fragments of your face that he can see beneath the tubing and breathing apparatus. My nursing orders for the day involve less time caring for you and more time caring for the machines that sustain you. While I drain and adjust, insert and flush, your husband’s eyes behold you and glisten. His miracle is that you wake up and laugh about what a fuss we made over you. He tells me you have a beautiful laugh—like a bird warbling in the forest.
Under the ventilator your lips maintain a sleepy smile. At your side, your adoring husband showers you with a love from fairytales—the prince looks at sleeping beauty and basks in the warmth and serenity of a pheromone haze before he thinks to kiss her. I am wrapped in your lover’s high and for a brief moment I believe that if he kissed you, you would open your eyes, give him the warbling laugh he is desperate to hear and say, “what took you so long to figure how our story is supposed to end?”
A chemical reverie saturates your room with the potent drug that God saved for lovers. Once I exit your room and the drug’s buzz wears off I know how your story will end. Your husband knows it, too. But for now he is euphoric in the last moments of your presence that he will ever feel again. I pause at the door on the way out, finding it difficult to leave a connection that feels so complete.
I wonder what those machines are for, if not to support you until your husband is capable of living without you. New technology adds an additional step in the mourning ritual to the end of life. In another era, your husband would already be mourning your death. Now, he has the opportunity to choose when he is ready to face the inevitable searing of your life from his and to prepare for his transition to an existence without you.
Back at the nurses’ station, your situation is still the topic of conversation. I join as we are discussing the least painful way to die. It is unfortunate that we do not discuss the least painful way to survive because that is the prospect your husband is facing.

Wednesday, April 22, 2009

In Memory of Evan Witty

Memory is an evasive beast. Modern neurology research fails to explain to me why there are certain moments that seem mundane yet are drilled into my mind and other moments escape me, though I may rationally deem them to be more important. For example, I remember almost nothing from my college graduation ceremony but I have a very crisp recall of the only time I spent with Evan Witty. For whatever reason that science can attribute, our exchange is imprinted on my brain.
Our interaction happened six years ago. Jonny Hork, Fiona Noorian, Alec and I were sitting around the Witty’s dining room table after a night out that probably involved some drinks and laughs. Evan came home in a state that I might call tipsy on life—he told us of his acceptance to a Baptist Evangelical college. He was glowing from a good night out with friends and the excitement of senior year. He rolled our conversations with his quick jokes and eager grin. We chatted and laughed, gossiping about who was going to what schools and anticipating what Senior Spring had in store for Jonny and Evan. Evan left to go to bed and the memory of the evening post-Evan fades from me.
I do not remember what Jonny, Fi, Alec and I did earlier in the evening or how I got home that night, but for whatever reason I distinctly remember the twenty minutes I spent in the Witty dining room with Evan Witty. That time turned out to be the first time we met and the last time we saw each other. His capacity to stick in my mind for as long as he has is a testament to his ability to make memories. I do not know why I remember him but I do know that his memory in me will not fade, regardless of how brief our encounter was. As others churn over the many amazing moments they shared with such a remarkable individual I am sure they will agree: Evan Witty is truly unforgettable.

Tuesday, April 14, 2009

Professional Paranoia

I would have exhibited the mole to my professor, but that would have required me to take off my pants and pull my Victoria’s Secrets to the side, which she may not have anticipated or appreciated during office hours. Instead, I took a picture of the offender—trying to crop out as much of my crotch as possible—and emailed it to my physician mother. The subject line was something like “Does this look like it could be cancerous?” Which I can only imagine she archived alongside the other emails I had sent to her since beginning nursing school, including “How loose is a too loose loose stool?”; “A concerning voiding pattern”; and “Am I too young for a colonoscopy?”
Her reply to my mole email was roughly, “I did not even open the photo. It’s not cancer—I remember seeing it when changing your diaper. Let me know which weeks you will be learning about STIs so I can make a point of not checking my email. Love, Mom.”
The worst adverse effect of the nursing profession is to know the various complications one can have with the body and diagnose myself with all of them. Now I know that ignorance is bliss, but unfortunately it is not an option in this profession. Those with active imaginations should beware, but I believe that even pragmatic left-brainers still suck in a nervous breath at the site of a rash, instantly thinking of Steven Johnson Syndrome instead of contact dermatitis. Your son’s cut might not be healing properly because he keeps picking at the scab but for an instant you think he has MRSA. Probably, that cough from your daughter is due to the smoke from the fire but your first thought was whooping cough, was it not? My treatment for these delusions is the company of a level-headed non-medical professional.
“Beanzie,” I said to my sister as I was driving her to school, “If I had renal failure and refused dialysis would you respect my decision and let me die pain-free on morphine? I promise you would only have to watch me suffer for about a month before I would kick the bucket.”
Without even looking up from her magazine she responded, “Or I could just kill you myself. How would you like to go?”
That is what family is for.
Against my mother’s advice, I started measuring my urine output. I did not use the measuring cup from my kitchen; I bought a new one from Target. After four days of measuring I found my voiding to be roughly 8 cups a day, equivalent to 64 oz and 2,000 mL, which is roughly what I drank due to my polydipsia. I was ecstatic. My email to my mom was titled “My kidneys work!”
Each moment on the toilet is now a moment of excitement. I can pee. Congratulations to me. Good job filtering, kidneys. Excellent control, pelvic floor muscles. Way to retain, bladder. Every aspect of my body is under performance scrutiny, but as each one passes my various tests I find myself loving the parts of my whole even more. To my lungs, thank you for inflating, deflating and assisting with gas exchange. To my heart, you are doing an excellent job pumping. To my mole, I appreciate that you are not cancerous. Here is to your health.

Insult to Injury

When I first come in the room, I find you adorably petite and huggable with a halo of white hair and a serene grin. I would have mistaken you for Mrs. Claus if you were wearing a red velvet jacket adorned with white faux-fur instead of a hospital issued faded-floral smock. I introduce myself as your student nurse and assess your mental status to monitor for the advancement of your dementia. You cannot remember what day it is, the word for straw or your son’s name. Your communication method is vague mumbling until I am injecting you with your medication. In that moment, you recall the words “cock sucking monkey” and yell them at me.
Call me judgmental, but I have a hard time seeing your resemblance to mild-mannered Mrs. Claus after our interaction. Dementia works in mysterious ways upon the brain. Rationally, I know I should not take the verbal attack personally but I am having a difficult time forgiving your insult. As a nurse, I will be with patients during their darkest hours and probably receiving the brunt of the frustration they feel toward their situation. For my sanity, I cannot take such statements to heart. Later in my career I will thank you for toughening my professional skin. But in this moment, I am hurt and saddened that the words “cock sucking monkey” are the only ones that you remember to address me with and I wish you had the mental capacity to apologize for them.

Therapeutic relationship

I want to tell Sarah that when I was six, I would draw lines horizontally across my nipples with a sharpie to mimic my mother’s scars. Her lines were a deep red protruding from the flat, brown, grafted nipples that attempted to make her implants look natural after the double mastectomy.
Instead, I reassure Sarah that when she gets her double mastectomy she will keep her nipples and the scars will not be large because of recent advancements in cosmetic surgery.
I yearn to laugh with Sarah about the time I chased after my little sister with what I said was a sewer rat but was actually the plastic wig my mom had used after her hair fell out from chemotherapy.
Instead, I comfort Sarah with information on the beautiful real-hair wigs available through organizations that make them from donated hair.
Another story I would like to recount to Sarah is when I was thirteen and I found the letter that my mom had written for me to receive in the case that she died of breast cancer. I feel like rejoicing with Sarah because my mom is still alive to tell me how proud of me she is. I crave to disclose to Sarah that when I am confused and lonely I read the letter to remind myself of how fortunate I am to still have my mother in my life.
Instead, I suggest to Sarah that she express her feelings by keeping a journal or writing letters to her loved ones.
I long to confide in Sarah that when I was nineteen I discovered that, like my mother, I am a BRCA 1 genetic mutation carrier and that during my lifetime I have an eighty-seven percent chance of going through what Sarah is going through right now.
Instead, I let the professional veil weigh on my shoulders like an iron curtain and my throat clutches this information when my panic wants to vomit it out.
Sarah, I want to tell you that when I think about the diagnostic procedures you have undergone and the choices that you have had to make in the last four months, a knot of anxiety curls in my stomach and will not ease. There is a lot I want to express to you but every time I feel the words that would connect our realities rise to my larynx, I pause to question whether I desire to say them to comfort you or to dissipate my own fears. Without doubt, it is the latter. Florence Nightingale reminds me, “How very little can be done under the spirit of fear.”
I take a deep breath and allow the dread to slide off my shoulders. I use my strength to untie my abdominal knot, disconnect my vocal chords and open my ears. Instead of telling you my history with your illness, I am trying to listen to yours.

Do Not Judge a Patient by His or Her PMH

In the hospital we use abbreviations because our time and paper is too costly to spend on long-winded names. For example, ED is Erectile Dysfunction, FLK is Funny Looking Kid and BM is Bowel Movement. I learned these as I browsed the obscure acronyms in Rick’s medical history before I met him.
Even with these shortening devices, Rick’s history took a page to write.
Rick takes insulin every day, checks his blood glucose level three times a day and has special shoes because of his amputated toes. He hauls around a pillbox the size of a 16-month daily calendar and attends dialysis appointments three days a week for three-hour intervals. This past year, Rick spent more time in the hospital than out because of congestive heart failure, a coronary artery bypass, and several foot ulcers that he could not feel develop due to his neuropathy.
Hospital documents are not leisure reading, but I found myself captivated by the adjectives doctors sprinkled throughout the documents to describe Rick. One literary juxtaposition was the adjective “jolly” employed when describing Rick’s affect during a bout of severe constipation. How is Rick physically capable of being “jolly” when his body is practically incapable of everything else?
I walk into the room to check his blood pressure and find out.
Before I have an opportunity to greet Rick, he bellows, “Good morning! It looks like a beautiful day outside!” He has not exited the hospital in two weeks so can only make such judgments from the sun streaming through the window. The rays catch his wide smile and it infects the sides of my mouth, upturning them into a grin.
I am bashful around such energy.
I was the four year old that would hide when Santa called to me: “Ho ho ho! Little girl, come sit on my lap.” Rick confronts me with a Santa-like vigor and my natural instinct takes over—I cast my eyes to the ground and try to finish the interaction as quickly as possible. As I take his blood pressure he tells me about the delicious hospital-cooked salt-free sugar-free chicken he ate last night and how much he appreciates the new art in the hallway.
“I admired the pieces during my evening walk down the hall yesterday. Hey, can you guess how far I walked? Twenty feet! I’ll be dancing out of this place soon! Move over, Gene Kelly!” Rick exclaims as I finish counting his pulse.
“Hey, I have a fistula. Have you ever felt one? It is really cool,” he winks at me and holds up his left arm, “The one they use for dialysis now is the third one down on my arm—the other two were used for so long that they don’t work anymore. Listen to it first, then touch it.”
I wish that I had my mom’s leg to hide behind.
Hesitantly, I put my stethoscope to the fistula and hear the blood percolating between the shunted artery and vein. I touch my fingers to the bump and pull back, surprised by the intensity of the tickle across my fingertip.
“It’s called a thrill,” Rick explains, “put your finger back on, it doesn’t hurt.”
I tentatively touch Rick’s fistula again and do not let myself retreat. The vibration of his skin soothes me and I start to enjoy the vigorous current of resilience that electrifies Rick’s being.

Friday, February 20, 2009

Using a Meal Map: Like using a Road Map

My first day of meal planning was as awful as the day I navigated downtown Boston with an old-school map and a list of addresses during a revolutionary war reenactment. (I am a Midwestern girl—I did not know that the downtown of a city would be used for such a historical purpose… or that people cared enough to dress for it.) I took a wrong turn and I went an extra mile down one-way roads and circled a rotary five times before exiting on the road I had previously been on, only to retake the same wrong turn two more times before getting it correct. I nearly crashed into several Tories dressed in red war gear who cursed me in faux-British accents and mowed down what looked like Amish women but were probably corporate lawyers dressed for the day. By the end of the day, I wanted to rip up my map and throw my shoe at the men carrying muskets. Thankfully, common sense overrode that last urge. I was angry, humiliated and totally confused. How could I make the same mistake three times? How could I lose control so often? You will ask yourself these same questions after you look back at your plan and compare it to your reality. Just remember: Practice makes perfect.
Now, after several months of practice, I am hoping to give to you the secrets I learned through four months of trial-and-error. Think of this as a GPS with a James Bond-esque sexy voice escorting you through the chaos of downtown Boston under a revolutionary invasion. Tune everything else out and just listen to the husky voice tell you the turns to make.

1) You need a friend to do this with. Friend might be a strong term—this could be a person you vaguely know but who you can check-in with via text message or email. Just having someone else to hold you accountable and laugh with really makes a difference. Ecards are a good way to congratulate each other.
2) You should have a very pretty notebook to write everything in. You will probably find yourself writing more than you think, anyway. (Example: “God wanted me to eat a bag of Reese’s Peanut Butter Cups. I was at the grocery store in the 75% off Halloween candy aisle and my cart hit the side of the display and one fell in. That is serious divine intervention.”)
3) Plan for “bad days”. Not all days and weeks are created equal and you know when you have to put in the push for work and what-not, so plan for that by designating appropriate snacks and snack times. Right before an exam I would plan a macrobiotic diet, thinking that it would shift my brain into high gear. Unfortunately, my stomach vetoed my food choices and went straight for the Sara Lee Oatmeal Cream cookies. One sweet snack was like a rain drop in the desert: it doesn’t rain, it pours. After a few of these episodes I decided to allow myself to have designated 100-calorie snack packs and Jello chocolate pudding cups the days I needed them because of an exam. This did not overcoming stress eating, but it did give me control over it, which was empowering. I am slowly weaning myself off the snack-packs, but it is a process.
4) You have to be honest with yourself. Write down that you only baked half of the cupcakes for your friend’s birthday because you ate the other half of the batter. The feeling of shame you get from that will keep you from doing it again the next time… or in my case it made me eat only a quarter of the batter the following time. Third time is the charm, though.
5) Recognize that your life could actually be easier due to meal planning. If you are busy like me, choosing food from a vending machine is an obscene process that takes more time and energy than I have for food. Now I just keep the carrots and hummus in my purse and cannot remember the last time I dug in my wallet for the correct change for the machine that does not accept anything otherwise.
6) Trouble-shoot your snacking: when do you do it? Why? Avoid situations in which you do it or come up with a substitute. I stopped studying at home—I started going to the library instead. I went to friend’s house to watch a movie and I would constantly be renewing the gum I was chewing so I did not dig into the Chex mix and Reese’s Pieces.
7) Write a list of things you will do instead of snack. Realistic things, not like “Do 20 pushups”. You won’t do 20 pushups. You won’t even get to the floor. You will shove some Doritos in your mouth. When I wanted to snack I thought of little stupid things around the apartment I needed to get done— I would chew a piece of gum and take the rugs outside to beat or checked under the cushions of my couch.
8) Plan your drinking. It is not fun, but it is responsible. And your liver loves you the next day.
9) Figure out whether you need to go day-by-day or week-by-week or whatever. I started trying to go week-by-week and I would give up before I even started. Day-by-day was the only way I could reward myself consistently enough to inspire me for the next day.
10) Every day is a new day to stay on track. Every meal is a new meal to get back to your plan. Do not throw all your plans out the window because you grabbed a Snickers instead of a carrot. Think of taking a wrong turn in Boston. Correct what you can by getting back on your main road and you will ultimately get to the destination you wanted in the first place. When you get to know the city better you can troubleshoot more creatively, but in the beginning just focus on staying on the right road. Do not blame yourself for the mishaps; as far as I can tell Boston’s downtown was planned by a four-year-old with a box of Crayola’s. Admit to yourself that what you are doing is very hard and you will make mistakes. You always have a journal to remind you, a friend to call and a top-ten list to refer to if you need to remember where you are heading.

Hopefully this GPS system will help keep you on track, but if you have anything short of a full-time chauffeur and a couple doses of Xanax you are going to feel some anxiety and frustration while you’re weaving between traffic. In those moments, keep your eyes on the road and your ears on the sexy man’s voice telling you to proceed to the intersection.