Recovery

Saying Thank You: Writing to My Donor Family

For months, I agonized over how to offer my condolences to people I’d never met for a loss about which I had no details. I imagined different scenarios: how different it might be for a parent to receive the letter, compared to a child or a sibling. Because organ donation is an anonymous process, my doctors gave me no information about my donor after my transplant ― not gender, not age and certainly not cause of death. My social worker told me I could write a letter to the family of my organ donor and I might be able to learn more about my donor if someone responded.

After reading a few sample letters other recipients had shared online, I decided all I could do was write about myself. Thinking the letter’s recipient(s) would want to know who I was and how I was doing, I described my life before the transplant, and why I needed a new heart and lungs. I wrote about how my life has changed since my operation, and my goals for the future. I thanked them for saving my life.

With my 24th birthday in mind as a soft deadline for my letter, I delivered a hand-painted watercolor card filled with my best condensed handwriting to my social worker near the end of April. A weight lifted when I had finished, as if I’d just turned in a final paper. Now, when people asked if I knew anything about my donor, I could say I had taken steps toward knowing more.
In July, after celebrating a full year with transplanted organs, my thoughts returned to the letter. I’d heard I would be notified if and when the letter was delivered to my donor family. On a whim, I emailed Donor Network West, the organ procurement organization involved in my case, to check for an update. A call the next morning informed me the organization had not received any correspondence from me. To my dismay, the letter was lost, adding another item to my list of disappointments in my transplant team. I wrote again, this time in an email, promising future handmade cards. Still nothing.

I believe it’s important that my donor family knows how often I think about them and my donor, and how hard I work to care for their gift. As I return to a routine that isn’t entirely dictated by my health, I can see more friends, some of whom I lost touch with while in the throes of medical drama. At coffee with a friend from college, I was taken aback when she asked if I feel better now than I did before my transplant. Admittedly, she doesn’t know much about pulmonary hypertension, and I was pretty good at hiding my symptoms when we lived together.

When my team was listing me and I was forcing myself to picture best-case outcomes, I didn’t imagine the life I have now. My transplant changed my life in truly unimaginable ways. Not only can I breathe easier, but my whole circulatory system is healthy now! I’m thriving, and I want my donor family, in addition to my family and friends, to grasp just how transformative this has been.

With the holidays approaching, I am writing again. I delight in celebrating birthdays and other occasions with my family, but recognize the inherent unfairness. My donor family spends their holidays without the person who saved my life. I know that I didn’t cause or hasten my organ donor’s death, and that putting their gift to use is the one thing I can do to help some good come out of their loss. Still, I understand that their family might not be ready to rejoice with mine.

It was surprisingly painful for me to write my first thank-you letter, and I went through several drafts. I had to reflect on my life with PH and how close to death it brought me, in addition to empathizing with my donor family’s grief. I cried a lot more than I ever expected I’d cry while writing a thank-you card. Everyone has to go at their own pace, but I encourage other recipients to start writing as soon as possible.

Even though my donor family has not responded, writing to them has brought me closer to closure. The act of describing one’s life before and after transplant is an important step in processing the amorphous mass of emotions involved.

Some of the resources that helped me write my donor family include guidelines from Gift of Life and from UNOS. Sample thank you letters worth consulting include ones published by Los Angeles TimesSharlie’s Angels Blog and Bob’s New Heart Blog.


This post was originally published by Pulmonary Hypertension News.

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Recovery

Redefining Self-Image

The best product of my teenage angst was a series of abstract paintings entitled, Attached to a Machine I through IV. During my junior year of high school, I was particularly upset that my doctors had switched me from a tiny pump that fit into my pocket (CADD-MS™3) to a tiny pump that fit in my pocket (Crono Five) with a syringe that stuck out a bit. Truly catastrophic.

The new pump meant that I could receive medication at a lower concentration and faster rate, putting an end to a series of hospital stays caused by clots that formed when my medication was accidentally stopped for too long. Each time my Broviac catheter clotted, surgeons had to replace it. The operation required general anesthesia and often came with additional complications, like blood infections I spent weeks fighting, with caustic medication tearing through my peripheral veins.

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Oil on canvas.

Foolishly, I fought hard to keep my cute, pager-sized pump, only recently freed from the brick-sized pump (CADD-Legacy™1) I started on in first grade. Introduced to the market by an Italian manufacturer, the Crono Five pump came in a snazzy green color. At the time, I had a Samsung flip phone with a megapixel or two, and I started taking close-up pictures of my pump, printing them out, and then painting them. The results made me more comfortable with my latest attachment and earned me an A in my high school art class.

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Acrylic on canvas.

My pump—whether it was the CADD-Legacy™1, CADD-MS™3, or Crono Five—gave me life. Or rather, kept me from death. Any interruption to the medication brought on nauseating symptoms of withdrawal, even in the few moments I discontinued the delivery to change out the pump, syringe, and tubing. In my more dramatic moments, I thought I shouldn’t be alive—that only a series of tubes and beeps sustained me, and that a machine defined me. Painting was a physical outlet for my rage, the brush strokes therapeutic. Abstracting the machines that administered my treatment gave me control over the image of my illness.

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Chalk and graphite on mat board.

Now I have life because of another human being. My tissue stitched to my donor’s and not to a tube, my life has new meaning. When I’m flying down a hill on a bike, sweaty and exhausted from the climb, I exalt for both of us. I take this healthy heart and lungs where my organ donor cannot go in death, and where I was never able to go in life with PH. In December, I traveled to the south rim of the Grand Canyon, at an elevation above 7,000 feet—my first trip post-transplant, after a lifetime limited to altitudes below 4,000 feet.

Painting allowed me to create beauty from the trials of my disease. My organ donor created beauty through the trails I’ve hiked, walls I’ve scaled, photos I’ve taken, hugs I’ve given, jokes I’ve told (they’re wildly funny), and the life I’ve lived because of their gift. Every impact I make builds on the impact my donor made in their selfless decision. Owing my life to another human being, rather than a pump, is a responsibility I am increasingly honored to have.

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Hiking at altitude in Sedona, Arizona, with my family.

Author and hospice chaplain Kerry Egan observes that the hard things we go through define us, but that we decide how they define us. She writes in “On Living” about finding a way to let her hard thing be kind to her. My ugly syringe led me to paint, and my transplanted heart and lungs led me to write and climb rocks. I never wanted a pump, or a disease, for that matter, and I never wanted a transplant. I often wish I had a normal childhood or could hope for a normal future, whatever that means. But at the same time, I wouldn’t want to miss out on the (sometimes fuzzy and abstract) beauty that defines my abnormal life.

Originally published by Pulmonary Hypertension News.

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Recovery

Life with More Spoons

My sweet friend Teresa has stopped asking me if I have enough spoons to hang out with her. With my health stabilizing, appointments fewer and farther between, and my oxygen saturation at a steady 100 percent, I have a lot more spoons to work with. If you’re sitting there wondering whether heart-lung transplants come with a surplus of cutlery, let me explain The Spoon Theory.

Christine Miserandino originally coined the metaphor to explain what it felt like to live with lupus. At a diner with a friend, she used spoons to quantify the total supply of energy she had between rests, and the amount of energy (number of spoons) needed to perform daily tasks like getting out of bed and taking a shower. Borrowing from nearby tables, Christine gave her friend a bouquet of spoons and had her friend list the activities she did in a day, taking one or two spoons away for each. To her friend’s dismay, her bouquet quickly dwindled.

Spoons were a useful symbol for me to explain my limitations to friends and family. When I had pulmonary arterial hypertension (PH), I was tired from the moment I rolled out of bed at 10 a.m., tearing my oxygen cannula from my nose, and heading to the bathroom for my first round of diarrhea for the day. I almost never made my bed because all the reaching and tugging involved was exceptionally depleting. After cooking a meal, I would struggle to clean the dishes I had used, creating tension with roommates. Thinking about each activity in terms of the number of spoons it required helped me budget my energy with more intention.

Since my transplant, I’ve gained an appreciation for how hard my life was with PH. Everything is easier now, and I feel kind of guilty because many of my friends (and readers) continue to battle health issues. It’s impossible as a healthy person to fully understand life with PH, but I battled the disease for 23 years, and now I’m learning what life is like with a healthy heart and lungs — what it feels like not to use all my spoons in a day.

The cashiers at my local supermarket tease me because I come in a few times a day to purchase one or two items. I can go to the store as many times as I like without experiencing fatigue. It’s a privilege not to have to plan as much of my life in advance.

More than a year with my new heart and lungs, I still budget an inordinate amount of time for certain activities, like showering, which used to take at least half an hour with a sterile bandage change. My mind has not quite caught up with my healthy body, and I surprise myself when I’m able to exercise, do household chores, and work on my photography business all in one day.

Experiencing life with more spoons, if you will continue to indulge this metaphor, has made me fearful I will lose them again. I’m protective of my newfound health to the point of paranoia. I feel I cannot delay any of my goals, and that I owe my energy to those who have less.

In high school, Teresa waited patiently for me to catch my breath every few minutes while I attempted to hike with a group of friends. After college, she’d understand when I didn’t have enough spoons to meet her at a bar. Last month, we went hiking after I had spent the morning rock climbing. This time she didn’t have to wait for me — I even carried her water bottle. With ample spoons left, we went to dinner, and I drove her home. My therapist tries to tell me that just because I can do more now, doesn’t mean I have to or can do everything. I’ll let you know when I figure out how to slow down.

Though I’m afraid my health might decline again, and transplantation comes with myriad risks and unknowns, every day I accomplish more than I ever imagined doing when I had PH, and even find myself with extra spoons to spend doing silly things like brushing my dog’s teeth before bed!


Originally published by Pulmonary Hypertension News.

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Recovery

The Waiting Rooms That Give Me Community

When my alarm goes off at 9am in clinic and I pull out my bright green pill organizer, others around me start to do the same. “I’m glad she did that because it reminded me,” I hear one woman say as I leave the room to find a space where I feel safer taking off my mask for the five seconds I will breathe unfiltered air and drink sips of water.

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One week’s worth of the medications I take.

Lung transplant clinic days begin when I take a seat in a line of patients waiting for the Pulmonary Function Lab to open at 7:30am. Next, we race to complete chest x-rays and blood work before we can get our name on the list to see a physician. Some days I spend five hours at the hospital leading up to a five-minute meeting with my doctor. This isn’t unique to transplant clinics. Hospice physician, Ira Byock, recalls his father saying twenty minutes into a wait at a cancer center, “They give you only six months to live, and then, little by little, they take it back from you.”

Masks make it easy to recognize my compatriots so I try to use time in waiting rooms to meet other transplant recipients. I carry business cards with a link to my blog to make it easier to stay in touch. I’ve met patients ten, fifteen, and even twenty years post-transplant, heard stories about overcoming rejection, and traveling internationally. Sometimes it’s just nice to not be the only person in the room taking Prednisolone, a drug that makes me pretty much constantly on edge, and that has lived up to my pharmacist’s initial advertisement: more side-effects than letters in its name.

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Fellow pulmonary hypertension status post-double-lung-transplant patients Mark Simpson and Mari Matsumura share stories in a waiting room at Stanford Medical Center.

The drug that kept me alive before my transplant was so uncommon I had to fly or drive long distances to find other patients (and doctors) who understood it. My mom and I attended a pulmonary hypertension (PH) Conference in 2000, a week after my diagnosis. A fire alarm went off in our hotel the first morning. Standing outside in our pajamas, we met other families attending Conference, who, unlike us, had thought to grab backup supplies for their pumps that, like mine, administered intravenous Flolan, a medication with a worrisome 6-minute half-life. Forever after, I had a dedicated “backup bag” that went everywhere I did. Biennial PH Conferences were one of few forums in which I met other patients and learned critical information, like how to conceal my pump under a dress. Now I have a built-in community I can recognize based on the time they have their labs drawn.

Barring a few exceptions, all transplant recipients take an immunosuppressant with the brand name Prograf (also known as Tacrolimus and formerly FK506) every twelve hours. Transplant teams have a target level for the Tacrolimus concentration in the blood based on type of organ transplant, time since transplant, and so on. You don’t want the level to be too low or you might reject your transplanted organ(s), but you don’t want it so high that you risk infection and toxicity. Since the level can fluctuate a lot while trying to find the right dose with a handful (literally) of other drugs, labs must be drawn frequently–twelve hours after the last dose and immediately before the next. For me, that means at 9am or 9pm.

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Two-time heart transplant survivor Corie Crowe models in a surgical mask alongside her medication.

Sometimes I’m just not in the mood to deal with needles in my veins right after breakfast. Luckily, a friend I met in a waiting room taught me the secret of the after-hours lab. When a father and son line up with me at 8:30pm, I’m certain they’re checking Prograf so I introduce myself and ask what the boy had transplanted. Forever a perfectionist, I have them check in ahead of me so I can wait to have my labs drawn a little closer to 9pm. Out in the hallway, I overhear the phlebotomist praising the boy’s bravery. I smile, transported to bittersweet childhood memories.

As a child with PH, phlebotomists told jokes in vain attempts to distract me from the needle piercing my skin, my parents had me squeeze their hands, and rewarded me with bags of chips after my blood was drawn. As an adult with a heart-lung transplant, I calmly pull down the arm rest, squeeze my fist, and take a deep breath. In a few moments hundreds of thousands of other transplant recipients will be silencing alarms and swallowing pills. I am not alone.


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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Recovery

How My Cosmetic Products Changed with My Chronic Illness

“What’s with the nail file?” my sister asked, her eyes failing to conceal her amusement. Still grinding my nails down, and with two backup emery boards in my purse, I explained my new habit, one of many recent changes she bore witness to.

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My nurses gave me a present when I was discharged after my heart-lung transplant. They included a set of nail files, explaining that filing my nails down was safer than using clippers, which could lead to open wounds and infection. I think this applies more to infants who could lose an entire toe to adult nail clippers. I’ve had no issue caring for the cuts I get while rock climbing (this makes me sound way more hardcore than I am). Still, I latched onto the idea and started bringing nail files everywhere. Filing helped pass time in waiting rooms and gave me something to do instead of building anxiety.

Makeup

Expired products can harbor bacteria, so I trashed lots of cosmetics after my transplant. A drug-aided identity crisis contributed to my desire to dispose of relics of my life before transplant. With the promise of three months living near the hospital, away from my friends and career, I struggled to imagine a future resembling my past. A year later, I still don’t own makeup. It doesn’t make sense to apply concealer right before I put on an N99 mask.

I welcome any stranger to point out my lack of eyeliner instead of the far more obvious feature distinguishing me from my peers. Applying makeup can be fun and make me feel good, but newfound confidence and an appreciation for naturally pink lips, cheeks, and fingernails makes me less interested.

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N99 respirator mask worn to protect against infections.

Mupirocin Ointment

I didn’t trash Mupirocin, an ointment prescribed by an otorhinolaryngologist — a specialist concerned with diseases of the ear, nose, and throat — to prevent nosebleeds caused by drying supplemental oxygen and high doses of blood-thinning Coumadin. One New Year’s Eve, I spent six hours bleeding into a trash can of tissues until it finally stopped. Other nights I went to an emergency room. I haven’t had a nosebleed since my transplant, but I still apply Mupirocin when dry environments like airplanes irritate my nose.

Deodorant

When my body was fighting pulmonary hypertension (PH), I hardly ever broke a sweat. In fact, I felt colder with exertion. In the middle of an exercise class last week, I looked down to see my entire arm shiny with moisture. Disgusting. I’m regularly horrified by how much sweat my body can produce. It’s as if I’m going through puberty all over again, and it’s just as startling at 23 as it was at 13.

Acne Treatment

Thanks to prednisone, I have acne for the first time in my life. I’ve changed up my body wash and apply ointments prescribed by my dermatologist. I’m grateful to have the time and energy to wash my face every night. When I had PH, I was overwhelmed by the steps I had to take before I could get in bed: mixing intravenous medicine, changing pumps, taking pills, applying Mupirocin, and setting up oxygen, to name a few.

Hair Removal Cream

Many patients experience rapid hair loss or hair growth with large doses of prednisone after transplant. I gained a mustache and sideburns. Not ideal for a 23-year-old woman. A nurse practitioner told me patients “just deal with it,” but luckily, members of Facebook groups and my dermatologist suggested other options. Hair removal cream became my go-to fix once I moved past the nasty smell.

Sunscreen

Due to immunosuppressive medications, transplant patients are up to 100 times higher risk of developing skin cancer. I wear clothing with long sleeves, sport dorky hats, and embrace applying sunscreen before leaving the house, even in foggy San Francisco.

Antibiotic Ointment

When I hike or rock climb, I bring fresh Neosporin (it expires quickly) and bandages — an easy way to maintain peace of mind and an active lifestyle.

Cocoa Butter

A friend recommended dabbing Palmer’s cocoa butter with vitamin E on my chest tube scars after they started to heal. I can’t know for sure that this had an impact, but it gave me a sense of control over my healing process. I apply it to all my scars (including scars from Broviac catheter replacements) and wish I had done so before my transplant. Applying the cream forces me to touch my scars and become more comfortable with them.

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Scars healing eight months after surgery.

I’m fascinated by how the change from life with PH to life after transplant with chronic immunosuppression manifests in my life every day. What I lost, kept, and gained in the transition was more tangible and far-reaching than I anticipated.


Originally published by Pulmonary Hypertension News.

Photos © Kathleen Sheffer Photography

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Recovery

Valuing My Life With PH

I found a four-leaf clover, at last. I haven’t found one since my heart-lung transplant and I have been worried four-leaf-clover-finding was another part of Kathleen that did not carry over from pre- to post-transplant life. My memories of spotting four-leaf clovers go as far back as first grade when I would spend recess sitting in the field scanning the grass for those extra-special shamrocks. One summer day I collected 26 four-leaf clovers from the lawn in Verna’s backyard while my sister swam in the pool. To have gone more than a year without finding one seemed like a bad omen, since hunting four-leaf clovers became second-nature, continuing through college and long after I let go of the collection pressed between the cardboard backing and glass of an elegant frame Verna had on hand.

In gaining a healthy heart and pair of lungs, energy, and circulation, I’ve lost parts of my identity. Beyond spending less time sitting on lawns, I no longer have a Congenital Heart Defect or Pulmonary Arterial Hypertension (PH). During an O2 Breathe Walk, a fundraiser for the Pulmonary Hypertension Association, I was given a T-shirt that says “PH Survivor.” I debated whether I could still wear it. For a long time I thought that transplant meant I had given up the fight against PH; that I had failed to last as long as I needed to for researchers to find “The Cure.” Honestly, I didn’t wear the shirt outside even when I had PH, and it took some doing to take a photo that showed more than “URVIV.” When I reframed transplantation as a treatment for PH, I decided I am still a PH survivor because I was born with PH and fought it. I wore the shirt to bed last night (it makes a great pajama top)! 

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Like others I tried over the years, this treatment option comes with major side-effects. When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests, and appointments each week, it didn’t feel like much of a life in the beginning. Now when I meet recent transplant recipients, I have the urge to say the same, knowing how difficult and rare it is to survive the wait for a donor and the operation itself.

“Congratulations on your new life” does not acknowledge the value of the life before the transplant. I had 23 years of that “old life,” and I had grown fond of it. PH sucks (this super cool enamel pin by artist and PH survivor, Jenny Janzer, agrees with me). Life with chronic illness is not easy, but like most challenges, it can be an experience rich with unique opportunities. Everyone’s interests evolve with age, but many of mine developed because of my illness and the limited choices it gave me.

While my cabin-mates at summer camp swam in the pool, I did crafts. While I was at home with pneumonia, tethered to an oxygen tank, I did jigsaw puzzles and played board games. While my sister went to soccer camp, I took a web design course. Now that I need to exercise my new organs daily to maintain their function (and my sanity), I spend less time on art projects and board games. As frustrating as it was to be slowed by shortness of breath, I noticed more things when I moved through the world with PH, and would take photos on walks with groups, while surreptitiously catching my breath.

“Congratulations” does not acknowledge the spectrum of grief and celebration inherent to transplantation. It’s a continuous grief process that began with the loss of my organ donor. “The Call” offering me a heart and lungs en bloc, brought the knowledge that someone with A+ blood had died, that I might die in surgery, and that I might live to experience life without PH. Sixteen hours after my call, I lost the heart and lungs I was born with, and my pump, a machine that delivered life-prolonging medication to my heart for 17 years.

Recently I worried that, without refresher training, I could not perform the procedures I did while on the pump. Then I decided it’s OK for a 24-year-old with a liberal arts degree not to know how to mix intravenous medicine. Still, I miss having saline, gauze, and sterile bandages on hand, especially since my active post-transplant lifestyle seems to make me more prone to injury.

One night, while hospitalized after my transplant, I went for a walk with my dad and my IV pole. Stiff, cranky, and swollen from steroids, I was furious when dad said, “I am just so happy for you.” Like “congratulations,” his statement was an insufficient summary of complex emotions. What I’d prefer to hear as a transplant recipient, and say to others in my situation, is difficult to summarize in a few words. The closest I’ve gotten is this: “I am so happy you are alive, and I know it isn’t easy.” Those of us living with chronic illness often see ourselves as a burden to others and don’t want our complaints to make us appear ungrateful. We need to be reminded that our lives are valuable. We need others to know that the fight is not over after an operation; it is ongoing, never easy, but full of opportunity.

I love having the ability to chase after my dog, go on 9-mile hikes with my friends, and photograph 10-hour weddings with heavy equipment in tow. My post-transplant life is very much informed by my PH life, empowering me to appreciate falling asleep without an oxygen cannula, and changing clothes after showering, instead of sterile bandages. Last month, my sister and I took our bikes to ride along the same path we rode so often as children, and later as teenagers. The slopes I previously perceived to be mountains are now gradual hills, and the ride that drained a full day’s energy barely ranks as a workout for my new organs. When I catch my breath with ease, I cry for the little girl with blue lips who had to learn before other kids to shift gears on a bike to make it up hills. I cheer for the transplanted woman who now can race her younger sister up those hills (and win fairly, sometimes), even if it’s 20 years late. I cry for my donor, because my new life is only possible because they lost theirs.

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Relief washed over me when I saw it. As if it might run away from me, I hastily snapped the delicate stem and examined the stunted fourth leaf crowded by the others. I’m comforted to know there will be time in my new life to sit in the grass disentangling shamrocks until I find the elusive extra leaves that make me feel as special as they are. Now it will happen because I make the time to sit and look, and not because I’m too tired to stand.


Portions of this post originally published by Pulmonary Hypertension News.

All photos © Kathleen Sheffer Photography.

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Recovery

The Garden of Memory

I woke up on the longest day of the year knowing my friend would be taken off life support. After spending the morning rock climbing, I checked my email. Fwd: THE BEST THING IS TONIGHT. Chapel of the Chimes, a columbarium in Oakland, hosts an event called The Garden of Memory to celebrate the Summer Solstice. After looking up the word “columbarium,” I agreed to go. Events with people who are comfortable talking about death are my thing. In fact, the first person I recognized at Chapel of the Chimes hosts You’re Going To Die, another great event with people who are comfortable talking (and singing) about death.

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Spectators gather in Chapel of the Chimes’ Garden of St. Matthew to listen to Probosci, a collaboration between violinist, Timba Harris, and guitarist, Gyan Riley.

The email promised 75-100 musicians, so my housemate recommended earplugs, but as soon as I passed through the courtyard and into the building, noise turned to music and I was in an environment unlike any I’d seen before. Partgreenhouse, partlibrary, partchurch: my friends and I explored the space, following sounds and getting lost along the way. Oakland’s columbarium was redesigned and expanded in 1928 by the first licensed female architect, Julia Morgan, who attended my alma-mater, UC Berkeley, and L’École des Beaux-Arts in Paris. As an Architecture student, I was taught to set constraints for my projects because more creativity happens within fixed boundaries. Not only guitarists, pianists and violinists were tucked into the vaults: performances included a magnet-controlled water organ, a Theremin, and a parrot serving as lead singer.

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Zola drawing crowds and cheers while playing the Theremin.

Stepping around gothic fountains, squeezing single-file up staircases and through archways, we found walls lined with urns, stained glass windows, and bouquets of fake flowers. Solstice is derived from the Latin words Sol (sun) and sistere (to stand still). On the solstice, we filled the stone halls of this columbarium with movement and sound because grief is active and dynamic. It does not sit still. In the same way, memories are not fixed: they can grow and die like plants; stretch and distort like sound.

Memories of my hallucinations in the first weeks of my recovery are still with me. In addition to imagining conversations and visits from friends, somehow the sound of mylar balloons brushing against each other in my hospital room made me think from my fixed position in bed that my dad, sleeping on a cot, was frantically writing in a journal. I keep the memories that aren’t doing any harm, and try to weed out the ones that are. For 17 years I held onto fear and anger from my first cardiac catheterization. With perspective (and therapy), I know that the nurse who was unsuccessfully trying to stop my screaming with Disney’s, Aladdin, playing on a screen to my left, genuinely wanted to help me, and the surgeon stabbing my right leg didn’t want to hurt me, and everyone in the room was just upset as I was that a 6-year-old heart was recording pressure values that solidified a diagnosis of Pulmonary Hypertension. The memory isn’t exactly erased, but reframing it diminishes the trauma.

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In May, after three huge doses of steroids (500mg IV Solu-Medrol per day) to treat my rejection, I felt like a lab rat. I had no choice but to accept the chemicals and wait to see what would happen. My mind became a maze with thoughts racing, getting diverted and eventually lost. I filled several notebooks with lists and messages to myself, convinced that writing something down by hand would preserve it in reality. On clearer days, I struggle to make sense of the fragments I managed to record, which include the singular word “ache.” The chemicals made my body sore in a way that Tylenol cannot fix. They wiped out my white blood cells and increased my anxiety. They made me hermetic, afraid to socialize with tears threatening to escape at any moment. The chemicals also cleared my rejection.

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Maddie visiting Basil and me in San Francisco, March 2016.

Maddie’s life was fixed to 24 years, but her awareness of the brevity of life made it richer and more dynamic. She chopped all her hair off two years ago and dyed her pixie cut blonde the following year. “Life is too short for a boring haircut,” she reasoned. When a bronchoscopy sent her to the MICU on a ventilator, I was certain she would pull through. Maddie is a fighter. She conquered leukemia, Pulmonary Hypertension (PH), a double-lung transplant, and a single-lung transplant. We met when we were 9 years old and convinced that the best use of our time was riding escalators up and down again and again at the fancy hotels PH Conferences are held in. The stares we got and the laughs we had were certainly worthwhile. Last year, I reflected on her strength as I entered the operating room for my transplant. Maddie’s snapchats and memes about being on Prednisone put a smile on my puffy face during my hardest days after surgery. “I can feel my cheeks jiggle,” she tells me after her first dose of IV Solu-Medrol, a.k.a. Mega-Prednisone. I finished my course the week before and the steroids are starting to affect my mind so “Amazing,” is all I manage to text back. Five weeks later my organ rejection was gone, and so was Maddie.

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Among the gifts Maddie left me (including this letter she sent me in 2002 that makes us best friends), was her last text to me: “You gotta take the wins when you can!” Sometimes it’s easier to find bits of light in dark times. Millennial digital photographer that I am, I am still learning how developing happens in a darkroom, but I’m pretty sure it’s a good metaphor for this. The harder my life gets, the more gratitude I have for anything that runs smoothly. I rejoice when I find a space that makes parallel parking particularly easy, or when it only takes one attempt to gain IV access (can’t remember when the last time that was).

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The worst and best thing about grief is the growth that happens after the loss. That other lives continue after one ends is both a comfort and a burden, a fact accentuated for transplant recipients with deceased donors. I mourn friends I’ve lost most severely when I’m unable to talk to them about important changes in my life. But the passage of time that brings these changes also brings changes to the grief, and the loss itself can spur positive change. My closest college friendships were borne out of and strengthened by bereavement. My willingness to talk openly about death has made for more meaningful conversations with many people in my life, and lots of cathartic tears. “When grief develops and grows,” hospice chaplain, Kerry Egan, writes in On Living, “it somehow becomes diffused across the memories that surround the loss at the heart of it. It seems less concentrated, and therefore more bearable.” The loss of Maddie still feels concentrated and unbearable, but reflecting on the happy memories we made helps develop my grief. Rock climbing, riding trains, and walking over 3 miles to be a part of filling a columbarium with life, keeps me (and my grief) active.

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Cornelius Boots playing a shakuhachi (Japanese bamboo flute).


All photos © Kathleen Sheffer Photography

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