The Last Eden

AFRICA GROUPING

“The only man I envy is the man who has not yet been to Africa – for he has so much to look forward to.” Richard Mullin 

Africa in winter smells like spearmint and I hope that I never forget that sweet scent.  I want to carry Africa with me for the rest of my life.

I’ve been home from my safari for almost eight months now, but I’ve been reluctant to write about my experience. I suppose in part because I don’t think I possess the words to  translate the images in my head into sentences, but also for a surprisingly selfish reason. I just haven’t felt like sharing. I feel oddly protective of these memories – they feel rather sacred to me and I have wanted to keep them close in a secret place – like old love letters in a box.

You see, Africa was a cliché come true. It really was the trip of a lifetime – one I didn’t know I needed until I traveled 7,843 miles to Arusha, Tanzania. I’ve never been a bucket list kind of person, but thankfully my dear wife is, and Africa was at the top of her list.

AFRICA JOY IN PROFILE

Dear wife was so happy in Africa. Bucket Lists rock!

But let’s get back to my selfishness. Africa was so magnificent, and I want you to love Africa, too, and I’m certain I’m not a good enough writer to adequately convey its magic and mystery. So, I will borrow generously from some authors who did find the right words. Like Ernest Hemingway who said, “I never knew of a morning in Africa when I woke up that I was not happy.”

That’s how I felt every morning in Africa and that’s saying a lot because my luggage for the two-week trip never arrived. Two weeks. No luggage. I went on safari and my bag, thanks to a careless man in the Amsterdam airport, went on a boondoggle to a conference in the Netherlands and then on to London for several days before returning to the United States. My bag – and the small stack of brand new Columbia safari shirts which have no place in my real life – were waiting for me when I returned home.

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My ONE shirt at the end of each day.

I will admit to being a lifelong over-packer. I like choices – it’s as simple as that. And I loathe people who brag about traveling light like it is some sort of virtue. But guess what? Africa was so amazing that after my initial breakdown after learning that I would be wearing the clothes on my back for two weeks, I got over it. I’m not going to lie – the breakdown wasn’t pretty – yes, there were tears – but I ran through the stages of grief quickly and landed on acceptance after our first day on safari when I looked way up into a giraffe’s eyes so close that I could almost count her eyelashes. Choices are overrated. Giraffes are not.

AFRICA GIRAFFE SELFIE

Best. Selfie. Ever.

My good attitude was tested on the second day on a long game ride. We stopped at a spot that had restrooms and a safe space to stretch our legs. Throughout the day we had seen navy and black flags tied onto trees like a target. Someone in our group asked our guide what they meant. He explained, “Those colors attract the tsetse flies and help keep them off of us.”

AFRICA ADDY SHIRT

From the Tsetse Fly Collection.

Any guesses on the colors of my one outfit? Yep. Navy shirt, black pants. What could go wrong?

Here’s the other problem about writing about Africa. It’s like going to IKEA for the first time. You have a list of things you’re looking for – say a duvet cover and a shower curtain – and you leave the store four hours later with a basketful of whimsical dessert plates, five picture frames, two vases and a jar of lingonberry jam because, what the hell, you’re at IKEA. The store is so vast that you are completely overwhelmed as you hunt for that perfect bedding and you wind up dizzy from walking around in circles while coveting dozens of other tchotchkes you never even imagined existed.

AFRICA BABOONS

Me wandering through IKEA be like…

Africa is just like that only without the baby strollers. I arrived with my list – the Big Five – lion, leopard, elephant, rhino and water buffalo. Well, I got them all – four of the five on the very first day! But I also got dozens of other “finds” that I never knew I needed – like a dik-dik. Don’t even. A dik-dik looks like a miniature deer but it’s actually a small antelope and is the cutest thing you’ve ever laid eyes on. They hang out near the lodges for safety – they’re so tiny that the locals refer to them as “cheetah snacks”. The circle of life can be cruel, my friends.

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Two dik-diks are better than one.

The British travel writer A. A. Gill observed, “You either get the point of Africa or you don’t. What draws me back is that it’s like seeing the world with the lid off.” I think I got it or more accurately, it got me. Big time.

I love Gill’s analogy of the lid off. Viewing Africa up close is a rush of amazement and awe. You see it, but you also feel it – down to your spine.  If you ever saw the stage version of The Lion King, you might have an inkling of what I’m talking about. Remember the stunning first ten minutes of the show when the giraffes and zebras and company parade onto the great plains of the stage against the backdrop of a burning African sun? The music swells and you feel your heart expanding. Being on safari in Africa feels like that on steroids – with a lot of dust thrown in.

AFRICA LION CLOSEUP

Mufasa! Yeah, he’s definitely the boss of you.

I cried almost every day – not in a boo hoo way, but gentle tears of joy and wonder and a good dose of gratitude. And I wasn’t the only one. On one of our first days out, we came across a huge migration of zebras and wildebeests – they often travel together because  zebras can see very well while wildebeests have a keen sense of hearing. Together, they have a better chance of warding off predators. On this day, the chorus line of animals went on for miles at a noisy but peaceful pace. Our driver, the marvelous Edwin, had the wisdom to just turn off our Land Cruiser and let us watch in silence. It was a reverent interlude and needed no narration.

Karen Blixen, author of Out of Africa, captured the glee one feels in Africa when she wrote, “There is something about safari life that makes you forget all of your sorrows and feel as if you had drunk half a bottle of champagne – bubbling over with heartfelt gratitude for being alive.” All these months later,  I’m still nursing an Africa hangover.

This is where I get stuck – trying to describe how big Africa is. We spent most of our time in three areas –Tarangire National Park (an area of 1,100 square miles), the Ngorongoro Conversation Area (3,202 square miles) and Serengeti National Park (12,000 square miles). The name “Serengeti” is translated from the word the Maasai used to describe the area, siringet, meaning “the place where the land runs on forever”.

AFRICA LANDSCAPE

On a clear day you really can see forever.

And believe me, it does. There were times when I could look in both directions and not see anything but the plains and a single tree. Oh, the trees of Africa! I didn’t realize how smitten I was with them until I got home and started editing my photo roll. So many tree snaps and it pained me to delete any of them. The trees are so distinctive: the iconic baobab, favorite high fiber snack of elephants; the sausage tree that looks like, well, a tree with  big rolls of salami hanging from it and attracts baboons and many birds because of the sweet blooms it drops when it flowers; and my favorite, the lovely acacia tree, which sometimes whistles when the wind blows.

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Behold the baobab! World’s largest protein bar.

One feels very tiny on safari – especially when you’re around so many elephants. Even the baby elephants seemed ginormous. Sweet factoid – mama elephants are some of the best mothers in the animal kingdom. And you see this every day on safari. They are very affectionate with their babies and terribly protective – which we witnessed one day when our vehicle got what Mama thought was too close to the herd and she gave us a “fake” rush and a loud chorus of trumpeting. We all leaned back in the cruiser – as if that would save us. Mama don’t play.

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Nobody puts Baby in the corner.

One of my most favorite things on safari was learning the names of different groupings of animals. I don’t know who gets credit for this clever nomenclature, but it absolutely delighted me. Here are some of the best:

A flamboyance of flamingos.

AFRICA FLAMINGO MARGE PHOTO

  Tickled pink.                           Photo credit: Marge Hester

A crash of rhinos.

A cackle of hyenas.

A business of mongooses.

AFRICA MONGOOSE

                Their work is never done.

A bloat of hippos.

AFRICA HIPPOS SWIMMING

They definitely pee in the pool.

A leap of leopards.

AFRICA FRED SHOT LEAPORD CLOSEUP

Perusing the lunch menu.  Photo credit: Fred Brown

A dazzle of zebras.

AFRICA ZEBRAS TRIO

Not everyone can pull off stripes.

A confusion of wildebeests.

AFRICA WILDEBEAST

It’s so hard to get a good group photo.

An obstinacy of buffaloes.

And my absolute favorite – a tower of giraffes.

AFRICA DOULBE GIRAFFE

Neck with a view.

 

AFRICA ALARM

Hi-tech alarm system outside our door.

We saw them all and so much more – birds, crocodiles and lizards, too. We even saw animals post-safari when we were back in the safe confines of our lodge. As we arrived at each destination, our greeter would review important information including the admonition to not go down to dinner without an escort from someone on the staff. I thought that was a little much until I opened our lodge door on one of our first evenings to find two warthogs darting across the path. And one night while dining outside on a terrace overlooking the pool, we saw two Cape Buffaloes stroll by. None of the locals ever got too excited because they know the bottom line – the animals were here first.

AFRICA LION IN ROAD

Care to guess who has the right of way?

And here’s perhaps the most wonderful part of all – the animals know that, too. All the areas we were in have been protected for years and years, so none of these animals have ever been hunted or harmed by humans. I can’t tell you what they were thinking when they looked at us – sometimes curiosity, often a blasé whatever, but never fear. And that’s why those interactions were so sacred. We weren’t enemies. I was just a guest with orchestra seating at the Great Migration – a spectacular show that has been running even longer than The Lion King.

“To witness that calm rhythm of life revives our worn souls and recaptures a feeling of belonging to the natural world. No one can return from the Serengeti unchanged, for tawny lions will forever prowl our memory and great herds throng our imagination.” G. Schaller

The sign on the door to the Visitor Center at Serengeti National Park reads, “Welcome to the Serengeti, the Last Eden”. And that’s exactly what it feels like – you are at ground zero of creation and it simply stands you still at times. On so many of our game drives, I would just gaze out at the beautiful, untouched land and the cacophony of all those exquisite creatures and wonder two things. One, how can this really exist and secondly, how did we screw it up so badly? I’m certain God is somewhere in the answer to the first question, but I don’t have a clue as to the second one.

AFRICA NGORO GORO

The Last Eden.

We were sad when it was time to leave Africa. We would have been even sadder had we known it was going to take us 52 hours to get home, but on the bright side, I didn’t have any laundry to do the next day.

I’m trying to be cheeky because I still get a big lump in my throat when I think of never seeing Africa again. It is an expensive and expansive journey and most folks never get to go – and there are so many other places to see. But Africa puts its mark on you in an utterly transcendent way that I will never be able to convey with words.

AFRICA SIGN

For once I followed the rules.

There is an African proverb that says, “The eye never forgets what the heart has seen.”

May it be so.

 

AFRICA DUSTY ROAD

“If there was one more thing I could do, it would be to go on safari once again.” Karen Blixen

 

AFRICA ADDY AND JOY

I had the good sense to marry my bucket list.

 

AFRICA group

“I have found out there ain’t no surer way to find out whether you like people or hate them than to travel with them. ” Mark Twain  We loved our group!

 

 

 

 

 

 

 

 

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One shining moment

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Yes, Virginia, there is a Santa Claus.

I like to think I’m a deep, complicated person, but really there are just a few things you need to know about me to really know me. I love family, dolphins, Jesus, the Rockettes and sports. Not necessarily in that order. And before you haters get all judgy – and you know who you are, for me, sports and family have always been deeply intertwined. I’ll get into that later. Oh, and the other thing I love is being a Virginian. Yes, I’ve lived in North Carolina since 1995, but I will always – always – be a Virginian.

virginia is for lovers

Home is where the heart is. For reals.

This revelation was never more apparent to me last week when the University of Virginia Cavaliers played Texas Tech in the finals of the NCAA basketball championship. ACC basketball is a religion if you live around Tobacco Road as I do and UNC, Duke, and NC State are the Holy Trinity. UVA is treated as that second cousin by marriage that you can’t quite remember how you’re related to.

I was born in Virginia and lived in several cities there for the first 39 years of my life, but none longer than the dozen years I lived in Charlottesville. I can’t imagine that I’ll ever live in a prettier place and it is not surprising that C-ville often pops up on lists of one of the best places to live in the US.

My father was a UVA alum and I grew up going to a lot of Cavalier basketball and football games with him. They lost a lot back then, but it never seemed to deter his enthusiasm for the ‘Hoos – the unofficial nickname for sports teams of the school. He would always say, “We’ll get ‘em next time, Adda (his nickname for me).” Most times, next time took years.

Dad had great seats for UVA basketball – on the floor a few rows back from the team. You could hear the squeaking of the players’ sneakers and the coaches yelling at the refs. As a kid it was all pretty exciting, especially the coaches cussing, and we enjoyed some glory years when NBA Hall of Famer Ralph Sampson led Virginia to two final four appearances.

When my dad passed away in 2002, UVA’s fight song was played on the church organ at his memorial service and his absence was a strong presence on Monday night as I settled in to watch the game. I could almost feel him next to me on the couch. Our father/daughter bonding was mostly done over watching games and I’m so grateful that I inherited his passion and appreciation for sports. Sadly, my dear wife cares less about sports than anyone I have ever known, and she went to bed before tip-off. I was left to virtual watch with my sister in California and my dear friend Chris who lives in Crozet – a charming little town just outside of Charlottesville.

UVA led for most of the game but lost a 10-point lead late. That’s when I grabbed a

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How my sister “watched” the game.

picture of my dad off my bookcase and held it the rest of the game. Laugh if you must, but I don’t think I would have made it through those excruciating last minutes (including an overtime, are you kidding me?!) without him. My sister had stopped watching on TV late in the first half – she couldn’t take the tension and relied on me for text updates. I felt like an old-time Western Union operator sending telegrams. UVA is up by two. Stop. Texas Tech just hit a three. Stop. I’m having a heart attack. Stop.

As victory seemed so secure that even UVA couldn’t blow it, I texted her to turn the TV back on so that she could bask in the victory. When it was over – really over and we had won – I called her and we both sobbed. No words. It was one of the most joyous moments of my life. Oh, and just to be clear –sure, I was thrilled that UVA won, but those tears weren’t for a basketball game. No, they were for my dad. I got to witness one of my father’s wildest dreams come true and that, my friends, truly was priceless.

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My Instagram post after UVA won. And, yes, those are tears in my eyes.

That night – actually, the next day – when I finally got into bed at 2:00 AM, a montage of all the games I’d seen with my dad went through my head. I’m sure I smiled the whole night through and I wasn’t even tired when the alarm went off at 6:00 AM. And the first thing my wife said to me was, “Well, I guess your team won.” Bless her heart.

Yes, “my” team won, but it was so much bigger than that. Charlottesville won. Ever since the Unite the Right rally in August of 2017 when self-proclaimed members of the alt-right and white nationalists marched to promote white supremacism, Charlottesville has been identified with harrowing images of hate. None of us who love Charlottesville will ever forget those images – angry white men marching with tiki torches  on UVA’s main quadrangle and chanting, “Jews will not replace us.” We were completely gutted.

White-Nationalist-Rally-Charlottesville

Get off my lawn. Seriously.

That’s why a basketball game felt so important. It provided some healing, if just for a few hours, for a community that really needed it -in the transcendent way that few other experiences can. Chris texted me a few days after the game – she had been down to the notorious Corner – a seven block area of bars, restaurants and shops that serves as the hub of UVA social life. It is the home of Mincer’s, a fourth-generation family owned business selling UVA merchandise since 1948. Mincer’s was where most of my dad’s Christmas presents came from every year, because one really can’t have too many UVA coffee mugs.

christmas dad

Dad’s Christmas haul always included lots of UVA merch.

Chris had gone to get her championship T-shirt – the exact same one that the team wore after their victory. She has lived in Charlottesville for over 40 years and those events almost two summers ago wounded her deeply. She texted me an adorable picture of herself in her shirt, and wrote, “It was so cool to see so many people, townspeople mostly, not students, so excited to be buying shirts – young, old, black, white. This is the Charlottesville I know and love.”

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Winning fits Chris to a tee. We have been through a lot of losses together – in all manner of ways.

I am far from naive. I know a basketball game can’t resurrect Heather Hyer, the young woman fatally run over on the Downtown Mall while peacefully protesting the Unite the Right rally, or erase the years of bitter racial conflict surrounding Mr. Jefferson’s University that was built by slaves. As UVA Associate Professor Lisa Woolfork reflected in an op-ed piece for CNN, “They are NCAA champions. They are students who worked diligently in their courses and on the court. They are not hand sanitizer. Their accomplishments should not be used to conveniently expunge traumatic racist history or clean the reputation of this city.”

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I made a somber visit to Charlottesville a few weeks after the Unite the Right rally.

She’s right. We all love a happy ending and often gloss over the ugly origin while skipping through the agonizing middle, but there can be no shortcuts on the road to redemption. And it can never be a tidy process. We must continue the difficult conversations and we are compelled to sit with discomfort. Our country is deeply broken, and no sporting event on earth can eradicate the deep and painful scars of the past, but for one shining moment in April, Charlottesville felt whole again.

And I was home.

scott statdium

A community celebrates a championship…

cville strong

and the journey to redemption for this city I love continues.

 

 

 

Perhaps

Perhaps
By Carla Kucinski

On the last day of the year, a dense fog rolled in,
thick and hazy like a Whistler painting.
This day feels heavy,
the year’s final, long sigh—an exhale of the sorrow, the joy, the pain, the beauty.
Ahhhhh.
Tonight, I will go to sleep and lay to rest this heavy heart,
let go of the weight,
all that it has carried and endured.
Perhaps my head will be buzzing from the Moscow Mules I will sip with dear friend M,
counting down the New Year.
10, 9, 8, 7 …
Perhaps my heart will feel light like December’s first snowflakes—joyful, swirling.
Perhaps I will close my eyes and recognize that the lightness I feel is gratitude,
gratitude for it all—the darkness, the cracks of light—there is always light.
Perhaps everything has a purpose.
Perhaps next year will be easier—a break will come—
some peace will settle from the cloud of dust of 2018.
Perhaps I’m stronger than I think.
Perhaps this new year will feel like a warm blanket.
Perhaps that’s the beauty, the not knowing.
Perhaps, perhaps, perhaps …

***

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Photo by Carla Kucinski

I was born this way.

***

It is October. My health has been deteriorating, but I continue to operate at full throttle. This is all I know. This is my way of being for the past 38 years. I convince myself that I can still go through life the way I’ve always done, doing ALL the things, giving everything 110 percent—school, work, counseling, my friendships, my marriage—everything except me. I feel empowered. (I have no control.) I feel strong. (I am so tired.) I am kicking my lung disease’s ass. (It’s winning.)

Perfection and over-achievement, this is what I strive for. It’s also killing me. I am losing myself. Basic human necessities are becoming less of a priority. I am so amped up all the time that I stop noticing hunger cues to alert me to eat. When I do eat, I am so anxious that my body burns it up, hungry for nutrients. I eat trail mix for dinner. Every time I try to eat, I have a coughing fit. I cough so much that my trachea becomes inflamed and all I can eat for one week is chicken broth and vanilla Ensure shakes.

I drop 13 pounds in one month. I cry a lot on the couch in my husband’s arms.

***

My chronic illness this past year has felt like a tide pulling me in. Several times, I have felt like I am stuck in a rip current, treading water, fighting to keep my head above the ocean, my bare feet kicking furiously as I struggle to find solid ground. I felt like giving up so many times. I grew so tired and did not have an ounce of energy left in me. When I saw my new pulmonary doctor at UNC in late October, she asked me on a scale from 1-10 how I felt overall. I answered a solid two. Even my husband was surprised by my response. I’ve gotten good at faking appearances and keeping myself in denial about how sick I really am. “You don’t look sick,” people often say to me.

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Everything is always changing. That’s what my chronic lung disease has taught me. Just like how the tide rolls in and rolls out, so do the moments of our lives. Stuff happens. Sometimes things we don’t expect. Every day I wake up not knowing if it’s going to be a good breathing day or a bad breathing day. But this pattern of not knowing has helped me become more accepting of what is instead of how I think it should be. That’s not to say that on the days where I cough and wheeze for hours to the point where my bones feel like a rag doll that I don’t rage against the universe asking, “why is this happening?” or scream in frustration or cry in disappointment. Because I do.

Since my MAI diagnosis a little more than one year ago, there has been an ongoing tension between my lung diseases and me, a push and pull. This summer, every time I ran an extra mile or beat my previous time, it was like a big FUCK YOU to my chronic illness. I felt empowered. I felt in control. But when September came, and the fatigue drifted in like a dense morning fog, I started to feel like I was losing this fight again. By the fall, my illness began to pull me back to the sea and drag me under. I wasn’t expecting it. Allowing my doctor to hospitalize me in November felt like raising a little white flag, tattered and frayed. I surrender.

***

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I took this picture in October when I was too tired to leave my bed most of the weekend and wondered if I would ever feel “normal” again.

Late October. I have contracted another new, rare infection that is difficult to treat—and pronounce. It begins with an “S” followed by a train of many, many letters. My doctor’s words sound like white noise as she explains that I am “too young” and that we “need to be aggressive.” Over and over, I turn over in my hands the lavender Amethyst grounding stone I always carry with me to appointments. I hear “a couple of days” and “IV antibiotics” and something about a PICC line. She turns the computer screen toward me and points out the white puffs of cotton sprinkled throughout my left lung and the ominous black hole that is still visible one year later. “See this. I don’t like this,” she says, pointing with her index finger. She explains how we will work as a team and uses a beautiful metaphor of the both of us in a canoe rowing in unison in the same direction. She is my angel in a white lab coat. The doctor I have been waiting for. I am scared. I am in shock. But I believe in my heart that she will help pull me out of this rip tide and bring me to shore. She gives me hope.

***

That black hole on my CT image haunts me. Since my diagnosis a year ago, I often visualize what it looks like. When I run, I imagine that it’s shrinking in size. When I meditate, I think about transforming the blackness into a beautiful, white light with a purple ring of haze glowing around it. In my mind, I imagine my body healing itself.

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Lately, I’ve been thinking about a painting I came across one year ago on a December afternoon. Its image made me pause. Standing before this abstract piece felt like looking in a mirror. I saw myself, or rather, a part of myself: a blob of thick black paint with layers of gray underneath and surrounding it. It’s how I imagined the inner terrain of my damaged lungs, and the recent cavity that has formed due to my MAI. It looked like an abyss of blackness, a pit. I felt consumed by its size, its darkness. It brought me to tears. In my mind I could hear my doctor’s voice explaining to me the black, shadowy splotch on my CT scan three months prior, and how he described it as a ball of glue. As I stood there, I thought about when I had my aura read a few years ago and the image it produced of a splotch of darkness in the center of my chest. This was before I or my doctors knew what was happening inside my lungs, the disease that was beginning to colonize in my upper left lobes. As I studied the painting longer, I noticed that a light hue of pink the color of bubblegum revealed itself under the dark glob. I smiled recognizing this detail. To me, that color symbolizes hope, that underneath all the crap that life sometimes deals us, there’s always a shade of pink–if you look for it.

That pink hue is the raft I cling to when the tide tries to take me out. It is the line my loved one throws me when I feel I cannot tread water any longer. It is the fire burning in my belly that I inherited from all my ancestors that came before me, who were tough as nails. It’s what pushes me every day to get out of bed and face whatever may come. That is the great victory. I am resilient because like Lady Gaga I was born this way. I am resilient because that’s who my family is. I am resilient because I watched my family overcome impossible things. My grandfather fought in and survived two wars, numerous floods, and lived to be 97-years-old. 97! My grandmother came to America thousands and thousands of miles on a boat as a young girl with her mother and siblings and built a new life and a family in a little coal mining town in Pennsylvania. She worked in a factory, became a young widow and lost one of her breasts to cancer. My mom quit decades of alcohol abuse on her own, cold turkey, and possesses an unbelievable drive and strength. She is always everyone else’s rock, including mine. My dad survived an aortic dissection, that statistics show he should not have outlived. He flat-lined during his emergency surgery and slipped into unconsciousness afterwards, and yet he is still on this earth with us cracking jokes and doling out wisdom to his three daughters. That’s what my family does. We carry on. They are survivors, and so am I.

UNC Hospital

Feeling mighty at UNC Hospital after making it through my first PICC line insertion.

***

Let go or be dragged

Bear small

What it feels like sometimes to have a chronic illness.

This blog has always been a place of healing for me. You, dear readers, have contributed to creating this safe sanctuary with your comments and stories, sharing your hearts, your struggles and your fears. Vulnerability breeds vulnerability. But for these past few months, hitting the publish button on WordPress has been a terrifying idea for me. To share what has really been going on in my life comes with risk, mostly the fear that I will invite in pity and that no one would understand.

What has pushed me to finally tell my story here is my frustration over the last few months of the lack of personal stories around chronic illness, particularly young adults living with chronic illness. In other words, stories like mine.

As a lover of non-fiction and memoir, I have listened to, watched and read accounts of people’s chronic illness experiences, mostly about those who are living with and/or survived cancer. I turned to others’ stories of sickness to try to understand mine. I longed to find stories that helped me connect with someone else who might be going through/or have experienced similar challenges. I found some nuggets of comfort in their stories, points of relating, but I have since come to realize that every person’s story is unique, and so is mine, and it is one worth telling.

During this past summer, my health was relatively stable, and I started to feel like I was getting my life back and getting ME back. I was running again for the first time in years and I cannot tell you how good it felt to reclaim that. I felt normal again–hopeful. I ran 4.8 miles in a relay race and signed up for my first 10K. I spent the rest of my summer training for my 10K in September—the 10K that never happened.

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Me over the summer when I was back to running and feeling strong and on top of the world. 

For the past month, my chronic illness has flared because of a virus that I contracted. Over these past few weeks, I’ve been re-experiencing what it’s like to have a chronic illness rob me of big things like my identity and little things like cooking dinner. Anger and frustration have been building inside of me. I feel like I have control over nothing and it scares the hell out of me. While these emotions don’t always feel good, they’re fueling me to feel more empowered in this mess and not be afraid to use my voice to share my story and also advocate for myself in a healthcare system that downright just sucks.

***

Chronic illness can be a lonely journey. Throughout mine, I have often felt that no one could understand what I was experiencing, and so I isolated myself. Beyond my immediate family, only a handful of my close friends know about my illness. I coped by not talking about it. When you say things out loud it feels too real. I no longer want to stay silent.

Over the summer, I finished reading Natalie Goldberg’s latest memoir about her journey with cancer: “Let the Whole Thundering World Come Home.” In the preface, she writes “a writer has a second chance to digest experience.” For me, writing has always helped me make sense of the world, process what feels unexplainable and painful. But for the last nine months or so, I have been so immersed in my health that I no longer had the energy to digest my experience. It was easier to shut down and numb out. All my strength was poured into grad school, doctor’s appointments and medication changes. I fell into my default mode of pushing through. During that time, the pages of my writing notebook and journal sat mostly blank, except for some random entries about doctor’s visits or quotes that moved me. It wasn’t until May that I cracked open my notebook again while lounging on the beach listening to the constant calm of the sea and trying to make sense of the past year. It felt equally freeing and scary to put words to paper and face those difficult emotions.

The thing I wanted to write about, the thing that had become a constant presence in my life since August, I have been most afraid to write about. To write about anything else would have felt false, inauthentic, which is why you haven’t heard much from me in the last year on this blog.

There is a Zen proverb “let go or be dragged.” Writing about my illness has been part of my grieving process and has helped me accept what is and let go of what was. And yet I’m constantly being reminded that the grieving process is never linear, and I find myself these days revisiting the stages of grief that I thought I was done visiting.

Holding on to the past keeps me stuck in my suffering. Writing has always been my therapeutic release. Lately, I have been writing just for me, but now I feel called to share it because I hope my story may help others in their chronic illness journey, but also because selfishly I need to share it for my own healing.

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This is the first picture I took of the regimen of pills I was first prescribed bc I’m weird like that and like to document things. :p This photo was taken in Sept. 2017. Since then, my medication has morphed into four different medications totaling close to 3,000 mg a day. 

Every new diagnosis comes with grief—a loss of health, a loss of normalcy, frustration, anger, fear, anxiety, sadness. Just when my health reaches a period of stability, it seems something else is positioned in the wings, waiting to reveal itself. Chronic illness has the worst timing.

Barely a few weeks into my first year of grad school, I was diagnosed with Mycobacterium avium intracellulare, or MAI, a rare and serious lung infection. MAI is an atypical nontuberculosis germ that lives in the environment. It is not contagious. However, it is difficult to treat because the bacteria is slow-growing and thus it takes longer to eradicate. Treatment is further complicated if the infection has formed in the cavity of the lung, making it difficult for the medicine to reach the infection, and putting a patient at higher risk of permanent lung damage. It is a lifetime disease with a 40 percent reinfection rate, which is a high and sobering statistic. I, unfortunately, contracted the cavitary type. This also means that for the past year, I’ve been on a regimen of nearly 3,000 mg of antibiotics daily—three different oral medications and one inhaled. In addition, I take eight different supplements daily to counteract the effects of my drugs and my disease.

My MAI diagnosis in September 2017 marked my fourth confirmed lung disease at age 37. Living with this disease in addition to three previously diagnosed lung diseases, one of which is in remission, has been an exhausting and tumultuous journey that has turned my life and my family’s life upside down. Having lung disease often feels like having the flu—you lose your appetite, your muscle aches, your body feels weak and tired. And one of the most frustrating parts is that you never know when it’s going to strike, and you have to spend the weekend in bed.

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Nurse Molly at the ready when I am not feeling well. 

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My health history is like a domino effect. Nothing lives in isolation. One disease breeds another disease breeds another disease. Between 2011 and 2017, I had a few periods where my health felt stable. But every day I lived in constant fear that I’d have a flare up or some new and rare illness would surface. That anxiety has never left me.

“You can feel the pain, but suffering is when you want it to be different, when you want to be a horse instead of a donkey, an éclair instead of a slice of bread. Suffering is when you want the pain to stop,” writes Natalie Goldberg in “Old Friend From Far Away,” a beloved book I often find myself returning to. …

I want to be the horse. …

I want to be the éclair. …

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