A Letter to Friends and Family

Dear Family and Friends,

Happy New Year! Please hold still for a few minutes, while I bore you with why and how you should help a cause near and dear to my heart.

Ever since I became involved with First Descents--wait, what? What's First Descents? Hold onnnnn...

Read this first: 

FIRST DESCENTS (FD) offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle, bike and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. During our programs, adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer.

--

How I Became Involved

I first was told that I must go on an FD trip in the summer of 2011. By January 2012, I'd applied and been accepted to an amazing getaway: five night surf trip in the Outer Banks, where we woke up to a healthy breakfast and morning yoga on the beach. We surfed in an Nor'Easter and rocked out in the car to Call Me Maybe. (You can't judge us; we had cancer.) It was clear from the start that we were an amazingly close group; at the First Descents Gala in Beaver Creek in March of '13, we accepted an award for the best fundraising effort. We sent an entire group of 18 to 39 year olds to camp last sumer.

After you've completed your first challenge, you're invited to a second trip, FD2. You must take on a fundraising effort. There wasn't a limit to what you could raise, but thanks to my friend Hairband forcing me to run a half marathon in Denver with her, we raised over $2500.

Last summer, I was ready for a an even more extreme adventure. I chose to do my FD2 challenge last July white-water kayaking the North Fork river in Montana's National Glacier Park. I can't pretend I didn't want to quit half a dozen times; it was cold, I was sick, and oh, I had a broken arm and collarbone. But at night, as we ate dinner and chatted around the campfire about...BEARS, a conversation from which I may or may not have recovered from, I once again felt at home with these strangers. Strangers who were now my family. My cancer blood, if you will.

After you've participated in FD1 and FD2, you graduate into FDX, a trip that months of training and former trips with FD have prepared you for. You must also raise money for FDX and I believe that this cause is truly worthy. Not only are we giving back to FD, who has given us so much, we are helping to build homes and playgrounds for the destitute families who make up Southern Vietnam.

I fly into Saigon and then we get on a bike for FOUR days and cyle around the country. A COUNTRY THAT DOES NOT LOOK TINY ACCORDING TO GOOGLE MAPS. After we dismount our bikes, the second half of our work begins. We won't just be biking, we'll be building stuff, too! With my own tiny baby hands! Tiny baby hands that can barely hold a drink, let alone a MALLET. 

I think I can do it, and I want to give back. But I need a tiny bit of help. And here's where you guys come in. Because you're so lovely and beautiful and did you get a haircut? No? It's naturally that curly? Gorgeous. 

--

So Why Support FD Out Of All The Other Organizations You Work With? Dammit, Bergin!

Fundraising makes First Descents possible. Not just for me (baby buys her own plane ticket) but for other young adult cancer fighters.

I fundraise for First Descents because unlike any other lupus, cancer or diabetes organizations or support groups, it has absolutely been the best fit for me. It has changed my body and soul. It has saved me. It's given me hope and ownership of my body. It's helped me, with my discombulated head, accept the body that I have always hated and resented.

(Look, I even drew a self-portrait. Double-chin unfortunately included.)

By giving to FD, we are changing the life of a young person affected by cancer. A young adult, who likely doesn't know any other people with cancer his age.

A lot of the reason that FD targets young adults is because young adult cancer patients are quite often overlooked. They are largely without insurance, so by the time they finally go to the doctor for that weird ache, cancer has blossomed. 

And there are few places they can turn to. Sure, there is an abundance of support for women with breast cancer, children with cancer, and the elderly. But there is a shocking lack of support for 18 to 39 year olds, a population with depressing statistics: there's been little increase in survivorship rates. And it's even worse for young men, who suddenly have to face fertility and libido problems at 23 years old.

My cancer peeps are dying young and they are dying quickly. I've lost friends to this wretched disease, and the fact that I will lose more absolutely shreds me. 

While FD will not cure this disease, it will change the fighter for the better. I can say this with absolute certainty that it has worked for me. And I have seen it in fellow campers who have become family to me.

I've set my goal to raise $1500 this year, which will completely cover one cancer camper and their flights to whichever destination they choose.

--

The Challenge Besides The Actual Crazy Ass Challenge:

In preparation for a bike trip around a freakin' country, I will bike indoors, perhaps staring a picture of Brangelina with theirs arms outstreched, waiting for me in Vietnam where we will adopt our son, Wolfgang Jolie-Pitt-Berg (the -in is a bit much, no?). 

I've challenged myself to start doing 30 minutes on the bike a day, as soon as I get out of the hospital. (Yes, I'm writing this from a hospital bed.)

This is a new year, a year for hope, and going to Vietnam is a huge leap of faith for me. It is scary, it is far, and I'm not even sure if they sell Froot Loops there. Also, I'm terrified of large insects and land mines, so there's that.

But I am excited to feel charged up about something, after years of depression and pain. This anticipation and joy has propelled me to vow to overcome the challenges 2014 has already given to me.
--
Where I Say Thank You and Mean It

Thank you for your support. If you donate, please email me your address and I will send you something special for your support. The something special will likely be a #selfie, so you know, you may want to opt-out of that. But donations will come with hugs. I'm allergic to deodorant so, again, at your own risk. Oh! You can lock me in a cage and wave from there.

The link to donate is HERE: http://tfd.firstdescents.org/site/TR?px=1004761&fr_id=1060&pg=personal

Thank you. Thank you so much. For this, sure. But for everything else...there's no amount of smelly hugs that could thank you enough.

All of my love,

Kelly Bergin

Hospitalized Again: What Being Back Means for My Year of Healing

In this oh holy year of healing, I expected setbacks on my attempt to achieve healing. I recognize that it will take baby steps, and not gigantic leaps into suddenly transforming myself into a new, healthy person. This became apparent to me when I was hospitalized just 9 days into Kelly's Year Of Healing (trademark to come.)

Why am I back here for the 3rd time in 3 months? Well, much of this has to do with weaning off steroids, which I did at the start of the year. I was immediately rewarded with a sore throat and mouth sores worse than the ones I encountered at Christmas. 

I have also been feeling very confused and dizzy, not always sure of what movement I was making or what words I was typing. (So if this makese no sense, contact me or a mental health professional.) This was attributed to my low blood sugar. I consider myself self-aware, for better or for worse. So to wake up screaming for my mom and being surely it was 6am in July and I was in a hotel somewhere was odd because really, it was 11pm, I'd just woken from an ill-timed nap, and I was in the apartment I've lived in for a year.

It's absolutely terrifying, this run of diabetes I've had. I'm afraid to go to sleep sometimes because my sugar crashes are so bad that threats of a seizure or worse, a coma, are very real. My numbers also spike so high that my kidneys are in danger of real and permanet damage.

I went to see my lupus doctor yesterday and my limbs and body were so achy that I lay facedown on the table, waiting for him to come in. My face and ears burned. And surprisingly, I had a temperature. I rarely have a fever over 99, so to spike from 99 to 101 to 102 was reason enough for my doctors to want me hospitalized. It's best if I'm back on the steroids (argh) and get antibiotics for an infection, all by IV.

And so I am back here again, in the hospital beds that feel so familiar to me, tethered to a machine pumping me full of incredibly strong and scary drugs, wondering what's next.

I want to get better on my own, without the help of drugs. I want to get better by utilizing nature's cures. I want to travel and seek out the value of Eastern Medicine.

I am expecting too much of myself and I'm losing sight of the goal, which is to feel better.

It's NOT to suddenly become normal like my friends, to suddenly slip into the life I've wanted since I was a terribly sick 12 year old.

I'm hopeful I'll get better, but I cannot change how illness has shaped me, no matter how much kale I eat.

I'll likely be here for another night or two. I'm hoping to read and think and rest, and give my body the replenishment it apparently needs. Next week I'll see my Eastern Medicine Healer Chris in NYC, and along with my Western medicine docs, we will build a plan for a better 2014.

As always, thank you for the love and support.

--

Oh! An essay I wrote about culture in 2013 was published last night on Thought Catalog. I do hope you'll read it here: My Year of Cultural Abstinence. If that doesn't work, just click here: http://thoughtcatalog.com/kelly-bergin/2014/01/my-year-of-cultural-abstinence/

My Resolution Is More Badass Than Your Resolution: A Truth

Happy New Year to all! I don't want you to get excited but this is definitely the most important thing I've ever posted on here so, you know, read it. Thank you. I love you. Thank you for your support over these continued years.

--

My Resolution Is More Badass Than Your Resolution: A Truth

For the first time in my life, I am going to truly, fully and wholly dedicate this year, 2014, to achieving better health. 

This is a plan, a hope and a dream. I intend to completely overhaul every single aspect of who I am, physically and emotionally, in order to achieve health and peace.

I am not ashamed to admit that this absolutely fucking terrifying.

2013 was a terrible year for my physical and emotional health. I know that I am not being overly dramatic when I say that if I continue to let things go the way they've gone, I will not live past 30.

Because I've been ill since I was a baby, disease is a part of my identity. I can't imagine who I would be without it sickness hovering over my life. I am who I am both because and in spite of it.

There is a large part of me that doubts that I can ever truly get better. This doubt has stewed for years. This doubt has been confirmed by many doctors, including the government's own physicians, who deemed me sick enough to receive Social Security disability at 27 years old.

I am tired of hopelesslness.

I have never been ready before. And I am ready now. I just know it. I feel it. This urgency. This desire to live. A desire that was not there before.

Undertaking this journey means making incredible and scary life changes, from dietary to spiritual to the physical. 

For starters, it involves slowly changing my diet from picking at chicken tenders and Froot Loops to eating a diet full of leafy vegetables and wholesome foods. Anyone who knows me is likely laughing right now and it's true I am eating an old Kit-Kat while I write this.

But just as I can assure you that there will be days when I cheat, I can make the promise that I will no longer buy candy. I will no longer eat a donut just because it's there. Sugar is evil and I am one hundred percent addicted to it. But my diabetes is beginning to affect my body in serious and damaging ways, and so I must part with sugar, EVEN THOUGH IT'S DELICIOUS. (I willl miss you, cotton candy. See you at the fair, which will be a cheat day.)

Although so many of you have prayed for me (and I thank you!), I have doubted prayer and positivity for years. But now I will attempt to embrace them. I am not going to run toward any one belief with open arms, but my eyes and ears will be open as I consider the things I've dismissed many times.

And although I'm bummed my diet will have me crying over cookie commercials, I'm excited, because this journey will bring me around the world as I seek out ancient medicine and wellness techniques. 

The first week of March will be spent at a healing and yoga retreat at an ashram in the Caribbean. I would've laughed this idea off a year ago, but I am ready now. It doesn't hurt that it's in the Bahamas. I'll be sleeping in a hut on the beach and eating vegetarian meals three times a day while doing yoga and practicing ayurvedic medicine.

In May, I am going to Vietnam with my cancer friends at First Descents. Here I'lll challenege myself phsyically, by LITERALLY BIKING AROUND THE COUNTRY. On a bike without a motor. Our destination will find us building houses for poor familiies. This is a fundraising trip and you can help (please help!) me raise money here: Dotcom Goes To Vietnam

I plan on trying local medicine and learning about cures in Asia; hopefully I will make it to Cambodia while I'm there. I'm not sure what the second half of 2014 holds, but I'm excited for these opportunities. I am less excited about all the kale.

Of course, I am afraid that I will fail, and that I will still be sick, and that it will be my fault. But I must remember that if I don't try, if I don't seek out what I need to seek out, I will die young. Now I could die young having tried all the cures in the world. I don't think that I'm going to write CURED at the top of this page a year from now. I know people who have tried everything to stay alive and failed. But I haven't ever tried for longer than a month. So this is why it is time. Time to try.

I can guarantee mistakes and the occasional donut along the way. I can guarantee I will doubt myself and others.

But I don't have the luxury of youth like my peers do. I have to find a way to get better, I have to commit, and it has to start now.

I owe to my family. I owe to my niece. I owe it to my friends. But most of all, I owe it to myself.

Thank you all for your support. You can bet your ass I'll be writing about it along the way.

Here's to 2014 and the possibility of wonder and joy. 

(Please help me achieve this goal. Thank you. Link is here.)

THANK YOU ALL.

(Bitch, you about to be changed.)

A Wedding, A Holiday, A Hope

Three days before my sister got married, I was strapped to an IV pole inside a dark room in Jersey Shore Medical University Center. I had contracted a serious infection, and I was oozing with pain, and blood, and morphine. I'm surprised there wasn't a mushroom cloud around my bed; I was barely there, a body shrouded in fog.

Three days later, I hopped on a party bus, killed a Budweiser and watched my sister get married to her best friend. From the front aisle, my mother mouthed me instructions: "Take your glasses off! Pick up her train! Don't look at the baby, she'll want to come to you!"

I smiled anyway. The pain was mostly gone. My sister and my brother in law said their vows, they kissed, they kissed again, people clapped, and a-ha! A marriage was made.

Three days before this, I knew I would make it. I would have signed myself out if I was told to stay in. I mostly felt guilty; after years of planning, it had come down to the week of the wedding, and I'm hospitalized. For the first time in 370 days.

On Halloween, I begged for an early release and it was granted; we put Sadie in her zebra costume and took a walk in the neighborhood. And on November 2nd, we had the party of the year.

It was truly the best night of my life. Everything came together seamlessly: I had a fun date, my friends were there with me, my cousins and family smiled, and we all danced together in one, happy, sweaty pack on the floor. I delivered my speech and people laughed.

And I was so proud of my family, so strong together, so unbreakable. I am proud of my sister, of the woman and mother she has become. And I am grateful for Cliff, for being the man she deserves.

On the night of my sister's wedding, I saw joy and hope and family and...I saw outside of myself.

I saw outside this haze that I've been living in for years. And when I cleared the windows of my bubble, I saw love. I saw family and joy and bad music. I saw hope and happiness.

It felt so real to me, more than any of the misery I've known these past couple of years. 

It felt so possible.

It was astounding, in its strength. In its width. In the sheer enormity that was that feeling, that was that night.

It was perfect.

And I felt renewed. I've looked outside myself and wanted more than what I have. I deserve more. This shelter has too many walls, and I want to break them down.

I just returned from Hawaii, another magical trip, and I'm hoping to make it to Vietnam in May. I am dreaming again, and when I do...

I see it all.

Diabetes Awareness Month: My Story

My diabetes has been uncontrollable all night. I'm writing this with tears hot on my cheek, frustrated and nauseous because my pancreas is just not working, and I don't know what to do.

I've struggled with blood sugar issues for years, but they were always thought to be a side effect of the prednisone I took for my vicious course of lupus (which became unrelenting after my cancer diagnosis.) It wasn't until 2013 that I became insulin-dependent. And it was much to my surprise that stopping prednisone had no effect on stabilizing my blood sugars. It was a temporary sice effect, now known to be permanent.

Two weeks ago, when I was in the hospital, the doctors got a good look at what I deal with on a daily basis. My body, at this time, is responding oddly to the correct dosages of insulin. I am dutiful about taking my long and short acting insulin, but instead of stabilizing me, I'm up and down all day. Because my body is behaving this way, I'm classified as a brittle diabetic, and it's possible I have Type 1, or juvenile diabetes, instead of the more common and less dangerous Type 2.

My ideal blood sugar is between 75-100. When it's over 400 or under 70, a doctor should be called immediately. When it's low, I run the risk of lapsing into a diabetic coma.

Tonight, for example, my sugars have run from 400 to 360 to 199 to 60 to 44. My hands, feet and my head shake when it's low. My vision blurs.

When it's high, I get headaches, mood swings. When it's high or low, my heart slaps against my ribs with anxiety and fear. When it's low, I must immediately ingest sugar.

My body is on a suicide mission, an internal war fought by unwilling cells. I cannot pretend it doesn't threaten my joy, my work, my ability to live and lead. 

I take my blood thee times a day and I give myself countless burning injections. I scream from pain and cry from frustration. I feel impossibly frail and I fear I will fall asleep and not wake up one night. I am relying on my parents more and more.

I am 27. And this is my life with diabetes.

Donations for the fight against diabetes can be found HERE: donations.diabetes.org.

A Funny But Serious Post: Great Title, Kel!

I'm on day 20 of this dizzying sickness. It has been Hell, in the simplest, most humble of terms. And so for the last twenty days, I've lied (laid) (lay) (lie) in my bed, casually fantasizing about the gun emoticon on my phone...to, you know, jump out of my iPhone and take me out. Admittedly this fantasizing was done under the nastiest shards of pain, a shock so bad it confused me into thinking that I don't want this life, not like this.

See, I'd just need one fake bullet. Or two, because it's likely I'd miss and shoot my wall instead, and I've already put a hole in it by bouncing this ball against the plaster for the last oh, sixty or ninety days or so.

This ball's seen me through a lot of hard times. See, I've been down. Low, low, low. Lower than ever before.

I've never been low enough to picture the gun, to squeeze the ball, to embrace the sheer enormity of my physical pain and cry.

I don't cry very often. It's sort of a rule in our family, though not often talked about or discussed. It's kind of like nudity at the breakfast table. You just...don't. Dinner, maybe. But crying? It makes people uncomfortable. It makes me uncomfortable.

It makes me appear vulnerable. Ugh. So gross. So weak. So...mundane. I cry, because I'm not inhuman, but it's usually over commercials where the actors are aging from birth to college graduation in rapid order. Now those! Those are worthy of shedding some tears. Here's a favorite: (This is an audio-visual blog today, folks. Strap in!)

(My god, that kid is cute. Maybe one day I'll make one for Sadie. I definitely have a picture of her from every week.)

Back to the point: I didn't cry much before. And then in August, September, I hit the Wailing Wall of Tears. It was SobFest2013. It was gross. I became addicted to a certain Kleenex brand, like some Target-shopping commoner! I cried giving myself insulin because I didn't want to be diabetic; I cried when my mom said the wrong thing, even when it was benign; I cried when my dad begged me to get it together. I cried over THAT DAMN COMMERCIAL like ten times.

I cried and then I reached the Hole of Desperation and Blackness. Here's where all the Bon Iver and sad Paul Simon came in. I felt this way for awhile. Too long. And it was very, very serious. Serious to picture the gun. 

I considered going inpatient. I considered outpatient, and I still think group therapy is something I may do in the future. (Once I get over the miles-long waiting list of my fellow depressives: raise your hand if you have a favorite antidepressant!) I stopped one medicine and I started on a new medicine and I talked to my doctor and therapist for many, many billable hours. And one day, after a really good session that may or may not have included calling me out on my bullshit, I saw something differently.

My doctor said that she thought that I had PTSD. Post-Traumatic Stress Disorder. A disorder many cancer and chronically ill patients actually suffer from. (The stabbing needles; the time they literally cut my throat open and took my thyroid out while I had nightmares on the table...) 

I had all the symptoms: depression, anxiety, fear, disassociative behavior, lack of interest in anything except Sadie...

I had them all. And the relief flowed through me like it had when I was diagnosed with lupus and told that what I was feeling was real and it was not my fault. It is not my fault. Yes, people have it worse than me (so you've said) but this is my life, and it sucks sometimes. 

I started to talk about it with my cancer camp friends (First Descents, y'all) who had experienced exactly what I was going through and some of whom are still feeling it today. (Soon I'll hit you up for more FD money, but this is why.) They helped me to understand that I didn't have the life I did 2 years ago. And that I don't have the life my friends have today.

And while that may seem defeatist, it's also true. Like, extraordinarily true. I don't! I won't! I will not ever again, no matter how many vitamins I take or doctors I see. I never did. I just faked it until I landed on this sabbatical, licking my wounds and wondering how/why/dammit.

As soon as I started talking to my therapist--like, really talking with words that were honest, and stuff-- I began to feel a smidge better, and with that came purchasing items and Doing Important Stuff: buying a carrier to drag Sadie around the neighborhood, walking the dog, taking my pills, taking a tiny bit of an interest in living till I'm 40 (which I have probably never had an interest in because who wants to be in this much physical pain for that long?)...I got sick again. 

Really sick. Mouth sores in the shape of Very Large Plains States, like Montana and North Dakota. And there were rashes and fevers and two infections and it was all happening now, when my sister is getting married so very soon.

So I retreated. I cried. A lot. And I panicked. I said to my FD friend Hairband, I said, "I am going to ruin this wedding." And she said I wouldn't. And I won't.

See, this story doesn't have a happy ending, because I'm still working on that. I'm still trudging through the last couple of days of this illness, and then I'm gonna man up, get my hair colored and be a terrific (marginally okay) maid of honor for my best friend, my beautiful sister. I'll do the things, I'll get it done.

And I'll keep working toward what we call "radical acceptance." Acceptance that maybe, after 17 months, I still need to be at home, recovering. Acceptance that I made it through the rigorous disability process for a reason: state-mandated doctors determined I needed it to survive. Acceptance that these diseases and this hardship will always be a part of my life, and it will make it so difficult at times, that you won't want to go on.

But for now, I'm grateful I had people to tell me to get help when I needed it. 

And I am dreaming again. Of Kristie's wedding, in 5 days (!). Of a January spent in Los Angeles. Of my trip to Hawaii in December. Of my friends' annual ski trip. An FD reunion in 2014. And Erin's wedding in April (bridesmaid for the fifth time! 22 away from a movie deal, bitch!). And maybe a place in Brooklyn in the spring...

But most importantly:

Watching this love of mine, this heart that beats outside of my chest, go on and on.

Fear. Reality.

 

 

(Super Emo Picture I Took To Demonstrate My Misery, Obviously)

I am submerged in painkillers, but the pain is as clear as ever. I am a mouthful of open wounds; my speech is garbled, heavy with uncertainty. I swallow and inside I scream. 

I rinse my mouth in the bathroom and bang my fists against the walls. I get back into bed and sleep for an hour; I wake and do it all over again.

I try to listen to my meditations but they do nothing to penetrate my reality. I watch The West Wing and remain awake. I swallow another painkiller; I've lost count of how many I've taken today. I should be more careful; I cannot.

I feel like I am drowning; breathing through my mouth is not an option, but my nose is congested, so that each breath I take is shallow. I use nasal spray, decongestants, more often than recommended. I need a minute of relief.

I read my books and websites and forget what's been said a minute later. I rewind my shows and watch again. My attention is blurred. I do not drive on days like this.

I blow off my friends. I apologize but it must get old, right? I am never there when I say I will be. 

My sister gets married in 2 weeks and I'm afraid my sickness will still be present. I'm afraid I won't be able to celebrate her. I'm afraid I'll be tired and lethargic. I am afraid, I am afraid.

I need a break. I want a break.

This is my entire life, and I need more.