Maine

Sand Beach, Acadia Park

I spent the last week in Lincolnville, Maine with Brenna and Erin, friends (and old roommates, as you may recall) who I don't see nearly enough. I had a great week; my stomach still aches from laughter, feeling tight from the thousand crunches I definitely did not do.

Erin and Brenna, pre-puke

I ate lobster for most of my meals and supplemented my candy addiction with ice cream every night. I sailed through the Penobscet Bay and made fun of Erin for being seasick until she puked and I laughed so hard I almost did too. (If you've never seen red wine come up on a sailboat, you haven't really lived. Also, never get sick in front of me, as I will laugh and fail to offer any aid.)

I pretended to be Cali Kelly and hiked to the top of Bald Rock Mountain, where the Atlantic lays before you in panoramic views. Views that make you stop and say "Oh, shit."

I jumped into the 50 degree ocean at Sand Beach in Acadia National Park. I used my body as it was meant to be used; hiking, running, jumping and swimming. I felt relaxed and down to earth. We existed in a true vacation mode; our alarms were set, but only for more vacation time.

Bald Rock Mountain, Maine

But still, the pain I feel from this latest lupus flare stuck with me. And because it existed, I had to share these moments with the holes in my mouth, with the sharp pain shooting through my gums. At times, the vacation euphoria I felt was deafened by the pain. The pain was apparent every time I laughed too hard, opened my mouth too wide, or ate. It was there in every bite of lobster I took. 

And it pisses me off.

I hate my body for doing this. For fucking up any plans I had to be happy and carefree and young.

I hate that I have tried, many times, to get over the fact that my body is trying to kill itself from the inside-out. I even hate that that's the definition I have to give to people who wonder what lupus is. "Oh, lupus? It's just my body trying to commit suicide! Ha ha! Insert funny joke here!"

I hate that there is no way to live both ways; there is no way to feel the pain and not feel it too.

I hate that every flare reminds me that I must keep faith in myself, that I must believe in something that will end my pain quickly. I hate that I have found that the Something I believe in is only myself, and my ability to do what I have done a thousand times before.

My trip was wonderful and beautiful and those are the memories I will have. I am lucky to have them. To have the chance to laugh with my friends and see the beauty this world has to offer.


----

On our last day in Maine, we stopped in Portland before heading down the coast.

We joked about getting a tattoo all week. We went through several bad ideas, including my idea of a lobster tattoo to commemorate all the fallen lobsters I ate this week.

Eventually we decided on this. We saw so much beauty this week. We trudged through miles of evergreen trees to see the ocean, bluer than I thought possible.

I also like the strength and endurance of the evergreen. It’s a reminder that I can bear this pain and more.

A reminder that this week, I did just that.

Friday, July 20, or: The Day I Don't Remember

i woke up and i ran at 6:30.

at 8:30, fully recovered from my run, i took the dog and did another mile. i called my dad and asked him to bring me a whole wheat everything bagel on his way over to my mom's.

at 9:30, i texted my cancercamp friend that i had a headache i couldn't shake and that my vision was blurry.

at 1:30 pm, i interviewed a candidate for a job i am filling in chicago.

at 6pm, my dad called me and woke me from a deep sleep, a nap I hadn't planned on taking. "Kel. What are you doing? Why haven't you answered my calls?" I looked at the time and started freaking out. "What's wrong? Where's Mom? What's happening?" I thought it was 6 am. I thought it was the next day.

I have no memory from the hours of 8:30 am until 6pm. They are completely gone to me.

After realizing this, I pieced my day together by looking at text messages and emails sent. I was coherent enough to interview someone well enough that they sent me a thank you. I was coherent enough to text.

But I have no memory, and that scares me and pushes on my rawest of nerves.

I want to be present. To have full consciousness. To be sober and awake.

We figured that the blackout was a result of my body's adrenal system getting used to tapering off prednisone. The painkillers I took last night before sleep did not help the situation either. But I took nothing else. There's no alcohol or narcotics in my body, and haven't been since last night. (There was never any booze.)

I can't explain the fear that gripped me today as I realized I remember nothing. As I iced my head, hoping it would relieve my migraine pain.

Illness is so disorienting. It muddles your mind, captures your sense of self, and obliterates reality. It is in control.

I need to be in control. I will fight for control.

Today, I lost. But my migraine medicine has kicked in and tomorrow I'll be on my way to Maine.

I will win the next round.


- Posted using BlogPress from my iPad

My First Post-Hospitalization Workout: A Horrifying Video Post

WARNING: Images in this video may scare or confuse young children. They may ask "Why is that lady the color of tomatoes? Is she Rudolph?" Images in this video are not intended for those prone to vomiting.

I recorded this video in one take after running for the first time since I got out of the hospital. I've begun my training for our half marathon relay, and it is NOT pretty.

But it is amusing.

Enjoy. And donate!

Love and many thanks,
Kelly "The Tomato" Bergin

P.S. Our training progress can be followed on Tumblr, too!

thank you

have i told you lately that i loved you?

i do.

i love you for donating.
i love you for telling me you were going to donate.
i love you for even thinking of donating.

i love you for donating good thoughts and support and love
because they count
just as much.

--

this year, i am learning gratitude. i am finding it everywhere.

i am humbled by the people i meet these days, by the struggle i see in my friends to be their authentic selves. i am in awe of the ways i feel my life is suddenly cracking wide open, my lungs reaching to catch the wind.

this is gratitude swelling in my chest, bursting out every time i smile or hug my mother or talk to my sister's stomach.

and so i implore you to be grateful. be grateful you can breathe and walk and smell the morning dew as the sun streaks across the sky, bringing light. be grateful for your health, for the ease with which you breathe.

i have hated my body for its failings for a long time. but today, i am grateful for the health i have. i'm grateful for the ways i can stretch, pull and bend it, the ways i can move my body in the ocean and across the sand with two laughing little girls following me, yelling my name.

i'm grateful for fear for taking me as far as i could go and then suddenly letting me free to speak my mind, to be authentic.

i am grateful for having the freedom to look inside myself for a good, long time. i am grateful having learned that when you do this, you gain the ability to connect with others in invaluable ways.

and i am grateful to my friends and family, and for the lessons i learned from my family at First Descents. i am grateful for their strength, from which i borrow daily.

so, thank you. all of you.

thank you for being here.
thank you for being the hand in the dark.
thank you for being my team.

Surviving, Thriving and Surfing, Too.

(Donation link is here, if you don't feel like sifting through my wordy prose: http://teamfd.firstdescents.org/2011/fd/denverrocknroll/dotcom/)

In March of this year, I became a 4 year cancer survivor. In one year, I will reach my 5th year of remission and officially be known as cured. (Ooh, I like the way that sounds...)


Sounds nice, right? Unfortunately, the effects of cancer last much, much longer than that. And coupled with all them other diseases I have, the recovery has been difficult. I've struggled to find the balance between my sick self and my real self. I've tried to meet people who I could connect with, who quite literally understood my pain.

But I never really did. Until a few weeks ago, when I went on a trip with First Descents, an organization for young cancer survivors founded by Brad Ludden.

Their mission statement encapsulates what they do and why they are so awesome, so I shall list it here:

First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

You got chills, right? And FD means it. Our adventure trip was surfing for a week in the Outer Banks of North Carolina. I was anxious and worried I would drown. I was sure that I'd suck. 

Which was sort of true--I surfed, but I did not look good. When I stood up for half a second and started shouting in excitement, I fell face down on my board. 

But we cheered each other on: we were constantly taken by surprise. I won't forget one new friend's face when he declared he'd met his goal to stand on a board. The experience, as well as our shared medical history, bonded us tightly.

And the bond holds. During this past week, when I spent 3 miserable nights in the hospital, I had a roster of people to complain to, to empathize with me, to tell me "Go for the extra push of Dialudid." I'd never had that before; suddenly, I was not alone. I am greeted with such support from family, friends and readers but it's always difficult to explain how I feel. No longer.

Going on First Descents allowed me to see what I was able to do physically and expanded my view on relationships. I forgot about my limitations due to lupus and cancer. I was whole, free, complete.

Because this experience so changed my life, I have decided to train for and run a half marathon relay in September with my fellow FD'er, Meghan. 

Yes, me, whose unofficial Native American name is: She Who Never Runs Unless Body Is On Fire Ow My God My Legs Hurt.

But I am going to run it, and I'm going to do it to support First Descents.

Every survivor deserves this chance I had, this opportunity to see themselves in a new light. Cancer can destroy us, but First Descents is the provider of a new, necessary light . 

Meghan and I, as survivors, still face plenty of physical limitations. But with your support, we know we could really make a difference for FD. If we meet our goal of $3,000 total, more young adults will get to go to camp and have the invaluable experience we had.

Please consider following along as Meghan and I write about our laughable training process (help!) on our blog and tell everyone you know about FD.

Another way to help, aside from emotional support and/or dozens of rosaries said in my knees honor, is through a monetary donation. Say, what you'd spend at Starbucks. Or Costco, if you're so inclined.

Your donation goes directly to FD and helps another young adult embrace their challenges and live a fuller, freer life--even with cancer.

The site to give is here: http://teamfd.firstdescents.org/2011/fd/denverrocknroll/dotcom/

Thanks for your consideration of this worthy cause. And thanks, for your constant support. Illness can be a lonely and sad place, and you guys have pulled me through time and time again just by commenting or tweeting me a hello. So thank you.

And I swear, I'll never ask for money again. Unless your name is Mom, Dad or Grandma.
 

Love and thanks,
Kelly "Dotcom" Bergin

Shit My Roommate Says: A Fun, Interactive Giveaway!

Yesterday, my current roommate was brought in. She's very old, cranky and coughs incessantly. I know the cough isn't her fault but she also hates me and I'm sure some of its' loudness is on purpose.
I am going to list 12 items she may or may not have said to me. Three of these statements are not true.
Leave which ones you believe to be fake in the comments section. Winner gets a set of my fancy free hospital toiletries.

What NOT To Do: Hospital Blogging, 2 Day

Day 2 of the hospital finds me disappointingly not better. I am, however, comforted by all the drugs and the kind faces. My mom works at this hospital and it's been fun, seeing her in her element. It's kind of nice being---

Fuck it, I wanna go home.

But before I do, here's 10 easy steps on how to avoid shame and suspicion at the hospital.

1. In a fit of boredom, try to use medical tape to wax your armpits. It does not work, and you will be forced to call for ice.

2. Pray for a quieter roommate, because then she'll be discharged and you'll be stuck with yet another octogenarian who stares at your boxer briefs in disgust.

3. Try to go to the bathroom while on a hefty dose of Dialudid and Morphine. You will think an attempt to pee in the men's urinal is a fun thing to try, but the embarrassing clean up is no laughing matter.




4. Pull out your own IV because you want to see if you can put it back in, due to your "education" from all those ER episodes. You cannot, and your hand will be forced to be used to feed you, leaving your misshapen claw looking like this.




5. Cry about your lack of bowel moments because "it's keeping the rest of my depression weight on."

6. Text your exes under the influence of pain meds. Messages that read " I wanna funkck summer" will not be construed as the attempted: "I want to have some platonic, well-lit fun this summer!"

7. Don't write a blog and then attempt to check it in the hospital, because you will be forced to see the truth about the illegal, unethical life you live. (Rude.)


8. Play "basketball" by shooting open packs of jello and pudding into a trashcan. The look on the room aides (mother's) face will haunt you as they scrub gelatin and chocolate from the floor.

9. Ask the X-Ray tech if he can see your nipples in an X-ray. He will be insulted. But I'm pretty sure he peeks.



10. Play the Muppets soundtrack on Spotify for a calming reminder of your long-gone childhood. The hot new residents will enter and begin to scribble hasty psych ward transfers just as you are hitting the high notes on "The Rainbow Connection," oblivious to their stares.


Thanks for you continued support of this here illegal blog. Your comments have made my day a little brighter.

Love and other drugs,

Kelly "The Illegal Bergin"

Hospital Bloggin', Per Usual

It's 3:30 on the day after the fourth of July. This is the third year I have been hospitalized on this exact date. (See July archives to check if I'm right!)

I am pumped full of steroids right now and the psychosis that they cause is absolutely terrifying.

As I attempt to sleep, impossibly real images flood my brain. A family member, head cracked and bleeding on the ground. My friends, unaware of the truck barreling towards then. And me, screaming with no words to come out.

In each bizarre pre-sleep dream, I am helpless. I am flailing.

The most common image this drug seems to recall is a time a few years back for a similar issue. My body was splayed out on the hospital bed and I knew I was very ill. The nurses called the doctors in and my body was pushed full of medicines. The needles poked my body without warning. They held my hands back as I flailed.

I was pinned. I was out of control.