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.

New piece on Thought Catalog

The cracks in my ceiling are a mountain range, but I’m not sure which one. The dust above is fog, crawling in to obscure the view of stars, made of smaller cracks in the plaster. The smoke detector is just some random UFO, nothing to worry about, nothing to be alarmed about.

On the days I call myself a writer, I invent stories. And like the world living above my bed, I memorize them, add to them, edit them and invest in them. But the dusty world above me has been my greatest material these days, as I fight anxiety when I long to sleep.

Link here: http://thoughtcatalog.com/2013/waiting-for-a-disability-check-watching-the-cracks-in-my-ceiling-grow/

Morning.

The past two days have been hellish. Travel always wreaks havoc on my body. And the past two nights have been no different. I sedate myself but to no relief. I'm barely conscious, awake enough to know pain.

This morning I drove to the pharmacy at 6am, just as it opened. I am desperate for relief. I am so done with this body, with this pain. But I'll never be tired of my life, and the joy and beauty that sustain me through so many awful days and nights. 

I am too attached to this life and this love to ever give up.

Tough Shit

Maddy told me to show my muscles, so I did.

I am living a full life through the pain.

I am living.

And that's how I earned these muscles.