Hill to the Left of Me, Hill to the Right

There’s a roadside attraction of sorts in Lake Wales, Florida called Spook Hill. You throw your car375668_10151609135427310_82917642_n into neutral at the white line and it rolls uphill on its own. Or what appears to be uphill. I think I remember the whole extended family driving over one time from Bartow where we spent our Christmases. My grandmother probably sent us just to get us all out of the house for a little while so she could breathe. Pretty sure I was unimpressed by the whole rolling backwards uphill thing. I was older than the pic to the right, but I’m going to guess that the face I was making was likely the same.

Today, doc told me I’ve relapsed. Again. What is it now? Four times in three years? Five? I really can’t remember. It’s abundantly clear that my body wants me dead. Unfortunately for my body, it’s dealing with a brain that has zero fucks to give about what the body wants. None. My brain is like the weapon of an apathetic martial artist—nonefucks.

I stole that. Ha.

In March, I went for a second opinion at Shands in Gainesville.  It was an impressive facility and the doctors spent over two hours with my mom and me, going over all my medical history and discussing it in minute details. At the end of the visit, they said my doc has done everything they would have done. My mom asked them point-blank what they would do if they were me. The main doctor said if she kept relapsing on prednisone, she would try another immuno-suppressant. There are more out there that carry their own barrage of side effects, but staying on steroids forever is brutal on the body.

First things first though, get me back into remission. So a pounding of prednisone is what the doctor ordered. Took the first dose of the increased regime tonight. Back to the big guns…bigguns…BIG ‘UNS. My mind so frequently warps to Al Bundy, it’s slightly disturbing. What is that about? This isn’t funny. Thing is, if I can’t laugh about it, I won’t make it through. That’s true for everything that’s difficult for me. I can be upset, angry, and grieve, but eventually I gotta start laughing.

Doc says, “You’ll have all the energy you need now!” Thanks for the random bit of enthusiasm, but it doesn’t suit you. And, yeah, I admit that my stock response to the question of “How are you?” has been “Exhausted.” for the last few years, and I do hate feeling slothy and narcoleptic, but come on. What he really meant was, “Bring on the insomnia!” And I don’t know why I just bought that loaf of fresh bread from the bakery while picking up my pred script. Unless I want to balloon up like Violet Beauregard, carbs need to stay the hell away from my face-hole for the next few months until I’m back in remission.

And then I get to try a new immuno-suppressant. The last one I attempted made me itchy all over and straight-up suicidal, but I’m optimistic about this next one. <—That was another joke. I try to stay away from optimism. It’s how I keep from being disappointed in life. Or is that why I keep my expectations super low? Maybe both.

Fact is, either option is craptastic in its own way. Quality over quantity. Quality over quantity. Quality over quantity. If I say it enough, it’ll make it okay, right?

At the end of the driveway this evening with the dogs leashed and ready to go, I looked left, I looked right, and I realized I live in a valley. Whichever way I go, it’ll be uphill. I can put my drive into neutral and hope the roll happens on it’s own, bringing with it the optical illusion of fun, but I’ll still be going uphill.

 

Faces of accepting yet another relapse:

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Dark and Dog-tired, Take Two

I’m still up in the air with my feelings about Facebook’s “On this day…” feature. Some days it causes a baritone belly laugh and others it brings forth a saltwater flood from my eyeballs. It has reminded my hermit self of events I had forgotten about attending, and it’s brought back words spoken that had been pushed out of my mind.

But today, today… . Today, that bastard feature showed me a blog post of a poem I wrote last year when I had once again relapsed. It was titled Dark and Dog-tiredReading over it again today took me back to that drive to the mountains—my place for recovery of all kinds. The poem was unedited when I posted (too full of emotion to care), but finding it again, I will definitely be working it over and over until it’s in better shape.

Not only was I reminded of this forgotten poem dealing with relapse, but another poetic influence may have been my savior today. Earlier this year, a dear friend sent me the memoir The Best Day, the Worst Day, written by Donald Hall about his marriage to Jane Kenyon. Two writers/poets and their difficult path traveled together through the fury of cancer. It is an absolutely devastating but beautiful story of love. I’m not a huge fan of his poetry, but his words in this memoir…oh, my. Theirs was a love that, I am not ashamed to say, I envy.

I may have connected with the story a bit more than I normally would have because of some of the drugs she had to take being the same ones I have also been on and off and on again over the last three years. His descriptions of her levels of pain and the side effects were spot on—things I have never been able to express to friends and family. The rage. The moonface. The depression. The joint pain that you lie about and say is a 6 when really it’s closer to a 12 on a scale from one to ten. The hair that embarrassingly covers your entire body, including your cheeks and chin. The clumps that fall from your head.

And the one that rang out in my mind recently and wouldn’t leave—the rash. A few days ago, it broke out across my chest and collarbones and felt like thousands of tiny bonfires raging under my skin. At first I thought allergies, but my brain said, Pay more attention! Remember, woman! And I did. I remembered Hall’s description of Kenyon’s cyclosporine rashes and how they’d have to rush her to the emergency room, so I called my doctor. His words were, “Stop taking it IMMEDIATELY.” Those are scary words to hear about a drug that is keeping me in remission.

What if there is already too much in my system? What if I called too late? What if stopping now isn’t soon enough? What if stopping now makes me relapse?

I can’t go through all this again.

I can. And I will if that’s what comes. Every time I feel like we’re getting a leg up on this syndrome, another hurdle is thrown on the track and the reasons to keep me jumping are already dwindling—dark. And I’m exhausted—dog-tired.

So I’m going to focus on the fact that poetry got me through this day a year ago and it helped save me today. Instead of worrying about what is next, I will work with my words and lines and keep leaping.

Wordless Wednesday (almost): It’s not Just a Smile

2016 has bent the universe over and is taking us all on a rough ride. I decided with all the crud going on, when small moments of good happen, I will blow them up into much bigger deals than they really are to make up for all the bad.

So…

My doctor smiled today. Doesn’t sound like much, eh? Well, this is my notoriously emotionless (which is why I have a crush on him) kidney specialist who for three years has been straight forward about what was going on, how we would treat it, and was pleased, in his quiet way, the times the treatments worked. Seriously, though, his emotional control is goal worthy for me. But today? Today, he let go. I guess he was so pleased with my most recent lab results, he couldn’t keep his usual slightly caring but mostly blank face straight. He exclaimed that my labs were good, not just good, excellent. They are not just normal, like a person without any medical conditions at all, but even better than average.

And that is all awesome news, but he smiled and he kept smiling until we left the room heading our separate ways. So I’ll take it. I’ll take that moment and make it into something much bigger than a good report and a grin from doc. I’m going to let it erase some of the recent bad stuff and also let it carry me into the unknown days ahead.

The picture for today is of zinnias from my garden. Because smiles.

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A Conversation with the Neighbor

His name is Victor and he’s ageless. Well, neither of my parents seem to know exactly how old he is, only that he’s retired from military service and work as a physiologist. Victor is their neighbor in the mountains and the day my mom introduced us he was working on building a car engine, wearing what appeared to be a cut off shirt sleeve on his head to hold back his shoulder length, mousey hair, and some sort of mock prison jumpsuit with a penitentiary name on the back that I can’t remember now, but he laughed with a boyish snicker as he turned to show it to us. I could see why people were unsure of his exact age.

He’s what I imagine my brother might be like when he gets older. They can both talk about anything and seem to know a lot about many different things, but you’re not quite sure how much to believe. Obviously very intelligent with the tendency for hyper-focus. At the beginning of the new year, my mom mentioned that she liked the look of the yellow FJ Cruiser–it reminded her of Costa Rica for whatever reason. Being a lover of all things car, Victor pounced on the opportunity to do the research and find her one. By February, there was a yellow FJ Cruiser in my parents’ driveway. He’s that guy.

After cursory introductions, Victor wasted no time in asking about my health. My mom had apparently mentioned my condition and being that he’s a retired physiologist that still spends time working with doctors and students doing cardiac research at a nearby med school, he wanted all the details of my syndrome.

I’m on vacation, Victor.

I’m okay. I’m good with not knowing too much. I’ve purposely avoided Google for the past three years because I don’t want to become so focused on this that I lose sight of the beauty in small moments of daily life. This syndrome doesn’t define me and I refuse to allow it to even try.

My mom, on the other hand, has done all the research and still can’t understand it. Hell, I’ve even confused my specialist on numerous occasions. So when Victor asked exactly what I had, the flood gates opened.

She has Nephrotic Syndrome.

Oh, god. That’s not good at all.

In my research, I found that it mostly happens to kids. Boys.

Leave it to me to end up with something that typically affects the exact opposite of myself.

Yes. What do they have her on?

Prednisone.

Did she puff up to look like a Chinese girl?

The first time she got moon face pretty badly. This is the third time she’s had to do a course of it in three years.

That’s not good. Prednisone is terrible on the system.

Hi. I’m right here. I’m standing right between you two witnessing this volley of words like a mute ref at a tennis match. I don’t need a reminder that Prednisone is hard on the body. I live with the effects every day. Hello? Is this thing on?

What was the trigger?

We don’t know. They tested her for all hereditary triggers and she doesn’t have any of those.

So it’s metabolic.

Don’t know. They even did a kidney biopsy and couldn’t find an exact cause.

Well, if it’s not one, it’s the other, so it’s likely metabolic.

Am I here? Do we only exist because others believe us to be real? Does that mean in this moment they don’t believe in me? Am I already gone?

So you’re acidic.

What? I’m over here not existing, so I’m a bit caught off guard with the sudden question directed at me.

Your doctor is treating the symptoms, not the problem.

Okay.

Do your hips hurt?

No.

Just your hands and elbows?

How did you know that?

That’s good. That’s a good thing.

I’m confused as to how any chronic pain is a good thing.

Any sight problems?

Not that I can tell.

Good. How about your hair and nails?

My hair thinned out pretty badly after the first round of steroids, but came back and has stayed thicker than it was before. And my hair dresser says it is quite healthy, so I think I’m all good there.

No laughter. Everyone is suddenly so serious. I hold my hand up to look at my nails myself and he grabs my hand while asking if he can look. Don’t touch me. Why do you think you can touch me? We just met six and half minutes ago. Yes, I’m counting, but my memory is bad and I’m no good with numbers. I don’t like to be touched.

How about her thyroid? Did they check that?

I’m not sure, but I think they did.

I’m invisible again. All I can do is stand here and listen to every single word bounce back and forth and let the heft of them sink in too deep.

We need labs for her T1, T2, T3, T4, and D levels. They tested for Lupus?

Yes, I was so worried it would be Lupus. No diabetes, hepatitis, or HIV either.

Imagine having to tell your mom you had HIV!

What the hell is that supposed to mean and why are they chuckling? I find none of this humorous. In fact, I’m starting to regress to the days before all this when I would faint at any mention of something possibly being wrong with my health. I was well-known at doctor’s offices for having to lay down before they started going over results. Back then, nothing was ever wrong.

I’m seeing small dots of light filtering across my vision. The edges of this scene are getting dark and closing in. I refuse. I will not faint because of this. I’m stronger than this. I don’t feel faint. I don’t feel the staring as I yawn to regulate my breathing and mess with my shirt sleeve to distract my brain. I don’t feel my mom touch my shoulder lightly, letting me know she’s there.

I don’t feel a goddamn thing.

It was time we all walk away. He tells us to get him my records and he’ll pass them on to the doctors he works with. “We’ll put some research students on it. They love complicated cases.” Am I complicated? I always thought I was just Jenn.

Back at the house, I head straight to my room and flatten myself on the floor, looking up at the popcorn ceiling through salt water filled wells. Ruby Joon is all butt wiggles, tail wags, and love nuzzles. She knows when momma has the feels.

My parents are in the living room. From under the door, I hear my dad turn down the television. I hear my mom start to whisper something to him. I hear random words. “Victor said…” “metabolic” “more tests” “research students”. They’re whispering about me.

What hides in parents’ whispers? Fear.

But I’m here. I’m right the fuck here. This thing you whisper about isn’t me. It will never be me. I’m right here in the next room. Come and talk to me. I’m strong enough.

I’m your 38 year old daughter, not a child.

I’m your daughter, no longer a child.

I’m your daughter child.

I’m your child.

I’m yours.

Believe in me, dammit. I want to keep existing.