the health diaries: the seven dwarfs of feelings

Today, in The Health Diaries, I am sharing the seventh installment in my series about learning that I have common variable immunodeficiency, also known as CVID. The series details the unfolding of this health news and its implications, as detailed on my Facebook page during and after diagnosis.

In this excerpt, I shift into confessional mode. I also come to the realization that hummus is my food soul mate.

I will follow up with additional posts, roughly once or twice a week, until my story is told. I am laying everything out here because I believe it will be of value to others with rare diseases, as well as their loved ones.

My only changes to the original material will be the insertion of redactions to conceal private or otherwise sensitive material. I am also redacting expletives so I don’t sully my site with such language.

The other installments in the series can be found here.

A friend sent me this. It’s about how not to say the wrong thing to someone who’s at the middle of a xxxxstorm. Basically, the person in the middle get to say whatever they want.

::

Today’s research focus: Finding some loophole that will unearth the fact that my immunodeficiency is somehow transient, or that the diagnosis is just a big mistake. I know this is misguided and unproductive. I get that. But it’s what I am doing, the way you might reach for a block of cheese to gnaw on even though you know it’s full of saturated fat (and harmful to animals).

::

I’m so happy my first boyfriend associated sexual freedom in women with being a whore. If I hadn’t adopted his sex-shaming attitudes, I might have exposed myself to a lot more than I bargained for. (And by that, I mean STDs.)

::

I tried to explain to my therapist that I am not this feeling or that feeling or that feeling. I am all the feelings all at once. For example, right now I am enlightened, desperate, attached, bored, anxious, happy and content. I am the Seven Dwarfs of feelings.

::

One time, I went to hug my friend’s husband. Things got awkward when he turned around right as I was going in. I’d built up a bunch of momentum, so I couldn’t put the brakes on what my body was doing. I ended up hugging him from behind, my hands on his man boobs and his xxx in my crotch. My friendship with the woman ended shortly thereafter. The episode haunts me to this day. His breasts and his xxx cheeks were like four loaves of warm dough.

::

Some things are better left in the past, and that includes pretty much everything that has passed.

::

The people with the guns aren’t always the most dangerous people in the world.

::

I go to a therapist, so I know what I am supposed to do. I am just not doing it.

::

My best friend in the world still hasn’t spoken to me since I told him about my diagnosis.

::

I can tell someone is praying for me.

::

I feel like a dirty little rat forcing my way through clogged drainpipes.

::

One of my biggest fears about dying — which I am not saying is happening tomorrow by any means, so just work with me here — is that all the xxxhats who told me to go to hell years ago will come crawling out of the woodwork to offer backhanded eulogies.

::

I want to stop thinking about the people who made my life difficult and start thinking about the ones who made it easy.

::

People who have immunodeficiency do not know how to design attractive blogs. I am just saying.

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When a lot of people follow someone and call them a spiritual leader, question that.

::

Imagined Letter to My Best Friend in the World —

Remember that, right now, a day to you seems like a week to me. An hour to you seems like a day to me. A minute to you seems like an hour to me. If you are my friend, don’t let days pass without checking in. Check in. Say hi. Tell me you are there. Space feels like silence. And silence feels like a terrifying void. And a void is something to fall into. Voids consume.

::

I will be the one who decides who can eulogize me. I’m going all Oprah in that regard: YOU get a eulogy, and YOU get a eulogy, and YOU get a eulogy, and YOU get a eulogy!

::

When I was in high school and college, I kept a list of who was allowed to come to my funeral. One of my friends told me she found that disturbing. I took her off the list.

::

I will accept any pot brownies that make their way to my doorstep. I am kidding. (I am serious.)

::

In this moment, I feel good. My dog also feels good. This makes us happy.

::

I’m trying to convince myself that I could have one of two less severe forms of primary immunodeficiency — specific antibody deficiency or immunoglobulin subclass deficiency — as opposed to common variable immunodeficiency, but I don’t think that’s going to be the case. My money’s on CVID, and it’s a bet I want to lose. Also, I am eating edamame hummus, and it’s really good. My taste buds and sense of smell have stopped freaking out.

::

Compassion takes over where understanding leaves off.

::

I am not a writer. I am a transcriptionist for my mental activity.

american life in poetry: this morning i could do a thousand things

by Ted Kooser, U.S. Poet Laureate, 2004-2006

I was born in April and have never agreed with T.S. Eliot that it is “the cruellest month.” Why would I want to have been born from that? Here’s Robert Hedin, who lives in Minnesota, showing us what April can be like once Eliot is swept aside.


This Morning I Could Do
A Thousand Things

I could fix the leaky pipe
Under the sink, or wander over
And bother Jerry who’s lost
In the bog of his crankcase.
I could drive the half-mile down
To the local mall and browse
Through the bright stables
Of mowers, or maybe catch
The power-walkers puffing away
On their last laps. I could clean
The garage, weed the garden,
Or get out the shears and
Prune the rose bushes back.
Yes, a thousand things
This beautiful April morning.
But I’ve decided to just lie
Here in this old hammock,
Rocking like a lazy metronome,
And wait for the day lilies
To open. The sun is barely
Over the trees, and already
The sprinklers are out,
Raining their immaculate
Bands of light over the lawns.

 


American Life in Poetry is made possible by The Poetry Foundation (www.poetryfoundation.org), publisher of Poetry magazine. It is also supported by the Department of English at the University of Nebraska-Lincoln. Poem copyright © 2013 by Robert Hedin from his most recent book of poems, Poems Prose Poems, Red Dragonfly Press, 2013. Poem reprinted by permission of Robert Hedin and the publisher. Introduction copyright © 2014 by The Poetry Foundation. The introduction’s author, Ted Kooser, served as United States Poet Laureate Consultant in Poetry to the Library of Congress from 2004-2006. We do not accept unsolicited manuscripts.

no sea here: walking the lines

I wrote this poem in Walla Walla, Washington, after reading a poem by one of my favorite poets, Stephan Torre. This is another poem that contains lines which haunt me now. I can’t believe I wrote it years ago, before I was aware I had primary immunodeficiency.


Walking the Lines
— after Stephan Torre
 

Outside, no moon. Only the light of a neighbors’ window.
The couple inside moving through the kitchen
……………………………………like shadows, throwing darkness
our way. Slips of paper cover our bare panes, make room

for privacy. Grief rose again today, everything
I’ve ever written went cold. Maybe it’s the chill
in the air, the sky thick as ruminating thoughts.

Maybe it’s the pain of putting a life in words,
……………………………………a life so long near death.
Doing nothing and knowing it. Not being of use.
Maybe all or any of this. Now only the keyboard

in front of me has a shape; and I’ve already
……………………………………reached for it. Night stitches itself
to the walls of our home, and the darkness
is like a language. A simple and open language
that we must learn, again and again, to hear.

 


“Walking the Lines” is a poem from my collection No Sea Here, which I am serializing here at This Life, Designed. I will share a new poem from the collection most Wednesdays and Fridays. All original work on my site is protected by copyright. If you would like to use or adapt a piece, please contact me for permission.

the health diaries: to perceive is to be delusional

Today, in The Health Diaries, I am sharing the sixth installment in my series about learning that I have common variable immunodeficiency, also known as CVID. The series details the unfolding of this health news and its implications, as detailed on my Facebook page during and after diagnosis.

In this excerpt, I am still dealing with an adverse reaction to several medicines prescribed to help with my breathing problems. In my own way, I also seem to be coming to terms with the diagnosis of CVID.

I will follow up with additional posts, roughly once or twice a week, until my story is told. I am laying everything out here because I believe it will be of value to others with rare diseases, as well as their loved ones.

My only changes to the original material will be the insertion of redactions to conceal private or otherwise sensitive material. I am also redacting expletives so I don’t sully my site with such language.

The other installments in the series can be found here.

I need to go downstairs, but that’s like a day trip.

::

My status updates are more interesting than your status updates.

::

I don’t even want to be funny right now, but xxxx! I am funny.

::

The xxxxs I do not give about the sun outside my window.

::

I am home alone. Just me. Here alone. All day. What could go wrong?

::

Still have blurred vision. I am Milton and these status updates are my Paradise Lost.

::

To perceive is to be delusional. This must be true because I had the thought while I was in the bathroom, which is where all true thoughts arise.

::

The more ridiculous language becomes, the more truth it contains.

::

Oh good. My doctor with the spa hours is open now.

::

Eternity: the time it takes for the phone app you accidentally opened to close and the one you intended to launch to open.

::

I made it downstairs. It’s like I’m on vacation.

::

“Whether chronic pain, frequent unexplained illnesses, trouble with motor-coordination, sick-days from work, and beyond … every pre-diagnosed rare disease patient remembers the doubts of others. Perhaps it’s all just in your head?” Read the full story here.

::

One time I promised God I would never xxxxxxxxxx again if he would give me my period. I got my period right after I made the promise but didn’t stop xxxxxxxxxing. That is clearly why all of this is happening to me now.

::

My xxxxxx’s uterus was blown out when I attached to it. She’d had an ectopic pregnancy years before I was born and was told the damage was so extensive that it had rendered her infertile. But I insisted. I had to have my way.

::

The most annoying thing about Buddhism is all the bowing.

::

The immunologist called. My hepatitis and HIV tests were all negative.

::

I walked past a window and the sun hit my back and it felt so good that now I am sorry I ever told it I did not give a xxxx about it.

::

I made a list of all the people who have wished me dead.

::

Yesterday felt unreal, like a plastic bag blowing in the wind but never landing because current after current keeps lifting it. Today feels real. I can touch this desk and say: “Yes. I am touching this desk.” I am aware of gravity and the solidity of material objects. My body has legs and arms that I can feel. It’s not like those dreams where I float away toward the nearest window, but the window won’t open.

::

It’s really amazing that all these years anything could have killed me, but didn’t.

::

Last night, my husband held me in bed while he told me the details of my diagnosis. I needed to hear the words in his voice in order to come to terms with the fact that this is real. How many times must we lie together like that, disease terminology the sweet nothings that pass our lips, tethering us to each other and to the larger world?

no sea here: field notes

I wrote this poem while living in Walla Walla, Washington.


Field Notes

When the brown cattle stand close together
they look like rolling hills. Their earthen skins
capture and release the fire of a new day.
That they are land is illusion. That they were
placed here to show me the light, to impart
a sense of destiny, also illusion. How great
the urge to hoist myself onto their wide heads,
their strong backs, how great the urge to step
from one to the next as if they were a rugged
path that I, and only I, might claim as mine.

 


“Field Notes” is a poem from my collection No Sea Here, which I am serializing here at This Life, Designed. I will share a new poem from the collection most Wednesdays and Fridays. All original work on my site is protected by copyright. If you would like to use or adapt a piece, please contact me for permission.