Saturday, August 21, 2010

The Name

I wrote this poem at the beginning of the year. I'm posting it today in honor of the grand opening of the Whittemore Peterson Institute in Reno, Nevada. (Permission to reprint the following poem is granted by the author if reprinted in full, including copyright line, and linking back to this blog at  If you are not familiar with my journey though "Chronic Fatigue Syndrome," or XMRV- Associated Neuro-Immune Disease, you may want to start here.)

What's In a Name?
Head pounding
Throat burning
Pain radiates up
Into my teeth, into my ears

I'm hot
Wait, I'm freezing
Sweats and fevers
Come and go

Snuggled down in bed
In my softest jammies
Hoping for relief in slumber
Elusive sleep refuses to come

Thoughts wear me down by racing at manic speed
Of an unstoppable bullet train
Or are as muddied as trying to gain a clear view of sea life
While snorkeling in pea soup

The weight of my pajamas brings pain
Agony from every point of contact with the bed
Cozy blankets feel like sandpaper against my skin
Invisible icepicks stab randomly at my body

Where there's no pain
Tingling or numbness instead
Muscles randomly twitch and jump
Sudden weakness and I loose grasp of what I hold

The room whirls
I'm dizzy even lying flat
When I walk haltingly down the hall
I feel for the wall to keep my balance

At least I don't have hives tonight
Something to be thankful for in this moment
They come and go, here nearly as often as not
I'm glad they have not chosen to visit right now

How can I feel ravenously hungry
And nauseous all at the same time?
The thought of food turns my stomach
Yet I crave something to eat, just don't know what

My limbs feel like lead
The weight packing onto my body
Because I cannot tolerate the simplest of exercise
Only compounds my frustration

Movement saps limited reserves
I try to lie still; it works for a moment
Before waves of pain tip the scale
I writhe to keep from crying out

Every breath an effort
Not “pain” exactly, a distinct heaviness
Exhausting to push chest in and out
Would be easier not to inhale

Depressed? Want to die?
Just putting my reality down on paper
Rather than wearing my loved ones out with my complaints

My nemesis has been given many titles:
The belittling “Yuppy Flu”
A pathetically nondescript “Chronic Fatigue Syndrome”
The slightly more accurate mantle of “Chronic Fatigue Immune Dysfunction Syndrome”

And after nearly 20 years of this living nightmare
Finally a name that gives credence to the seriousness of my condition

Who would have thought I would find affirmation
Even relief, in testing positive for a life-altering retrovirus?
It's the validation that brings me gladness
I've been sick all along...

And now IT has a real name

*Since the original writing of this poem, HGRAD, standing for Human Gamma Retrovirus (HGRV) Associated Disease, seems to be the more scientifically correct name, replacing "XAND" as "XMRV" was not originally well named from a technical standpoint, being a clearly human virus, rather than murine (mouse) in nature.

© Copyright, Jennifer Saake, 2010
Dedicated to the researchers at the Whittemore Peterson Institute

Update, February 2011:
This poem has placed in the top 20 in a worldwide poetry contest at


warmheart said...

I loved what you wrote. I would like to share it with our support group on facebook:

If you feel inclined to post it there or give me permission to do so, I would appreciate it.

I beleive your words will resonate with many of our patients.

Jenni / Jennifer Saake a.k.a. InfertilityMom said...

WarmHeart, yes, please feel free to post it as long as you include the copyright line and link back to this page. (I tried to find it on facebook and see several pages coming up as "HUNTER HOPKINS CENTER" so I wasn't sure what page was for your specific group.)

Dena Dyer said...

Jenni, I can relate so much to your struggles are not as severe as yours but the feelings are the same. It's such a roller-coaster. I am very glad you're writing a book about your experiences with illness and pray it helps a ton of people. :)