30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The invisible illness I live with is:  ankylosing spondylitis (AS)

2. I was diagnosed with it in the year:  2012

3. But I had symptoms since:  2005

4. The biggest adjustment I’ve had to make is:  Not being able to hike, cycle, run, garden--be active in all the ways I used to be.  And I’ve been unable to work for the past year and a half.  

5. Most people assume:  That I’m really not that sick because “you look good!”

6. The hardest part about mornings are:  EVERYTHING.  I’m so stiff in the mornings it’s generally pretty hard for me to move.  And no matter how much sleep I get, I’m always tired.  After showering, getting dressed, cleaning the cat box and feeding the cats....I’m usually exhausted and often need to lay down for a half hour or hour before the next round begins.  This has gotten better since starting Remicade, and I am steadily improving despite the peskiness of anemia which my doctor is trying to uncover the cause of.

7. My favorite medical TV show is:  I confess to a Grey’s Anatomy guilty obsession, but other than that I don’t watch medical shows.  

8. A gadget I couldn’t live without is:  my MacBook....it has music and photos and poems which feed my spirit and soul

9. The hardest part about nights are:  Being exhausted and not able to sleep.  The night sweats...waking up drenched (and shivering) and having to change clothes and grab some other blankets to sleep on top of the other bedding.  Not being able to breathe courtesy of the costochondritis, so having to be propped up.  The fire of swollen achilles that hurt even when they are touched by thin bed sheets.  Not being able to get comfortable enough, period.  Being alone.

10. Each day I take:  too damn many pills & vitamins. (No comments, please)

11. Regarding alternative treatments:  I’m currently reading about alternative treatments and experimenting with diet changes.

12. If I had to choose between an invisible illness or visible I would choose:  Neither.  Being sick isn’t fun whether the illness is visible or invisible.

13. Regarding working and career:  I’m in the process of reinvention, and start grad school in September.  It’s hard starting over at this age, but I’m determined to live a life with Purpose and help others along the way.

14. People would be surprised to know:  How physically ugly I feel every day.  

15. The hardest thing to accept about my new reality has been:  That the AS will be with me forever.  Even if I go into remission, the damage is permanent.  And I will have to make constant readjustments throughout my life.  My old life...the active fitness warrior life I had may be lost forever.

16. Something I never thought I could do with my illness that I did was:  thrive.

17. The commercials about my illness:  There are no commercials about AS.  In fact, most people have not heard of it despite how common it is.  "Anka-WHAT!?"  Find out more here....

Spondylitis Association of America

18. Something I really miss doing since I was diagnosed is:  cycling and vigorous mountain hiking and trail running....and just being able to go go go!

19. It was really hard to have to give up:  the gardening and landscaping

20. A new hobby I have taken up since my diagnosis is:  I just continue to work even more deeply with what I have always loved....writing, art, music, books....

21. If I could have one day of feeling normal again I would:  run and bike and hike everywhere

22. My illness has taught me:  who my true friends are

23. Want to know a secret? One thing people say that gets under my skin is:  are you feeling better today?

24. But I love it when people:  listen.

25. My favorite motto, scripture, quote that gets me through tough times is:  "I am the master of my fate;  I am the captain of my soul"

26. When someone is diagnosed I’d like to tell them:  it’s not the end....be your own best advocate...you can live and thrive 

27. Something that has surprised me about living with an illness is:  the assumptions people make

28. The nicest thing someone did for me when I wasn’t feeling well was:  just let me be....no chiming in with platitudes

29. I’m involved with making invisible illnesses visible because:  sharing one’s story is one of the best ways to effect change

30. The fact that you read this list makes me feel:  hopeful that advocacy efforts around invisible illnesses will succeed

Heart Art

[ This is the first piece of art...painting...that I have attempted in years.  Perhaps the digital is the next step...the step I have been searching for. ]

I was thinking of the following bits from Neruda as this piece took shape:

{As if you were on fire from within
the moon lives in the lining of your skin.

She's a mess of gorgeous chaos, and you can
see it in her eyes.}

"What She Does"

--paint, marker, tape  ----> photographed, cropped 2x, then  3 images superimposed with varying degrees of opacity

*you can click on the image for a larger view

 ANMillios  7/28/2014

Narrative Inquiry and Reconstruction

How does one construct a true story out of fragments?  Arrive at the truth or some version of the truth with scant details that may themselves be fiction(s)?  

With no one to ask...in the face of a person, people unwilling to talk?

In the absence of witnesses?

Is truth even possible?

Do creative--yet informed imaginings--have any value?

{ The journey from Worms to Cologne 

is covered with stumbling stones. 

There's an archive in the ground. 

I have heard of a prison and have held 

the court document with his last known address 

for a house in front of his house. 

"Watching the long faces riding this run down track 

And the lost places from a dream that never brings them 

back"* 

I may never find my grandfather.   

The truth.  

Why my heart beats the way it does. }

*Linda Ronstadt, "The Blue Train"

"What if our memories, our dreams, and our secrets are all part of one story, living just underground, just beneath the surface, waiting to grow, like the aspens, into beautiful forests, gleaming with many golden leaves of story?  What if our secrets push themselves up into the light?  And what if...maybe...just maybe...a secret shouldn't be a secret any more?"  Poulos, Accidental Ethnography:  An Inquiry Into Family Secrecy, p. 42

Hampstead Skin ( Ladies Only )

I walked out of Paul's in Hampstead with one chocolate croissant and one buttery, flaky pillow filled with custard and topped with apricots swimming in a sweet glaze.  Ten minutes down an alley and quiet street brought me to the Heath clutching my steaming latte.  I followed a dog walker and his four charges down a wooded path that opened to the sky and a breakfast bench at the edge of an unmowed field.  I ate and drank to the never-ending clink of dog tags and birdsong, glancing at the map in my guidebook.

My mission was to find the ladies' pond and pay the 2GBP for a swim.  Months previous I had read a blog entry by a woman who chronicled the Heath's history of 'wild swimming' as well as her own wild swim, and I became mad with want for a water adventure of my own.

A venerable British tradition, 'wild swimming' happens year-round, through ice and falling leaves.  There are three paddling ponds in all--women's, men's, and one mixed-sex commingler.  A river flows underneath the former clay pits, refreshing and ensuring a celsius that seeks out all the body's weak points.  There are no spots to dangle one's feet over the edge.  There is no time to gradually descend the dock ladder.  There is always someone waiting her turn.  Best to just stomp down those metal steps, hold your breath, and jump when you reach thigh level, trying your best to stifle the scream of shock.  

It was not the anticipation of slipping beneath the liquid cold that was so worrisome to me, however, but the other women....and me, my womanliness, or lack thereof.  

It started as I lifted up the rope and swung the gate open.  Just what would I see walking down the path?  When I came to the end of it?  What kind(s) of women would I encounter?  What sort of norms would I be swimming in?   Most important:  a tiny sigh of relief as THANK GOD I bought a pair of board shorts to go over my one piece before I got on the plane.

Gloria Steinem writes that "For women…bras, panties, bathing suits, and other stereotypical gear are visual reminders of a commercial, idealised feminine image that our real and diverse bodies can't possibly fit."  I was struggling, nervous, as I slowly walked down the wooded path.  Because I remembered that moment in my girlhood when I first became ashamed to wear just a bathing suit.  Mine was a shimmering pastel rainbow one-piece.  My head danced with tight, shiny, black curls.  And I was running beneath the sprinkler with two younger neighborhood kids.  When I looked down at myself after stubbing my toe I saw legs.  Long legs.  Dark brown lanky legs.  The beginning of breasts and curving hips.  And I choked of embarrassment.  I felt more naked in that pastel rainbow than I did at the doctor's office.  I was only 11, but like every other girl approaching puberty I had not escaped TV and magazines.

As I approached the swimming pond that 11 year-old girl walked with me, joining forces with the adult Amy struggling with the ugliness and frustrations of chronic illness.

Prednisone has been an unfortunate fixture for two years since I was diagnosed with a form of autoimmune arthritis, and I had no idea just what it would do to my body until IT started to happen. Fat has collected around my hips.  My cheeks have puffed out like a chipmunk.  One morning I woke up with two chins.  "Where the hell did my neck go?" my brown eyes demanded of the bathroom mirror.   And while the cheap but potent steroid has been the one medication up until now that has kept me walking and somewhat functional, it's also seen fit to grow additional facial and body hair that no woman should have.  Paradoxically, I have shaved my head more than once to cope with how the methotrexate (a chemotherapy med at high doses) and the Remicade (a biological made from mouse proteins) thin the hair on my head.  The two work together, you see.  The methotrexate suppresses my immune system in order to prevent me from making antibodies to the Remicade, which is used to halt the progression of the arthritis and prevent any further damage.  But it just doesn't seem right that I should be growing an abundance of hair in some places while losing it in others.  It's freakish to have bushy eyebrows with a nearly bald head, overly hairy arms, and two stubborn chin whiskers.  Tack on the skinny thigh flab from lack of exercise, the hot flashes, and circular brown patches around my neck and upper chest that itch and grow darker as the temperature and humidity rises (it's a kind of rash common to folks who are immunosuppressed), and WOW.....I feel like a super special kind of sexy!

What in the hell was I doing walking down a path to an all female swimming hole?  How could I possibly show myself there when I couldn't even do it at the lake back home?  As I stated earlier, I wanted an adventure.  But I also wanted to be washed clean.  I wanted to jump into that frigid water and emerge having left the unsightly rash, body hair, and the whiskers behind.  I wanted to watch that pastel rainbow float away and disappear among the reeds at the far end of the pond.

What eventually happened might have had something to do with the water, but as I stepped up onto the deck and walked to the lifeguard office to pay for my swim, I looked around me and saw a small world where, as Steinem further states "each individual woman's body demands to be accepted on its own terms."  It was a haven, free from magazines and TV and all the things women are told they need to be and ways they need to look.

I took note of a sign that asked visitors to refrain from cell phone usage out of respect to others, and to maintain the tranquility of the hallowed space.  There were at least six women on duty at the time, and it was a tall butch blond who had thrown on a t-shirt and shorts over her wet suit that answered my unasked question.  "We don't touch the money here.  Let me show you where you can pay."  She led me to a black wrought iron box on a post and I dropped the 2 pound coin through the slot.  Then she smiled and left me alone with my nervousness.

For ten minutes I sat on a bench that looked out towards the water, fiddling with my backpack; applying chapstick and disrespectfully checking my cell phone (though volume off of course).  Then I found my courage and mumbled out loud "What the FUCK!", removing my shirt and shoes.  I felt absolutely naked beneath the sun.  My swimsuit had grown too small in three seasons--skin bulged around the shoulder straps and hip fat hung over the open waistline in back.  I was mortified by this reveal, but also grateful for the board shorts that concealed my thighs and backside, and the blue bandana on my head that simply made me look sporty.  

There was a 50ish brunette with a ponytail in a bikini on the ladder.  She asked me if I was in a hurry to get in and I said "Oh no, I'm going to put this off as long as I can" to which we both laughed.  Judging by her accent I believe she was French, and before I could make more conversation she dove in, resurfacing with a gasp and informing me just "how GD cold it is!"  The shock of the cold settled in around my ankles as I stepped onto the ladder, and two chatty women approached to take their dips leaving me with no choice but to jump the rest of the way.  I wanted to scream.  My entire body ached.  My inflamed ribcage struggled to let air in.  It was awful, and yet..... I felt my cheeks and eyes grow into a smile.  It was a moment.  I wasn't in the water for very long, but somehow I felt like I had gained back a tiny piece of my once athletic self that had been all but destroyed.   My arms and legs paddled and kicked.  My body was moving again.  It was the first great moment in my wild swim.

The second great moment occurred as I sat on my towel in the sun, lounging on the grass beach with the other women who were visiting the pond that day.  I wasn't the only one who had endeavoured to cover up body flaws, but this practice was not the norm.  I was surrounded by women of all shapes and sizes.  Bikinis and one-pieces.  Young and old.  Short hair.  Long hair.  Thin. Rubenesque.  Covered and uncovered.  And it was okay.  Whatever and however a woman chose to be...it was accepted.   And it was powerful.  

As we sat or swam or napped or read, there was an implicit acknowledgement that as women we all carried similar scars and wounds.  I'm not a Shakira fan by any means, but there is one line in a song of hers that I think of often, and especially as I sat on my towel drip-drying:  "underneath your clothes there's an endless story."  It's true.....women's bodies ARE storied.  They are objectified.  Beaten.  Hated.  Loved and touched....with abandon, caution, indifference, tenderness.  Our body stories are complicated and the narrative changes as we grow into acceptance or shame.  Perhaps that's just one of the reasons why being physically intimate with another woman is so powerful and affirming….wounds to wounds….like to like…exponential.  The skin sings and glows its history.  For those willing to truly see, it can be a beautiful display and remarkable moment of recognition such as I experienced that day at the Kenmore Ladies' Pond.  

My time at the pond didn't cure me of my inclination to hide, but it did make me want to stop hiding.  It made me want to be vulnerable and seen with all of my perfect imperfections, and give that same gift in return.  

"Your body is the harp of your soul.
And it is yours to bring forth
sweet music from it
or confused sounds."
~Khalil Gibran