Revisionist Storytelling

Dahlia and I are at the pediatrician's office so that our new doctor can look at a 10-day old bump on her leg that seems to get getting bigger as time goes on.
The waiting room is packed with kids of all ages and their parents, mostly mothers.
Two kids are wearing paper masks over their mouths and noses.
A few kids are snotty, but no one looks that miserable.
Everyone keeps to themselves, as if afraid of spreading or catching germs.
I have to admit that I wonder what germs we're exposing ourselves to by being there.

A mother across from us is there with her toddler and infant twins in carseats.
The toddler is squirmy and restless, and clearly unhappy about her mom's policy that she has to stay in her chair.
When there are other kids to interact with? Are you serious, Mom?
Dahlia walks over to her and hands her two board books we've finished reading from the waiting room shelf.
The little girl is delighted to be interacting with another child, the mom says thank you.
For the second time in about 10 minutes, she pull a bottle of antibacterial gel from her bag and lathers it on her hands and all over her daughter's,
As well as on the arms of both of their chairs.
As her daughter squirms out of the chair for the third time, she picks her child up and puts her on her lap.
And she makes her stay there until their name is called.
Away from germs, hopefully safe.

The whole scene is fascinating.
Antibacterial gel abounds in mothers' purses.
The energy of fear is palpable
I am mesmerized by it all.

***

I wonder how I would approach it all if Tikva were alive.
Perhaps we'd all get flu shots in case that could protect her, with her weakened lungs.
Perhaps we'd carry antibacterial gel in our bags too, in case that could kill just one germ that might give her pneumonia.
Something like a flu isn't scary with Dahlia or with us.
It could be with a baby like Tikva.
I can't really say, though, it's too hypothetical without her here...

***

I went to the gastroenterologist today and we got into a side conversation about just this.
In his words, we're approaching the common flu as if it were an ebola epidemic.
He talked about how when his children were small (very recently, he was somewhere between my age and early forties) he encouraged them to get dirty, to put dirt in their mouths, to eat off the floor.
Probably not literally, but I got his point.
We were the same way with Dahlia.
Germs were not our enemy, not something to be feared.
We understood that getting intimate with dirt as a child builds your immune system
So that you can resist much bigger and badder things later on.

Dahlia is radiantly healthy.
When she gets a cold or a stomach bug, which happens once or twice a year, she is better in 24-48 hours.
She doesn't get green snot that runs out of her nose for weeks.
She has never had an ear infection.
She has had rashes that come and go for years and coughs that last for months with no other symptoms,
Things that baffle but don't actually worry the doctors we've taken her to.
More than anything, though, she is an incredibly healthy child.
Her immune system is strong, and she has proven this time and time again.

***

I, on the other hand, am a different story...
Or am I?
Lately I am starting to view my personal narrative about my health differently than I have for much of my life.
And the more I see it in this new light, the more that comes my way to affirm my new perspective.
In order to explain, I need to rewind.

I used to tell my story about my health like this:

1.
When I was 15, my parents got divorced and I began burying my sorrow in food.
I got fat, gained 60 pounds with the help of Ben and Jerry and grief.
My 5'4" thin-boned frame did not like carrying all that weight, which mostly resided in my butt and thighs.
I had a lot of pain in my knees.
I was not only fat but totally out of shape.
My closest friends in college were bulimic, and I had my own challenges with overeating.
I was scared of where I might take my desire to be thin.
When I was 20, I sought the help of a dietician and lost most of my excess weight in a healthy way.

2.
Shortly after that, I broke out in terrible acne all over my face, for about three years.
Since I knew nothing then about how much damage long-term use of antibiotics can wreak on one's body,
I was put on antibiotics for the acne, for about two years.
The acne didn't clear, until one day it just kind of did.
When I was 22, I went to the ER because it was agonizingly painful to swallow food.
I was diagnosed with esophagial ulcers, probably a result of the antibiotics.
I healed slowly by taking medication and eating a lot of soup.

3.
Shortly after that, I sought the help of an alternative practitioner to do a big cleanse and replenish the good bacteria in my system that had been wiped out by the antibiotics.
I made shakes with psyllium and bentonite and herbs and felt pretty amazing.
The practitioner recommended I not head off to Europe for the 7-month solo journey I was planning.
He was worried my good bacteria was not replenished enough,
And said it was not in my karma to do so.

4.
Off I went to Europe anyway.
In Italy, I ate some bad shellfish and got really sick.
For several days I would sleep for 12-14 hours at a time and wake up weak and exhausted and feverish.
Eventually I felt better and I continued on my travels, without visiting a doctor.
I felt mostly okay for the rest of my adventure, with occasional days of feeling badly again.
When I was 23 and back home, I went to the doctor and had my first parasite test.
Nothing was found.
When I was 24, I had my second parasite test.
Nothing was found again, but I still didn't feel great.

5.
When I was 26, I went to Martinique, another solo voyage.
I ate my share of shellfish there too.
During that week, I realized something wasn't right.
I just wasn't pooping and I'd been having headaches that wouldn't go away for weeks.
When I came home, I saw a chiropractor who also did homeopathy and herbs.
She was sure that I had parasites, but I told her that I'd had two tests that had found nothing.

6.
Shortly after that, I looked in the toilet one day and saw blood.
The doctor I eventually found who guided me towards wellness over the next two years told me a story about a patient he had had years before who was a proper Southern belle.
She'd come to him with abdominal pain and he asked her if she'd ever seen blood in her stool.
Blood? How would I know that?
The poor woman had had a terrible case of colitis probably for many years but had spent her whole life never once looking in the toilet after using it - because that's just not what a Southern lady does.
Well, let's just say that not a day goes by that I don't look in the toilet.
Not after the past 13 years.
(Apologies to those less intimate with their bodies for the up-close-and-personal nature of this post.)

7.
My very special doctor straddled the fence between western and alternative medicine.
He taught the western medicine course at the local acupuncture college.
He knew about tests and treatments most doctors never learn about.
He told me that he and I would work together to get me well.
He held my hand on the long road of healing from not one, not two, but five parasites that had been living in my system for three years since that fateful meal in southern Italy - finally diagnosed by a mail-away lab in Arizona.
He told me two of those parasites would have eaten away my liver in another year if they'd continued to go undiagnosed.
I took three rounds of antibiotics to kill them (ick!)
And got on steroids and antifungals and a zillion other drugs and supplements to heal the resulting inflammation and bleeding.
He called it parasitic colitis.

8.
When I was 28, I had a conversation with my future husband the very first time we met at the Burning Man festival about what we were planning to burn in the fire when they set the wooden man aflame on Saturday night of Labor Day weekend.
I went into my bag and pulled out a huge Zip.loc baggy and a two-inch thick folder of papers.
I was going to burn all my leftover medication and all of my medical records and insurance files from the two years I'd spent healing from colitis.
I told him I needed to do so in order to truly heal, to believe that I no longer needed them, to trust that it wouldn't come back.
It felt amazing to throw them into the fire.

9.
When I was 31, I gave birth to radiantly healthy Dahlia,
Whose Apgar scores were all 10s.
Who latched on immediately and nursed healthily and grew easily.
I lost my pregnancy weight in a month,
Then got even thinner.
I had a hard time keeping weight on, especially while nursing.
I lost a lot of hair and got sick a lot.
I felt drained from it all, but happy.

10.
A year or two later, I didn't feel like I was ready to get pregnant again.
I went to see a holistic practitioner who gave me supplements that helped my hair grow back
And helped me feel more vital, helped me stop getting every cold that came around.
Then the colitis came back and I stopped working with her.
I felt like something I'd taken had been too intense, had triggered something.

11.
I was completely stunned and very bummed that the colitis had come back, 7 years later.
I thought I'd gotten rid of it for good.
I didn't want to go back on steroids - I hated how they made me feel emotionally.
So I kind of just lived with it, learning where every public bathroom was throughout Oakland and Berkeley.
I worked with an acupuncturist who helped keep the symptoms on the mild side.
And I decided to get pregnant.
And I miscarried at 10 weeks.
And we headed off to Israel, and I finally decided to take the prednisone.

12.
Three months later the colitis had healed again.
A month after that I got pregnant with Tikva.
Two months after that I got the shingles.
Two months after that her CDH was diagnosed.

13.
Three months ago, just as we were getting ready to leave San Francisco to come to Cincinnati,
The colitis came back again.
I immediately went on steroids - no time to feel like crap (no pun intended) - and a few other medications.

Three days ago I went off all the medications - I am healed, symptom free, back to normal.

***

It's an impressive medical history, isn't it?
I won't bore you with the list of medications and supplements I've taken in the last 18 years,
Which is about twice as long as this story.

This is the thing, though:

I used to get kind of excited telling people - doctors especially - the story of my health, or lack thereof.
It gave me kind of a charge, it felt validating - I got a lot of knowing nods, a lot of sympathy, a lot of,
Wow, that's just terrible. I am so sorry. You sure have been through a lot for someone so young!
My story gave me an identity that I got really comfortable with over the years.
It defined me.
It became who I was.
I became the girl whose one-thing-leads-to-another cycle of ill health was about 80% of who she was.
I didn't really know how to be without this huge part of me.
I didn't know how to tell my story a different way.

My story defined me.
And it became a crutch, something I relied on,
My illness something I couldn't live without.

***

Several years ago I worked with a great therapist who did EMDR with me.
During a session, I went back to my 15 year old self, sitting on my living room couch watching Welcome Back Kotter reruns and eating Ben & Jerry's New York Super Fudge Chunk.
I could almost feel it going down my throat, taste the extreme sweetness.
I remembered deliberating in my mind whether I could justify eating half a pint alone,
Sometimes even a whole pint.

Mid-session in that therapist's office, I started crying.
And I changed: I got fat burying my sorrow in Ben & Jerry's.
To: When I felt alone with no one to comfort me, that ice cream helped me get through the hardest thing in my life (at the time) without doing something more harmful to my body.
It was my way of coping, my way of nurturing myself.

Drained and invigorated, I left the therapist's office and walked across the street to Who.le Fo.ods.
I bought a pint of New York Super Fudge Chunk
And took it home to Dave and Dahlia.
We each had a scoop, and I retold my story to them:
This was my favorite ice cream when I was a teenager.
It helped me feel good when I felt bad.
I'd never told the story that way before.
For the first time since I was 15, I didn't feel angry at myself for gaining all that weight.
I didn't feel regret about the stretch marks I still wear on my body to remind me of those pints of ice cream.
Instead, I felt awe at what I'd gotten through intact.

***

Here is how I'd like to retell the story:

1.
When I was 15, my mom left and life was never the same in our family.
It was hard, but we got through it.
There was a lot of love in our family that remained,
We stuck together and loved each other,
Even if we yelled and cried too.
I found comfort in food, in doing theater, in my friends.
I nurtured my younger sister through her own journey to regain her footing.
I helped my dad figure out how to parent as a single father.
I got good grades in school and did a lot of extracurricular activities and went off to college.

2.
I struggled in college with my weight and my emotions.
I went through dark tunnels alone,
Wrote fiercely and filled dozens of journals.
I cried a lot.
I made new friends, amazing friends I still love.
I got help and lost my excess weight and started feeling good.
I found a wonderful therapist and for the first time I let out the tears and the anger I'd been holding inside.
I began to feel lighter, freer.

3.
I went off to Europe and Israel in search of myself,
In search of my parents and their history and my own.
I took hundreds of photographs,
Filled more journals,
Met people from all over the world,
Connected with family and family friends,
Learned about my parents in a new light,
Got to know who they were when they were my age.
I got sick while traveling, but it didn't stop me from continuing on my journey.
I traveled for 7 months on less than $4,000.

5.
I finally got the right help for my illness and worked fiercely to get better.
I refused to let anyone tell me I would have this illness for the rest of my life.
I refused to let my insurance company get away with not covering every treatment, even alternative ones.
I committed myself completely to my healing until I got well.
Until I could eat bread and cheese without worrying again.
Until I could eat chocolate ice cream again.
I burned all my leftover meds and medical records in a big fire in the middle of the Nevada desert,
The same place and the same summer I met my husband.

6.
We got married.
I got pregnant easily.
We had a healthy happy magical child.
My breasts made milk that nourished her for 18 months.
It took a lot out of me to do all that,
And I got some help to regain my vitality.

7.
My illness came back, but not as intensely as the first time.
I sought other ways of feeling better so that I wouldn't have to be on medication.

8.
I got pregnant easily again.
Ten weeks later my body realized that child wasn't going to make it
And it released the pregnancy.
I allowed myself to grieve healthily,
Still trusting my body.

9.
Finally, I got tired of feeling held back by the illness,
So I took the medication
And I believed that it would work
And it did.

10.
I got pregnant easily a third time.
I got the shingles.
I wondered about my less-than-mighty immune system.
I doubted my body's resiliency.
I felt intense physical pain.
And I got through it - 6 weeks on the couch, in excruciating pain, miserable and very far from home.
But I got through it.

11.
Tikva's CDH was diagnosed.
I was terrified.
I questioned everything.
Wondered if my body hadn't been ready to stay healthy, much less sustain a healthy pregnancy.
I thought about how I might have caused her condition.
I cried.
I prayed.
I braced myself for the big leap of faith ahead.
I asked for help, for support, from everyone I knew.
I hoped like I have never hoped before.
I allowed myself to be held by something bigger than me.
I carried Tikva inside me with courage, with faith, with love.
I pushed her beautiful body out of me.
I loved her completely, unconditionally.
I held her while she lived.
I held her while she died.
I buried my child.
I wrote for my survival,
Shared my every thought and emotion so as not to feel alone,
Also hoping that it might help others.

12.
When my illness hinted that it was back again just before our move,
I braced myself again and got on medication right away.
No time to mess around,
No time to be sick.
We set off cross-country.
We had car trouble.
My colon wasn't happy.
It was hard.
We made it to our new home.
I wished we had more than one bathroom.
I began cooking good food in my new kitchen.
I started to heal.
I believed I could heal.
I healed.
I got off the medication.

***

Last week I called the provider of my (crappy, overpriced, extremely limited, high-deductible) medical insurance.
(I'll spare you my rant about our miserably pitiful health care system, except to say that I believe without a doubt that there is a special ring in hell reserved for the people who created private insurance companies.)
I learned, to my surprise, that I was past the 12-month pre-existing condition period on my policy and could now see a practitioner for my pre-existing condition and they would cover it (after I paid my $50 co-pay, that is).
I thought it would be a good idea to check in with a doctor who specializes in all things colon and make sure there was nothing I should be doing that I hadn't already done.
So today I went to see Cincinnati's top gastroenterologist.
He was lovely, and after our conversation about the outright panic over the common flu, we talked about my colitis.
He wanted to know everything, so I gave him the abridged version of the above health history.
He scrunched up his face and said, I'm not sure it really is ulcerative colitis.
If it were colitis, you would have responded to the medication much faster.
I think you may have healed on your own from whatever was going on in spite of the medication.

And this is the thing: I think he's right.
I remembered my beloved SF doctor from way back in 1997 saying that it wasn't ulcerative colitis (which is a chronic autoimmune condition) but parasitic colitis, which is a fancy way of saying inflammation caused by parasites.
I remembered how I felt that morning doing yoga in upstate New York when I just knew I was already getting better, knew that I would heal, and soon.
I thought about how I already was starting to feel better when I went on the last medication that I could easily attribute my healing to.
I thought about what Julie said, how I was doing healing on a huge and deep level, healing some really old stuff, for good.

True transformation,
Reconnecting to my most essential self.


***

I left the doctor's office and went to Dave's school to pick him up.
As I sat in the car with the window rolled down waiting for him,
I looked at a small red leaf on the ground.
I felt my essential energy as though it were oozing out of me from every pore.
I felt so deeply myself, completely incapable of being anything else with anybody I meet.
I thought about Tikva and how much I feel her within me, by my side, guiding me,
So close.
Tears filled my eyes just as Dave approached the car.
I'm having a moment, I said.
A past moment or a future moment? he asked.
A past moment.
Are you thinking about Tiki?
I nodded.

***

We're not getting flu shots.
We're taking our cod liver oil and probiotics and extra vitamin D.
We're eating well.
We're staying warm.
We're washing our hands, but not frantically every minute, and just with regular soap.
We're trusting our bodies.
We're understanding that just because germs are around, it doesn't mean we're going to get sick.
We're believing in the strength of our bodies and our immune systems.
We're not attaching to the fear.
We're not taking in the fear.

Fear is energy, and it doesn't serve us.
Trust and hope and love and wellness are energy too.
They feel much better.

***

I believe in my body in a way I haven't believed in my body for as long as I can remember.
I believe that my liver can cleanse easily of all the medication I've taken in the last three months.
I believe that I will get pregnant easily again.
I believe that I will carry a healthy child, birth a healthy child, love another healthy child and watch that child grow up with Dahlia for the rest of my life.
I believe that I can have two more children, that I am still young enough, that my body is nowhere near done with this babymaking thing.
I believe that there will be a tiny speck of Tikva in that next child, that I will see it in a glimmer in that child's eyes.

It feels good in my body.
I feel good in my body.
My body with the stretch marks on my thighs and breasts.
My body with the jiggly butt and thighs because I prefer sitting at my computer to going to the gym.
My body with the very faint mark still slightly on my belly from my pregnancy with Tikva.
My body with the shingles scars on my chest and back and arm.
My body with those annoying hemorrhoids and persistent zits.
My body with the hair that's thinner and grayer than it was before I had Dahlia.

My body that has the most amazing capacity to heal...
Profoundly and completely.