Thursday, October 13, 2016

Me too, and it's #NotOkay

Listening to Michelle Obama's impassioned speech this morning in New Hampshire made tears run down my face. More than anyone else, she is capturing how I feel about this week in politics. The speech is a "must watch" for all women, and for all men who respect and value women.

Speaking to a packed auditorium of mostly women and children, Ms. Obama seemed to be holding back tears as she said, "I can't stop thinking about this. It has shaken me to my core in a way that I couldn't have predicted." She honored women everywhere by naming our experiences as painful and hurtful.

I couldn't help but wonder about Michelle Obama's own personal sexual harassment or assault story. We all have at least one (and often several), and many are bravely speaking out at last, sharing their stories. Why do women stay silent? As the First Lady said,
"All of us are doing what women have always done; we're trying to keep our heads above water. Just trying to get through it. Trying to pretend like this doesn't really bother us. Maybe because admitting how much it hurts makes us as women look weak. Maybe we're afraid to be that vulnerable. Maybe we've become accustomed to swallowing these emotions and staying quiet. Because we've seen that people will often not take our word over his. Or maybe we don't want to believe there are still people out there who think so little of us as women. Too many are treating this as just another day's headline. As if our outrage is overblown or unwarranted. As if this is normal."
We are living in a world where this kind of behavior is excused as "locker room banter." Where a woman's looks are commented on, constantly, every day. We all have multiple stories. I am ashamed to admit that I used to watch Trump's horribly sexist "The Apprentice," even though the beginning and the board room segments with Trump were awful. He humiliated women on a regular basis. But because I was trying to pretend that it didn't bother me, and because women become so immune to sexism on a daily basis, I watched it anyway.

Now, prompted by Trump's claims that he has never harassed or assaulted women, his victims can take it no longer. All these brave women coming forward are facing the scorn and accusations from the far right of the Republican party (Trump supporters). New York City Council Speaker Melissa Mark-Viverito felt compelled to share her own story of childhood sexual abuse.

Women are sharing their stories on Twitter and Facebook and in the blogosphere, using the hashtags #TYBraveWomen and #NotOkay. As strong women, we stand together and help each other be brave. These women inspire me to be honest about my own story, which only a few people know. I am another 1/5.

When I was 13 years old, I was sexually assaulted by a stranger. My first experience of sexuality was one of pain, terror, and lasting post-tramautic stress disorder. I am still afraid of dark streets and distrustful of intimidating strange men. This experience is why I cannot abide graphic rape scenes in TV or movies (and why I refuse to watch "The Game of Thrones"). When I was called to sit on a jury for a sexual predator similar to my own (35+ years later!), I had to name my experience in a full courtroom, in front of everyone including the predator. I asked to be taken out of the jury pool, as did other female sexual assault victims, but to have our request honored, we were forced to speak about our awful experiences out loud. When I left the courthouse, I called Mike, completely broken down. I felt shaken for days afterward, and even still now when I remember that afternoon. That's another reason we stay silent.

As many of you know, I'm a confident, self-assured woman. But I have kept this mostly quiet until now, for the reasons Michelle Obama named: fear of vulnerability and being perceived as "less than" or weak. Not to mention the fact that this was an extremely private, traumatic experience in my life.

But if other women can face Donald Fucking Trump down in the face, after he assaulted them--in either thought or deed, I can do it too. Now he threatens to sue them all, and in a bizarre strategy that merely amplifies his disdain for women, he says that they were not pretty enough for him anyway.

I am okay, and I am strong. I've surrounded myself with loving, compassionate men (especially my husband!) who would NEVER treat women this way or dismiss this kind of behavior as "locker room talk." The kinds of men that Michelle Obama spoke about:
"I know the men in my life do not talk about women like this, and I know that my family is not unusual. To dismiss this as everyday locker room talk is an insult to decent men everywhere. The men that you and I know don't treat women this way. They are loving men who are sickened by the thought of their daughters exposed to this kind of vicious behavior. These men are worried about the impact this election is having on our boys who are looking for role models about what it means to be a man. Strong men do not have to put down women to make themselves feel powerful. People who are truly strong lift each other up, bring people together."
One of the most heartbreaking things about this recent Trump catastrophe is that his supporters are defending his despicable, dishonorable actions, even though he's admitted that he is free, even proud, to sexually assault women. And any man who sexualizes a preadolescent girl OR HIS OWN DAUGHTERS is human filth. I simply cannot believe that people are still defending this man's actions.

As Michelle Obama said, "the measure of any society is how it treats its women and girls." That's also the measure of a human being. How will your vote show respect for women and girls, and decent men? Our children are watching and waiting to see what we will do.

Wednesday, September 7, 2016

Don't mess with my brain again!

In early August, I shared that I'd received news that my cholesteatoma had returned and that I'd have to have a modified radical mastoidectomy. And now that's changed again: the surgery will be similar to what I had last time (mastoidectomy and tympanoplasty).

Yesterday I had a CT scan and MRI, with a mammogram snuck in between them. (My friend Rachele said she's never heard the words "snuck in" and "mammogram" in the same sentence...leave it to the great multitasker!) Mammograms scare me because I've had so many close friends battle breast cancer, and I've had to have several biopsies. Fortunately, it was clear. Phew!

Today I met with my ear surgeon, Mike in tow to take notes. As I told Mike later, as a communicator I always write the most important point in the beginning instead of rambling on to the point. Well, my ear surgeon doesn't operate by those principles. He shares lots of details, with the point at the end.

He began telling us all about what he's been considering for my surgery on September 23, starting with explaining to the insurance company why he needed both the CT scan and the MRI. Then he started talking about why he chose to consult with the neurosurgeon who did my brain surgery.

After they both looked at my films, the highly accomplished neurosurgeon, who is really not my favorite doctor, shared his belief that the modified radical mastoidectomy (which would essentially open up the inside of my ear) could expose my dura (the lining of my brain), which they had to repair back in 2012. It's too risky.

Sometimes I have a hard time following my surgeon's extremely detailed explanations about ear anatomy and cholesteatomas, but I like him. He reflected back to 2013, when he had an "epiphany" that he should try an alternative to the modified radical. He trusted his instincts. I believe in following your hunches while balancing data at the same time. I'm glad he did so.

So instead of the modified radical, he will remove the cholesteatoma and attempt, again, to rebuild my ear drum. I asked him if this means I might still require further surgeries, and he responded that if I do, I will break the records. That's not exactly reassuring for me, because I seem to have done that already. But I'm also glad they are trying to protect my brain.

Mike later revealed that when the ear surgeon mentioned the neurosurgeon's name, he panicked a little, thinking that I'd have to have brain surgery again. That thought hadn't even occurred to me, and I'm glad it didn't!

Sixteen days until surgery. The thing I'm dreading most is the pain. Many Web sites claim that the pain from ear surgery is minimal. I don't know what they are smoking! In my experience, it hurts like hell.

I'm stocking up on DVDs and clearing my schedule. In spite of my pain fears, I'm actually ready for it to be over with so I can move on with my life again.

Monday, August 22, 2016

And in the blink of an eye, 20 years come and gone!

I have a quiet moment alone tonight to reflect on the life of my oldest son, Chris, who turns 20 on Tuesday, August 23. Twenty years since:

NICU, August 1996
  • I went into premature labor at nearly 24 weeks gestation.
  • I drove myself to find Mike at the track so we could go to the hospital (a story that later alarmed the nurses!).
  • A nurse gasped when my OB examined me and saw that the umbilical cord had prolapsed (earlier she had doubted me).
  • My OB told us that we had a choice: have a regular delivery and our baby would die, or transfer to Legacy Emanuel to have a c-section and give him a 50% chance of survival.
  • I had an emergency c-section, with general anesthesia, quite the opposite of the natural birth I'd dreamed of. Poor Mike had to wait to see who survived the surgery.
  • We were thrown into the previously unknown, foreign world of the neonatal intensive care unit (NICU), a story in itself. 
Kangaroo care
I have written plenty about what it's like to have a 24-week micropreemie, in such posts as Chris' full birth story, 10 things I wish I didn't know about prematurity, and Letter to a Micropreemie Parent. Six years ago, we revisited the NICU with Chris as part of a fundraising video for the hospital (tissues needed for that video!). Now that NICU as we knew it is no more. 

In its place is Randall Children's Hospital, where every NICU family has their own private room...a setup that we dreamed of and planned for many years ago as part of the NICU Family Advisory Board. What a different experience we would have had there for 117 days back in 1990, if we'd had privacy and a place to sleep. We could have been at Chris' side constantly, 24/7, instead of feeling like we were visitors all the time.

Freshman orientation
But back to my 1-pound-six-ounce miracle baby, who didn't speak until he was three. The one who just finished his freshman year at Pacific Lutheran University, my alma mater, where he hosted a weekly radio show and acted in several drama productions. The one who's been working his butt off this summer as a courtesy clerk at Safeway, often starting his shift at 6 a.m. or ending at 1:00 a.m., walking home in the pitch dark. The one who is one of the sweetest, kindest, most resilient, and most friendly people I know. The one who has always had a deep appreciation for life and family, because he knows he almost didn't survive.

Victoria, BC, last month
For example, this evening Kieran and Nick apologized to Chris for not having birthday gifts for him. Chris said they didn't need to buy him gifts, because the greatest gift he received was being around them and having them for brothers. 

Revisiting Legacy Emanuel
 Hospital, last month
I've grown used to having Chris at home with us again this summer, and I haven't faced up to the fact he'll be leaving again soon to return to college. I am good at that, trying to postpone thinking about the sad and hard stuff. I rewatched the Red Wagon video I linked to above, tears running down my face, even though I hate seeing myself on video. Thinking about the NICU always does that to me. It breaks me.

Birthday cupcakes, today!
These are the words by Elizabeth Stone we used to announce Chris' birth to the world, before we knew if he would survive or not:

“Making the decision to have a baby is momentous.
It is to decide forever to have your heart go walking around outside your body.”

Truly, that day that changed my life forever and turned me into a mom feels just like yesterday. One of the simultaneously best and worst days of my life made me wiser, more grateful, and more heart is there for all to see. Since August 23, 1996, I easily dissolve into tears.

Chris, you will always be my hero. Thank you for surviving, thriving, and becoming the wonderful young man you are today. I am so proud to be your mom.
With my miracle boy, now 20!
Just a reminder that he was 11 inches long at birth,
and now he towers over me!

Monday, August 8, 2016

I'm back, and so is my cholesteatoma

Sadly, it's true.

I have been missing my blog and intending to get back to it, so here I am. I learned this week that my cholesteatoma has returned and I need to have a fourth and final surgery: a modified radical mastoidectomy. As my friend Brad so aptly put it, it is another round of suckitude.

I suspected something might be amiss in my ear, because I'd had some ear pain a month ago and I could tell my hearing had worsened. Well, the reason for that was an enormous ball of hard wax. It took my ear surgeon 15 minutes of extremely painful digging around in my ear, followed by a strong sucking machine, to get that sucker out. And once it was out, he saw that the cholesteatoma had come back with a vengeance and was infected. Just lovely.

Even though I'd tried to brace myself for bad news, I teared up in his office, much to my embarrassment. The surgeon had planned to do a modified radical at my last surgery three years ago, but decided at the last minute to take a less invasive approach. I asked him, again, why he had decided not to go full bore, and he said my anatomy is complicated. Isn't that reassuring?

I was feeling very low and emotional after hearing this news first thing on a Tuesday morning, especially on the heels of news the previous day about our company's financial performance and my uncle having a stroke. I returned to my office and couldn't keep myself from crying. Suckitude.

The bad news forced me off to the gym--I figured I needed to work off the stress. That helped a bit. And then in the afternoon, I received this beautiful pick-me-up from Mike and the boys:

The next day I continued to feel puny, so at lunch I set out for the river. I've been rereading The Bell Jar for my book group this month, and Sylvia Plath (as Esther) describes her love of baths:

“There must be quite a few things a hot bath won't cure, but I don't know many of them. Whenever I'm sad I'm going to die, or so nervous I can't sleep, or in love with somebody I won't be seeing for a week, I slump down just so far and then I say: "I'll go take a hot bath.”

Well, I am not a huge fan of baths. But walking to any body of water (river, stream, lake, or ocean) is a curative for my soul. As I was standing out on the boat dock in the middle of the Willamette River, I could feel my resilient self rising again, realizing I just need to get through this. What can't be changed must be faced. I recalled hearing my mom describe how low maintenance and blase I was as a small child as I had surgery after surgery after surgery. I guess it's in my nature. 

By the time I returned to the office, I felt strong enough to call the surgeon's office and schedule my surgery for September 23. I have to schedule both a CT scan and an MRI before the surgery...I will try not to complain too much about that, as I suppose it's important for the surgeon to know where he's cutting.

I also discovered on my desk this lovely green stone, which my friend April gave to me...when I went to the beach with her and several other women in May, she had a bag of these beautiful stones and each one of us chose one out of the bag. When I saw "courage," I thought, "hmm...wonder why I need courage." Now I know why I needed that stone. Divine chance. 

 A brief visit with close friends filled with laughter, combined with messages of amazing support from friends and family, and I feel encircled with love and courage.

Wednesday, September 30, 2015

Preemies rock!

I've long believed that babies who were born in distress...whether that's prematurity or any other kind of medical trauma...have a truly unique wisdom and a love for life. They often seem older than their years, even if they have developmental delays. Yes, they face much higher chances of problems later on, and the media usually glosses over these risks by highlighting "miracle babies." But there's a spark inside of awareness of how lucky they are to be alive...that is rarely found in full-term or healthy babies.

Check out this beautiful article featuring gorgeous photos of preemies holding photos of themselves in the NICU. Here are a few samples:

Mom and son, both preemies!

And my own preemie, shown at 24 weeks and age 18 (he's now 19):

Preemies rock! I am in awe of what they overcome.

Wednesday, September 23, 2015

An angel in comfortable shoes

Karen on the far left, with 2 other favorite nurses
The cooler weather, falling leaves, and sweaters of autumn always take me back to the NICU. On this day 19 years ago, Chris was one month old, still on the ventilator and battling for his life...still weighing less than 2 pounds.

In the midst of our family's crisis, we had many angels. An incredibly calm and competent nurse named Karen kept us grounded. She somehow found a way to get assigned to Chris whenever she was working, a true godsend for these worried parents.

In the beginning of Chris' NICU stay, he was in Level 3...initially with one nurse assigned to him, 1:1, around the clock. As he got a little older and more stable, his nurses took care of two babies instead of one. When your son is fighting for his life, knowing that he's in the hands of a highly skilled nurse can make an enormous difference in your sanity! Each time we would check in at the door of the NICU and hear that Karen or one of our other favorites had Chris, we would breathe huge sighs of relief.

Karen did so many special things for us, beyond just being a reassuring presence and taking extraordinarily good care of Chris. She gave him a heart-shaped rock to start his rock collection (any gifts to him in those early days gave us such hope). On my birthday in early October she made a card with Chris' footprints and signed it from him. She lent us a book written by a grandfather of a 24-weeker, Dear Zoe, when Chris was the only 24-weeker...and the sickest, smallest baby...on the unit. In 1996, it was the only book in publication that mentioned 24-weekers and gave us any hope for his survival. Exactly what we needed.

And most memorable was the horrific few days when Chris nearly died, after he had lived for a month and we thought we had already faced the worst. After a surgery to insert a catheter, a perfect storm series of things went wrong. When the neonatologist called us, concerned, one morning, we rushed to the hospital. Mike wrote this in our journal:
"We hurried to the unit where, to our surprise, we found Christopher to be stable. Karen—kind, calm Karen—was the nurse. Her calmness entered into us and made us believe that everything would be okay. We even inked the soles of Christopher’s feet and pressed them onto the pages of the journal we were writing. We’d seen other babies having their handprints done but, what with all the surgeries, hadn’t gotten around to doing Christopher’s. At the time, I didn’t worry about it being a bad omen, and insurance along the lines of  'if something goes badly wrong…if we lose him…at least we’ll have something to remember him by.' I didn’t suspect a crisis until the crisis was upon us."
That evening when we returned to the NICU, we knew something was wrong. All of the medical staff swirling around Chris' bedside could not stabilize his blood pressure. They tried a drug called Captopril, but he had a bad reaction to it, which sent a blood clot to his kidney. The doctor ordered a paralyzing drug to keep him still overnight.

The next morning when we called early to check in, the nurse practitioner told us we should come in right away. “Christopher’s had a rough night,” she said. “I think you should come in. Things aren’t good.” It seemed clear: he was going to die. When we walked into the unit, nurses seemed to be avoiding eye contact or scurrying away at our approach.
"The small group around Christopher’s bed greeted us tensely. The nurse practitioner, her face strained, explained that Christopher’s blood gases had been horrible. He was on the highest ventilator settings and still highly acidotic. They were doing all they could, but Christopher wasn’t responding.
What were we going to do? What was the outlook? No one could guide us. I called Father Matt and told him. Today the church was installing our new Lutheran pastor. Obviously we couldn’t attend the ceremony. I asked him to let people know and to ask them to pray. I wondered if I should also ask him to come and baptize Christopher. I mentioned it to Marie but her response was an unequivocal no. 'That would be giving up hope,' she said."

When the night shift ended, the unit closed for report and we sat in the viewing room while the day shift was briefed.
"To our great relief, Christopher’s nurse was Karen. Her calming presence was exactly what we needed. She dealt efficiently with the vent, the ever-beeping monitor, the continued horrible blood gases—and the only sign of crisis was that she was even more focused than usual."
Under Karen's practiced care, Chris seemed to stabilize that day, but in the evening, his oxygen levels were still low. But by Monday, once more grave faces greeted us in the unit. He was too quiet, not responding to lights in his eyes...neurological concerns. Karen told us that a head ultrasound had been ordered.

In the late afternoon, the results of the ultrasound were in. The head neonatologist, Dr. Lewallen, called us into a conference room with my parents and physician sister. Karen found another nurse to cover for her so she could join us. Dr. Lewallen told us that Chris had experienced something catastrophic...cerebral edema (brain swelling) and low flow to the brain...and that we should discuss how we felt about sustaining life artificially. "At this point, it appears that he has suffered massive brain damage and will not recover neurological capabilities.” He had ordered a neurological consult to confirm his diagnosis.

We were all stunned, and Karen looked like she was holding back tears. Mike held onto hope, but this was my greatest fear, and I lost it.

But when the neurologist stopped by later, he clearly saw the spark in Chris. His examination showed doll's head reflexes, a good sign, and he thought he was having a pharmacological reaction. “Call me a crusty old neurologist, but I don’t put too much faith in ultrasounds. I’d say wait a few hours and see how he reacts. He’s a tough little kid. A fighter.”

Over the next few days, as Chris eventually stabilized and rose back to his fighting self, we had a few nurses that really challenged my patience. One of them, clearly a heavy smoker who had a rough touch, even told me she was concerned he was going to become addicted to morphine! Another seemed barely out of nursing school and very nervous. I was not fond of every nurse!

I still remember my great relief when we returned to the hospital a few days later, relieved to find that Karen was back again. We knew she had been requesting to have Chris, because she was his nurse every single day that she was working. "As we would soon find out, Christopher responded in what would be his typical way: to surprise us out of our gloom."
"Karen appeared by the bedside later in the morning clutching a little white sheet of paper. She turned it around so we could both read it together. It said 'NORMAL HEAD GETTEL.' It was the ultrasound report, and it showed that Christopher’s brain was completely normal. We could not believe it, and had to restrain ourselves from whooping in the unit." 
Those few up-and-down days were not the last crisis Chris would face...but reading back over our journal entries, I'm reminded by the fact that Karen was with us during our most somber moments as well as our most happy ones.

We haven't seen Karen for years, and sadly she had to step down from NICU nursing after a head injury. Such a loss to parents and babies everywhere! The photo above is from Chris' baptism, which several of his nurses attended, and we had Karen do a reading at the baptism.

We will always be grateful for how tremendously well she took care of our very, very sick baby...and his very, very worried and highly engaged parents. Happy birthday, Karen! Thank you!

Tuesday, September 15, 2015

Walking out in peace (dear Roy)

My friend Roy retired today, after 29 years of working at my company...and as he turns 65 tomorrow. He posted on Facebook a few minutes ago:

walking in peace
into a new moment
always a miracle
just breathing in
just breathing out
love smiles

I first met Roy back in 1996--when I was just 31--shortly before I got pregnant with Christopher. I had just taken on a huge new job as publications manager of our newly expanded Northwest region, and one of my first tasks was to lay off three people in Roy's group. It was not an easy start to our working relationship...I was not a popular person in Seattle! But Roy has a huge heart and gave me a chance anyway.

Through earlier years of working together (see if you can find Chris in this collage!)
Roy's portrait of Chris, 2015
Roy has known Chris since his birth, and he's made two drawings of him--one as a baby and one this year for his graduation. He worked with me for several years as the Seattle graphics lead, and carrying the stress of being a manager in a high-pressure environment took the toll on his body. After he had a couple of strokes and heart attacks partly brought on by stress from his relentless commitment to client service, he turned his life and his health around. He teaches yoga, has become a Benedictine oblate (I call him my "Zen Catholic friend"), is a published author and committed dad and husband, and has developed a practice of visiting Starbucks and making portraits of people he sees.

Teaching yoga at my church, painting with the sustainability team,
and having brunch with Roy on Labor Day
Roy brings the fun--he's always my first choice for any kind of brainstorming, and he specializes in making people look brilliant. In recent years I've had the joy of working with Roy on our sustainability communications team, creating lively communications that move people to care for our planet. As part of this team, he's worked with and tried to keep up with many strong, fast-talking, and opinionated women (in addition to me) who send him in all sorts of different directions! 

I remember many years ago when he had to have surgery, he told his wife goodbye before going under the anesthetic....just in case he didn't wake up. He said he was ready to die because he was at peace. I've never forgotten that stunning statement. That's the way he lives his life. Shouldn't we all live that way?

Roy has deeply influenced my life as a spirit friend, artist-inspirer, and constant cheerleader. He's touched so many lives through his yoga, artistic expression, and spiritual inspiration, and he is an amazing soul. His goal in retirement is to use up his art supplies and write two more books!

A Starbucks painting

Beautiful lettering

I already miss working with him...he's just one more long-time close colleague who has migrated to the pleasant retirement shores. Thank goodness for social media, though, as he maintains an artistic Facebook page full of paintings, letterings, and beautiful words to go with his art...and I hope to collaborate with him on a future project, if he can fit me in!

Happy birthday and happy retirement, Roy! As another coworker said, you have changed my life for the better. I'm sure your retirement will be just as rich--if not richer--than your 29 years working for the world's greatest consulting engineering firm.

Here's a video our sustainability team put together for Roy, to go with his retirement book:

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