Wednesday, October 26, 2011
17 Weeks
Saying Goodbye
Saturday, October 22, 2011
Respite
"Remember," Alex tells me, "you put on your own oxygen mask before helping anyone else put theirs on."
Easier said than done.
What exactly does self care, in the face of a loved one's illness, look like? Is it manicures, massages, and facials? Is it simply eating three regular meals and getting adequate sleep? Is it processing feelings with loved ones? I've got the latter stuff covered, but am more than happy to spring for a massage. Seven straight days of sitting in hospital chairs, my shoulders next to my ears from stress, and I could use a little professional help to relieve the tension.
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When asked to name as many animals as possible within 60 seconds, he said "polar bear, ancient polar bear, old VW bus, vice." When I instructed him to think of the farm right behind his restuarant, the one where his boss's father keeps a variety of exotic animals, he was able to name the Scottish Highland ox, the lemur, and said, "one, not two hat" when trying to describe the one-humped camel. I admit I felt somewhat pleased that he was using an actual word-finding strategy by describing distinctive features and using gestures to get his point across. I'm sure that is something he will work on in therapy.
Heather asked him if he'd noticed any changes in his memory, and he responded, "I'm getting more stupid now that my teeth are glued together." She repeated the question, emphasizing memory. He said, "No. I just feel differently because it's difficulty more than I've ever felt before."
He's perseverative, and needs several cues to address the actual topic at hand, such as the date. He's fully aware of the day and month, but gets stuck relating the date to his work schedule, and is unable to correctly answer the year. When told that it's 2011, he nods in understanding.
Heather asked him to count from 1 to 10. Using his fingers to count, he said, "one ten, two ten, three ten, four ten, five ten." He jumbled digit spans when asked to repeat them, and was only able to say the days of the week and the months of the year when the task was modeled for him. Not for a lack of knowing the facts and finding the words, but because he didn't seem to understand what was being asked of him.
He misspelled frog "F-R-O-G-H," and said "E-G-H-A-R-G" when asked to spell grape backwards.
When given a description of airport, he said it was the Rhode Island Hospital. And with elevator, he said it was a hospital. I guess I don't blame him for not being able to think of anything else after being in the same place, imprisoned, for a week.
He answered most yes/no questions accurately, about the sun rising during the day, and corks floating in water. But when asked if pigs fly, he said, "If you like pigs a lot." Not trying for funny.
When given a list of three words, and instructed to name the category, he was 100% accurate. However, he still said strange things. When told car, bus, train, he said, "If it's not a fruit it's nice, but if it's transportation it's not cool." So he's correct, but had an interesting way of relaying the information.
And finally, when looking at the classic "Cookie Thief" picture he said:
"Oh look at me, I spilt some food or water and I'm smelling some cookie jars ... Out of three people I'm the only one getting cookie jars."
His responses and behaviors were textbook frontal lobe damage, but it's his lack of insight and awareness to his deficits I find the most terrifying. As I learned in school, this can be one of the more difficult things to treat. At this point, the speech therapist recommended a neuropsych referral and intensive cognitive-linguisitc therapy 4 to 5 times per week. While this all might not mean a whole lot to anyone not in the medical field, it means too much to me, and I sometimes resent knowing about brain injury and cognitive rehabilitation, wishing for a more ignorance-is-bliss scenario,
When I went back to the hotel last night, I texted Katie to let her know the Baby and I had plans to sleep in. But when I woke up this morning, I didn't feel any better. I still wanted to lay in bed and cry. And I dreaded returning to room 631. I texted Katie again and let her know I was going for a walk, and that I wouldn't be in for awhile unless they needed something.
Fresh air. Some exercise. Respite. Just what the doctor ordered. I wandered out of my hotel, across the Wickenden Street pedestrian bridge and wound my way through the cute shops and neighborhoods surrounding Brown University and Rhode Island School of Design. At first I had to stop every few minutes, take a seat, and just rest. The exhaustion was overwhelming. But with Foster the People on my iPod and a chocolate-peanut butter milkshake in hand, I wandered all across College Hill in Providence.
When I finally returned to my hotel some four hours later, I passed out on the bed and napped while I Love You, Man played on the TV as background noise. I awoke feeling refreshed, and finally made my way to Rhode Island Hospital, a place more familiar than I ever imagined. Brian was feeling like shit, not surprisingly, and he rested while Katie and I knitted, chit-chatted, and avoided talking about anything related to Bri's injury and his cognitive status.
It was nice to put my oxygen mask on first today, but I still wish I had found a magic wand in that cute Wayland Square toy store.
Friday, October 21, 2011
Wild Things
"I have a sadness shield," he said boldly, "that keeps out all the sadness, and it's big enough for all of us."
Wise words from the little guy in the movie version of Where the Wild Things Are.
I envy Max's bravery right now, and I wish I had a sadness shield that was big enough to protect Brian, Katie, Dad, and me. And our friends and extended family, too.
Dad says bravery is not being without fears, but having fears and going toward them. Similarly, Ambrose Redmoon (who?!?) says, "Courage is not the absence of fear, but rather the judgment that something else is more important than fear."
According to Merriam-Webster, courage is "mental or moral strength to venture, perservere, and withstand danger, fear or difficulty."
I think I'll take a bit of inspiration from Max's courage and creative problem-solving, and think some about what Mary Tyler Moore has to say:
"You can't be brave if you've only had wonderful things happen to you."
This experience, my friends, is far from wonderful, so is that what makes us brave? That we can endure these challenges, maintain some sense of hope, and eventually ride out the storm to rise above? I'm counting on it. Becuase I have to ...
Funny Bone
Isn't It Ironic?
It's a tough role to wear two hats - that of loving, worried and overprotective sister, and that of clinical speech pathologist. It's also tough to balance the fear, doubt, and anger about the worst case scenario, with the hope, optimism and encouragement necessary for best case scenario.
Thursday, October 20, 2011
Sweet 16
... Or maybe it's the simple fact that when saying goodnight to my brother last night, he acknowledged I was leaving and mumbled "love ya."
When life slows down enough to matter, it truly is the little things.
Tuesday, October 18, 2011
Brian's Brain
As I write this, Brian is tossing and turning in a restless state we shall call "sleep," Katie is sitting by his bedside staring at the same page of the same magazine she's been toting since Sunday, I'm on the other side of the hospital bed plunking away at my computer as I try to pass the hours and the anxiety until he is well. Oh yeah, and there's a big, stoic black man sitting on the radiator staring at us, where he is supposed to remain for the next 8 hours, as Brian apparently requires a "sitter." I guess he's on the nurses' shit-list for ripping out his IV and taking off his blood pressure cuff to get up on his own to use the urinal in the middle of last night. The bodyguard/babysitter is a modicum better than the safety belt and wrist restraints that Brian has been sporting the last couple days.
We're nearly 72 hours into the ordeal, and I suppose that means we're about to clear the hurdle of "maximum swelling." His condition has been more or less stable for the past 48 hours, and his CT scans and neuro screens have not indicated any additional bleeding or swelling. I suppose that means it's time to breathe a bit easier, but I'm still feeling suffocated by my fear of the long term ramifications of a head injury.
Flashback three days ago.
Brian was helping to celebrate his good friend and sous-chef Billy's birthday. A group of people continued the party at Brian and Katie's apartment after the bars closed. They were ready for the after-party to end, and Bri told everyone to leave. Some acquaintance, a 20-something island kid, was passed out on the couch. Bri woke him up, told him to leave, and the kid cold-clocked Brian, who fell back onto the unforgiving linoleum. One of their friends had the wherewithall to stabilize his head and call 911.
I got a message from Katie around 8 a.m. West Coast time on Sunday morning.
"Your brother is okay, but he's in the hospital."
Apparently he was flown off Block Island and is currently in the Rhode Island Hospital ER. Here I faced a fork in the road of my maturity: do I call my dad, fill him in on the hazy details, and let him take the helm? Or do I call the hospital myself and then break the news to my dad with a more informed dialogue?
I phoned the hospital, left my name with the ER secretary, and waited for the neurosurgeon to call me back. Time stood still. "Admitted to ICU." "Signficant bleeding." "Left parietal lobe. Central bone fracture." "Left frontal, left parietal, left temporal." "Right midbrain." "Subdural bleed." "Epidural hematoma." "Right mandibular fracture." "Currently sedated. Intubated because won't protect airway." The doctor advised I make the trip to be with Brian.
I called my dad. He mentioned that his phone had been out of service for the last 12 hours. I told him I had bad news. I tried to hold it together, but was sobbing while trying to get the words out.
"Brian's been in an accident," I choked. "He's in the hospital with a head injury."
"Nooo. Nooo. Nooo," Dad wailed.
We cried over the phone to each other for several minutes, eeking out expressions of familial love, worry, logistical plans.
"I can't figure out why I can't seem to protect my family," he cried to me.
More than anything, this is what cut me the deepest. Reminding me of the whole family we once were, and the fragments we remain today, without my mom at the helm.
Alex picked up the phone to buy me a one-way ticket to Providence, I packed a suitcase for an indefinite amount of time, and rushed to the PDX airport to catch my flight to care for my only brother.
I found a window seat next to a nice looking older couple. I stared out the window at the wing, waiting for the plane to take off, trying to cry softly to myself. My heart hurt and I was restless with fear. Could he die? Was he in a coma? What about being uninsured? Can I handle this? I was overcome with a strong sense of reliving the past, in reverse direction, like when Dad called me in Block Island and told us to come home to say our final goodbyes to Mom.
"Are you sick, dear?," the woman asked me suspiciously.
"No, no, I'm just crying," I shrugged and half-smiled to her.
She pat my leg, and I proceeded to divulge my whole life story. Brother's recent brain injury. Mom dead from breast cancer. A brother who died at six mopnths old. My dad's family devotion. My marriage and current pregnancy.
"It's just doesn't seem fair," I whined, regaling my family's hardships throughout the years.
"No one promised it would be," she consoled me.
When we landed, I hugged the nice couple goodbye and thanked them for their support and prayers. Although I might not be a believer myself, I certainly count on good God-fearing folks during trying times.
My heart continued to break as the various phone conversations played like a movie reel in my mind. And then there's the baby. My first, worried thoughts lead me to wonder if the baby will even get to meet Uncle B. And if so, will he be the same Brian I have known and loved for nearly 30 years? I yearned for my own mother, wishing she were here to save the day. It's her job to take care of my brother. And then it's her job to take care of me, too.
When I finally make it to Rhode Island, to the Trauma ICU, I see Brian for the first time. He looks almost childlike. And I am surprised by how normal he really seems. Except for that he is sedated and there are tubes coming out of his mouth, wires attached all over his chest, and his arms are hooked up to IV's administering pain-relieving and coma-inducing drugs. He's under sedation because he "can't protect his own airway." This, along with the fact I know he has a small lesion in his brainstem, feeds my worries about his prognosis. Apparently he was so agitated that he required restraints and then sedation for his own safety. I touch his face gently, pet his hair, and kiss him on his sweaty forehead. I then tape up the two family photos I've brought along so that if and when Bri wakes up, he'll see some familiar and loving faces. Truthfully, though, Brian would much rather first see the face of his beautiful girlfriend rather than his homely family. Katie doesn't want to leave him alone, and I call a cab at 3 am back to the hotel I have booked for the night. I'm worried sick, but relieved I can be here with him, and more tired than anything else. I fall asleep, and dream good dreams about a Brian that is alive and well and a part of my growing family's life.
Oh, Brother
His quotable quotes. Not just the content, but the delivery, too,.
"Booger on your face!"
"I'm going to go take a shit and think about him."
"Let's take virtual bong hits."
His genuine, emotional reaction to Alex and my engagement. It was like he didn't see it coming. "What?!?! Holy shit. No way."
He cried, over Skype, when we told him we're pregnant.
He seems excited, if curious, about being Uncle B.
His carpe diem approach to life.
The irony that one of the most laid-back people I know is also one of the most anxious.
Everyone is his best friend. Even his baby sister.
The story he told me growing up, that I was hatched from an egg on Easter.
He wore his tennis shoes to sleep for the week after the Bay Area earthquake in 1989.
He think I told our parents, at the age of 8, that he was smoking pot with his friends while babysitting me. I hold strong that my 2nd-grade self did not even know what marijuana was.
He texts and posts Facebook photos of his tomato garden.
He makes the best sweet potato/yam mashers ever. Key ingredients: coconut milk and Chef B-Love's special t0uch.
He tries to support and cater to my neurotic diets over the years - by cooking me kale - in a cup of butter. That must be why it tasted so good!
Our Fudge Fight of 2004.
I was inspired to follow and live in cool places because of him.
Christmas in Argentina with the Hartman's, lace cookies and all.
When crazy Grove Street roomie, Cyrus, told Bri he drank too much - after just one beer.
He ran the Vancouver 1/2 Marathon in his skate shoes in the pouring rain because his running shoes got stolen from my Volvo the night before.
We drove straight from Colorado to Rhode Island and he didn't let me drive. Ever.
He supposedly adored me as a baby.
He started riding a stand-up paddle board before the big craze.
Chocolate Lover's Festival.
Take care of Bri and Paul after their separate ski accidents. And visiting the Montrose WalMart with the two gimps.
B-Love is the most accurate nickname.
When he got his wisdom teeth pulled, he asked get me to blow pot smoke in his mouth so he could get stoned. When I declined, he proceeded to make pot cookies. Dad accidentally ate them.
He loves my husband and considers him a brother.
He cried at our wedding, but hid his tears behind sunglasses.
He asks me about 1x per month for my Xanax.
He thinks I'm a doctor.
He's a great gift-giver: Tahitian black pearls, diamonds for high school graduation, plane tickets to visit him.
He treats his friends like family.
He's like the captain of a pirate ship, tattooed and running with a posse.
Even if he's annoyed of Dad, he's never, ever rude to him.
He once shot a Robin Hood and was said to be Junior Olympic archery material.
He's unsettled when he works too much or when he works too little.
He's a serial monogamist, but is devoted to each of his girlfriends.
He is Peter Pan. And now people are starting to think I'm his older sister.
He's not afraid to be sensitive or vulnerable.
He can sleep anywhere. Always had.
His work ethic and leadership in the kitchen.
Singleminded devotion to certain brands of foods. Stouffer's mac 'n cheese. Parmesan Goldfish crackers. Green Machine.
So here's to healing thoughts that my brother quickly returns to the person he was, the Brian that everyone loves. As if you can't tell that from his Facebook page.
Wednesday, October 12, 2011
Penguins
"It's not fair that we're not penguins and I can't take the baby from you for a little bit so you can waddle around and find some food."
Monday, October 10, 2011
Baby Update
Love is in the Air
It’s dinnertime at the Spehn house in Rochester, Michigan. A time to share the day’s happenings and be thankful for all this family of 7 has.
“For all the blessings in our lives, amen,” Michael Spehn prays with his wife and five children.
Nearly six years ago, Gina and Michael Spehn didn’t think this kind of contentment and joy would be possible a second time around.
It was Christmas day 2005. Just hours after Gina and Matt Kell’s young sons opened gifts from Santa, their dad died of a rare form of cancer.
“Matt was passionate, he was funny, he was an amazing dad and he just loved life,” Gina says of her late husband.
Knowing he was dying, Matt Kell spent the last months of his life leaving behind a legacy for his wife and kids; a series of video diaries in which he teaches his boys the types of things he wouldn’t be around to teach them as they grow older. In the diaries he talks about everything from growing their faith in God to treating girls and women with respect. But with his words only on video now, Gina was left to raise two young boys as a single, heartbroken mom.
Just three weeks later, across town, heartbreak was about to knock on the door of Michael Spehn’s life. Cathy was his beloved wife and mother of his three kids.
“She has a smile that would light up the universe,” Michael says. “It’s one of those unique kinds of unique smiles that people just notice. But she was a wife and mother, better than any I’ve ever seen.”
But out of nowhere came excruciating headaches.
“We walked into the ER, and that’s when they diagnosed her with gleoblastoma, or brain cancer. And from there it was just 17 days later that she passed away.”
Two grieving spouses and 5 young kids left without one parent. Shortly after Cathy died, in their own heartache, her kids wrote a contract for their dad to sign, promising he’d never marry again, unless he asked their permission.
So how did these families become one? Cathy and Matt, both now gone, had been childhood friends but their spouses had never met. As Cathy lay dying, she had a message for her husband.
“And sort of out of the blue, she said to me, ‘Michael, call Gina Kell.’” But Michael said he dismissed it.
“She grasped my hand a little tighter, she opened her eyes and said ‘Michael, call Gina Kell, she’ll help you’ and a few hours later she passed away.”
Before long, he did call Gina and the two became a support system to each other during their darkest days.
“I couldn’t wait for the phone to ring because I knew there was going to be someone on the other line that I could lament do, and would be no judgment, there would be total understanding,” Gina says.
“When you’re the widow or the widower, people are very solicitous to your every need, they walk on egg shells, they talk in certain tones that say you’ve been damaged and I don’t want to upset you,” Michael says. “And you really crave a normal conversation. When Gina came in our life, and her boys, we interacted with each other like normal people, and it was wonderful to feel that way again.”
Their kids shared a connection no children should have to, and they became fast friends. And for Gina and Michael, as the fog of grief cleared a bit they began looking at each other a little differently.
Gina added, “First you’re my companion in grief, in this miserable club that we’re a part of, and then all of a sudden, you and I are looking at each other saying you’re an amazing dad, you’re a good strong Christian man and I’m looking at you a little differently than I was six months ago."
Marriage is something neither imagined ever doing again. But just as Cathy had left Michael a gift, telling him to call Gina, Matt had also left a gift, telling his boys in those video diaries that he wanted their mom to marry again! So when things got more serious between them, they talked to the kids about blending their families.
“We had to almost ask for permission first,” Michael explains. “We had to ask for their blessing, before we could actually ask each other formally. In fact, Michael was honoring that contract his kids had made him sign.
“They hooted and hollered and were jumping around the house, they were as happy as we were,” Gina says. So on a warm October day in 2007, almost two years after they had attended funerals, Gina and Michael got married and were pronounced Mom and Dad.
“They still hold their late parents very close, they’re very present tense, and even between Gina and myself, we get to still be in love with our spouses,” Michael says. “I’m still in love with Cathy, and Gina is still in love with Matt, and she should be. There are nine people in this household; two of them have just been called home.”
Gina and Michael have written a book about what they’ve been through. It’s called “The Color of Rain.”