Posts Tagged ‘grief’

The Bonds We Forge

Posted: April 26, 2017 in Blog
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Ahem. Me-me-me-me-me. Ahem.
“People let me tell you ’bout my best friend…”
Yyyeaah, lemme tell you about my buddy Zach. He once ate an entire box of dry Cream of Wheat. I wouldn’t let him drink anything because I was afraid he’d blow up. During his awkward teenaged years, he got tangled in my feet on the stairs and knocked me down, breaking my tailbone. He thought it was great fun when we landed on the floor at the bottom of the steps in a heap and he jumped away and jumped back as if to say, “Hey, let’s do that again!” I had to sit on an orthopedic doughnut for about three months. (Ok, occasionally I did wear it on my head. There are photos. Don’t ask.) He once raided the luggage of a house guest and ate her Welbutrin. He slept for three days. I had to wake him up to take him out to pee. He once chased my pet rabbit around the basement in a circle, faster and faster, until the bunny went running up the ramp into his cage, and Zach followed, getting his head and shoulders stuffed through the door before coming to a screeching halt, nose to nose with said bunny and wedged so tightly that neither one of them could move. I was surprised Smudge didn’t have a heart attack.
 
This guy was smart like a box of rocks. Whenever I called the vet with his latest adventure, I had to wait for him to stop laughing before he could answer my question.
 
I thought I would lose my mind before he was two.
 
Then came the days following my brother’s death when I could barely get through a day without breaking down. Zach would climb up on the couch beside me and drape his giant orange head over mine and just breathe with me for hours and I listened to his heart beat until those days passed. Apparently dogs know how to hold space.
 
Good boy, Zacharoo. Good boy.
 
“People let me tell you ’bout my best friend…”
Zach was with me until two weeks shy of his 15th birthday, an impressive feat for a 100 lb Golden Retriever. On his last morning, we celebrated with Frosty Paws and a visit to his favorite fire hydrant and a nap on his blanket in the yard with the sun shining. When he took the shot, I held his head in my hands and breathed with him, wanting him to know I was right there, just as he had been for me. That was this morning, a warm April day in 2006.
 
Sometimes I think I can still hear his heartbeat.
Zach and me

I met one of my favorite people when she was just finishing up chemo for breast cancer. She was interested in volunteering at the agency where I work, and we met to talk about the jobs that volunteers were doing and the time commitment that might be involved.

I’ve mentioned this before in other blog posts. Some people throw light. It’s a warm, peaceful feeling to be in the presence of that light. My new friend Lorrie threw light like that. She led with it. I noticed it the first time we sat together over coffee, talking about LGBT kids. She was magnetic.

When she asked if it would make a difference to the kids that she came to a drop-in center wearing a headscarf, I told her I thought the kids would place more value on the fact that she was showing up to be supportive of them—they were not likely to judge the fact that she’d lost her hair to chemo. She took her scarf off then and the fact that she’d lost her hair dimmed when compared to the animation and luminosity in her eyes.

Lorrie decided she would sit through our volunteer training, a process that requires 24 hours over three Saturdays. It’s a big time demand. While I hope that folks who attend will learn something from the staff or the youth leaders or me, it was during that training that I learned that ANY statement coming from Lorrie starting with, “Oh, Nancy!” meant that filters were off and there was no predicting what I was about to hear.

On the third day of training, I’d left a basket of fidget toys out for the attendees to hand around. It was the usual training fidget toys—stress balls, Play Doh, stuffed bears, Nerf balls, etc. Lorrie set the tone for the next several years of our friendship at that moment.

“Oh Nancy!”

I looked up from a pile of handouts I was organizing on the front table, as a stress ball made its way down the line of new recruits and landed at Lorrie’s seat. She had the ball in one hand and the most incredible twinkle in her eyes that I’d ever seen.

“Nancy!” she repeated.  “This feels just like my new boobs will feel!” She immediately turned to the man next to her and extended the stress ball, laughing. “Here! Feel this!”

I was momentarily speechless, then washed over with a wave of her light and an irresistible urge to giggle. The man who sat next to her looked surprised (although by Day 3, it’s hard to say why either of us would have been) and declined, but he started to giggle too. Then the person on the other side of her started. Then the rest of the attendees joined in.

It occurred to me that we were laughing, however briefly, in the face of cancer.

Maybe chemo should come with capes, not headscarves. I learned a lot about life force and joy from a superhero who kicked cancer’s ass twice in the time that I knew her. During the third bout, when chemo stole her hair again, she shaved her head and sent me a selfie, commenting that she thought it appropriate to share, since this was where she was when I met her, too. Like that years ago night over coffee, it is not her uncovered head that stands out in the photo. It is her eyes—bright and mischievous and daring. She was laughing, irrepressible.  It is truly Lorrie, open, vulnerable, ready for a challenge, unbeatable. Of all of the photos I keep of my friends, it’s probably the most beautiful photo I have.

She brought incomparable gifts to my job and to my life. I wrote about the impact she had on our youth group members when we honored her at the agency gala a few years ago. Over coffee at Caribou, over pizza at Lou Malnati’s, during staff meetings and retreats, from hammering out details of a grant that funded her position through me pestering her for program reports and curriculum details, to developing our pilot program for first- and second-graders, to a serendipitous vacation when we both ended up in Paris, she was a creative force. She was one of my go-to people at first, someone whose input I trusted and whose expertise in her field gave her unique perspective on our new projects. In time, she was simply my friend, one of very few people who knew how writing Urban Tidepool had affected me and with what I was struggling, including processing my pending divorce and the fall out of the people I thought of as my friends.

Lorrie Paris

We lost Lorrie just a little over a year ago. Today is her birthday. It has been an odd year of our Youth Outlook team grieving, of kids and former kids grieving, of our book group grieving, of individuals noting softly in non-sequitur, “I miss Lorrie…”  while we engaged in the day to day activities of which she used to be a part. It has been a year of making space for the folks who needed to say, “I miss Lorrie…” and then coming home and crying alone in my garden or on a walk with one of the dogs because I miss Lorrie too.

The program she developed is going strong. The “talking ball” that she would take home from time to time to wash and return is still in the fidget basket. The stress ball that started years of laughter may still be in the bottom of that basket, too. In staff meetings and trainings, we still refer to “Lorrie nights”. I can’t walk into Lou Malnati’s or pick up coffee from Caribou without thinking about her. Maybe she actually kicked cancer’s ass a third time, because she’s certainly still with us, throwing light and prompting giggles with irreverent comments.

 

If you work in social services, you know how it goes—if it isn’t documented, it didn’t happen.  This happened. So I’m documenting it. I met a superhero who was having chemo. She was irreverent and sarcastic and funny as hell. And bald. She was my friend. She was my person. I watched her change people’s lives. Sometimes I got to help. Other times, I just bugged her for paperwork about it. She kicked cancer’s ass twice and left a legend. She really should have had a cape.

I will tell you clearly and not as a non-sequitur. I miss Lorrie.

Happy birthday, my friend.

poplet-custom-personalized-super-hero-cape-w-emblem-initial-01_0

November 2, 2016

Five years ago this afternoon, I was at a local middle school speaking about LGBT youth and their developmental process. Earlier in the day, I’d learned that a former intern, my very first intern at Youth Outlook—Brian– had died, only 24 hours after learning about the death of one of the drop-in center youth. I struggled with my decision to go do the presentation, regardless. I’d been crying on and off most of the day. My eyes were bloodshot, my concentration temporarily misplaced. I debated. Finally, I put on my big boi Executive Director pants…and I went with every intention of giving those faculty members a hell of a show.

Brene Brown tells us we grow in our vulnerable moments. Three decades ago, Gail Sheehy wrote about it in Passages–like crustaceans shedding old then forming new shells, we must go through times of vulnerability and risk our most sensitive selves if we are to grow.

Don’t you love it when the universe just messes with you?

Sigh. Fine! Okay. I’m going. Suit. Briefcase. Powerpoint. I looked the part—a consultant saying the same thing that in-house people were saying but it meant something different coming from me because I worked somewhere else. My delivery that afternoon was spot on for about 80 minutes. The end of the presentation was in sight. The attendees were talking to me. They were laughing. We were there.

That’s when it happened. In the final lap of the Powerpoint presentation, the last couple of days edged their way back in and edged my focus out. First, I lost my train of thought, and as always happens when I get distracted, I became acutely aware of the attendees’ attention and just how quiet it was in the room now that I had stopped speaking. I wanted to resume, but the only images I held in my mind were an empty chair at the drop-in center group left by a child’s death, followed quickly by a heartwarming smile and a sense of the gentle energy that Brian possessed. My throat constricted.

Oh. My. God. I could not cry here in the middle of a presentation. How unprofessional could I be? This was about to crash and burn. I tried to speak, tried to force the next sentence from a series of slides that I can almost do in my sleep these days. My voice first went high, then cracked, and I stopped.

The attendees waited. They may have been puzzled. They were certainly patient.

I couldn’t do it. Another sentence failed to launch. I could feel my panic growing, sure I was about to blow whatever reputation Youth Outlook had. I held my hand up to the person sitting closest to me and whispered, “Will you excuse me for just a moment?” She nodded.

Standing just on the other side of a divider wall, I yanked my glasses off and pressed fingertips to my eyes roughly. It probably took less than a minute to compose myself and then, feeling like an absolute failure, I stepped back into place at the front of the room. The attendees returned attention to me.

I had no idea what to do. Play it down? Ignore it completely?  I had never heard of Brene Brown at that point and Gail Sheehy couldn’t have been further from my memory. Still, I thought I should offer them a real reason.

“I’m sorry,” I said, making eye contact slowly around the room. “I wanted to come here and give you a good presentation and I thought I could pull it off. Youth Outlook has had two deaths in the last 24 hours and it caught up to me.”

I couldn’t have felt more exposed than if I’d handed over my ED suit and presented in my underroos. I didn’t wait for a response. I turned back to the slides and gave the last ten minutes my full attention. If Gail Sheehy was right, I was going to grow a new shell by the time we were finished, while hoping that the agency wouldn’t suffer any longterm setback.

Wrapping up the computer cord afterward, someone touched my arm and I looked up. It was one of the teachers who’d been sitting front row for the last 90 minutes.

“Thank you,” she said quietly. “This must have been so hard. Thank you for being with us.”

As she moved past, another teacher replaced her, with a similar message. Then another.

“Thank you.”

“Thank you for letting us know. I’m sorry.”

Lightning bolt. These folks weren’t judging me. They were empathizing. The expectation that I keep it together and not let on that anything was wrong was my own. Their reaction to the fact that two people associated with Youth Outlook had just died was to support, to understand, to hold space—even when the consultant carrying a message and a Powerpoint presentation is a crab moving around on the ocean floor without their gender neutral shell.

It was that choking moment that most of us have had nightmares about, standing in front of crowd of strangers, exposed. I had every intention of giving them a great professional that day. I don’t actually know WHAT I gave them that day, because I’m mostly aware of what they gave me. Permission. To grieve. To be honest. To be human in that sense of loss. To be connected.

Grief is hard work. Pain is exhausting. No matter, sometimes my job isn’t about being a flawless professional. Sometimes it’s much more about being a flawed human whose voice can break in the middle of a presentation. Am I a better professional if I don’t love enough to feel loss? I have come to think not. As difficult as some of the days have been, I prefer experiencing those events that make us burst out of our confining shells, defenseless and frightened beings just waiting our next shell to form. If we’re really lucky, we’re surrounded by strangers holding space in a middle school classroom who will take our hands, see our grief and pain, and thank us when it happens. Those days make us better people, better professionals, and let’s face it–better crabs.

lead_courageobevulnerable

“You can blow out the candle, but you can’t blow out the fire. Once the flames begin to catch, the wind will blow it higher.”  ~ Playing for Change, Biko, 2009

I spend my days with lightworkers. I think you might know the kinds of people I mean—those folks whose very presence brings your day up, makes you feel cared about, makes you want to be around them. It’s one of the reasons I love my job so much. The opportunity to share days with people whose existence makes the world a better place is a gift.

From my friend David, I am reminded of the role of being an advocate for people’s rights, especially culturally competent healthcare. I am reminded that not everyone has access to healthcare  (culturally competent or otherwise) and I have always admired his stance on that topic.  “I want everyone to feel safe here. They should know they can get what they need here.”

When the topic first came up, we were talking about people who are living with HIV. The next time the topic came up, we were talking about people who are LGBT+. The third time, it was in reference to people who are living with chronic mental illness, who may or may not have a home, who may or may not choose to be medicated for their mental illness. The answer didn’t change, though, which speaks to the underlying value driving his words. “I want everyone to feel safe here.”

From another good friend, Lorrie, I am reminded of the courage that it takes to overcome the shame that accompanies family violence. She helped run Youth Outlook’s healthy relationships program for over a decade, teaching youth how to speak up for themselves and how to hold themselves in a place of esteem from which they could make strong choices about how they would allow themselves to be treated. She would speak of strength and renewal with reverence, calling to mind that everyone has the chance to be reborn, to be loved, to be respected within the context of every relationship.

Such friends not only bring light, as I have mentioned in other posts, but they raise the vibration around them, inviting everyone who crosses paths with them to lift themselves to match that vibration. This is what I mean when I talk about leading with your light. Last summer, I went to a conference with David, and I am now struck by the images of him walking with me on the streets of Tulsa. He radiated joy at being there, at being with me, and the prospect of what we were attempting to do in a joint project. It was impossible to spend time with him and not feel the lift. I watched the employees at his work place respond. I watched wait staff respond as well as other conference attendees who were meeting him for the first time, surrounded and (probably inexplicably to some of them) elevated.

“David, I’ve heard that there are two kinds of people in relationships,” I have told him.  “Kites and rocks. Every relationship has one of each. You’re such a kite!”

On two occasions, he put his arm around my shoulders and squeezed me and said, “Good. You be the rock. We’re going to grow old together, you and me!”

When I told him I wanted my first tattoo to celebrate turning 50, he shared my excitement and asked me what I wanted for a design. So far, he has been the only person who knew without needing it explained what “Ohana” meant and what it meant to me.

“Oh my God, that’s beautiful!” He beamed.

Surrounded. Lifted.

I noticed early on that it wasn’t just me. Other people could feel it too, evidenced by smiles, gestures, shoulders that straightened and heads that tilted upward. Sometimes just by walking into a room, lightworkers shift the energy and it catches…and spreads. People do sense that joy and they want to be close to it.

I started 2016 with a text from David on New Year’s Eve telling me that he couldn’t wait to dig further into the project that we shared and he was ready for next steps. I reminded him that we would grow old together. I, too, wanted to be part of that joy.

I left a meeting with him a couple of weeks ago and realized in the parking lot, as I was pulling away, that I hadn’t told him something very important. I paused and dug my phone out.  “I love you, David!”

“I love you back!”

From cold October evenings in a park in Naperville for Take Back the Night rallies to warm, relaxed afternoons over coffee, Lorrie poured energy into her work with LGBT kids, with rape survivors, with new volunteers seeking to give back to their communities. She could sail into a volunteer training and bring the room up with her announcement, “Of all the places I volunteer, Youth Outlook is my favorite. I cannot wait to be here on Tuesday nights!”  Bodies would shift, heads raise, shoulders straighten.

Surrounded. Lifted.

Our texts shortened over the last few months from “Driving by your house and waving!” to simply, “Loving you!”, and her response, “Loving you too.”

Had you asked me twenty years ago if I’d ever tell a coworker or colleague that I loved him or her or them, I’d have thought the question pure madness. This is what lightworkers inspire. You can’t stop it. No one can. Energy can’t be destroyed, just transformed. And spread–through our friendships, and our engagement with consumers of our agency services, and in our intentions and our wishes and our dreams.

David died last Sunday. Lorrie died on Tuesday. As far as I know, they never met each other, but the light they both brought has illuminated the path for me for more than a decade. The challenge of last week, and of weeks to come, is to recall that their light has not been extinguished. I carry it. You carry it. It doesn’t go out. It transformed and it will continue to glow in the work we do and the passion we feel. “I love you, David,” and “Loving you” would be my final words to David and Lorrie. That, alone, stands as testament that their light will not fade. It merely flickered. Advocacy, safety, rebirth, love, respect…we all get to carry it from here.

“And the eyes of the world are watching us.” ~Playing for Change, Biko, 2009

flickering candle

 

“Ohana means family. Family means nobody is left behind or forgotten.”

Simultaneous truths can be difficult to grasp, especially since we are engineered from the time we are tiny people to buy into binary systems on lots of topics. If we believe Point A, then we must not believe Point B. What happens at those times when Point A and Point B are both true for us?

I’ve wondered many times about my own experience of “family” since starting to write Urban Tidepool. It being a subjective experience, there’s no way to know how it compares to other people’s experiences of “family”, of having family and being with family. I wonder how other people attach or not, commit or not, process that movement from the outer social circle of acquaintance to the inner circle of being considered family of choice.  I assume people do that differently than I do, at least the processing part.

On a broader scale, I’ve wondered about and dabbled in researching how orphans experience family later in life. In the mental health field, we now have the ACE test that encourages clinicians to consider the later-in-life physical health implications of childhood trauma.  Most of the information that I’ve found so far on the later-in-life effects of growing up without parents focus on kids in orphanages in third world countries—certainly a respectable topic that warrants research but nothing that fits what I’m looking for.

Oddly, the comment that stands out the most for me is from a Disney movie. Well, for folks who have met me and actually watched Disney movies with me, it probably isn’t odd or any big surprise.  The comment above, from Lilo and Stitch, comes from a bittersweet scene in which Lilo clutches a photo of her deceased parents and makes that statement to Stitch in her efforts to attach to him and to have him attach to her, suggesting that she is recalling something that one of her parents used to say. We all have our own understanding and varying levels of tolerance around what family should do and be. For Lilo, it included a four-armed alien “dog” who bit his own tail and rolled himself around the room like a tire when he was upset. Hey. Who am I to judge?

Creating a family where there is little or– for some folks–nothing left of one’s biological family becomes a declaration of life. While I can’t say that my experience of “family” is like or unlike anyone else’s, it is safe to say that most of us are healthier beings if we have a sense of attachment and connection. It keeps us from biting our own tails and rolling around the room like a tire. No. Don’t ask me how I know that.  That’s a topic for another day. Or another book.

My sister-in-law once observed to me, “Most people are lucky if they go through life and make one really good friend. You’re surrounded by them.”

Damn right.

The curious part of that fact is that I don’t typically seek these people out. I have noticed time after time that the people who come to play the most important roles in my life are not people I’ve gone looking for, and in some cases, I have actively resisted meeting or getting to know them.  A partner? Not on your life! A mentor? No way! A best friend? None for me, thanks! A PRIEST? Get real! A coach?  Oh hell no! The universe has such a great sense of humor! It is seemingly unfamiliar with the trust issues that many orphans carry into adulthood and drops people on to our paths to mess with the tidy, compartmentalized set-up of our lives.

Or as a friend commented to me a while ago, “You don’t have an issue with trust. You bought the whole damn subscription.”

Again. Damn right. That happens. Ya learn to work with it.

So back to the simultaneous truths I was talking about before we meandered down Memory Lane…

Creating a family of choice as an adult is a celebratory act. We survived. Whatever it was that separated us from our bio family—death, divorce, mental illness, addiction, family reaction to our coming out, we survived it. And we came out the other side still whole enough to want to make some connections with people we care about, and still whole enough to want to be cared about. They are enormous steps for people who have purchased that subscription to the Journal of a Universal Lack of Trust to acknowledge the wound left by loss, to resign ourselves to the knowledge that nothing and no one can ever heal that wound and it’s just something we are all gonna live with for the rest of our days, to admit that we are changed by those experiences and– dammit all—despite all of that, we still want to be and appreciate being connected to other people.

It’s never an easy feat.  On my more cynical days, I ponder why anyone in their right mind would continue to pursue important relationships with people when important relationships with people are exactly the difficulty in the first place. How do we balance such cynicism, punch through the unwillingness to trust and experience closeness AND risk that loss over and over again? Granted, the later losses look different, and probably feel different as adult coping skills and cognitive development kicks in…but the risk remains. Why open yourself up for it?

Because, dammit. This is what we’re here for. It’s what makes us gloriously human.

“Ohana means family. Family means nobody is left behind or forgotten.”

So I don’t know if I experience this like other people.  Family, of origin and of choice, is both the greatest gift and the greatest challenge to face.  The connections I celebrate with my family of choice bring joy and warmth and acceptance to my life. The connection I share with my sister, my remaining sibling, allows me a sense of history. I do have a past. I was a child—or at least a very short adult. She holds some of those memories in a way that no one else on the planet will ever be able to do. It’s a beautiful thing. And simultaneous truths…the disruption of those connections summons a grief that can feel endless. The pain is exquisite and peerless, echoing previous losses as is the nature of grief, and the only way out is through. I am not embarrassed to say anymore that such grief can and has taken me off my feet.  That’s the risk each time and it’s part of the lighthouse I elected to move back from the eroding shoreline (https://urbantidepool.com/2014/11/15/moving-a-lighthouse/).

Point A.  Family is about exuberance and joy.

Point B. Family is about risking profound loss.

Simultaneous truths. Every day, I commit to making space for both of those concepts and seek the balance between the two, while not biting my own tail and rolling around like a tire. No. Sorry, there’s no photo of THAT.

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A yahrzeit candle burns in the kitchen and throughout the day, I’ve pondered the intimacy of sharing the experience of someone’s death. Intimacy seems an odd word and yet nothing more suitable comes to mind. This sharing shapes me. It might shape any of us, I think…the piercing loss that dulls over time to add layers to who we are as people, to become, hopefully, a reason to be grateful.

I had a brother once. For that, I am grateful. He took me fishing when I was a kid and he taught me how to bait hooks and tie leaders. For that, I am grateful. He told me one day that my parents would be very proud of me and that they would have loved me, no matter the whole gay thing.  For that, I am grateful. At the end of his life, he asked me to be part of making the decision to bring him to peace, one of the most difficult and the most beautiful things I’ve ever done. For that, I am grateful.

 

An excerpt from Urban Tidepool

 

March, 2002

 

I talked to Chick Monday afternoon of Easter week, right before I left my office for a meeting. We’d spoken more by phone in the last nine months, with him waiting on the transplant unit at Temple University Hospital for a new heart, than we had probably spoken my entire life.  If I still lived on the east coast, it would have been so much easier to spend time with him. The year after our brother Michael died, I had accepted an executive director position in a small agency working with gay youth in the Midwest. I was half a day away and left with phone calls and occasional emails as our primary means of communication.

“They’re still trying to figure out what this infection in my lung is,” he said.

“So what are they doing?” I asked, piling the forms I needed for the upcoming meeting on top of my day planner.

“They’re worried about doing a biopsy. With the one lung, that’s always a big risk. All the blood work is showing that it’s something but they don’t know what.”

He and my sister-in law,Jedda, had fought hard for this transplant option. Since he had lost his other lung, he was considered very high risk for the transplant. Other transplant programs had turned him down. Temple had been his last chance. He was so sick now, he had moved onto the “heart floor” because their home was far enough away that if anything happened with his heart, he would not survive the trip to the hospital. After Michael’s death, he had been repeatedly hospitalized and we had had some close calls, but they’d always managed to stabilize him and send him home again. The message, prior to coming to Temple, seemed to be that they were sending him home to wait it out and be kept comfortable but the message at Temple was that there was still hope of living for years post-surgery.

We had spent many evenings during this nine month stretch planning the fishing trip we would take when his surgery was complete. He wanted to charter a boat off the Carolina coast and I wanted to land something as big as myself that took all day to get inside the boat. He had explained the whole process to me: how many weeks he’d remain inpatient after the new heart was put in, how many weeks after being released from the hospital he had to remain within a certain geographic area to the hospital in case his body rejected the heart and he had to be med-evac’ed back, how long before he’d be cleared to go out on a fishing charter. I hoped that within six months to a year, he’d be cleared. The only wildcard was when he’d have the new heart put in. We were nine months into a wait that averaged three hundred sixty four days. The most fun part was teasing him about how those poor doctors were ever going to find a way to transplant something into him that he’d never had in the first place.

“I’ll find out more from the cardiologist tomorrow.”

I checked my time. I needed to leave for my meeting.  “I’m going to Syracuse tomorrow for a few days. I’ll call you tomorrow night when I get in to see what you found out.”

“Sounds good. Drive safe.”

“Yeah, I will. Love you.”

“Love you, too, babe.”

*****

 

I slept in a little the next morning and got started on my drive later than I really wanted. Zach occupied the back seat, asleep with his big head on his giant golden paws for most of the twelve hour trip. We were approaching the second anniversary of losing Beeb, whom I’d had for fifteen years. Zach was still beside himself without her and he went everywhere with me.  It was after ten when I arrived in the Syracuse area. It was too late to call Chick. The man needed his beauty sleep. I unloaded my car into the guest bedroom at my friends’ house and Zach and I went to bed.

The following morning, I called Chick’s hospital room for my update. My nephew “Ours” answered.

“You need to come now,” he said, his speech pressured.

I was suddenly wide awake. “What happened?”

“He crashed Monday night. They don’t know what’s wrong. They induced a coma and they’ve got him on a ventilator. It’s bad. If you’re coming, come now,” he repeated.

It was always bad. Last year, he’d had a reaction to one of his medications and had hiccups for nine days. If his blood thinner medication was the slightest bit out of whack, he got a nose bleed just sitting up in bed. He’d had two strokes since Michael died; we worried about every headache. Nothing was simple and it seemed some days that every function of his body was controlled by the medical field.

I was nodding against the phone as if Ours would be able to feel it and know I was agreeing. “Yes, I’ll come. I’ll be there this afternoon.”

When I hung up, the friends whose home I was visiting were both standing there, waiting expectantly. “I have to go. It’s bad and if I’m going, I have to go now.”

We’d done this before. This was the third time in the last two years that I’d gotten the “if you’re coming, come now” call. Each time, I dropped what I was doing and took off for Pennsylvania from wherever I was.  Each time rocked me. Each time, we had no idea if he would survive.

I gathered up my belongings, jamming everything back into my overnight bag. When I dragged it downstairs with Zach lumbering after me, my friends were in the living room, car keys in hand.

“We’ll drive you,” Ronnie said.

“You don’t need to do that-“

“You’re tired and you’re upset. You were on the road all day yesterday. We don’t want you on the road alone today. I called Ma and she’s coming to stay with Zach, so you can leave him here,” Holly informed me.

“No, I can’t ask-“

“You didn’t ask. Let’s go.”  Holly opened the door and gestured me out.

*****

                It was overcast most of the drive and raining lightly in a few places as we drove through the Poconos on the northeast extension of the Pennsylvania turnpike. For late March, this was fortunate. We could easily have been driving through a blizzard. The trees lining the roads were still bare, struggling to bring up their first spring buds. There wasn’t much to look at, so I slouched in the back of Ronnie’s car, with my head against the window, staring at the back of the driver’s seat.

A couple of hours into the five hour drive, I mumbled, “I don’t know where I’m staying when we get there.”

Holly turned. “Ronnie called her cousin just outside the city. We’re all going to stay there tonight.”

“Are you coming to the hospital with me?”

Ronnie responded this time. “Yeah. Why don’t we take you there and we’ll find something to do until you want to leave. Or until they throw you out. And then we can go to my cousin’s for the night. We’ll bring you back in the morning.”

I couldn’t think through the logistics. I hadn’t contacted my sister Pat to tell her I’d be in the area.  I was hesitant to assume it would be okay for me to crash there, let alone me with two strangers. Beyond that, I’d have to return to Syracuse some time later. My car was in Holly’s driveway and Zach was in her living room, probably asleep on the couch beside Holly’s mom at this very moment. I decided to go with Ronnie’s logic and perch with her at this alleged cousin’s house in the suburbs.

They dropped me at the hospital entrance. I walked in alone.  Approaching the information desk, I heard the echo of Ours’ words: “If you’re coming, come now.” Immediately behind them, bathed in hospital-scent disinfectant: “It’ll be okay. Just don’t cry.”

Over the rumble of both, I asked for Chick’s room.

“Only immediate family may visit.”

“I’m his sister.”

Jedda jumped to her feet when I walked in. She said nothing, but put her arms around me and rested her head on my shoulder. I hugged her tight. Her face was gaunt, her eyes red, the lids raw looking. I was sure she hadn’t slept. I took her hands and prodded her back to the chair where she’d been sitting.

“What have I missed?” I asked. I squeezed past her legs and along the side of the bed so I could get closer to Chick. I kissed him on the forehead.

(“How you doin’, Chuckles?”)

It sprang out of nowhere, with the image of the father in his dinner-napkin-nightgown and his pale grey skin, my sister just finishing his shave that Saturday morning when he’d had his first and second heart attacks.  Chick was that color now, that ghastly colorless color, under a stubble of beard. Our father had been exactly three months past his fifty seventh birthday when he died. Chick was just six weeks past his.

She cleared her throat.  “He crashed not long after he talked to you. He was having trouble breathing and then he stopped altogether. They keep him sedated so he doesn’t fight the vent tube.”

I eyed the white tube taped to his mouth and run down his throat. The machine across the bed breathed for him. The dialysis machine next to me filtered his blood. Everywhere I looked, machines beeped and pinged and measured and dispensed and maintained. Everywhere, except when I looked at Jedda, and I knew that science didn’t have a machine that could measure what was going on for her.

“He said they were still doing tests about the infection in his lung?” It came out as a question.

“We don’t have the results yet.”

“Have you spoken to the cardiologist?”

“Yes, and he’ll be back first thing in the morning.”

We sat silently after that, listening to the machines live for him. On a stretch break, I stepped out long enough to call my sister and gave her the same message Ours gave me. If you’re coming, come now.

“I’ll be there,” she promised.

Holly and Ronnie appeared from nowhere at the end of visiting hours. I had no idea where they’d been for the last few hours.

“Babe, where are you going to stay tonight?” Jedda asked. She didn’t need to worry about that; she had lived at the hospital with Chick for the last nine months, sleeping on a cot beside his bed or in the lone chair.

“With my friends. I’ll be back first thing in the morning, okay?”  I kissed her on the cheek and squeezed her hand.

At Ronnie’s cousin’s house, we piled into the living room. I dozed twisted sideways in a chair and a half with an ottoman. My back ached. My neck ached. My soul ached. I didn’t want to do this again, this loss. I didn’t want my family to have to absorb it again. There wasn’t much of us left.

The unit director was on the floor when I arrived the next morning and she told us that for the next few days, until Chick’s test results returned, we had round the clock access to him. He would be moved to a different room so we didn’t disturb anyone and we could come and go as we needed to. That didn’t feel like a good sign.

Pat and I rotated with Jedda, two of us sitting bedside at a time, giving the third one a break to walk around, make a trip to the restroom, or go on a coffee run which was how all three of us remained coherent. I knew what we were doing, even if the doctors weren’t saying it. I knew death watch when I was sitting it.

We switched seats with Jedda so she could make some phone calls. Pat took her chair.

“Oh brother dear, the sisty-uglers are here to visit!” she called out, sing-song.

“The hospice nurses have told us when the guys staying in the group home are in comas, the last thing they lose is their hearing, so he can probably hear you,” I pointed out.

“Yeah? Good!” She started to sing Chickery Chick to him, a song from 1945 that she said the mother had sung to him when he was a little boy and where his nickname had originated.  I wondered what it was like to have a mom who sang to you. Before I could get too far into my contemplation, Pat stopped singing and began hunting through her bag for Kleenex. She couldn’t finish the song. I put a hand on her shoulder and she covered it with her own.

“Did I ever tell you,” I asked, “about the time I called his hospital room and told him I knew how I wanted to die?” It seemed as good a time as any.

She shook her head, still dabbing at her eyes.

“I call him every few days to tell him some stupid joke just to make sure he laughs once in a while. So I called him this one day and said, ‘Hey, you know how everybody in our family dies early?’  And he said yes. And I said, ‘I’ve decided how I want to go!’ He said, ‘Whaddya mean? How the hell do you want to go?’ So I told him. ‘I want to die of a broken neck. With Tina Turner’s legs wrapped around my head.’”

Pat gasped. “You did NOT!”

“Oh yes I did!” I said. “Then I hung up on him. Jedda told me later he sat there with the phone in his hand for about eight seconds, and he just started to roar. She said he laughed until he cried. When I visited him the next time, every damn nurse on the floor greeted me with, ‘So yoooouuu’re Nancy!’”

Pat was dabbing at her eyes again but it wasn’t sadness this time. Two feet in front of us, Chickery Chick’s machines continued to live for him.

*****

 

I slipped out to use the restroom and when I returned to Chick’s room, Pat and Jedda were both gone. As I crossed the threshold, one of his machines started to beep loudly and the signal changed on the screen. Startled, I turned around to call for a nurse but before I could say anything, blue scrubs passed me and poked at the machine.

“Is he okay?” I asked, knowing it was a relative term.

“Everything’s fine,” he said. That was also relative. He angled around me and Chick and I were alone.

I pulled the chair closer to the bedside. “Did you hear all of that?” I asked. “It was like you were a game show contestant, all those machines beeping and pinging!  I’m almost certain you just won a goat on a razor scooter!”

I knew it was just a reflex, but his left eyebrow raised and then lowered. Did he know I was here? I sighed and scooted to the edge of the chair so I could reach his hand. I picked it up, limp and warm, and wrapped both of my own around it. For a moment, it was silent. Then remembering that he could probably hear me, I decided to talk to him.

“You’ve been doing this for a long time. I know you’re tired.” I rubbed his forearm. “If you’re staying because you’re worried about Jedda, I’ll be here for her. I won’t let anything happen to her. If you need to go so you can rest, you should go. I got it.”

I didn’t expect an answer. I pressed the back of his hand to my cheek, our hands palm to palm. My chest ached.  Did you know? … Did you know what happened in that house? Did Michael ever tell you the truth? Do you know I don’t want to lose you? My family is almost gone. I don’t want to do this with you too. But if you need to go, it’s okay and we’re okay and I got this.

When Pat returned a few minutes later, I gave her some time alone with him.

*****

I spent Thursday night at Pat’s house, borrowing Bob’s old room again as I had when I came back for Michael’s funeral.  We returned to the hospital Good Friday morning. Jedda was in a huddle with the cardiologist and a couple of other doctors including the unit director, when we approached.

“…and you said we would have access to my husband round the clock!”

“Yes, Mrs. Mullen. Those are the orders.”

“Well, I’m telling you, if I buzz to be let onto the floor one more time and get told to come back in ten or fifteen minutes, there’s going to be a problem!”

“Which nurse is telling you to wait? They’re all aware of the plan.”

“The Indian nurse. She has sent me away several times telling me they’re in the middle of something or now is not a good time—now is the ONLY time I have! If she tells me one more time to go away and come back, I’m going to slap that goddamned dot off her head!”

The director pivoted sharply a half turn away from us and cleared her throat. I realized immediately she was fighting not to laugh.  This would not be the time. I put my hand on Jedda’s arm.

Turning back with a straight face, the director said, “Mrs. Mullen, I will speak with the nurses and this will not be a problem again. I will be back to see you this afternoon to go over Major Mullen’s test results.”

Jedda looked at me, glancing between me and Pat, and burst out laughing. She sounded half-hysterical.  I stepped closer and put an arm around her.  “You okay? I think you got your point across!”

“I’m okay. They can’t keep sending me away!”

“No, I think you’ve made that really clear! Can I get you some coffee?”

She shook her head. “Maybe later.” She turned in the direction of Chick’s room and we started our new day of watch.

When the director returned, we gathered in one of the family lounges reserved for private conversations.

“Unfortunately, at this time, we are unable to identify the masses in the Major’s lung.”

“What does that mean?” Jedda asked. “It’s not cancer?”

“We cannot ascertain that it is cancer.”

A collective sigh sounded in the room.

“However, we are also unable to ascertain that it is not cancer, and that is just as troubling.”

“Then you think it could be?”

“We don’t know.”

Confused and restless rustling came next.

“What are our next steps?”  Jedda asked quietly.

The cardiologist glanced around: Jedda, Ours, Pat, me, back to Jedda. “With any kind of lung infection that we cannot identify, we cannot pursue the Major’s transplant.”  A pause.  “We have to remove the Major from the transplant list.”

In case any of us had not understood that.

Jedda flinched as if she’d been slapped.

“The Major did not wish to be kept alive by artificial means.”

“Oh, my baby,” Jedda moaned.

“It’s time for you to review the Major’s advance directives. You may want to think about calling the family together.”

No one spoke.

“I’ll make sure the chart is available to you. There’s no rush, Mrs. Mullen. We can do this anytime this weekend.”

“What will happen when we turn off those machines?”

“He may live a few hours. Or a few days. Or a few minutes.”

I swallowed hard against the coffee rising up my esophagus. Guess we’d find out if he was tired enough to stop fighting.

***

 

I was surprised when Jedda took my arm and walked me toward the nurse’s station. “There’s something you need to be aware of.”

The nurse handed us the binder open to Chick’s living will. Chick had designated Jedda the primary person to make his end of life decisions, with me listed as his secondary.  Me?! My heart sank through the floor.

“He knew you would do what he asked for,” she said.

I flipped through the pages. No artificial means of support. No heroic measures. Do not resuscitate. This was clear. If it came to being kept alive on life support machines, Chick wanted to die.

Chilled, I handed the chart back to Jedda.  “Who do you need to call? And how long will you give them?”

She gave them until Sunday.  On Saturday, I returned to Syracuse to get my own vehicle. On Sunday morning, Jedda called while I was having breakfast with Holly’s mother to thank her for caring for Zach.

“Everyone will be here by this afternoon. Do you think we should do this today?”

“Yes. If everyone’s had their chance to say good bye, we have to.”

After breakfast, I went back to the hospital, leaving Zach with Holly. Pat was already there. Michael’s wife, whom I hadn’t seen since his funeral, had come.  All three of Chick and Jedda’s kids, His, Hers and Ours, were there.

At a few minutes after eight pm, Jedda, His, Hers, and Ours, Pat, and I crowded into the tiny room. The doctor and nurse didn’t speak to us as they worked to disconnect all of the beeping and pinging machines that had given us extra days with Chickery Chick. They dimmed the lights on the way out and left us alone.

In the absolute silence that followed the last machine shutting down, Pat reached across the bed and we joined hands above Chick’s legs.

At the top of the bed, Jedda put her hand on Chick’s chest, rubbing gently, her nail beds bloody. “Breathe, baby. Please breathe.”

“Send him home with something he’s familiar with,” Pat whispered, squeezing my hand.  “Hail Mary…”

I put my free hand on his thigh and she put her other hand on his opposite thigh and I joined her in a prayer I hadn’t said in two decades to a god I no longer believed in.

What did you know?

Doesn’t matter. Go ahead. I got this.

And we sent Chickery Chick home.

######

It was around now, in 2002. I had a brother once. For that, I am and always will be grateful.

Chick

 

 

 

Conveniently Unconscious

Posted: November 10, 2013 in Blog
Tags: , , ,

Less than a month ago, in the midst of planning for my agency’s gala, I reached out to a youth who had attended the previous year to see if she’d be able to join us again.

Less than a month ago, she responded that she and her mom would be thrilled to attend.

Three weeks ago, I was at the registration table on the night of the event when that youth and her mom appeared, ready to sign in to enjoy the evening. We spoke in the hallway, them grateful for the invitation, me grateful that they’d make the long trip from home through Friday traffic and construction to spend this evening with us.

Two weeks ago, the mom contacted me through Facebook, leaving me a wonderful thank you note about being there that night, expressing her desire to get more involved but explaining her time commitments. She went on to talk about the changes she was noticing at the school where she teaches and on the college campus in relation to LGBT issues, particularly around people’s growing comfort to be seen as who they really are.

Two weeks ago, I wrote back to her, first thanking her for her note and then talking about future possibilities for how our work, our mutual vision, might cross paths in the future, no matter if she was officially a part of Youth Outlook’s volunteer pool or not. It was a exchange of hope, of brightness, of plans, of a commitment to something about which we share a passion, for her child, and for LGBT kids in our community.

Yesterday, I received a note from a colleague who thought I might want to know.

Yesterday, the mom who sent such a beautiful, inspiring note died. 

Today, I sit with this information, contemplating such chaos and the loss of such a strong ally on her child’s life. I marvel at the timeframe of having spoken to her, a healthy, able-bodied person, just three weeks ago. I picture her child standing at a hospital bedside just across town and think about their opportunity to say goodbye. And I marvel at how we move through our days deliberately unconscious of the fact that this might be the last time we speak, or the last message we exchange with the people who mean so much to us.

Today, it’s glaring, this question. If we did know, how would we love?

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