Indecision

Before David got leukemia, I had a habit of driving down to the New Jersey/New York area regularly. I would make a loop, staying in the Bronx with Peter, Xiomara, and Andrew, then driving to New Jersey to be with my parents. On my way back home, I’d stop by and see my brother, Mike in his residential facility. With David’s illness, those trips stopped. Sometime after his death, I resumed the trips. Mom and Dad had both died, so the loop changed: I’d visit Mike in New Jersey, feed him supper, drive to Manhattan to have supper with R’el, then onto the Bronx to spend a few days with Peter, Xiomara, and the kids.

Mike died in January, a week after I had visited him in his New Jersey nursing home and made the loop. In February, R’el and Peter’s family went to Florida for February vacation, so I took the month off. Next week, Jim and I are going to take a two-day trip to the Bronx. My first solo trip since Mike's death will be in May. I’ve been paralyzed about it. It should make things simpler, to drop the trip to New Jersey. But it makes it more complicated emotionally.

Isn’t it an odd thing. Much like my indecision about which support group to attend, or whether to just go home, eight days after Mike's death, the question of how exactly to do these trips, the logistics, the when and where, overwhelm me. I emailed R’el with my dilemma and she cheerfully wrote back, suggesting travel options and offering to look into anything I needed help with. All of which I could have easily researched myself, but which seemed beyond my capacity.

A friend of mine at Compassionate Friends, my bereaved parents’ support group, said she thought she’d been holding it together until she looked at a restaurant menu and realized she couldn’t decide what to order. Yes, it’s exactly like that.

For our monthly family book group, we read and discussed Remains of the Day by Kazuo Ishiguro. Jim and I also watched the excellent 1993 film, starring Anthony Hopkins and Emma Thompson. The main character, Stevens, is a butler in a great English country house in the 1920s to 1950s. He is extremely proper and reserved: he values “dignity” above all else, including human relationships. It’s a heartbreaking story. At times of great emotional crisis, all Stevens can express, even to himself, is that he is ‘tired’. That’s how his emotions find expression. For me, indecision is the expression of my grief.

Black Armbands

A few mornings ago, I woke up and lazed in bed with my eyes shut. I’m not sure how awake I was. I just tried to feel comfortable in my skin. As I finally opened my eyes, I let them stare and was immediately reminded of seeing Michael in his bed at the nursing home, awake, eyes open, curled up on his left side, staring at his knees. I felt a kinship. I felt a peace that I hope Michael felt.

I want to be at peace.

I think I have to name this grief: that it has to be labelled, has to look a certain way. “I don’t know how I feel”, I keep saying. But I am feeling whatever I’m feeling. The label isn’t important.

A friend of Jim’s, commenting on David’s death three and a half years ago, said that in the 19th century, people were not expected to take on social obligations for a year after the death of a close family member. Wikipedia says British siblings worn mourning clothing for six months. Michael died less than a month ago. Maybe I need to get my psychological black armband on.

When I say, “I don’t know how I feel,” I think that if it doesn’t feel like sadness it doesn’t ‘count’. I can’t use it as an ‘excuse’ not to do something unless it has me doubled over in pain.


Carl emailed everyone a sketch for a stained glass design he is working on. It's three angels: Dad and Mom with a smaller, child angel between them: Michael. Carl  wondered what color to make Michael’s angel. Maggie reminded us that Mom made an afghan for Mike that was like Joseph's coat of many colors. She had made afghans for each of her children as they married and used the remnants for Mike's. It's wonderful symbolism: we each are a part of him, he's a part of each of us. Years ago I cross-stitched "Merry Christmas" in German: Frӧhliche Weihnachten, and gave it to Maggie. Since our last name is Hazen, I hung two stockings on each of the four Hs: green for Maggie's, purple for mine, brown and blue for Carl's, yellow for Timothy's, red for Steve's, a blue one for Mom, a red one for Dad. And a mix of all the colors for Michael's, to go between Maggie's and mine.

Yes, Mike was a part of each of us. He helped make us who we are.

Processing grief

Wednesday, Jan 30, 2019, eight days after Michael's death

I debated about whether to go to DBSA-Boston tonight. I left the Lynnfield Family History Center, where I volunteer, at 6 p.m.: plenty of time to make the 7 p.m. support group meeting. When I arrived home, I realized that it was Mill St Open Mic Night, so groups wouldn’t start till 8 p.m. At about 7, I got my coat on and went out the door. The wind was whipping snow onto the porch and the flag was flapping wildly, cracking like a whip. It was much colder than a half an hour before. So, I went back inside. Sat at my computer, then decided that I shouldn’t be a wimp. These are my friends: I should be there for them.

When I arrived, the last performing group was singing “House of the Rising Sun”. I leaned against a pillar, not wanting to commit to a chair. The group coordinator walked by and told me that G. was facilitating the Newcomers Group, which I often do. I thought about leaving, but at home I had decided that if I didn’t facilitate I should go to a group and talk about my weird state of mind. I was undecided. I thought I’d go to the Depression group: the Mania/Bipolar group can be pretty energetic and might not be the best place for a discussion of grief. I approached the room of the Depression group and saw a few empty seats, but hesitated. I turned around and walked toward the area where the Mania/Bipolar group was forming. There was a large square pillar between me and the circle of chairs, easy to hide behind, and I stood for a minute, uncertain of what I wanted to do. I turned around and walked toward the Depression room, but there were no longer any empty seats. I turned and walked towards the exit. Maybe I should just leave. But I drifted back toward the Mania/Bipolar group. Seeing friends around the circle, I decided to risk it.

At my check in, I said my younger brother had died last week and I just wasn’t sure what I felt. I couldn’t articulate it in a few words, so I said, I’d like some time after. That’s the protocol: check-ins are for a brief update, after which we can spend more time focusing on issues. The check-in continued, and then the facilitator asked me if I wanted to speak.

I said I wasn’t sure how I felt. Perhaps it was something about the fact that in the past 5 years my mom, then my dad, then my son died. Perhaps I was protecting myself from the pain. I wasn't having the double-over-in-pain reaction I'd had when my son died; I didn't want to have it again; it was awful.

T. said, give yourself time, lots of time. He said that when his mother died he didn’t feel anything at first. Several months later something reminded him of her and he cried for an hour.

I know one thing that complicates my feeling: I feel guilty that I’m free of the burden of visiting him every month.

In November I met a mother at church who’s young adult daughter had been killed in a bicycle accident. When I saw this mother, desperate and grief-stricken, I recognized that I am no longer in that desolate place. I fear that facing the grief of Michael’s death will send me back again.

Thursday, January 31, 2019

I’ve been in shock. I’m still in shock. T., my friend from DBSA, pointed this out to me after the meeting last night. And that’s exactly what it is. I’m in shock from my younger brother Michael dying. I’m also feeling the shock of his life. All those years of limits on him: physically being delayed in walking and talking, never being able to do the things we take for granted: middle school, high school, college. And then, after he came out of the state of constant seizure when he was 13, more limitations. I lost part of my brother that summer. And have been slowly, over 46 years, losing him further.

Tuesday, February 5, 2019

I just got home from Compassionate Friends, my support group for grieving parents and siblings. I told them about Michael and about my experience at DBSA. I've never been so indecisive about going to a group as I was last Wednesday. The facilitator could identify. She said she had felt, after her son died, that she was holding it together, until she went out to dinner and stared at the menu, unable to make a selection. Exactly.

I'm grateful for the connections I've made, the friends I have, at these two groups. I have a place to go to process my feelings and not be judged. Not that anyone anywhere is judging me, except myself.

(Name initials have been changed to maintain confidentiality.)

Michael John Hazen, 1959-2019

Tuesday night, January 22, I got a call from my brother, Carl: My younger brother, Mike had died. Jim and I had planned to spend the next day with Mike but stayed home instead and made plans to drive to New Jersey Thursday evening for a Friday wake and Saturday funeral and burial.

Carl had asked me, before Mike had died, if this was very hard for me. “It’s sad, but not devastating.”

Grief after Michael’s death isn’t like anything I’ve ever experienced. And, of course it isn’t. I’ve never been at this place before: my mother has been dead for 5 ½ years, my dad 4 years, and David 3 ½. And now my disabled brother has died at age 59.

I keep looking over my shoulder, wondering what this new grief looks like. I’m not having grief attacks; I don’t double over with pain. There are no tears; just brain fog. I manage my routine, but I can’t seem to focus, settle down, or concentrate. For a week I’ve wanted to write memories of Mike, but I can’t find many. They are buried deep underneath 40 years of living away from Michael. I hope if I keep listening, they’ll come to me.

For the funeral on Saturday, January 26, all of Michael’s five siblings, several nieces and nephews,, three grandnieces and two grandnephews were gathered. On a bright January day, his body was buried in my parents’ plot. In a few months his death date will be carved into the headstone at St. Mary's cemetery in Perth Amboy, New Jersey.

I’ve always known that our family was different, because of Mike. We each had to take our turn watching Mike, keeping him out of danger, but Mom and Dad made living with Michael perfectly natural for us. They loved Michael and fought hard to get the best for him. For them it was a strange and bewildering new world. For me it was the way life always had been.

I grew up more responsible and compassionate because of Mike. Carl said, at the wake, that Michael changed everyone who met him. He had a sweet innocence about him. If nothing else, Michael could help each person realize their blessings, the bounty in life that they had. The things he couldn't ever have.

My little brother, Mike

My younger brother, Mike, was a happy child He loved to run and play, sing the alphabet, and talk. He had a great sense of humor and could make us laugh.

When Mike was an infant, it became apparent to my parents that he was severely developmentally disabled. My mom would recount how the pediatrician reacted when Mom voiced her concerns that her baby, Mike, was not passing the normal milestones. She was told he was ‘within normal limits.’ That infuriated her. Even thirty years later, describing this would raise her hackles. As a skilled mother of four children, and a well-trained registered nurse, she was well qualified and competent to assess her baby’s lack of progress. Unfortunately, she was right. At his best, Mike gained the intellectual capability of an average three- or four-year-old.

His gait was uneven from cerebral palsy, but that didn’t slow him down: he was full of energy and vitality. He has epilepsy and when he was thirteen, he went into a state of constant, uncontrollable seizure. He survived but was never the same. He eventually had to be in a wheelchair all the time to prevent a fall during a seizure. Even now, with seizure medication, he often has a small seizure while I am visiting him. He hasn’t spoken for many years. Over the years since then his health has declined.

In the past year, he has lost a lot of weight and had several illnesses. He can no longer sit up and must either be in bed or in a reclining wheelchair. He needs to be spoon-fed. He lives in a nursing home, near one of my older brothers, Carl.

Mike has been especially lethargic for a few weeks. Today a palliative-care doctor confirmed what we all have known on some level: Mike is dying.

Mike has blessed many people over his 59 years. As I love him, he continues to give me the gift of a deeper ability to love and have compassion.

Being an older sibling can be a character-building experience, from the jolt of being displaced as the baby of the family to the  (hopefully) eventual overcoming of the attendant envy. Growing up with a little brother who never was older than three or four gave me many opportunities to give care and gain responsibility.

When Mike was about two years old, Mom and Dad decided to try a doctor in Boston who was specializing in developmental disabilities. I wasn’t part of that decision, but I do remember the result: Mike got to fly ON AN AIRPLANE to BOSTON with Mom. As a four-year-old, I had never been to Boston.

Now it makes me smile. Much like the older brother in the Prodigal Son, I envied my younger brother. As an adult, I understand that Mike has never had what I have: a healthy brain and body.

Mike is truly without guile. As a child, he could be naughty, never mean. He was childlike in all the best senses.

Of course, that meant he needed the tending of a three- or four-year-old. He could eventually dress and feed himself, and walk down the sidewalk, but he had to be watched to make sure he didn’t run out into the street.

I believe that we all lived as spirits before our birth. As newborns we are incapable of doing wrong. We develop a conscience and with it both the ability to do evil and the desire to do good. Gradually an average child is able to recognize right and wrong and act with some responsibility.

Mike has never attained that level. When I was a child, my mom taught me that Mike is assured of going to heaven, because he doesn’t have the capacity to do evil. The question of this mortal existence is whether I’ll make the choices necessary to live in heaven with him.

Mike has been my inspiration. I believe he will be whole, in body and mind, after his mortal life ends. I want very much to be with him in that glorious state.

Worst-case Scenario

I was first introduced to cognitive behavior therapy (CBT) by David Burns, in his best-seller, Feeling Good, where he identifies10 cognitive distortions. I practice all of them on a regular basis, despite years of 'understanding' their negative effects. Fortune-telling, a subset of Jumping to Conclusions is perhaps my favorite.

Last week I spent a beautiful spring day in New Jersey with my sister Maggie, who lives in southern California. We visited our disabled brother, Mike, at a LTACH (Long Term Acute Care Hospital) in Newark, then drove 22 miles south to our parents’ grave in Perth Amboy, provincial capital of the colony of New Jersey. We planned to meet another brother (we have four), Carl, for supper at Ruthie’s Bar-B-Q and Pizza, in Montclair. Susan had told Maggie that parking was tight. As I drove the 26 miles north on the Garden State Parkway, I struggled to talk myself down. To avoid rush-hour traffic, we planned to arrive at Ruthie’s 2 hours before our date and take a long walk in the lovely township of Montclair. If we parked in their parking lot so early, would someone from the restaurant notice us walking away and call a tow truck? My attempts to quiet my mind failed, so as we got off the parkway, I admitted my fears to Maggie.

“You always go for the worst-case scenario, Mary.”

I was taken aback. I recognize (sometimes) my modus operandi, but I didn’t realize I was so transparent about it.

As it turned out, there is no parking lot at Ruthie's and we parked on the street. Checking my GPS, we found Eagle Rock Reservation and drove to the 9/11 memorial with it's stunning view of the NYC skyline.

Back at Ruthie's, we again parked just across the street and enjoyed a lovely supper with Carl before I headed back up to Lexington.

What's your quirk that is obvious to everyone around you? (or at least to those who love you)?

Happy Birthday, Victoria!

Two years ago

Monday, August 3, 2015, David’s white blood cell count had risen from 1 to 8.29, concerning but still low. But the Thursday blood draw showed the counts had risen to 130. For an older person, that would be lethal. With a 27-year-old who had been Army-fit just 17 months ago, it was impossible to know how long he had, but I pressed Dr. Fathi: he told me he didn’t expect David to live more than a few days. People sometimes complain that doctors predict outcomes and are wrong; I was very grateful for his best guess.
Sam arrived Saturday from California; he hadn’t seen David since April. Matt had accepted a job offer at the admissions department of Clark University in Worcester, less than an hour away from us. So, he put most of his belongings in storage in Chicago and drove home, arriving Saturday afternoon.
Friday night Jim slept on the floor next to David’s bed; Saturday Sam slept on the couch nearby. David alternated between sleeping and lying quietly awake, reading The Economist magazine in snatches and sipping warmed honey water. For weeks he’d had throat pain; now he complained of hip pain, probably a result of lying still too long. Martin, the weekend hospice nurse, didn’t expect it to go away.
Annie arrived home from Beijing Monday night, August 9th.


David’s last days were sacred and intensely sad. I am so grateful we were able to provide a peaceful place for him to die.

August 12, 2017

Victoria was born 40 minutes after David died.  Approaching the second anniversary of David’s death, and Victoria’s second birthday, I was ready to make August 12th a celebration of Victoria’s life and October 4th (David’s birthday in 1987) a celebration of David’s. We plan to hold an annual blood drive for MGH in his memory on the second Saturday in October. (Let me know if you're available.)

Since Victoria’s birthday fell on a Saturday this year, we spent the day at the Bronx Zoo. We picked Matt up in Worcester and found street parking just outside the zoo. (It was because Xiomara was in the car: she's the parking space queen.) At the children’s zoo, Victoria proved fearless as she enthusiastically held out her hand to let the sheep and donkeys fed directly from her hand. A mother chided her six-year-old daughter, "See, that little girl isn’t afraid." I felt sorry for the older girl.

At a picnic table we ate Xiomara’s chicken salad, finishing off with some (very tasty and gourmet) vanilla cupcakes I made. Then we watched the sea lion feeding and show. By closing time I was tuckered out: I had only gotten 5 hours of sleep (anticipation insomnia).

The early evening was harder. We visited my younger brother, Mike, in a hospital in Paterson, New Jersey. A kidney infection had caused extremely low blood pressure (79 over 54).

Mike is severely intellectually disabled. As a child he learned to walk and talk, recite the alphabet, and feed and dress himself. But at age 13, his epilepsy got out of control and he went into a state of constant seizure. When he stabilized, he was never the same. For many years now, he has been wheelchair-bound and unable to speak or do most ADLs (activities of daily living).

It was hard to see Mike in a hospital bed with various tubes entering his body. I wonder what he thought, how he was handling the unfamiliar environment and strangers doing strange and sometimes painful things to him.

The visit brought back memories from May of 2014: while I was in Pennsylvania to walk a half-marathon and then visited my dad in New Jersey, David got a C-diff infection and almost died. The surgeons removed his bowels. When I returned to him in Bethesda, I was confronted with a horrible sight: my son unconscious in a SICU bed, his face smooth, beardless, and ghostly white, his body seemingly lifeless. Just two days before, I had visited Mike, who was in a hospital in New Jersey that same week. The impact of seeing first my little brother and then my son unconscious, with tubes in their bodies, and very sick, pained my heart. Would either of them recover? Would David ever be the same?
Except for his death, that was the lowest time in our 17-month experience with David’s leukemia.

When we returned home Saturday night, there was a bouquet of flowers on the porch from some thoughtful friends and a sympathy card in the mail. The next day another dear friend gave me a hug. I don’t need everyone to remember our loss: life moves on. But it feels good when one or two do.

I was glad the hospital visit was after Victoria’s birthday party. Sunday morning I woke up and cried, but I have experienced healing: I didn’t fall into a gaping chasm.