Death is personal. No two experiences are the same. Duh.

It has occurred to me that in a very short period of time we have had two very different experiences with dying – the long journey and the shocking event. One is not better than the other. They both end with the same result and they are completely different experiences for the loved ones who are left to grieve and live with a shattered heart.

Niels’s death was announced when the police officers rang our doorbell at 9:06 pm on a Tuesday night. When the female officer asked if I was Niels Thomas’s mom. When I answered “yes” staring at her with the unspoken question in my eyes and she simply…nodded, “yes”. 9:06 pm.

That is the kind of arrival of “death news” that drops you to the floor. Literally. It leaves you gasping for air. Shaking your head. Screaming “no”. And then over time…time that seems to stop, the realization of the passing sets in…slowly, swiftly…all mixed up in a surreal non-reality that turns out to be your new permanent reality. And yet, this CANNOT be real.

And then there’s the long journey to death…years of struggle, suffering, pain AND the ability to make choices about how you live. And how you die. Glen had cancer in 2008. I’ve always said that they had to “kill” him to save him because the treatment was brutal. Many times, I know he considered giving in to death. After his long and slow recovery, he often said that he hoped for 10 good years. Lucky him. But now, he has said…enough. Enough pain and suffering. Enough fighting. He gets to choose…

So I’m sitting here with Glen in the quiet of the morning light, I pretend that the “chirping” of the oxygen machine is the birds outside the window. I can see hummingbirds. (I know they don’t chirp, but let a girl have her story…) He’s calm, resting well thanks to the nurses who meet his every physical need.

I’m here contemplating life…and death. A long life well-lived and a life cut too short and yet also so well-lived. Both so well loved.

And then I got a text that said that “Niels is already with Glen. He is with you all.”

And my heart swelled and broke simultaneously. I have felt Niels’s presence here as Glen slowly leaves. I hadn’t been able to put my finger on my strange sense of peace, but that’s it. “We are four” again, if only for a few hours or days. WE ARE FOUR.

And..

We’ve established that life is full of twists and turns. – throughout our lives we experience so many unpredictable events – joys and sorrows, curiosities and questions, fun times, dreamy times, scary times.

And then…there are those events that you maybe were expecting, but the unpredictability is in the timing. Not the “if” it’s going to happen, but the “when”.

Like…you always knew you’d go to college, but would it take you 4 years, 9 years, or maybe you actually changed your mind and skipped it all together? And then you figured that someday you’d get married, but would you still be in your party years, your college years, your career years, your later years…or maybe never after all? And kids? Sure? Maybe? Yes, absolutely! Or no thank you, I have a dog.

And then a friend once asked me…why do I think about life in that order? Remember. It’s full of twists and turns. Be ready…Maybe it’s kids then marriage, then college? Maybe it’s career, another career, and another career, skipping all the other “steps”? Life is unpredictable.

And of course, we all know that we will have an end. An expiration date. A “use by…” date. As Mrs. Bruce, my Home Ec teacher at Clark Junior High used to say…Only two things in life are certain…You will pay taxes and die. (Of all the things I must have learned in junior high, why is that the only thing I remember?)

So in the meantime, from the time that we are old enough to understand the unpredictability of life and we learn the skills to just go with it, to manage it, and flourish through it all…I’m thinking about how we actually spend our lives – the days, years, decades…or maybe better said…how do we experience the unpredictability of our lives?

I was chatting with Dr. Trudy, a wise doctor, the other day and we talked about life and death and our paths through life to death. We agreed that there will always be hard times, unbearable times and the “easy” times will often feel like a fleeting moment in time; often viewed through rose-colored glasses in our memories. And she said, “We can hold hope and worry at the same time”. Huh? Hope and worry?

As we talked, it occurred to me…it is a truism that how we experience this unpredictable life really depends on how we approach it – what we do with it, how we think about life and how we share our life experiences with others – specifically how we build relationships and share our emotions with others in times of hope and worry.

And how we might carry them together. Hope and worry – they seem so separate?

That phrase that Dr. Trudy shared with me has really stuck with me and it reminds me of something Glen used to say all the time…”It’s a paradox” meaning that two disparate things can be true at the same time. It used to irk me so much every time he said it…I always heard, “blah-blah, blah-blah, blah-blah…”

So when Dr. Trudy said…We can hold “hope and worry” at the same time…I had a lightbulb moment…Glen was right…again, darn it.

In this moment – at every moment…life can be scary and also filled with gratitude and hope. Lately, I’ve found hope in every conversation I have with friends and family – with every offer of support and encouragement. And with the hugs felt from everyone near and far. Hope.

And I worry. Glen’s health is tenuous, at best. There is a certain predictability that we are facing…together. And as I sit with my worry, I hold it in one hand and I squeeze it, seeking answers …At the same time, I am also holding hope in the other hand. And I squeeze it, too. i squeeze HARD. Hope.

Life is a paradox.

Happy birthday, Niels. Life’s just not the same without you here with me. And I celebrate your life…every day…keeping you as close as I can.

My maternal grandmother was born in Minnesota near where Laura Ingalls Wilder began her story in Little House in the Big Woods. Mimi, as we called her, grew up in Des Moines, Iowa – I’m not sure when she moved there, but I’ve found records of her Minnesota family continuing to make crop payments to the Iowa family from the farm in Janesville, MN.

The story goes that Ferne (Mimi to us), moved to Los Angeles to get away from a jilted pursuer, but when he followed her to LA, she agreed to marry him so as not to look like a hussy living as a single woman in LA.

The marriage was not successful, though two daughters were the outcome. Mimi and her husband, a devout Irish Catholic, were divorced…during the Depression.

Without airing too much family dirty laundry…suffice it to say that the Catholic husband could not come to grips with the divorce and spent his weekend visits with the daughters begging them to save him from spending eternity in Hell because of his divorce from their mother. Suffice it to say, the daughters did not look forward to their “adventures with Dad”.

That’s the background to the rest of the story I’d like to tell today. Though Mimi conformed to the societal norm of marrying the man who proposed to her, she was otherwise an independent and determined woman. As a divorcé and the mother of two daughters, she took an office job in downtown LA with the County of Los Angeles. I recently found her application for the job. She did not graduate from high school and she had little to no prior employment history, but she got the job and she stayed with the County for her entire career.

Mimi and the girls lived in Watts, but she was determined to give them a secure life and she scrimped and saved until she could purchase a lot in Glendale on which she would build a house. As a single woman in the 30’s, she needed to have a male partner on the project and her brother complied. Likely, she also needed him to supplement her finances. I’ve found documents indicating she paid him back for a loan and she eventually owned the property and home outright.

So in 1939, Mimi purchased a lot, had plans designed, and built a 2 bedroom, one bath home with a garage at the back. It was on a suburban street in a developing neighborhood in Glendale. She planted an avocado tree in the back and a lawn in the front. My mom was 13 and my aunt was 11 at the time.

In the mid 1960’s as she was preparing to retire and travel the world, she decided to sell the house and move to a condo where she would have less maintenance to worry about while she was away. And that was that.

My sisters, cousins and I have memories of cold lemonade on the back porch and I also have a great photo of Mimi with her siblings on the same porch. I recently found a photo of Ferne and her “lady friends” in her living room. Likely they were work friends enjoying a celebration or lunch together.

And here we are in 2025, some 60 years after the house was sold. As we prepared for a celebration of my mom and dad’s lives, I found myself drawn to memories from my childhood and that brought me to wondering about Mimi’s house. So I google-mapped my grandma’s house and saw that it looked much the same today as it did in my memories. I wondered how it had changed and about the current inhabitants.

Since I am my father’s daughter, I decided that I wanted to visit the house and see it with my own eyes; sort of a pilgrimage, if you will. I bought a card and wrote a note to the current resident/owner. I explained who I was and why I was writing. I shared a couple memories and added the photos of cousins on the porch, Ferne and her siblings on the porch and Ferne and her lady friends in the living room. I included my email address on the off chance that the receiver might want to contact me. I bought a small plant and off I went to see the house for myself.

When I arrived, it was just as I remembered except for the color – it is now a beautiful bright and happy yellow instead of white. There were new plants down the center walkway to the front door and more plants at the sidewalk. Other than that…from the front yard – it was the same home; it was a beautiful sight to behold! I walked up to the front door, dropped the bag with card, photos and plant, took a couple photos on my way out and as I went back to my car, I felt a sense of comfort and closure. It was a full circle moment.

But that’s not where the story ends. The next day, as I was seated with family at my parent’s celebration, enjoying a plate of lunch, I checked my email. You know what I found – an email from the current homeowner. I read it aloud to my family, with a big catch in my voice. I could not have anticipated his response. And rather than “translate it”, I’ll just share it here:

Hi joyce, I was deeply moved by your letter. I have heard good stories from the grandson of the person who I believe bought this property from you, I moved here in 2009 . I’ve always wanted to move in to a modern house, but when I saw this one in 2009, I was immediately drawn to it for some reason. This wasn’t even for sale. When I walked in, I got the weirdest feeling . Till now, I cannot forget it. The moment I walked in the door. I  felt as if I went home, as if I used to live here before., so I really pushed hard to get it even though it was quite expensive at that time. I have made a lot of changes in the house. Thank you for reaching out and for sharing your memories and pictures. I love this house.

So Mimi, your well-loved home is safe. It’s in loving hands and it’s appreciated. For over 80 years, your home has been a part of many lives though only three owners, which seems a bit unusual in today’s times. Your little house has been witness to countless celebrations, sorrows, and joys. And its journey is not done…

I am content to know that it will continue to be a place of comfort – a home for its inhabitants.

Thank you Little House Not in the Big Woods.

You are a keeper.

How do I hold on to Niels? How do I keep him a part of my life? It feels that little by little he’s slipping away. We gave away so much of his “stuff”. We sold his condo. We closed his accounts. These tasks are all mundane. These are all just normal “adulting” jobs. Normal except for the reason. Each piece, each act, each closure feels like another part of Niels is tumbling away from me into the ocean – leaving me only with memories…and I’m terrified that they will also dim and be swept away with the waves.

I have knowingly and purposefully created places in our house to “hold” Niels. There are photos and trinkets and books and pieces of paper with his writing. (Nothing exciting, mostly reminders about meetings, some math being worked out…but it’s his handwriting.) I talk about him. Heck, I talk to him. I recently found myself talking with him as I took an afternoon walk around the Chico campus. His “force” is strong there. I write about him.

I have that sweatshirt by my bed. I have his baby blankets and Spike, his monkey stuffie, too.

I keep in touch with some of his co-workers. Using his game systems, they created a gaming area in his honor in their break room. I’m not sure it’s had much use yet in “busy” season.

I stop by Panama Bay and give his photo a love tap.

But I still feel that he’s slipping away from my reach…piece by piece…act by act…moment by moment.

A couple days ago, I stopped by the post office to do some mundane tasks – I needed to pick up some postcard stamps. I also wanted to follow up on Niels’ “change of address” form. (Weird – what do you write in the “forwarding address” box?) While there, I had an experience that brought me an answer to my question…How do I hold on to Niels? Here is the story of my 15 minute trip to the post office. I recorded my experience on my phone when I got in the car with my sobbing, snuffly voice:

I’m sitting in my car in the post office parking lot…sobbing. I don’t want to forget this moment…

…I stopped at the post office to get some post card stamps and ask about Niels’ change of address. I walked up to the counter when it was my turn and very matter-of-factly told the postman that I had turned in change of address paperwork for my son who had passed away, including the death certificate, etc. I told him I didn’t get a receipt and I wanted to know how I know that the request had been processed? The postman simply said, “You’ll get something in the mail and it will take 3-4 weeks.” I said “thank you” and stepped aside to put the stamps on my postcards.

As I was standing at the counter stamping my postcards, a woman stopped and tapped me on my arm. She said, “I’m so sorry about your son. You went up there and stated his passing so matter-of-factly, as if it didn’t matter and the response from the postman showed that it didn’t matter”. She said that it did matter. My son mattered. She kept saying, “Saying your son died is not normal and it will never be normal”. She also kept repeating, “I’m so sorry about your son. I’m so sorry about your son”. “It’s not normal.” Then this perfect stranger hugged me, the dumbfounded woman who stood in the middle of the post office, sobbing. And after the hug and a final, “I’m so sorry about your son,” she silently walked away.

I finished stamping my postcards, dropped them in the box and went to my car.

Mind you, I didn’t cry at the uncaring response from the postman because in the aftermath of a death, there are myriad tasks that you just do…sleep walking through them, talking to strangers as if you report your son’s death every day of your life. As if you’ve been preparing for these moments. So yes, I did just matter-of-factly state that my son had died. And the stranger was correct. It shouldn’t be just a simple statement without a human response, a bit of human connection. There must always be emotion. Could the postman not have said, “I’m sorry for your loss. You’ll get something in mail in 3-4 weeks” ? It’s not much, but those five extra words would have meant a lot.

The stranger’s gesture, the moment this woman took to express her sympathy with me shows that humanity, human connection, just a few caring words matter. Hugely. Never doubt what a few kind words mean to people. I will remember this gentle woman’s gesture of humanity and be reminded that there are people all around us who just need a kind word…we just need to pay attention to see where we can share our hearts.

And with her words, she reminded me that Niels mattered. His life was more than a piece of paper, a form, a change of address. I’m so grateful to her for taking the moment to remind me that Niels mattered and that it is not normal to state, “My son died”. It will never be normal. It will never be easy. And I will keep him with me by being grateful that my son LIVED, by allowing the memories of him that pass through my mind and heart every day make me smile, cry, laugh, chuckle, and…to be reminded that Niels mattered.

To know Niels was to love him. He mattered. I love him and he matters.

And there are very good people in this world. Niels was just one of them.

Our medical system and its people are overworked, underpaid, and not user-friendly.* Remember that whole “Heroes work here” anthem from COVID days. I bet they aren’t feeling that love lately. Everything seems to be a struggle…for them and for the system users.

If you know us, you know that we are big fans of the UCSF system. The facilities may be old, but the people are amazing – patient care is their thing. Last week we saw “the goddess” (per my most recent post) so you already know her.

On Saturday morning, two of Glen’s friends stopped by to make their final preparations for their trip for “footie” in England. These two true and loyal friends took one look at him and drove him with Blair straight to UCSF. I was in Chico when I got the call that they were taking him, so my 2 1/4 hour drive home turned into a 4 hour drive to Parnassus. I knew that he was going because of the swelling in his extremities and that it was not life-threatening (Dr. Yom had said likely rheumatological issue) so it was not an emergency…but it was urgent.

The four of them arrived at UCSF ER and after getting Glen checked in and settled in the waiting room with Blair – the two friends took off (one for Dublin, Ireland) and Blair and Glen started the ER dance…By the time I arrived, they’d been there for 3 plus hours without much hope for moving through the system quickly. (The waiting room was packed.) The hospital is in the mess of remodeling so when I got there, I had to wait in an outer area to be escorted to the waiting room where we were told that three doctors had “called out” for the day. In the circumstance of being extremely short-handed, the doctors were also the nurses and the custodians. I literally watched the doctor empty a trash can from the tiny exam room as he prepared for his next patient. At one point, the staff came in and because the waiting room was over-crowded, they asked all non-patients to leave the room and wait in the hallway. There were no chairs in the hall so you constantly had to dance around the guerneys and wheelchairs, etc. as they careened down the corridor.

Eventually (after hours of waiting), Glen saw the ER doctor in a VERY small exam room. He asked some questions and made a quick assessment. He suggested that Glen might be best sent to the “clinical observation” unit where he’d get more tests and a rheumatologist would be called. He told us he might have to stay over night because there wouldn’t be a rheumatologist available until the next day.

Well…surprise, surprise, surprise!!! Before Glen was sent upstairs, he was called back to the VERY small room because there was not one, but two rheumatologists there to see him. As they were asking both of us questions, it became clear that Glen was the highlight of their day…week…month…career?! They said that they think he has a rare (treatable) condition and he was a textbook case. One doctor was googling it on his phone while the other was asking questions. They were practically giddy with glee as they were discussing the symptoms with each other. As I say this, I don’t want it interpreted as bad or disrespectful care. They were an awesome pair and very forthcoming with information. The “googling doctor” had me take a photo of the google page he found with photos and information about the condition. We think that they had received the ER doctor’s report of Glen’s symptoms and they zipped down very quickly at the prospect of having a “remarkable” patient. (We learned when Glen was being treated for cancer that there was no better news than that you were “unremarkable”. It always gave us a chuckle of relief when he got that news.) After an inspection of his hands and feet, they agreed upon a course of action, including the prescription that if it worked quickly, as they expected it would, would confirm their diagnosis.

So after they left, Glen was released and the three of us were escorted upstairs to the “observation” unit. As we were heading up the elevator, the transport team said that this unit had been moved six+ times as the remodel was happening and it was hard to keep track of where it was in the maze of buildings, floors, and elevators. My sense is that those people have to keep a sense of humor to get through the day! Upon arrival to the unit with no walls, but with a gorgeous view of the ocean – too bad it was foggy – the staff in the observation unit was very quick to get Glen a bed and start the process of checking him in.

At this point, it was after 7:00 pm and Blair and I hadn’t eaten since 8:00 am. We were starting to get cranky – never a good thing. We talked to the charge nurse about finding food. She said everything would be closed down (lord knows everyone in a hospital eats meals at the “regular” hours – not), but she gave us directions to a place that would be open a few blocks away. Helpful, but…at that hour when we didn’t know what the next steps were…did we really want to leave and come back? We asked her the odds of him staying overnight and she basically said…”up to you”! Not exactly that, but the end result was she called someone and that person gave permission to keep him overnight. In the end, it made sense since he didn’t get to x-ray until after midnight and I’m not sure when the ct-scan occurred.

Long story long…on Sunday Glen went home feeling much better. The rheumatologist’s diagnosis appeared to be spot on! We had a plan!!!! Two new medications were prescribed that would take care of the most urgent issues. So the prescriptions were called in…all was well until as we were literally pulling away from the hospital, Glen got a call. One of the prescriptions would not be covered by insurance and it was going to be expensive. And, neither of them were in stock so they’d have to be ordered. Ugh. Oh well. We can deal with it.

And here I finally get to the point of the title of the post…so I went to the pharmacy today to let them know I could make multiple trips to pick up the meds – we wanted him to get started asap on whatever was available so they did not need to wait until they were both in. They told me that the delivery truck was going to be three hours late, so pick up would be at the end of their office hours today. Okay. Not great, but okay. Then I asked if both meds would be on the truck and the tech couldn’t answer my question. The pharmacist overheard the conversation and nonchalantly said that one of the prescriptions was on back order. I asked what that meant and she said…she didn’t know when it would get here…if ever. I asked when we were going to be told that information…no answer.

So I went to another pharmacy (our usual location) where I asked if they carry the prescription. They don’t. She told me she couldn’t even look it up to see if it was in stock for delivery to them or if it is on back order. That’s when I cried. Right there at the counter. I’m a regular at this pharmacy (#gettingold) so she knows me. I think I just about made her cry as she wanted to help, but had no recourse.

So here I am. At home. Waiting for the rheumatologist to call us back. I told Glen that I will drive back to UCSF to get the prescription if I have to…I just want him to have this “miracle” medication so it can continue to do its magic for him. He’s had enough pain and when we can see a solution, but can’t get our hands on it…so frustrating.

And just when I thought I was finishing this dissertation, Glen came out to tell me that he called his primary care doctor because he has to see her this week (per the rheumatologist). He laughed because it’s just another Monday in California – except apparently it’s Cesar Chávez Day so the medical offices are closed. Of course, they are!

And another addition to the story…as we were about to give up for the day, a nurse from UCSF ER called to check in on Glen. We told her the difficulty we were having with the prescription and she said she’d call us within a half hour. Long story longer…she called around and found the prescription at a pharmacy in Oakland…could I pick it up?! You betcha!!! After being disconnected two times, I finally confirmed that the Oakland pharmacy had the meds and would fill the order…TODAY!!!

I practically cried again at the Oakland pharmacy when she handed me the prescription. (It’s only a couple days worth, but it’s a start!)

“Heroes work here” and I cried at the pharmacy!

What a day!

*I just read an article…all of the UCs are going on strike tomorrow. Thank goodness we got this at least partially resolved today!