Fly Free

On the death of a dear friend

I’d been worried about my friend since last Friday when she didn’t answer the phone and didn’t call back. I called every day up until Wednesday, when, with growing angst, I realized I didn’t have contact information for her people on the west coast.

She and I met in middle school, 7th or 8th grade, around 1976, when a teacher introduced her to the girl who I’d believed to be my best friend. That’s when I wrote in my diary that she was an interloper. In high school she and I drifted along in our own friend groups, separately, but in parallel. Even in a high school class of 656 (something like that) students, we were both musical and theatrical, so our paths crossed regularly. I had dubbed her part of the nerdy, intellectual crowd; I was trying hard to believe I was something different than that. She didn’t conform to my version of non-conformity. She was Jewish, I was in a Christian youth group, even though I never really found I belonged there.

In college we both attended small liberal arts colleges; she headed to Oregon and I stayed in the San Francisco area. The summer after my first year of college, my then-boyfriend and I worked together at our local Dairy Queen, and she worked there too. I grew to have a new understanding of her. She had a dry, sarcastic wit that ran towards snarky. I approved.

In the early days of Facebook we found each other again and had occasional contact. She’d stayed in her college town, hadn’t married or had children; I’d moved multiple times with my husband and children. We had different lives. Eleven years ago, at age 50, after she was diagnosed with a progressive neuromuscular disease, she wrote in depth, and with great eloquence, about her experience, and I began to recognize that we had a lot in common. In fact, we’d always had a lot in common. Why, I wondered, had I wasted so much time trying to be unique without recognizing that she was also unique in many of the same ways. The older I became the more I realized that those of us who grew up in Davis, CA in the 1970s and graduated from high school in 1982 were very similarly shaped by our environments.

In 2015, when my youngest son, my husband, and I were visiting colleges in the Pacific Northwest, we met up with my friend. I hadn’t seen her in person in decades but now we had a geographical connection, and we continued to meet for a meal every time we visited our son in Portland, Oregon. My friend had insider knowledge of the best restaurants for every taste, she knew where to shop for each and every eccentric interest, and knew what to do in each season. By 2020 my friend had retired from her work as her progressive disability was interfering with her abilities to perform her job.

I’m a woman who has had multiple surgeries, autoimmune issues, chronic disease and various physical disabilities. I had some sense of her physical pain and limitations. She didn’t mind the time she spent in the tube for her frequent MRI’s; it was the transfer process from wheelchair to table and back again and the inability of the health techs to understand why she couldn’t jump up on the table that disturbed her. I have always dreaded the claustrophobia and the audacious audible thumping in the tube during my annual MRIs. We shared the language of medical technology and treatment protocols. I could relate to feeling like a professional patient. I also knew not to argue with her about her symptoms or how she felt. And, over time she trained me to be a better listener and a better friend. She loved words and language. I love words and language. Every year we made lists of words that should be retired. We talked about and described in glorious detail the places we’d visited. We talked about politics and usually were in complete alignment. We talked about people who irritated us. I have no doubt that I was sometimes on her list of irritants.

When Covid began, she, a woman living alone with a disability, was especially isolated, and began to encourage small groups of HS friends from around the country (and around the globe) to get together by ZOOM. The more often she and I talked, the more I realized how I’d missed out on years of her friendship. In the past three years she and I became ever more connected.

I last saw her in April 2022, the last time we visited Oregon. I spent a day with her, taking over her kitchen and making meals to portion up for her freezer, my way of feeding her even after I’d left. I had to be extra careful when using her equipment or ingredients that I carefully washed up and carefully replaced whatever I’d used in exactly the same place it had come from. When you’re disabled and working with a very limited amount of daily energy you have no time to waste trying to find something mishandled or out of place. I knew this. On that visit we were so busy talking about recipes, and seasonings, and our shared belief that spices are integral in creating layers of flavor, that we forgot to take a photo of our time together. I imagined we’d have other opportunities, but then I moved across the country to Virginia. Trips to my elderly parents, in our shared hometown of Davis, CA took priority over visits to Oregon.

Our mothers died within a few months of each other in 2022/ 2023 and we formed a club we called “Dead Mom, Dead Mom, Dead Mom”. We were going to have t-shirts made. We found that people who hadn’t experienced this loss didn’t really understand, and that there was even an artificial, hierarchical structure to grief, with people who’d had very close relationships with their mothers appeared to claim to be experiencing a greater loss than the two of us, whose mother relationships were best defined as “it’s complicated”. It was also our shared experience that people weren’t generally capable of checking in with people who’d experienced a death. We found that our friends and acquaintances gave us a grace period of about a month and then we were supposed to be able to “move on” and “get on with it”, even though we weren’t ready. That’s where we felt the club t-shirts might help in a “please ask about my dead mom” kind of way. We found that people didn’t understand how we could have a complicated relationship with our mothers and still have complex and overwhelming grief.

I come from a family that isn’t comfortable discussing death and loss in the same way as I do. My husband and children experienced the loss of my mother in a very different way than I did. My friend understood this. She was experiencing grief in a similar way, at a similar time, and we each felt heard by the other. I think it was this experience that really cemented our sense of trust in one another.

Last year I spent most of the year disabled and unable to drive, walk, or sleep comfortably. I was bed-bound for months, and my friend understood my anger and frustrations better than anyone. During this time period we sometimes spoke multiple times a week, but in the last three years we’ve spoken at least once a week.

Our conversations were never simply about our shared infirmities or frustrations. We had the kind of convoluted, multi-branched conversation that is common with women friends. We gave each other recommendations for books to read, podcasts to listen to and television shows/ movies to watch, we reminisced about the smells, sounds, tastes, and places of our childhoods: onions in Vacaville, pineapple and marshmallow sauce at the Nut Tree, giant scrapwood sculptures in the mud flats of Emeryville as we drove into San Francisco. These things are all gone now but they lived on in our memories. We talked a lot about what we remembered, our shared perceptions of childhood and adolescence in Davis. We asked each other questions about what we remembered and shared our questions about whether our siblings, six years older in her case, and 4 years younger in mine, experienced things in the same way. How were their childhood memories different from ours due to the age differences? They knew different versions of our parents.

We talked about the weather a lot, because, for her, it had enormous power over her ability to function. Her demyelinated nerves were like stripped and over-reactive live wires: always fizzling, never content. We talked a lot about chocolate. We each had slightly different taste profiles that we sought out. She was perhaps a bit more flexible than I. We both preferred dark chocolate but she was willing to try milk chocolate if the flavor profile was interesting. I have always found milk chocolate too sweet even if it did promise apricot cardamom yumminess.

We frequently sent each other newly discovered artisanal chocolate. I have a box waiting to send her for Hanukkah, a holiday we both celebrate but spell differently. We always spent one night of the Hanukkah holiday together- she in Oregon, I in Virginia. My family and I would create Hanukkah plays for her enjoyment, we’d light the candles and say the prayers together. We’d talk about how to make the best latkes.

She always asked what we were having for dinner and how I had seasoned it, had I considered adding this spice or that spice? We had developed our own rituals. We’d finally perfected the standard that if she called and left a message that stated her need to talk, as opposed to a social chat, I would call back as soon as possible. There were times when the weight of her loneliness felt crushing, and on especially difficult days, she needed to talk things through, but found that, too often, no one was available when she needed them. She didn’t know her neighbors, and while she had some very close friends who visited regularly, she was pessimistically certain that in a disaster scenario-a fire, storm, government collapse-she would be left behind. How could I argue against this certainty. I was far away and unable to rescue her.

In the past year her disease had progressed to a point that she’d been unable to sleep more than 4-5 hours, she’d had more incidents of uncooperative body parts that dropped things and made messes that further exhausted her, and her pain level had escalated to the point where she’d settled for taking a medication that made her feel foggier, in exchange for a small diminishment in pain.

She’d just learned in mid-October that the hearing in one ear had taken a steep dive. Her doctors had been monitoring an acoustic neuroma, completely unrelated to her MS. She’d gone for what was supposed to be a routine test. I didn’t know about the timing of this test, or the results, until after we spoke for what was the last time, on October 15th. She left a thirteen second message at 5:16 p.m., asking in a voice on the verge of breakdown, for tea and sympathy, hold the tea. She’d had a “shitty, shitty day after a shitty shitty” week. As we had previously agreed, I called her back as soon as I got her message, five minutes later. On that day it wasn’t one thing, it was a million things. She warned me not to try to offer solutions or fixes. She just needed to be listened to. Amen, sister, I hear you.

Her thermostat wasn’t functioning, and she’d had difficulty getting someone to help her determine the cause (the thermostat was on the wall higher than her ability to reach or see). Every incremental change in temperature caused her physical pain. She had made many accommodations to her disability. Over the past decade she’d added mini-splits to air condition her environment in the progressively hotter summers. She’d given up alcohol, driving, and autonomy, added ramps, installed grab bars and lowered countertops and shelves. She’d learned to dress in easy layers and had, like me, come to adore the thermoregulating properties of merino wool. She hired help to do most of her cleaning and accepted that things would no longer be done to her standards or at her convenience.

She was pleased this summer to have been taken by a friend to the beach, but discovered upon arrival that, while the beach advertised itself to have special beach wheelchairs for handicap accessibility, these particular wheelchairs weren’t the right height for her, there was no way she could get into or out of them without more assistance than she had, and she had to settle for sitting near the beach. She was gracefully grateful to have heard and seen the ocean again.

She had her groceries delivered, always specifying exactly where the bags should be left, only to frequently discover that most deliveries were left at the bottom of the ramp or at the back door because fewer people read these days, and most delivery personnel are overworked and underpaid. And, perhaps the most frustrating issue of all was the constant need to procure rides from busy, working friends-a task that required multiple phone calls on a weekly basis.

The audiologist who had done her hearing test last week got angry when my friend answered questions about the ear that she’d experienced some stuffiness in her ear but not necessarily pressure or maybe it was the reverse. Either way her answer didn’t conform to the audiologist’s standards and the audiologist was visibly and audibly frustrated. The Kaiser system freaked out by the test results. Was it the acoustic neuroma? Was it the MS? They ordered an MRI for Sunday evening, the end of the week. One more ride to procure. One more test to anticipate. One more set of results to quietly worry over.

I felt like we’d had a very good call. I didn’t try to fix things. I listened. I offered sympathy. She only got frustrated once when I asked the extent of the hearing loss. We recalibrated. We talked for a while. I told her I loved her, she told me she loved me. I asked her to call me as soon as she had results from the Sunday scan. I waited all week. I didn’t want to be the pesky voice calling to ask “Have you had the baby yet?” “Did you break up with him?” “Are you home from you trip?” “Did you do that thing we talked about?”. She didn’t call and I assumed she didn’t yet have results or maybe she did, but she was processing them on her own? Or? I wasn’t sure.

I called on Friday, unwilling to wait any longer. She didn’t answer the phone, but maybe she was using the bathroom or had a follow up appointment, or? On Saturday I got busy and forgot to call again. Typically she calls me back within hours or by the next day, but by Sunday I hadn’t heard from her so I called again. No answer. I was growing uneasy. Monday was a busy day preparing for a holiday party I was hosting for neighborhood kids, but I called sometime mid-prep and left another message, jokingly suggesting that maybe she’d finally decided to take that trip to Machu Picchu. Monday night I was very unsettled and tried to figure out how to call her Kaiser hospital inpatient phone number. I know her full birthdate, maybe I could pose as her sister? It didn’t matter; I couldn’t figure out how to call a Kaiser hospital. I left a text message hoping someone caring for her would see it and contact me. She rarely texts because one-handed texting with uncooperative fingers is exhausting. I sent her an email with detailed information about my concern for her that included my contact information and who I was, again, hoping someone with her would see it and call me. Somehow my brain had decided she was in the hospital, possibly unconscious or otherwise unable to communicate. I called again on Tuesday, but post the afternoon Halloween party I was thoroughly exhausted and fell asleep without immediate worry for her, but had strange dreams with lots of cetaceans in an unfamiliar place that no one would identify for me. I’m really not sure if that’s related to my friend but I’m reporting it here for accuracy.

Wednesday I reached the full spectrum of Something Is Wrong and over dinner with a close friend and neighbor we started sleuthing. Did I know her sister’s name? Yes. We tried to find her sister’s contact info but her sister lives in a different state. I gave up my FaceBook account and so I couldn’t use it to snoop through her contacts to try to find someone to message. Undaunted, I called the middle school friend that connected us both and we agreed that this behavior was highly out of character. Our shared friend agreed to use her FB account to contact our Oregon friend’s people. The Oregon person must have seen the message quickly and he went over to check on our friend and that is why I woke up on Thursday morning to a message on my phone from a number I hadn’t previously known. “Hi Deb. I am a friend of M. Please give me a call. My phone is always on.” So when I awoke on Thursday morning I called him and that is how I learned that sometime in the past week she had fallen and died in her home. My friend is dead.