[THREAD] 1. Some major life changes are about to happen, and I want to tell you about them here. First off, my dear wife @cincinnancy
just informed our family and immediate circle that she has been diagnosed with breast cancer. A long struggle lies ahead of us.
2. I'm going to be moving to Cincinnati to be with Nancy (we were a two-city couple prior to this) and will stay there continuously through the end of the year, after her treatment has concluded. We'll assess future steps after that.
3. I will continue as TV critic of @nymag
, as this is a job I don't have to be in the city to do. However, I won't be doing many public events or moderating jobs until early next year, so don't ask me! If this changes, I'll announce it.
4. I'm going to continue as a critic, columnist and editor at @ebertvoices
with the blessing of @ChazEbert
, though I will be less involved in assigning and editing pieces, and I will be referring all unsolicited pitches to my friend @Brian_Tallerico
5. The SOPRANOS book is still scheduled to be published in January, 2019, but other projects I have in the works will be indefinitely delayed or simplified, as obviously my family is the priority.
6. Lastly, please be patient with me as I move forward through this. I've tried to be as accessible as possible to everybody, but that's going to have to change if I'm going to be able to focus my energy where it matters most. Response times for most things will be slower.
7. I will continue to check in here when I'm able and willing, and I will post links to new work as it goes up. And with Nancy's permission, I may write about our progress over the next few months. We're treating this as a challenge and an adventure, something we're in together.
8. Nancy's best quality besides her strength is her sense of humor. After we discussed my relocation, she said, "Well, I wondered what it was going to take for us to move in together." So here we go!
9. Nancy waiting for her MRI. “Look how much fun we’re having!” she says.
and I wrote our wills tonight. I specified that my adjectives be given to @simonsaybrams
, my nouns to @moryan
, my verbs to @sheilakathleen
and my profanity to @odienator
. Semicolons will be flung in the air at my jazz funeral.
11. With @cincinnancy
as she’s having a chemo port put in. Nurse, going down a checklist: “Are you depressed?” Nancy: “No.” Later: “I should’ve said, ‘Well, Trump is the president and I have cancer, so you tell me.’”
13. Chemo port surgery is done. Incision scar from trying to access a vein. Everything is fine. @cincinnancy
is resting. We will go home later today.
14. Echocardiogram to make sure @cincinnancy
is healthy enough for chemo. (Results Monday.) N: “It’s like I’m expecting, but there’s no kid.” M: “There’s a kid, but he’s evil and made of cancer.” N: “Look at our beautiful baby. I’m going to name him Carl Cancer.”
just had a nice visit with a friend who brought over prepared bags of fruit and vegetables to make smoothies with. She also knows a lot about wigs (she's a hairdresser) and gave us a thumbnail history of women's wigs over the last few decades. The more you know!
16. Thanks so much to my friend @barbarapym
for bringing over prepared materials so that Nancy can make smoothies while she goes through the first round of chemo this coming week.
17. On the road to Columbus for more tests.
18. Entering week 2 of chemo for Nancy. Road trip from Cincinnati to Columbus tomorrow. Learning a lot about the timing of medicine, including numbing cream. A lot of folks have sent food, it’s really touching.
19. Waiting for chemo. Checking out the library & donations. Wonder if anyone here wants a stash of film & TV books.
20. Waiting on chemo to start. That little guy’s name is Pablo, BTW.
21. Not 100 percent convinced that this is an ideal choice for a cancer treatment waiting room, but whatevs.
22. Rooting for the speedy destruction of the evil interloper known as Carl Cancer.
Chemo room selfie by Ella.
23. “And when Pablo saw the breadth of his domain he wept, for there were no more worlds to conquer.”
24. Just received bills from the insurance company — the first round. Looks like they’re covering most of it, but even a little bit they aren’t covering is a shock. Thousands of dollars. I know a lot of you have had to go through this; I really have no idea how you managed.
25. Life really is merciless. I feel like I’ve already learned this lesson, but here I go learning it again.
26. I am leaving NYC for the foreseeable future, and my friend @stevensantos
is moving to LA at the same time. We will say goodbye with an Aug 6 screening of our favorite New York movie, Goodfellas, at @IFCCenter
. Ticket info at link. Seating limited. http://www.ifccenter.com/event/goodfellas-hosted-by-matt-zoller-seitz-and-steven-santos/
That’s us in the picture. I’m Joe Pesci.
28. The @GoldringAJs
, the Syracuse University arts journalism program where I teach, will pay for five (5) interested students to attend this screening. DM @ericgrode
if you’re interested. http://www.ifccenter.com/event/goodfellas-hosted-by-matt-zoller-seitz-and-steven-santos/
29. With @cincinnancy
andHannah in Columbus, where Nancy is getting chemo.
30. Nancy post chemo, at lunch with Me and Hannah.
31. Back on the road for one more round. Pablo is with us, as usual.
32. Nancy driving to Columbus. She’s rocking that headscarf.
33. Grainy surveillance footage of Nancy’s husband retrieving her phone.
34. Waiting on the medicine. Coffee doesn’t count.
35. Another dose. Pablo is unfazed.
38. Pablo doesn’t care that the magazines in this waiting room are old. He is still capable of learning from them.
39. Chemo selfie at the halfway mark—5 out of 8 treatments complete. Nancy looks great, like a foxy shaman. Pablo is just happy to be here.
The cancer center provided us with some beverages for the road. Love the tiny cans.
40. Outside Columbus, headed home. Long day.
and I had some glamour shots taken. Photo by Megan Noll.
42. Cancer selfies. Nancy’s doing well. About a month left in the chemical part of this process.
& I are in Columbus again today. After this, there’s one more chemo treatment left, then recovery, then surgery.
44. Linking to a different thread that feels like it needs to be filed under this one. https://twitter.com/mattzollerseitz/status/1046450522339889155?s=21
45. We are at the Stefanie Spielman Comprehensive Breast Cancer Center for @cincinnancy
‘s final round of chemo. After this, it’s on to surgery (no date yet).
46. Brought the new @FANGORIA
with me to peruse while we’re between appointments on chemo day. Our cancer buddy Pablo might or might not think it’s an inappropriate choice of material. He’s always a bit hard to read.
47. Final chemo selfie, with Pablo.
48. My younger brother @foz
and his daughter come to join us in Columbus for @cincinnancy
‘s last day of chemo.
49. The nursing staff celebrated @cincinnancy
’s completion of chemotherapy. She even got a certificate!
50. At the cancer center again for surgical & radiation consults. So much information— journalism experience definitely comes in handy w/r/t asking “dumb” questions to make sure we’re understanding everything.
51. In Columbus with @cincinnancy
visiting an oncologist to talk about radiation treatment after the mastectomy (which is happening this month).
52. Great reading material in this waiting room. I’m learning a lot about Satan and visions of Hell thanks to @NatGeoMag
. I like how this demon here is totally chowing down. Sinner rhymes with dinner.
53. Slight clarification: @cincinnancy
’s surgery is in November, not October. Should have said “this coming month.”
54. Excellent meetings with caregivers today. One thing that’s been very consistent throughout the range of treatment at @OSUCCC_James
is that they are all good listeners & explainers. I feel like I’m in classes with a bunch of teachers I actually like.
55. On the road again to Columbus this morning for a CT scan.
57. Waiting on another doctor appointment with Nancy.
Me: "Did I tell you about how the kids & I dressed as zombies one time for Halloween?"
Nancy: "Yes. But you can tell it to me again if you like."
Me: "One of the nice things about getting old is, someday this'll all be new."
58. Wherein @cincinnancy
turns the tables & photographs me in the waiting room for a change.
59. On the road again. Nancy’s mastectomy is tomorrow morning. Will post an update afterward. Thanks for all your support!
61. Today’s the day! (Pablo, our patient advocate, is along for the ride.)
62. I just met with the doctor, they finished a few minutes ago — apparently everything went fine. It’s going to take about 30 to 45 minutes for the anesthesia to wear off, then they’re going to bring me back to see Nancy.
63. I just saw Nancy. She’s in good spirits.
64. Not major in the greater scheme of things, but I don’t see the point of offering movies that have been “edited for content “ in a cancer center. I tend to think everyone here has seen worse.
64. Nancy had me try on her hospital cap & take a picture. I think I look a little bit like Hulk Hogan.
65. We’re hanging out in the recovery ward. I just emptied Nancy’s wound drains for the first time. Very Cronenbergian. Tubes, valves and squeeze bottles.
66. Pablo our patient advocate is making himself at home in recovery.
67. Portrait of Pablo. The wicker chair says Huey Newton, but otherwise I’m getting a Marlon Brando vibe.
68. “Mom, just because you have cancer doesn’t mean you get more cookies!“ —actual quote by a teenager just now. Everyone agrees it’s funny, so don’t worry.
70. But seriously: Nancy had her mastectomy and we got the results back and they were...not what we'd hoped for. I'll let Nancy take over here and summarize in the next few Tweets:
71. "I have triple negative breast cancer. With that type of cancer, chemo is typically done first, and the hope is that by the time you have the mastectomy, the chemo will have killed all active cancer cells and you have no evidence of disease...
72. "Unfortunately that’s not what they found in my case. 'Incomplete pathological response' isn’t the phrase we were hoping to hear."
73. "So. Instead of finishing off with a round of radiation, once I’m healed from my surgery I’ll be starting a six month clinical trial of additional chemo, drugs I haven’t been on yet."
74. "After that, I will start a six week course of radiation, in tandem with a one year immunotherapy clinical trial. Obviously there’s so much they don’t know about triple negative, so I’m fortunate to be able to try stuff they aren’t giving yet as regular treatment."
75. "I’m so glad I ended up at The James, where they have a solid Plan B for me."
76. So, onward.
77. Nancy, quietly, on couch: “Fuck you.”
Me: “Who you talking to?”
“My watch. It’s telling me I have to get up.” [To watch] “I got cancer, ya motherfuckin’ watch.”
78. We’re back in Cleveland today for @cincinnancy
’s continued treatment. Nancy is getting her remaining drain taken out. Also radiologist meeting & physical therapy session. Parking lot was crowded today. Nancy: “They must be offering cancer half-off.”
79. Next leg of cancer treatment starts today for @cincinnancy
. The goal is to reduce the chance of cancer recurring in the future. She’s starting carboplatin, a chemotherapy medication.
80. Really weird that I said “Cleveland “ back in Tweet 78 of this thread when all of Nancy’s treatment has been in Columbus. Maybe because her dad’s heart treatments are in Cleveland.
81. We’ve been told that @cincinnancy
’s cancer is metaplastic, and about one in ten million women with breast cancer have it. I always knew she was special! More chemo today; radiation and an immunotherapy trial will follow.
82. You can feel the sincerity!
83. The latest cancer selfie. I don’t know what so goddamn funny about this, but we can’t seem to keep a straight face.
84. On the road to Columbus again with @cincinnancy
. More chemo treatments.
85. On the road with @cincinnancy
86. We finished listening to the RENT original cast recording as we pulled into the cancer center. Nancy: “Listening to a musical about death on the way to chemo is very on-brand for me. Maybe we can listen to LES MIS on the way home.”
87. Back in Columbus for the final round of chemo (this time). Radiation treatment and possibly immunotherapy lie ahead. Nancy brought Pablo and slippers that look like Pablo (a gift from her daughter’s BF).
89. Back in Columbus, where @cincinnancy
is doing regular preventative radiation treatments. Usually she goes alone (it’s a brief process—the drive is the long part) while I stay home with the kids, but today I’m with her because we’re conferring with doctors.
90. On Friday, @cincinnancy
(pictured here with Toby) got back the results of a full body scan. She is still continuing radiation treatment and there may be immunotherapy in her future, but to the best of our knowledge, at this point in time, she no longer has cancer. Huzzah!
91. Thank you to everybody who accompanied us (virtually and physically) on this very taxing journey. Thanks in particular to everyone in Cincinnati in New York who pitched in with logistics when things were at their most dire.
92. Thanks also to everybody who has been through this before and had experiences to share. Knowing how utterly horribly ordinary this sort of thing is actually helped a lot in processing it.
93. Special shout out to @JohnDawson39
, father of @cincinnancy
, who researched various treatment methods, accompanied her to the cancer center when I was out of town, and has just generally been the most supportive parent anybody could ask for.
94. More news: @cincinnancy
was randomized to take part in an immunotherapy trial which begins soon. This is part of continuing preemptive treatment to keep the cancer from returning. We are overjoyed that this is happening.
95. On the way to Columbus for the official conclusion of cancer treatment for @cincinnancy
(although she will continue to participate in preemptive treatments to prevent recurrence). There will be a ceremonial ringing of a bell, which I will post video of in a bit.
96. And this officially concludes the treatment.
97. Here’s @cincinnancy
ringing the bell signaling the official end of her cancer treatment!
98. Back at The James for preventative treatment (immunotherapy). No evidence of cancer, they say, but you can’t be too careful with this stuff. Today is the one year anniversary of @cincinnancy
beginning treatment. Note the port!
99. Well, here we go again. @cincinnancy
is beginning more treatment because doctors recently found patches of cancer in 2 vertebra. Radiation treatments start today and will continue for two months, along with more chemo. [Cont'd]
100. Obviously this is not the news we wanted ("It's like Groundhog Day, but with cancer," Nancy said) but we have a very smart and proactive team of doctors on @cincinnancy
's case, and they beat it last time, so we're optimistic. (Cont'd)
101. The lead physician in particular is a brilliant man who seems personally offended by the very idea of cancer and was as upset by the diagnosis as we were when he gave it, so we're just rolling with it for the time being and trying to stay focused. (Cont'd)
102. All 5 of our kids took the news in a very focused and task-centered way. This isn't anybody's first time at the rodeo, as my grandpa would've put it. Driving to Columbus with Nancy this afternoon for the first treatment. (Cont'd)
103. As was the case last time, until we get into a routine as a family again, my presence on here will be somewhat lessened, I'll be doing less bylined work, and I won't be as responsive to queries about career advice, pitches, etc. Grateful for understanding employers.
104. Back in Columbus for treatment. Waiting on Nancy to complete today’s radiation treatment. Waiting room magazines are my friend. Let’s see what Joaquin Phoenix has to say.
105. Nancy had radiation treatment last night & again early morning in Columbus, a two hour drive to & from Cincinnati that by this point we know nearly as well as the interior of our own home. At least we got to stay overnight with a friend outside of Columbus who has horses.
106. Sucks that cancer is this monster that you kill and then have to kill again like the creature from It.
107. The unrelenting flood of bad news recently seems to have at least one silver lining: I started writing fiction again. Haven’t done that in 20 years. Working on a novel about a love affair between two old people, based on me and Nancy.
108. Back in Columbus again for treatment and consultation. Here is a picture of the pain scale chart. Emotionally I give myself a six.
109. Looks like treatment might be moving to MD Anderson Cancer Center in Houston. Anybody who’s from there, would love recommendations for a place to stay for a week not too far from the facility.
110. Joining Nancy in Columbus today as she continues radiation treatment and has more tests. Incredible how this kind of thing just becomes a part of your life over time.
111. Brain scans came back clean, so there’s a piece of good news.
112. Off to MD Anderson in Houston for more tests & hopefully some treatment that’ll knock this thing out finally.
113. (SpongeBob narrator voice): “Four-and-a-half hours later.“ Still at the Cincinnati airport, Houston flight delayed by East Coast blizzards.
114. Just had a sip of an “antioxidant infusion” beverage that I will henceforth refer to as Melon Taint.
115. We’re on the plane now, and my foul mood at the four-hour delay has disappeared and I’m smiling. I suspect I would fold very easily under questioning.
116. Me and @cincinnancy
on an afternoon date at M.D. Anderson Cancer Center in Houston. A little Me Time, as it were.
117. The person in the hospital business office asked me to put the medical bracelet on my wife’s wrist. It felt like a renewal of vows.
118. Very good meeting. The doctor is authoritative but nice and great at explaining things – she even drew sketches. As pernicious cancers go, this is a hopeful subset. Nancy will probably take part in a trial next year – more chemo for now.
119. Because we had an open-ended stay, we had to book a last minute flight home last minute on Priceline, the kind where they don’t tell you the details until after you pay. Our pilot is a guy named Jock flying a single-engine seaplane. His copilot is named Reggie.
120. When you’re in a dire and stressful situation, Christmas music always seems to be mocking you.
121. I got to try out a new celebrity impression on this trip: Desi Arnaz saying, “Loocy, you got lotsa ‘splainin to do!” It sounds like Kermit the Frog on Quaaludes. Nancy pronounced it “truly awful.”
was admitted to the emergency room at the James hospital in Columbus Tuesday because she’s had trouble walking & experienced weakness on her right side. Scans revealed more bone damage, which will be stabilized w injections of a cement-type substance. [cont’d]
123. Nancy is also beginning a different kind of chemotherapy. Some of her work has been reassigned. I’m taking off work until further notice. Store orders that were received earlier in the week hopefully will go out Monday.
124. Thanks everybody for your support and current wishes.
125: Me: “I know the drill by now. This isn’t my first time at the rodeo.”
Nancy: “This rodeo blows. You should stop going to it.”
“It should be called the Blowdeo.”
Nancy: “That was terrible even by your standards.”
126: On the plus side, our oncologist knows us well enough that he said “fuck” in front of us today, instead of his usual “eff.”
127. Close-up detail of @cincinnancy
’s slippers, a tribute to Pablo, her cancer mascot, who we both agree was pretty useless — yet still cute. Please note that we are both laughing at this. For additional Pablo pictures, see thread.
128. Nancy has announced her intention to dye her hair a startling color. I endorse this although no endorsement is required.
129. The following thread is from @cincinnancy
's Facebook post. "The family and I have escaped to sunny Florida for the next week. Devastatingly, I’ve learned that now I have reached the end of the line of what can be done for me."
130: "I have exhausted every possible treatment option without one single break in the last eighteen months, and so now we are basking in our small time left together."
131. "And because I am always at my happiest when I’m plotting and creating, we are planning the future for our five children, lovingly handing off @brideface
, and building in a mini-retreat for @transformcincy
so we can stage a big campaign to get a storefront."
132. "I love you all so much and so appreciate your texts, messages and emails. As a family we will be in our bubble and we will re-emerge in Cincy 1/7."
133. I will be taking time off from work at @NYMag
to help the family through this difficult time. Film and TV programming events, classes and other activities will be suspended until we get back on our feet.
134. We're all sitting in a beach house watching a DVD of Stephen Sondheim's 80th birthday celebration right now, after a hearty breakfast. Savoring the small moments. Something we should always be doing, in any circumstances.
135. Might as well go ahead and follow @transformcincy
now. My wife has extraordinary things planned for it. A legacy.
with sparkler, New Year’s Eve 2019.
138. With @cincinnancy
139. Nancy’s friend Kelli came to visit. She brought her Great Dane Max. We sat outside talking for hours while the waves broke on the sand.
140. Kelli made Nancy laugh so hard that she nearly hyperventilated. Friends like that are a treasure.
141. Tonight at dinner Nancy handed me an idea for a new kind of television festival that I’m certain hasn’t been done before. “You’re welcome,” she said. She has ideas that good every day. Tosses them like rose petals.
hanging out with her friend Kelli’s dog Max.
143. Watched Moonstruck with the the entire extended family, second time. If you’re looking for a foolproof crowdpleaser for pretty much everyone, this is the movie.
144. The family had a very cheap and very good breakfast at a restaurant not too far from the beach. I had an omelette with crab and cream cheese in it, and it was excellent.
and me on the beach yesterday afternoon. Our daughter Ella took the pictures.
146. Watched Yentl with the kids – first time in years. A brilliantly directed film that only Barbra Streisand could’ve gotten made. Enough material here for a semester on culture and sexuality. Barb photographs Mandy Patinkin the way Kevin Costner photographs himself.
147. Afterward, Nancy recounted how she saw Yentl in high school on a date. The boy didn’t know it was a musical going in and said he was bored by it. The relationship did not last.
148. Now we are watching The Irishman. I’m actually half watching — I’ve already seen it all the way through twice. Interesting follow up to Yentl—not just because of female & male energy juxtaposed, but also bcz you have to just *decide* to believe the actor presentation.
149. De-aged 76-year old De Niro in The Irishman is no more convincing as a young man than 41-yr old Barbra Streisand is as a young male yeshiva student in Yentl, but if you decide it doesn’t matter, it doesn’t matter.
150. I just got through arranging chairs to watch our final sunset together with Nancy at the beach.
152. Now the family is watching Sweeney Todd (DVD, 1982) and wow, wow to everything, but especially to Angela Lansbury, in one of her peak performances as both a singer and an actress.
153. Last year @cincinnancy
cofounded a nonprofit called @transformcincy
that gives clothes & makeovers to trans teens. It operated out of Nancy‘s bridal makeup business. They are having a fundraiser to move into their own space. Link: https://secure.acceptiva.com/?cst=He7kLw
154. The goal of the @transformcincy
fundraiser is to be able to move the nonprofit into a dedicated space where the kids can build a little community for themselves. It might be a storefront or it might be a dedicated building, depending on how it goes. https://secure.acceptiva.com/?cst=He7kLw
155. Nancy and I thank you for the extraordinary outpouring of affection and support.
156. More beach photos from yesterday— by me & Ella.
157. One of the kids just discovered that somebody arranged Japanese lanterns with tiny LED lights inside in the shape of a heart on our front lawn.
158. Life is cruel but it can also be beautiful.
159. Home is where the heart is, I guess.
160. Back in Columbus today for scans and consultations. Any further treatment at this point is about more time & greater comfort. Nancy is in good spirits now that the steroids have kicked in.
161. Good medical news — things have stabilized a little bit, no negative developments. @cincinnancy
is having synthetic cement injected into cancer-damaged vertebra to strengthen them. If successful, she won’t have to wear a back brace anymore.
is out of spine surgery. Everything went fine. “I’m ready to work on my Pippin routine,” she said. “Broadway’s gonna need to take another look.”
162. Returned home from two days of medical treatments in Columbus to discover many food gifts from friends and neighbors. If you’re going to go through something like this as a family, it’s incredibly helpful to have support, and we appreciate all of it.
163. I took a lot of video of Nancy’s experiences over the last year and a half – here’s a little bit of the family enjoying sunset at the beach last week — still photos can be viewed higher up in this thread.
164. When @cincinnancy
was getting chemo, an amazing thing happened: @Lin_Manuel
contacted her, FaceTimed for a few minutes & sent her this message praising her nonprofit @transformcincy
, which gives clothes to trans & non-binary teens. Donate here: http://secure.acceptiva.com/?cst=He7kLw
165. The Cincinnati Inquirer did a story on @transformcincy
. “The fundraiser has received local and national attention. There have been no major donors so far, just over 500 small donations from individuals, says Tristan Vaught, co-founder of Transform.” https://secure.acceptiva.com/?cst=He7kLw
166. Nancy and the girls are downtown today having a photo shoot just for the hell of it — a friend taking some pictures.
167. Here is @ava
on why you should donate to @transformcincy
, a nonprofit that gives donated clothes to trans & non-binary teens. To donate, click here: https://secure.acceptiva.com/?cst=He7kLw
169. Dropped Nancy off with a friend who is driving her to Columbus today. The foggy early morning atmosphere makes the suburbs feel Spielbergian.
170. This is the first day in a long time that I’ve been in the house by myself with no other people – just the three dogs. I feel like I am wearing a weighted blanket.
171. I’ve been working on a Ray Romano impersonation, and I just realized that it sounds not too different from my Desi Arnaz impersonation, and everyone in the house agrees that they both sound like a Muppet. https://twitter.com/mattzollerseitz/status/1207646241485676544?s=21 https://twitter.com/mattzollerseitz/status/1207646241485676544
172. At @cincinnancy
’s request, I got a table out of storage and it has been permanently designated The Puzzle Table.
173. The gallows humor from me and @cincinnancy
is about to get extreme, so mute, unfollow or buckle up, kids.
174. Nancy: “How much did your stepdad’s cremation cost?”
“Mine will be $600.”
“Can I mix your ashes with your sister’s to create a new, all-powerful super-sister?”
“I don’t think that’s gonna work. Mine’ll be new and hers are old and dusty.”
175. Puzzle time.
176. Nice day yesterday followed by a rough night.
is receiving the Woman of the Year award from @CincyChic
being greeted by members of the community at the gala tonight honoring her and raising funds for @transformcincy
180. Rewatch of Waiting for Guffman, a @cincinnancy
fave. Each time I see it I’m more impressed w/the production itself — as Nancy points out, the orchestra is excellent. Balaban’s conductor may be the most talented person involved, followed by the narrator (Lewis Arquette). 1/3
181. No movie better captures how New York remains an indestructible sanctified artistic ideal even after it has kicked your ass and sent you back home to Blaine, Missouri. There are Corkys everywhere. 2/3
182. So many wonderful, fleeting acting choices, like the way Catherine O’Hara occasionally mouths Fred Willard‘s side of the duet during their audition, and Parker Posey’s character letting everyone know she can kinda dance by working high kicks & splits into everything. 3/3
183. Many thanks to @Winter
for recording this most excellent video urging everybody to contribute to @transformcincy
, which gives donated clothes to trans and non-binary youth. Here is the link to donate: https://secure.acceptiva.com/?cst=He7kLw
184. Listening to early 20th century recordings full of pops & scratches. Music from another dimension.
185. I had a dream last night that I had to drive a Sherman tank everywhere. Other than that, the portrait of daily life was mundane. Drive the kids to school. Go to the grocery store. Take the dogs to get their toenails clipped. But in a tank.
186. I have spent a great deal of my day dealing with issues related to my wife’s illness – things related to the health plan, medicine, pharmacies, in-home assistance. It’s shameful that our system requires this level of fanaticism to get anything done.
187. I will never stop being in awe of the bravery, focus, endurance, and humor that my wife @cincinnancy
has demonstrated during the final stretch of her life. Her children and her charity @transformcincy
are all legacies. Her example is another.
188. Nancy is following another viewing of Fosse/Verdon with a revisit of Six Feet Under. “Sense a theme?”
189. Nancy just now: “Don’t leave a voicemail for that man. Send a text. Leaving a voicemail is the worst thing you can do.”
190. Nancy is approaching the inevitable with a lack of sentimentality that is breathtaking in its clarity. Throwing out boxes of business cards. Telling me to box up her summer clothes for donation. She’s living entirely in the present and thinking about the children’s future.
192. Today @cincinnancy
is having radiation treatment to alleviate intense pain in one of her hips. Tonight she is attending a gala at The School for Performing and Visual Arts. We are hoping that the first thing doesn’t too-adversely affect the second.
194. We are in Columbus again today for more tests – at this point it’s basically seeing how far the cancer has advanced. Scans in the morning, should know more later in the day.
195. Chemo seems to have slowed the spread of the cancer, although it is still advancing. A series of radiation treatments starts tomorrow.
196. Returned home to a bill from a rather famous and well regarded medical facility that had zero effect on improving Nancy‘s health. I understand that medicine is a bit of a crapshoot, but it’s still kind of a weird feeling, owing money for that.
197. In a conversation with a family member today, I described myself as getting “irrationally angry“ about a lot of small things, but upon reflection I don’t know if the anger is all that irrational.
My dear @cincinnancy
will receive a proclamation from Cincinnati today, honoring her years as a bridal makeup artist with @brideface
as well as her wonderful nonprofit @transformcincy
, which you can donate to here: https://secure.acceptiva.com/?cst=He7kLw
198-199 (forgot to number the previous one): here’s Nancy and daughter Ella, a cofounder od @transformcincy
, holding a proclamation from the city that was awarded today.
200. Cincinnati/N KY: join me & @cincinnancy
& friends of @transformcincy
at as we celebrate Nancy getting an award from the city, which you can view in their display case. Wonderful cocktails plus merch raffle to raise funds. 4-7 pm. Address: http://cincinnatirefined.com/arts-design/japps-cocktail-bar-main-street-over-the-rhine-otr-nightlife-remodel-molly-wellmann-cincinnati
202. Reality cant be seen clearly in the present. The eyes are blinded by bits of debris that have broken off in the storm of the present. Only when it’s safely in the past can the present be seen.
203. Our pit bull just climbed into our bed & cut one, and it sounded like a muted trumpet. Nancy: “Was that the first three notes of ‘Summertime’”?
204. Blumhouse presents: BEAUTY NIGHT
205. A 1000-piece “Movies” puzzle in progress.
206. Thanks to @EsquireTheatre
for hosting today's free screening of YENTL in honor of @cincinnancy
& her nonprofit @transformcincy
, which provides free, donated clothes to nonbinary and trans kids. To make a donation yourself, click here: https://secure.acceptiva.com/?cst=He7kLw&fbclid=IwAR1q2RfOtzuyPaW6FKhTcmYjXjQ3XNmfYss1_4k_4KKzwlauCZxuI2-EtdQ
207. Received a letter Friday informing us that a series of 10 radiation treatments to my wife’s hip bone, intended to ease the excruciating pain she’s feeling from her cancer, was denied by the insurance company. She had completed 9 treatments. Will deal with it Monday.
208. Hopefully this can be resolved in our favor, but I resent the dance the patients have to do with insurance companies, where it seems like they are pushing back against paying for things hoping that you will get tired of fighting then & give up.
209. We also had an incident last week where I had to pay out-of-pocket for two painkillers because insurance felt Nancy was going through them too quickly. (I guess they’re concerned about dealing.) They subsequently said they would refund the money: $250. What if they hadn’t?
210. This is still not as bad as when my son was diagnosed with asthma 12 years ago when I didn’t have any insurance at all – within months I was teetering on the edge of insolvency. No civilized nation should treat its people this way.
211. Shout out to every pharmacist who has ever scanned a coupon and/or an unspecified customer loyalty card to get the price of somebody’s uncovered medicine down a little bit.
213. Had a meeting with a death doula today. Was a bit skeptical going in, but she was great & helped clarify a lot of things for us. Learned about green funerals & different kinds of hospice care. Good to talk about this stuff openly.
214. Closure on the radiation treatment billing thing: turns out the facility doing the treatments forgot to submit a particular bit of paperwork. They have since done it, and now we are covered. Wish we hadn’t had that moment of anxiety in the first place.
215. Thank you so much, @pamelaadlon
, for urging people to donate to @transformcincy
, the nonprofit cofounded by my wife @cincinnancy
. To donate, click here: https://secure.acceptiva.com/?cst=He7kLw
216. Congratulations to my wife @cincinnancy
on her citation from the state of Ohio, in honor of her work with @transformcincy
, “...a bold and laudable idea that has been molded into reality.” To donate, click here: https://secure.acceptiva.com/?cst=He7kLw
217. Happy Valentine’s Day to my wife @cincinnancy
, who married me in New York City almost 3 years ago.
218. Happy Anniversary, baby.
219. In Columbus again for chemo & more consultations. Nancy is in a lot of pain. Stoicism & meds only get you so far at this stage.
221. “This damn puzzle is gonna be the death of me!” @cincinnancy
announces, then chortles like an Elaine Stritch character.
on finding a bag of her favorite chips with only 3 chips left in them: “This is why every parent develops a facial tic.”
223. Pain management is a full-time job.
225. Video from Sunday. More than a dozen volunteers came to the new HQ of @transformcincy
in downtown Cincinnati. That’s my @cincinnancy
in the b.g., shaking off the overwhelming pain she’s in every hour of every day & getting to work. Donate here: https://secure.acceptiva.com/?cst=He7kLw
has new ownership: @winemedineme
(center, standing) a friend of @cincinnancy
(pictured with me in the corner there). Julie’s a good person & an excellent inheritor of Nancy’s legacy.
227. Big news: this morning (March 3) the @TODAYshow
is running a story on the Cincinnati nonprofit @transformcincy
and the legacy of cofounder @cincinnancy
, aka my amazing wife. Estimated airtime 9:30 ET. To donate to Transform, click here: https://secure.acceptiva.com/?cst=He7kLw
229. Watched Coal Miner’s Daughter with @cincinnancy
& Ella—another of Nancy’s favorites. Dug the directness of the storytelling & the unaffected documentary-like attention to atmosphere. Scenes of kids watching mom at work reminded me of this very household. 1/2
230. This is a rare female popstar biopic where the heroine doesn’t leave her man at the end, though Nancy thought “she should’ve left that scumbucket.“ Title song contains one of Nancy’s favorite rhymes: “The work we done was hard/At night we'd sleep 'cause we were tahrd.”
231. Met with a home hospice nurse today to go over Nancy‘s medication and figure out a more effective regimen. There’s a lot of it and it is tricky trying to arrange the dosage in just the right order to reduce physical pain & sustain functionality.
232. At a hospice facility where @cincinnancy
has checked in to evaluate her meds & see if pain management can be improved. Of course the entire staff is talking about the pandemic. Everyone is being super-careful about hygiene.
233. The break room TV just showed a press conference with Mayor DeBlasio talking about New York’s response to the crisis. I can’t recall another time in my life when everyone was so focused on a single collective threat. Even the post-9/11 period wasn’t quite like this.
234. Elderly man died at the hospice tonight. I heard his son talking about on the phone with an adult child as I was leaving. He brought his dad there after some major medical incident, realized he forgot dad’s glasses, went home to get them & when he returned “he was gone.“ 1/2
235. ”It’s probably better that it happened when I wasn’t there,“ he said. “Some day I’m going to be him and you’re going to be me, and I want you to remember that there’s no right way or wrong way to do this, as long as you’re doing the best you can.” 2/2
237. Went to the Hospice this morning with Phoebe to visit Nancy and was told that only one person was allowed in the room at a time. Ella came by later to visit her mom and at that point there was a new directive, no visitors at all, period. 1/3
i’m not complaining – I know that this is an extraordinary time and we have to observe extraordinary protocols to prevent further loss of life. It’s just a bit shocking to see how fast things are changing and how draconian it has to be. 2/3
I did feel terrible for people who had shown up without calling in advance, expecting things to be the same as they were yesterday, only to be turned away. As we were leaving we saw an entire extended family, including young kids, having to leave rather than see grandma. 3/3
238. My heart goes out to all the people who are dealing with catastrophic illnesses & medical problems, situations that are stressful enough on their own, but positively surreal under the current circumstances, the worst public health crisis in decades.
239. I’m going to have a talk with the kids tonight about the avoiding unnecessary trips to crowded public places until the pandemic is under control. https://twitter.com/TeamPelosi/status/1238336832665980928
240. At the front entrance of the hospice.
241. Nancy is back home from the hospice & currently sleeping soundly. She was in there to have her meds adjusted in a situation where professionals could observe her & make adjustments. We were told the process could last up to a week. Luckily it didn’t.
242. No one should have to deal with the type of intense recurring pain that Nancy is in. It’s neuropathic, caused mainly by cancer-damaged or partly collapsed vertebrae pinching the nerve endings in her left leg. Hoping new meds will alleviate this.
243. I wish this entire story were basically happy. I’m sure a lot of folks muted me long ago because it’s all too intense & sad, and I totally get that.
245. Nancy‘s friend Michele has been coming over to visit, and of course now she can’t come inside because Nancy is immunocompromised. So they had a “window visit” today.
246. After a day spent dealing with household financial crises and chasing toilet paper shipments in the shadow of a global pandemic, I’m in the basement with my kids & terminally ill wife waiting out a tornado. This is normal now.
247. “The fuck outta here with this melodramatic bullshit.” — Charles Dickens’ ghost
248. There are legitimate reasons to criticize South Park but I will always feel great affection towards its creators because 21 years after its release, the movie made my wife laugh pretty much continuously despite being in severe physical pain at every minute.
249. Been having a number of l frank and upsetting conversations with Nancy about what happens if she contracts the virus. She is immunocompromised with terminal cancer. She believes hospitals won’t even bother treating her. 1/2
250. Also dreading having to face the prospect of full-time hospice care (although we are not anywhere near there yet) because no visitors are allowed except during the final 24 hours of life. I can’t stay in the room and be her advocate. 2/2
251. I hate the idea that our healthcare system is so overwhelmed and our government response so bare bones that healthcare professionals would have to make these sorts of decisions on the spot. It’s like who gets a spot in the lifeboats when the Titanic is sinking.
252. Thank you to the nurses at Hospice Cincinnati who come to our house to help my wife with medical issues beyond my pay grade. You would be heroes even if you weren’t doing this during a pandemic.
253. Updates on Nancy & also parenthetically on the pandemic: Nancy is in sufficient pain that she might need an IV drip soon, but the hospice is reluctant to provide it, because they are anticipating needing huge supplies of morphine in the coming weeks because of the virus.
254. Think about what this means. The medical system is anticipating 1000s of patients in such torment that they are going to require regular morphine infusions, so they are conserving supplies even if it means keeping other people on pills & liquid Syringes.
255. Neither of us are mad about this because she’s not at that point yet pain wise and we understand that this is the reality we live in, but it’s still a bit of a shock to have to face reality this bluntly, beyond the boundaries of your own home.
256. Wash your hands, stay inside unless you truly have to go out, keep your distance from others, wear masks and gloves, etc. This is real, this is not getting better anytime soon. Don’t be selfish. Think about other people.
257. Took Nancy into the ER today for very minor surgery to take care of some issues related to cancer and meds. Of course I wasn’t allowed to go inside with her due to Covid19 rules. Had to sit in the car with the kids until the procedure was completed. 1/3
258. At some point people in this situation face the decision of dying at home without much supervision or being supervised without family contact. I feel fortunate that we have a house with seven people in it. Going through this alone would be unimaginable. 2/3
259. It’s weird living in an era where pretty much everyone is in a financial and mental health abyss except for the very wealthy. I haven’t posted in this thread very often recently because I feel guilty highlighting our own misfortunes when others are much worse off. 3/3
260. On the lighter side, here’s video of one of my kids riding a bike while the neighbor across the street plays the accordion.
261. Had to improvise a wound dressing a couple of nights ago and didn't have proper bandages, so I used cut-up strips of absorbent pads, small pieces of gauze and medical tape. It went very well. There was a time when I couldn't deal with the sight of blood.
262. Today was trying. Doctor visit posed logistical problems due to Nancy's decreased leg strength & wheelchair accessibility problems at location. Later there were problems w/Nancy's phone that were hard to solve (Apple finally got on the phone with us and took care of it).
263. Typical of Nancy's gallows humor: the wound was on her left arm (a drained cyst). When the doctor commented on the size of the incision, Nancy quipped, "There goes my career as a forearm model."
264. No meaningful writing work got done today, and I had to cancel two phone interviews as well. But this is how it goes.
265. A friend of Nancy’s came over with bags of candy and little plastic eggs filled with more candy. She had the eggs all over the property so that our kids could have an Easter egg hunt. They range in age from 15 to 22. Shockingly nobody was too cool for this.
266. Nancy had a spill this morning in the kitchen, fortunately not damaging. She’s lost a lot of leg strength, which is hard for her because she‘s used to being a flurry of activity. She’s in good spirits now, watching @BetterthingsFX
with Hannah, who has never seen it.
267. Nancy‘s friends have been coming over to visit. Because she is immunocompromised, they stay on the front lawn and the conversation happens through the window.
268. If you’re wondering about the identity of the person in that small cardboard standee, it’s Steve Buscemi. Nancy is a huge fan. She also has a blanket, a pillow, a coloring book and a bunch of other Buscemi-themed merch.
269. Happy birthday to my wife @cincinnancy
. I’ve known her for over 30 years and been married to her for three. Such an extraordinary person.
270. A friend of Nancy’s asked friends to record birthday greetings in advance and edited this compilation video for her. https://vimeo.com/409394687
271. Family movie night. Nancy chose TREES LOUNGE because it’s by her favorite actor, Steve Buscemi.
272. Nancy was admitted to hospice care early this morning after some deliberation. She said she didn’t feel well and she’s had a wet cough for a few days. She’ll be in for 5 days, being monitored. I’m there as her advocate. More details when I have them.
273. Nancy is in hospice care currently, upright in a hospital bed wearing fresh pajamas and waiting on some tests to see how her lungs are doing. As per usual she is insisting on trying to do everything herself and only asking for help when it’s obvious she can’t do without it.
274. I can’t tell you if this is the end or just another step on the journey. My wife’s relationship to cancer is the scene in Jaws where the shark comes up on the deck and tries to eat Quint, and Quint goes down kicking and hacking it with a machete. It’s astounding to see.
275. From the very beginning Nancy told me “if I die of this, don’t you dare say that I lost my battle with cancer,“ but I really don’t know how else to describe what I’m seeing.
276. Hospice day 3. Nancy is in a lot of pain & having more mobility issues. Also some heavy coughing. Morphine allows for some rest, oxygen some energy. Only one visitor allowed per day & you can’t leave the room. Am sleeping on a collapsible chair on the floor beside the bed.
277. Continuing the hand portraits in this thread.
278. At Nancy‘s request, today’s movie was Parting Glances, which made a sudden indie film sensation of Mr. Steve Buscemi.
279. Hospice day 4. Nancy is in further decline, sleeping longer periods & enduring greater pain when awake. There’s also a rattling cough. Doctor is calling for a pain patch. I’m remaining compassionate yet also consciously detaching because it’s too much to process unfiltered.
280. I was reminded of an exchange we had a few weeks back. I told her I believed there was a world beyond what we could sense. “Maybe you can be with your sister again,“ I told her. “You know I don’t believe in that shit,“ she said. 1/2
281. But later in the day she had changed her tune. “If there is an afterlife, you better believe Jen and I are going to compare notes,“ she teased. “also, be ready, cause I’m gonna haunt the shit out of you.“ 2/2
282. Nancy is sleeping right now, and I’m waiting to talk to the doctor about next steps, whatever those are. Before she went back to sleep she was talking about how “I thought we solved all of this at the zoo. I think we can find the answer at the zoo.”
283. “She died of cancer.” That’s what Nancy wanted me to say. And that’s what happened at 5:53 PM on April 27. Nancy’s sister Jennifer, my first wife, died 14 yrs ago at 6:01 PM on April 27. Nancy began declining meals and pills shortly after midnight after learning the date. 1/
I learned of Jen’s death from my brother Rich, who was there when she had her heart attack. Richard met Nancy at Jen’s memorial, married her in 2008 and they divorced eight years later. Rich texted me today shortly after I learned the news. He just had a feeling. 2/
I arrived at Long Island College Hospital 1 minute after Rich was told that Jen had died. He was the one who broke the news to me. 14 years later, I broke the news to Richard. Two Seitz brothers bonding over the loss of the Dawson girls. 3/
The last movie we watched together was Parting Glances, starring her favorite actor, Steve Buscemi. It ends with Buscemi‘s character, who is HIV-positive, going to Fire Island to die on his own terms. Nancy learned it was April 27 while we were watching that film together. 4/
I’m sure it wasn’t a coincidence that in her last 16 hours of life, Nancy refused all food, eventually refused liquids, and closed her mouth so nurses couldn’t give her pills anymore. I think she wanted to go today. I think she wanted to go on her own terms. 5/
I told Nancy weeks ago that I wanted to be present for her death. She told me she didn’t want that, and when I told her that she probably wouldn’t be able to control it, she laughed in my face. That wild, Elaine Stritch laugh of hers. She was right. That’s my Nancy. 6/
Nancy would not want flowers. She would want you to give to the charity she founded, @transformcincy
, which provides free, donated clothes to transgender youth. She called this charity her sixth child. 7/7 Link: https://www.transformcincy.org/donate
As a friend of hers joked, nobody could tell Nancy Dawson a goddamn thing, so it is fitting that she went out like this, on a day that meant everything to her, on her own timetable, surprising everyone. She didn’t beat cancer, nobody can. But I think she outsmarted it.
284. The dogs have been sleeping on stuff that I brought back from hospice. Mabel curled up on top of Nancy’s Steve Buscemi blanket and has been there for a couple of hours now.
285. I gave Nancy‘s oncologist an account of her final days. I included a description of the fugue state that she went into shortly before her death. She was staring up at the ceiling, her eyes following some kind of motion, and her right hand looked like it was conducting. 1/2
286. I said, “I wish that I could’ve looked through her eyes and seen whatever she was seeing.“ He said, “Eventually, we all will.“ 2/2
287. The neighbors did tributes to Nancy in sidewalk chalk and candles tonight.
288. Nancy's friend Michele mentioned the time a couple of weeks ago when she and Nancy were hanging out, and Nancy pointed to her phone and said, "Will you hand me the potato?" After a horrified silence, Nancy laughed and said, "I'm just fucking with you. I know it's a phone."
289. Nancy‘s beloved beagle Toby came upstairs and slept in the bed with me last night. He actually hurled himself against the door and knocked it open, making a spectacular entrance like in those old Kool-Aid ads. Then he stared me in the eyes as he made himself comfortable.
290. This story isn’t over, so I guess I’ll just keep the thread going until it feels like the right time to stop.
291. I was hanging out with one of my kids in the room where Nancy spent her final days, and a makeup brush fell off a shelf and clattered loudly on the flood. Probably a coincidence. But she did promise to "haunt the shit" out of me.
292. When this all finally sinks in it's gonna be bad.
293. The silence left by the absence of Hurricane Nancy. Like a previously unseen continent has opened up in my house.
294. The dogs are hanging out with me more often than they used to, I assume out of loneliness, or pity. I'll take it.
295. Too bad there's no karaoke right now.
296. I’m working on a kind of virtual memorial to @cincinnancy
. Hope to have it up & running by early next week. You can upload videos, pictures, stories, notes, etc. You don’t have to known her personally, you only have to have been affected by her story.
297. We're creating a virtual memorial to @cincinnancy
. If you knew Nancy or were affected by her life story or work, you can send notes, photos, video and other things to [email protected]
and we will add them to the grid.
298. The box of ashes arrived from the crematorium today, along with a stack of death certificates, which are necessary to take care of lingering administrative details. The kids all gathered in the kitchen and looked at the box. It was agreed that there should be an urn. 1/2
299. This is another instance where the living depart from the dead's script. Nancy did not want an urn, she thought it was a ripoff. "I'll be ashes by that point, what difference does it make what they're in? Just scatter me in the backyard." We'll do that too, of course. 2/2
300. I was reminded by Hannah that although I purchased a ceramic Walt Disney castle replica (with removable lid) for her mother's ashes, we never actually put them in there because we didn't want them to spill. Another item for the To Do list. June!
301. Progress on the memorial website continues. We’ve been gradually putting the house back in order, including going through Nancy‘s clothes and giving some of them away and having the kids keep some. How strange that I’ve been through this twice in 14 years.
I’ve also been cataloging still photos and video that I’ve been keeping meticulously for the last two years (the period of Nancy’s treatment) and putting them on a hard drive. At some point I might make a film about all of this. But it’s radioactive material right now.
I have felt Nancy’s presence several times since she died. It’s a different energy. Her sister’s was cool and calming. Nancy’s is warm and playful. So incredible that such different women could come from the same parents.
302. Sometimes the dogs will follow movement around the room or stare up at some interesting point in the distance. They might just be dogs being dogs. But I always wonder if Nancy is out there somewhere. I can tell they miss her.
303. I’ve spent a lot of my time in the last 14 years writing about Jennifer, directly or indirectly, and now I’m going to do the same thing with Nancy. Death is the subject that defines me. I accept that with a full heart. I’ve lost so many people that were important to me.
But really, who is that not true of? The most eye-opening thing about the last two years wasn’t the experience of seeing someone die of cancer while building a great legacy; it was finding out that so many friends are secretly in great pain, personally or as caretakers.
Considerable progress has been made in the last couple decades encouraging Westerners to talk more openly about death, grief, trauma, disabilities and pain. But there is still a stigma surrounding these subjects because of the pressure to just keep going and never “complain.”
A veil has been lifted from my eyes and now I see reality. More people are in pain, physically or as caretakers, than anyone can imagine. Some render themselves invisible because they have been conditioned to do so. The healthy and unencumbered often ignore those who do talk.
I don’t know what to do with this knowledge but I think about it constantly.
304. A relative on our Verizon family plan told me his service had been cut off. I was surprised – I thought we were on auto pay. Turns out Nancy didn’t have us on auto pay & had let things go for five months, the duration of her terminal diagnosis. 1/3
I have no idea why we weren’t cut off sooner – maybe it was a Covid thing or some kind of weird systemic oversight. In any case I had to call Verizon and explain the situation and pay up. Phone service guy was really nice. Weirdly, he lives in my old neighborhood in Brooklyn. 2/3
I think I’ve been holding up well for the most part, but asking the procedure for terminating Nancy‘s account – which we need to do to save that money — broke me. Almost lost my composure with my new Brooklyn friend. It’s always the little things. 3/3
305. Continuing this thread because the aftermath is part of it as well, also I want to chart fluctuations in mood and functionality. Short version: I was doing “very well” for the first month and now the emotional bill has come to due & things are difficult.
As I have mentioned elsewhere, the outwardly “difficult” tasks, like notifying friends and reading condolence notes and making cremation arrangements, went fairly smoothly, but the little stuff, particularly unexpected little stuff, fucked me up to the point of incapacitation.
Every death & mourning is different. That’s because of different circumstances (the nature of the relationship, whether you were prepared for death in advance) and also external factors (such as a plague or a wave of police brutality) can trigger tangential but related memories.
The hardest moments for me have been the mundane but necessary housekeeping things, like canceling Spotify account or changing to a different checking account to auto debit a loan repayment. These are especially hard when they come out of the blue because you forgot about them.
I got a letter from the bank saying we were several months behind on the mortgage, only because Nancy was the one who handled that and in the last six months of her life she just failed/forgot to take care of it, understandably.
Switching over responsibility for mortgage payments, auto loan repayments, etc. is a multi-step process involving death certificates and/or copies of the will and/or power of attorney, and assembling these documents can be traumatic.
I was talking to a friend last night who has been through this and we agreed that it’s best to be transparent with children about financial matters and create some kind of master file with essential documents, clearly marked, with little notes saying what you do with them.
Of course the logistical complexity of ordinary life, coupled with the emotional weight of this sort of bookkeeping/archiving means that a lot of people never get around to it until it’s too late. Which of course is understandable. Life can be hard that way.
My response to sudden and unexpected emotional pain is to want to go take a nap, which I guess is sort of like a tiny “I am dead” pantomime. I may do that in a little bit.
The lesson I try to reteach myself during this period is “it’s not a strongman competition, you don’t win any prizes for convincing people that everything is normal.“ Suppressing emotion is bad for my physical as well as mental health. Transparency makes things better.
I miss her texts.
306. We are almost 2 months in. I had a bit of irrational exuberance/overconfidence right afterward because I was relieved of caretaker duties and also, I’ve been through this before, so I thought it wouldn’t be as bad the 2nd time. But it is. The impact was just delayed.
I’ve been sleeping a lot. This happened to me before, after Jen died, and I even made a movie about it, “The Bed Thing.” Can’t seem to get my sleep schedule into anything resembling a rational/orderly pattern. https://vimeo.com/365245527
Also been doing a thing where I wake up nice and early, answer a few emails, make a phone call, drink a glass of juice or eat a bowl of cereal, and then go to bed for eight hours. Which is really not conducive to the way workdays are conducted even during the pandemic.
Fortunately I have five older kids at home and they are functioning well and picking up a lot of my slack, which obviously is not something I would want them to do under normal circumstances. We are all in grief counseling individually.
Been spending a lot more time on the phone with insomniac friends who live on the West Coast, because they are just getting into a groove around the same time I am – dawn my time, 2 AM theirs. Not a sustainable strategy but it works for now.
The big goal in the next few months is to deal with the anger I feel (turned inward & transformed into depression) over finally getting together with someone I clicked with emotionally, physically & intellectually (the big 3) only to have her taken from me almost immediately.
I think about my favorite Wes Anderson movie, The Life Aquatic. The jaguar shark doesn’t have anything against you personally, it just eats people because it’s a jaguar shark. Rationally I understand that, but emotionally things get cloudy. https://vimeo.com/365245527
Screwed up that last tweet, it was supposed to be a link to the video I did with @stevensantos
about The Life Aquatic. Here it is: https://vimeo.com/77368356
307. I’m starting to think that when people repeatedly tell you how strong you are and how confident they are that you’re going to get through this, it’s a sign that they are uncomfortable hearing about your trauma.
308. I want to follow up the previous, rather alarming and sad thread with something more hopeful. A few days ago when I was still in the "live in bed" phase, one of my sons poked his head in and said he was going to the drugstore and did I want anything. I asked for Sominex.
Sominex is one of the sleep aids I took during the darkest period after Jen's death. Sominex to go to sleep (sometimes after red wine), No-Doz to wake up and stay up (washed down with coffee and caffeinated drinks). Obviously not healthy or good.
"The Bed Thing," the short film linked above, was a dramatized depiction of that period of my life, which included buying a new bed to get a "fresh start." (I'd been sleeping on the couch.) My son has seen the movie and, more importantly, heard the stories behind it.
He brought me the Sominex. I asked him to leave it in the bathroom. Then I felt self-conscious about being in bed all day (it was after 4 p.m. by that point) so I got up, bleary-eyed. On his way out, the boy hugged me and said, "I love you."
It was unexpected and I could tell by the duration of the hug that it was an expression of deep concern that was also trying not to be judgmental. Well, after he left, I broke down. Then I went and cooked dinner and did a little writing.
I continued to sleep heavily for the next couple of days. In the last 48 hours I've been functioning much better. The Sominex is still sitting in the bathroom cabinet, unopened. I think I might just throw it out. Not that I expect to have no sleep problems....
...It's more like, "I have been on a version of this path before, I know there are pits to fall into, but I want to concentrate on the new, surprising pits and not fall into the same ones I fell into last time." So no sleep-aids and wake up-aids and related stuff. Not this time.
I think I was greatly at risk of ending up a zombie parent if I'd gone down that road, or into that pit, yet again. I won't say the hug "stopped me" exactly but it definitely caused me to reflect on the collateral damage from self-destructive self-medication.
I've had a number of phone conversations with friends in the past three or four days, often unconnected to the grieving -- just shooting the shit about whatever -- and that has helped as well. I've been writing more and have some bigger pieces on deck.
This thing is like body surfing in the ocean. You never know when a wave is going to capsize you. That's fine. This is how it goes, as one of my kids said, about all of this stuff. I have no lessons to impart here. Except maybe "pay attention to the deeper meaning of gestures."
309. Spent the day dealing with household paperwork issues, including official transfer of responsibility for household debts of various types. Everyone on the other end of the phone was very kind. Strange to realize how many conversations of this type they have each day.
310. The other day I realized that what I had represented as a high degree of daily functionality was actually a form of denial. Including the various projects I'm currently working on. Something to deal with in therapy and in conversations with Nancy's friends.
311. I am carrying a tremendous load of anger over finding happiness with Nancy after many years of a very chaotic and mostly unsatisfying love life, then having it overshadowed and then taken away by her cancer. Obviously the illness is part of our love story, too. I get that.
312. As I periodically restate here, nothing in this thread is intended as an "answer" to any of my or anybody else's problems. I'm just thinking out loud.
313. A couple of nights ago, Penny, our old Labrador, began barking loudly and insistently in the living room while seeming to follow something around the room with her eyes. I think it was some manifestation of Nancy. Yes, I believe in this stuff.
314. I've concluded that I'm in deep denial about the impact of Nancy's death. Never before have I gone so long (four months) without writing a proper obituary for someone so close to me. Not judging myself, just recognizing a fact.
315. I've come to understand that I process grief through my writing and filmmaking, and I intend to fully commit to that at some point. But right now I'm basically ignoring the emotional monolith looming over me at all times. Not healthy.
Again, I am not judging myself, just continuing the process of (relatively) transparent self-observation on this here platform, in hopes others can respond with personal stories. I AM NOT LOOKING FOR ADVICE, just stories.
316. Nancy and I recorded all of our major medical conversations with doctors, and a number of personal conversations about the kids, for recordkeeping/posterity. I listened to a few of them last night. I think that might have been a mistake. It really fucked me up.
317. Was nearly a victim of 2 phishing attempts in the past couple weeks. Was told by a security person that this is common with people who recently lost a spouse. People call companies & utilities & use available info scraps to obtain more info & build a dossier. 1/3
You’re not thinking clearly & assume certain requests for money are legit because there’s always a period of financial disarray following a partner death—things are let go, payments go past due, etc. wording of “URGENT” emails can panic you further.2/2
One of the scams was people representing themselves as Amazon, the other was Geico. I assume they chose these companies because they are so big that there’s an excellent chance whoever they are scamming does regular business with them. Watch out. 3/3
Here’s a profile of the Amazon scam. Apparently it’s pretty common, but for some reason I had never heard about it before. https://hip2save.com/tips/amazon-scams/
The person from the Geico security department who spoke to me about the scam attempt said at the end, “Human kindness is in short supply these days.“ No shit. Maybe that’s what should be on our currency.
I haven’t updated this thread in quite a long time because I’m still in deep denial about what happened. Six months in, and I’ve been too distracted by unexpected crises (and projects I under took partly to distract myself) to really face it.
I felt like I should check out again because I just filled out the 2020 census (just under the wire!) And having to sit there and describe the relationship of everybody in my household the spring (seven people total) sent me right back down the rabbit hole.
I’ve been having dreams every single night for the last week which, when decoded, are about suppression/repression and the return of the repressed and also coded warnings that I have to remember/confront had on at some point, and it should be soon, because the rawness is fading.
Tip: mention @twtextapp on a Twitter thread with the keyword “unroll” to get a link to it.