-
Flytipping
Sometimes I feel like the Madame Tootsie Bagel blog tends to get a bit overconfessional, particularly about my past misdeeds and foibles. (By the way – point of procedure – it’s pronounced “Madame” as in the way British shopkeepers or Judge Judy say Madame, not as in the French manner.) I do disclose my past oopsies with a great deal of candor, probably too much so. Dad says I’m remarkably open on the blog, and has sent me a text from time to time of issues he doesn’t want me to mention. Lips sealed.
Max told me yesterday that he got caught up on a bunch of my recent blog entries while he was on the phone holding with the computer tech service people. (I’m honored). He had a few interesting comments, including about my recent post Guideposts in which I mentioned my high school friend Susan getting back in touch with me a couple of years ago with an apology for teenage “bullying.” Max remarked that maybe Susan was “working her Fourth Step” and trying to “make an amends” to people in her life she had hurt. This is 12 Step lingo from Alcoholics Anonymous. He said that people working this step often get in touch with high school friends and associates to apologize and ask forgiveness for high school stuff.
Max has been in AA for many years, since he was a teenager and got thrown out of a college for misconduct related to alcoholism and entered rehab. (He finished college and graduate school elsewhere.) Being non-drinkers is one of the things that brought us together.
From what I gather, during the Fourth Step, people in the program are supposed to make a “searching and fearless moral inventory” of their good and bad character traits and think about “amends” to people they have hurt. This is not easy, obviously, and many people in AA and other 12 Step groups spend a lot of time doing and redoing Step 4 with their sponsors. Max often announces that he is off to meet with his sponsor concerning Step 4, or that he is redoing Step 4 in order to really put more work into it.
Personally, I think I could ace Step 4. I could very easily make an inventory of my character defects that was alphabetical, chronologically annotated, immensely detailed, and probably illustrated as well. All the times I have lied, alienated people around me, felt jealous or bitter, acted like a big shot, shirked responsibility, or failed to read the room. Then I could make a kind of newsletter confessing all, making my amends, illustrating it with a nice catchy background and layout, and mail it off to everyone I can find from the kid I stuck my tongue out at in pre-school to down to the neighbor whose trash can I used for my dog’s poo bag last week. (By the way, when we were in the UK, Max and I kept seeing signs near our hotel that said “No Flytipping.” We had no idea what this meant, but we imagined it was something highly illegal, perhaps related to animal cruelty or vivisection. Finally we realized it meant “no dumping your trash in our garbage cans.” Just so you know.)
-
Swing Dancing
I think it’s time to bring Anger Month to its close. It was good to marinate for a while in my petulant and peevish thoughts, but no more. Lately I still feel like an emotional rollercoaster anyway. I can be out with Max picking up dinner, sitting in the car talking and laughing and having a fun time, and then something triggers me and tears start coming down my face a couple of seconds later. I really feel emotionally incontinent right now. Or crazy is another word for it.
I received a letter from an old friend this week, Regina, who is a German lawyer. We’ve visited each other in each other’s countries and hit it off. Like me, she had a baby in her forties, a baby girl who is now all grown up. I met Regina through Thomas, a German law student who worked at one of the law firms where I was employed back in the day. Thomas was really fun. We did a lot of touring together, and went swing dancing, and once he drove me to Atlantic City to try out for Jeopardy. (I didn’t make it.)
In her letter, Regina told me that she had seen Thomas recently. They met for coffee and caught up on each others’ lives. I haven’t seen Thomas since I went to his wedding to Sylvie in 1999. Regina said in her letter that Thomas is working for a firm helping German businesses divest of Russian assets, and that he and Sylvie have a house in France where he loves to cook and drink wine. She also said that Thomas and Sylvie have no children. For some reason this made me terribly sad.
I suppose that Thomas and Sylvie could have chosen to not have kids, but it just seemed to me that they had been denied this primary experience, and that this was sad and even tragic. As if there must be a long medical saga behind it or even possibly stillbirth or death. I’m probably projecting wildly, and I have no idea and certainly don’t plan on asking.
Can you really mature into yourself if you are not a parent? I probably am not asking that question very articulately. Being a parent is such a life-changing experience. I didn’t really forgive my own parents for so many issues until I became a parent. I was a perfect mother in every way before I actually became a mother (in my own mind), and I didn’t understand why my mother couldn’t be perfect too.
I guess my sadness for Thomas and Sylvie’s childlessness comes out of my sadness at our new childlessness. I picture in my mind Thomas struggling to answer strangers’ questions about how many children he has, and it’s awkward for him, and he probably hates being asked. But Thomas was always very convivial and affable and gregarious and smooth and speaks five or six languages and probably is not at all anxious in the way I imagine. He probably loves his life and the few times a year I connect with him on LinkedIn he seems quite happy. I think I need some emotional Depends.
-
Pet Peeves
As we continue to celebrate “Anger Month” here at the Madame Tootsie Bagel blog, with all its attendant (non-existent) festivities, rites, rituals, honors, and privileges, let us take a few moments to reflect on just a few of the many petty and trivial things I find irksome:
- Comments about Prince Louis. Prince Louis is a normal five year-old kid. He does not have special needs; he is not “on the spectrum,” and his royal parents do not need to “get him evaluated” as soon as possible. Christ on a Cracker. Would your kindergartner be perfectly behaved and attentive for long ritual ceremonies in public? Would you? Shut up already about this kid yawning or pulling a face. Not special needs, not even close.
- And furthermore: comments about kids who DO have disabilities and special needs. No, Korbin’s humming and finger tapping is not preventing your little darling from getting an education and advancing to the highest echelon of the math class hierarchy. No, the fact that there will be no cake at the class holiday party (because Quinn has diabetes) is not keeping your child from experiencing the true joys of Christmas. Shut. Your. Pie. Hole.
- People who talk on their phones, or talk at all, during a movie theater movie. And long loud previews and ads that take up 20 minutes.
- People who believe that the physical capacity to return their shopping carts to the shopping cart corral in the grocery store parking lot is a sign of innate goodness and righteousness on their part, or that inability/failure to do so is an indication of a lack of a moral compass, like some weird sort of 21st Century morality play at Safeway. I can’t. I just can’t.
- People who express blatant prejudice or absurd fears for their safety, and then tell you to read “The Gift of Fear” and believe that its takeaway is that your “inner voice” is always correct, no matter how neurotic, racist, illogical, or phobic that voice is. People, that’s not the gift of fear, or the meaning of that book. Re-read, if you ever read it at all in the first place.
- The face that it now costs $17.29 for lunch out. I’m talking a quarter white meat Peruvian Chicken at Don Pollo with two sides (rice and beans, and salad) and a Diet Coke. This is unreal.
- And finally: people with strange laughs that dominate the entire back dining room at Copper Canyon Grill when you are just trying to get your Dad the prime rib he has been looking forward to for his entire visit. Oh. My. God.
-
Freecycling
Yesterday when Polly the Beagle and I were out for our morning walk, I saw that a neighbor was freecycling a little blue chair for a child. For a moment or two I thought something like “Good back support, nice deep tush, and armrests. Sarah could do well sitting up in that.” Which was silly because, not only is Sarah dead and gone, but it was really a little kid’s chair, not a chair for Sarah as a teenager like she was at the time of her death.
I guess everyone has moments like these, not just parents of dead children. It seems to me looking back, although it’s hard for me to focus clearly on my random mental musings when Sarah was still alive, that I would see things in stores or other places that reminded me of her babyhood or toddlerhood, and then think, of course she’s too old for that now, or she was so cute at the age she used xyz. I think the feeling was one of warm rosy nostalgia rather than acute sadness.
I remember when Sarah was about two or three, her nanny’s sister had a baby, and on the weekend Sarah and I brought over some presents for the baby and some baby equipment Sarah was too old for. There was a baby swing Sarah had enjoyed a lot as an infant but hadn’t used in a long time and was, of course, infant-sized. We set it up for Baby Daniel. When Sarah saw it all set up, she had to cram her big toddler tush in the seat and have one last swing. She didn’t look very comfortable but she was determined. Maybe she wanted to show Baby Daniel how to extract maximum fun from the swing. Or maybe she was suddenly feeling unready to give it up. She could be a possessive little bugger and she was an only child and didn’t have a lot of sharing opportunities.
Last night Max and I watched the movie “Till,” which is a very good but deeply sad movie about a mother’s grief for her murdered child and the absence of justice for his death. It was a hard watch in many ways for both Max and me, speaking beyond the fact that it is a hard to watch on its face. Seeing a teenager die for no reason is horrible and seeing his mother’s grief is almost unbearable. In the movie Mamie says at one point something like “He was a breech baby.” (Just like Sarah was). “He had a lot of problems but he was always perfect to me.” It really went straight to my heart.
At my bedtime Max and I were having a little cry, talking about the movie and talking about Sarah. He shared with me a song he had been listening to a lot lately that he’d discovered, which is really beautiful, but also sad, called “The Joy In Sarah’s Eyes” by Douglas Dare. There’s a verse that goes:
Sarah, I see you every day
And though I age, you stay the same
How I remember the joy in your eyes
That joy still in me, and keeps me alive
Oh it, keeps me alive
And it, keeps you, oh, it keeps you alive… -
Guideposts
Destiny is all, or so Uhtred from The Last Kingdom would have us believe. I’m not sure I agree, but when I look at the eighteen months, roughly, leading up to Sarah’s death, I see a series of guideposts. There was me getting back in touch with my law school boyfriend, who had lost a child. There was my weird mini-obsession with the death of my high school classmate who had a genetic disorder. And there was my high school friend Susan, who had lost her husband Tony, suddenly and unexpectedly getting back in touch with me on Facebook.
Susan and I were tight during 10th grade when we were both new to our high school, but then we kind of grew apart and made other friends during 11th grade. There were some incidents that I remember looking back as sort of typical high school girl-on-girl interpersonal aggression. A sleepover party in which she clearly had had it with me. (For the record, I was terrible at sleepover parties, and was known to scream at other kids to shut up and go to sleep.) An episode in which she and another girl charged some long distance calls to our home phone number while they were counselors at summer camp. My Dad was really ticked off by this, but I just figured it was their gig.
Susan has around 2000 friends on Facebook and is internet famous for a photo she took at the Million Moms March, and when she reached out to friend me I was flattered and pleased that she even remembered me. She asked if I was the girl she had gone to high school with, and then gave me an abject apology for bullying me if I was, and asked me to forgive her. I was a little perplexed, but of course I forgave her. Who holds a grudge for stuff like that?
Then I reached out to another old friend, Sheila, to ask “Am I so devoid of any sense of self that I didn’t realize I was being bullied in high school?” I mean, far be it from me to deny someone else the pleasures of a really good guilt complex, but I just don’t remember being acutely victimized. But perhaps I was? Or maybe Susan is just very hard on herself, especially since we were all about 15 years old at the time and lacked fully-developed prefrontal cortices.
Leaving aside these fascinating ponderances, I’m so glad to have her back in my life, because she has so many insights on grief and the grieving process. She is a walking teachable moment and she’s also funny as hell and runs her Facebook page like a literary salon. If I were one of those “Everything Happens For A Reason” types, I would be glad that the universe gave her a guilt complex and placed her back in my life. That is to say, I am glad that the universe placed her back in my life. But the loss of Tony and Sarah is not something I would have wished on a couple of fifteen year-old girls in Tretorns.
-
Stupid Fools
As my readers have probably come to figure out, May has devolved into Anger Month at the Madame Tootsie Bagel Blog, I’m just cheesed off about a whole host of stuff. The Grief Group, about which you’ve probably heard too much. The fact that The Wall Street Journal teased me with an article about six new fantastic documentaries, and then hid the damn thing behind a paywall. Mother’s Day. The weather. My friends’ kids continuing to grow up. Pollen. Striped fantods.
Does anyone but me remember Ed Anger’s My America from the Weekly World News in the 1980’s and 90’s? Ed posed as an extreme right-wing reactionary but I think the column was actually written by a stealth liberal. Anyway, it wasn’t the politics that made Ed’s work so fun to read — it was Ed’s expressions and his persona. Ed was madder than a one-legged man at an ass-kicking contest — his phrase. (Over welfare benefits, Russians, Jane Fonda, McDonald’s changing its menu, or what have you.) He was beer-spittin’ mad all the time about America and Americans and not afraid to tell everyone why. In college, we sometimes walked to the local grocery store (High’s Market) just to read Ed’s column, without actually buying anything.
It can be very funny to read someone’s screed in retrospect, and very cringeworthy too sometimes. I think I mentioned that my Dad dropped off a bunch of old papers and letters for me. I found a letter I wrote my family from Girl Scout Camp, I think the summer I was 10 or 11. I was apparently upset and angry because my mom had written to me that the family cat, Sasha, had been spayed while I was away. My beef was not over the spaying itself, but the fact that I was not there to proctor her through this important experience. I wrote the family on camp stationery:
Dear People,
I am extremely angry with you for having Sasha altered when I was gone. I asked you if I could be there and you said yes. I’m afraid that I can’t trust you anymore. Sasha is my cat and I want to be there when important decisions are made about her. You are dumb, stupid, fools. I am not sending you anymore letters for the rest of the session.
To make sure they understood just how really indignant and aggrieved I was, I then wrote “I Can’t Stand You” for the return address and sent the letter to “The Stupid Fools Who Live At: —, Austin, TX.”
I don’t remember much sequelae to this incident looking back; Mom wrote me a rather mild letter explaining that the veterinarian had told them they needed to have Sasha altered as she was going into heat again, and I would be at camp for another month or so and they did not feel they could wait. And for the record, Sasha wasn’t “my cat,” she was the family cat, although we did have a special relationship. I think, although I can’t swear in retrospect, that I did continue writing home to the stupid fools.
I guess the thought of Sasha having surgery made me anxious and I wanted to control my anxiety, and blasting my family was the way I handled it. It reminds me a little bit of the fact that while Max and I usually get along very, very well, our minor fights and kerfuffles would often arise in the context of taking Sarah to a doctor or specialist, or to the hospital for surgery. We both were desperate to control the situation and control our anxiety. Which is so hard to do.
-
Bee In My Bonnet
There’s a bunch of local news stories this morning about the arraignment of the parents of a teenager who died in their home last May, almost a year ago. Apparently the kid was found emaciated and unresponsive by the Rescue Squad and died a few minutes later at age 17. The child had serious and ongoing medical issues although it’s unclear exactly what those issues were because none of the kids in the house (there were nine) had much in the way of medical or school records. The mother said the child had diabetes and multiple sclerosis and long Covid-19.
I’ve seen stories about kids with disabilities either neglected or outright murdered by their parents over the years and I try not to read them or dwell on them. Normal, typical kids get abused and neglected and murdered too, very sadly, and unfortunately, people without a lot of community supports and personal and social supports (good medical insurance, good school district, flexible leave policy at work, reliable transportation, decent salary) have a much harder time raising children, let alone children with disabilities. Although parents who kill or neglect their disabled children seem to be quite well off sometimes too.
So I used to often think “There But For the Grace of God Go I” when I saw such news articles, in a kind of whole-wheatier-than-thou manner. However, you’ll be tickled to know that now that I’m firmly entrenched in the Anger Stage of Grief — see yesterday’s post — I’m jumping salty. I’m chewing fire and pissing vinegar.
Why can’t people keep their kids with disabilities alive and give them some quality of life? Why have nine children? And why is it that the Grandma is now in court, upset and crying, but when this was going on, and the home was filled with trash and feces, she apparently wasn’t paying any attention?
I used to worry that Child Protective Services was going to take Sarah away from us every time her physical therapist or another doctor reminded and bugged us that she really, really, needed to wear her AFO’s (foot braces) every day, and not just when she was willing to. Or when she developed a skin lesion on her sacrum (tailbone) in 2021 that threatened to become a bedsore. Bedsores are really dangerous for people with disabilities because if they advance, they can go deep and become septic and turn into life-threatening infections. We took her to a special Wound Clinic at the University of Maryland to resolve it.
I know I sound like I’m patting myself on the back. But I see in my peer group of Special Needs Moms (and Dads too), kids who are taken to dialysis several times weekly at a long distance; kids going to multiple therapies a week and therapies and clinics around the country; kids who are supported and educated and cared for through multiple hospitalizations and surgeries; kids receiving their parents’ kidneys. We are certainly not unique in the attention and care we gave Sarah. I had many role models for this job. I’m looking at you, Monica, Ann, Nahid, April, Michele, Misato, Kathy, Debbie, Carla and so many others too.
On my block there are (or were) two mothers of grown-up children with disabilities. My next-door neighbor, who died about 18 months ago at age 97 or thereabouts, let her grown daughter move back in with her about 10 or 12 years ago. “Loretta,” the daughter, is on the autism spectrum, although I don’t know if she thinks of herself that way. She has a horrible time with noise or really any sensory stimuli. She called the Police and Fire Department on us when the addition to our house was under construction and she couldn’t deal with the hammering. She also goes around dressed up like a beekeeper every day of the year. There’s a lot more to Loretta, but let’s just say she’s still a good neighbor. Across the street is “Nancy” who has two adult special needs children. There was Mark, who lived at home for many years and had intractable epilepsy. We were used to seeing the Rescue Squad come when he had a particularly bad seizure. Nancy’s older daughter, whose name I don’t know, has been institutionalized since birth for a severe genetic disorder and lives in a group home. That was the norm in that era, and Nancy visits her a lot. Nancy was at Sarah’s funeral and has been a source of support for our whole block.
-
Writing Bug
Sarah loved to write stories (and read them) on a website called Tar Heel Shared Reader that supported AAC access and offered eye gaze interface with her speech device for writing. She wrote about two or three dozen books on there with help from her tutor. She also wrote books on Google Slides with her middle school occupational therapist, Katie Ablard, like the classic Sarah and the Purple Glue Stick that I detailed a few weeks ago. She definitely had the “writing bug,” as my Dad puts it.
Some people who have seizures have a strong desire to write. And there are a lot of famous writers and artists with epilepsy; the condition seems to be kindling for the left temporal lobe’s creative role in the brain, if your seizure focus lies in that part of the brain. Mine does, and also somewhat in the frontal lobe too. (You know that scene in Young Frankenstein where Marty Feldman comes back to the lab with the “Abby Normal” brain?) We never discovered exactly where Sarah’s seizures started up in her brain, but I don’t think we had much motivation to chase that down on top of all her other medical concerns. We were just relieved that they came under control easily with medication, or so we thought.
Sometimes the desire to write can become compulsive and overwhelming for people with temporal lobe epilepsy, in which case it’s called “hypergraphia” and can be part of a larger neurological/behavior syndrome seen in people with epilepsy called Geschwind Syndrome, which I’ll let you look up yourself if you find all this brain babble interesting. A very small percentage of persons with temporal lobe epilepsy have hypergraphia and Geschwind Syndrome and I believe Dostoyevsky is supposed to have been a classic example.
I don’t think I have hypergraphia, but writing can be very compulsive and deeply satisfying for me, both personally and professionally. As you may know, I write in this blog daily, which some people find surprising but seems normal to me. In fact, I often think of other things I want to write about as soon as I’m done writing a post and I jot down little memos in my phone about my internal monologue. I call that Mono-blogging.
When I was a kid, I engaged in writing projects a lot by myself. I started my own fashion magazine when I was eleven: Desire: Fashions For The Well-Dressed. The articles were (in order of literary value): Cool Is The Rule With Halters; Feet Can Be Neat Too, and Denim Is In. I also illustrated it myself with felt-tip pen drawings of, wait for it, halter tops, jeans, and sneakers. The front cover featured some rather intense East German-looking models hulking their way down an invisible runway in gauchos and boots.
Desire was not a threat to Vogue and folded after its premiere issue. Later, when I was 22 and trying to pay my rent, I wrote a romance novel while I was supposed to be doing office temp work called Investment In Love. It was about a woman civil rights activist who falls in love with a corporate bigwig she is trying to persuade to divest of his financial holdings in apartheid South Africa. (I’m really dating myself with that one). Both Harlequin and Silhouette turned it down as “too political” for their readership, although my friends and family enjoyed it a lot. There were no actual sex scenes, just a lot of warm fuzzies and heated smooching at corporate golf events.
Maybe Sarah got the same feeling of satisfaction from expressing herself in writing. She liked to write stories about her friends, tales about her stuffed animals, and the figures from Minecraft. She talked about the presents she wanted, and about Covid. During Covid, she also wrote several stories about her favorite stuffed animals falling ill, and how she and Doc McStuffins and her other stuffed animals would care for them and make them better. I think she worked her fears out this way. I hope so.
-
Person First
I think I’ve officially reached the “Anger” stage of grief. A few months ago I didn’t even seem to know what the whole anger gig during grief was all about, but now — hoo boy — I am spitting nails and taking no prisoners. This business with the Grief Group has really bothered me and gotten under my skin. My friend Susan was horrified by my blog post (“Mindset“) describing our managed exit from the Group, in which I mentioned her rotten experience in a grief group, and we had a great time exchanging texts blasting grief counselors, grief groups, and the whole grief industrial complex. It’s good to be fair and balanced about these things.
I so want my dear readership to view me as mature, circumspect, rational, stable, lucid, level-headed, a good egg in every possible way. But perhaps you realize that you may have an unreliable narrator at this point, that I’m pretty flaky and can be be a bit of a blurter even in the best of circumstances, or if you want to use person-first language, someone who blurts.
I remember when I was studying to take the bar and attending a bar review prep course, the professor who was teaching the Evidence section told us that one of things to look out for during the multiple choice exam was the fact pattern of the person who “blurts.” That if the fact pattern contained a sentence like “Suddenly Paul blurted out the information that Rico had buried the safe in the backyard,” then we should hear a little mental bell ringing to clue us in that there was an exception to the Rules of Evidence that applied. (The Rules of Evidence are basically all about exceptions to the Rules of Evidence. This does not constitute legal advice in any way.)
That would probably be me blurting in the fact pattern. I’ve always been blunt and a “suffer no fools” type and it’s gotten me into some trouble, although I can be diplomatic and I think I’m a naturally kind person at heart. I just sometimes give my opinion too freely and I should be more reticent sometimes. I’ve turned a couple of IEP meetings into shit shows when there was no need to, among other situations that I will not go into here.
So I’m feeling angry right now, and also down on myself for my core personality. In our texts that we exchanged, my friend Susan said that reacting with upset like I did is a perfectly normal part of grief. That was very comforting to hear. It doesn’t mean that I don’t want to try to do better, but it was reassuring to know that I don’t have to be a perfect person right now at the hardest time in my life.
-
Touching Base
I really haven’t had a lot of time lately to feed my TV addiction. Between Dad’s visit and the fact that I’m working on a major piece of writing for work, I’ve barely squeezed in an episode or two of The Americans. In one scene I did watch last night, Gabriel, the “handler” of the two Soviet spies who are the main characters, reaches out to the mother of a woman who was whisked away from DC to the USSR when her status passing information to the Soviets was compromised. One day she just disappeared, or the KGB disappeared her, and her family had no idea what happened to her. Gabriel gets on a pay phone (it’s 1985 or thereabouts) and says to her mother:
“I’m calling about your daughter. She’s fine, she’s doing well, she’s being taken care of by people who respect her very much. She’ll always be taken care of. She wants you to know that she loves you and misses you very much.”
I had quite a cry after this scene. I really wish I would get a call like this about Sarah. Not that I want her to be living in Russia, or that I think she was passing classified information to Putin. But I just want someone to pick up the phone, give me a quick call, and let me know that she’s okay, taken care of, and –alive and well? I guess that’s really ridiculous, isn’t it?
Psychology Today helpfully let me know this morning that 47 to 82 percent of grieving people have spontaneous sensory experiences during bereavement. I’m not sure how they came up with this exact percentage. What they mean is, when you are grieving, you tend to interpret sensory experiences like getting goosebumps, or the lights in your house flickering, or deer appearing on your lawn, as visitations from your dead loved one. Even though you know you are probably acting like a twelve year-old reading a list of “connections” between the Kennedy and Lincoln assassinations.
There’s a drawer in our kitchen that will not stay shut anymore. When I come down in the early mornings to make coffee, it’s almost always sticking out part way. It’s the drawer we keep our Saran Wrap and aluminum foil and baggies in. We’ve tried to fix it several times and we even had a handyman out to see if there was something wedged behind it. But it just pushes itself out. This morning when I came down around 4 a.m., I decided it was a sign from Sarah. She wants me to know she is wrapped around my heart and I am wrapped around hers. Of course, Max is sealed there too. We are all wrapped up together forever, nice and tight.
-
Subscribe
Subscribed
Already have a WordPress.com account? Log in now.
The First Year Without Sarah 