It was the day of Shane’s first vaccine shot. My friend, who also has a 17-year-old, called. We’re both anxiously trying to get the youngest members of our families vaccinated.
“What vaccine is Shane getting?” she asked.
“I don’t care,” I said. “Whatever they’ll give him!” She was waiting for Pfizer which – while my preferred choice – seemed silly to me.
But I had forgotten one vital detail.
She reminded me: “Pfizer is the only FDA-approved drug for their age group.”
Oh, riiiiight.
After half a dozen unanswered phone calls and website inspections galore, I discovered that Shane was, indeed, scheduled to get the Moderna vaccine that day. Legally, he can’t get that shot so, after weeks of waiting, we had to skip his appointment.
So I went back to Square One.
Fortunately, someone provided me with a phone number to make an appointment with another vaccination site.
My friend called. “They could only make an appointment for one day out,” she said. “And the woman I spoke with said they only have Johnson & Johnson today and tomorrow. In fact, it sounded to me like she wasn’t sure they’d ever get Pfizer again!”
She made an appointment anyway.
I decided not to call. I scoured the internet instead for appointments at places like CVS, where they tell you which vaccine you’re getting (if you’re lucky enough to get an appointment).
I wasn’t.
Then another friend texted me: “My friend got her shot today and she got Pfizer!” she said. It was the same vaccination site that maybe wasn’t ever getting Pfizer again.
Huh?
My friend called back. “This time I got someone who said they can’t possibly know in advance what the vaccine will be,” she said. “And she said she didn’t even know what they were using today!”
This seemed unlikely. But if someone had gotten Pfizer today, and someone else had said they had no idea about the brand, maybe I would get some kind of reassuring response. So I called, too.
“Sure!” said the man on the other end of the phone. “We have Pfizer! But we’re not scheduling anyone until next week.”
“And you know it will be Pfizer next week?” I asked. “Because my son is 17 and he can only get Pfizer.”
“Yes,” he said. “It will be Pfizer.” He pronounced it “Sizer,” which concerned me. But I made an appointment for Shane for next week. I have zero faith that it will be Pfizer.
My friend, encouraged that I got a “definitely Pfizer” answer, called again.
“We have no way to tell what brand it is,” this phone respondent told her. “We never know until the day of the appointment.”
“I’m going to the new clinic,” she said. “It’s an hour away, but they have walk-ins!”
My dad was driving right by – an hour away – so I asked him to stop in and see the clinic. He found absurdly long lines and was told that all the “walk-ins” were gone first thing in the morning. The next day, the “walk-in” clinic was in the news because the walk-ins were gone and people had waited seven hours in line for their “appointments.”
The next day, my friend’s 17-year-old son went to the “not guaranteed” site and got Pfizer.
We went to various CVS sites hoping for “leftovers” at the end of the day. No luck.
So Shane will wait until next week for a shot. It is possible – but not probable – that it will be Pfizer.
Our only alternative now is … wait. And hope. Again.
I spent a week on the road with Shane, touring colleges throughout the Midwest. Given that we are both introverts, we – well, he – set a few ground rules before we left. These included “just knowing” when Shane didn’t feel like talking, and Shane handing Mom a snack when she started getting grouchy.
We packed 12 books on CD and a giant box of DVDs, just in case. I made a list of 30 podcasts that we could try, if we wanted to be entertained together. And Shane made a playlist of “Mom Songs” on Spotify that had been mostly pre-approved as not too “screamy.”
We didn’t get through the whole playlist. We didn’t listen to any books on CD. And neither of us wanted to watch a video. At one point, we stopped at Starbucks and watched 10 minutes of Groundhog Day before visiting the city in which it was filmed, but otherwise we didn’t watch any videos at all. I watched one hour of TV at one Air BnB while Shane listened to music. Looking back, we were really together – nearly every moment – for the full eight days. We didn’t talk, and we didn’t not talk. We just traveled together.
We did have moments – maybe a total of three hours during the week – when Shane said, “I’m going to get in the back if that’s okay.” And I’d listen to a library book for 45 minutes or so. I had a little more than four hours of listening left when we started on our journey; when we came home, I still had more than an hour to go before reaching the end of the book.
I crammed in a lot of driving, and stops that I hoped Shane would find interesting. We visited an abandoned amusement park. We saw filming locations of movies he liked: The Avengers, Home Alone, Groundhog Day and Amityville Horror. We stopped at A Christmas Story house and gift shop. We saw the birthplaces and childhood homes of Orson Wells, Walt Disney and Michael Jackson.
We valiantly tried to go to Six Flags Great America, only to be met by a closed gate (in spite of the website’s insistence that it was open). We stopped at John Hughes’ high school, where he’d directed scenes from Ferris Bueller’s Day Off and The Breakfast Club. We walked on the football field there, thrusting our hands in the air like Judd Nelson in his famous scene. We bought shirts from Mars Cheese Castle – and a truck stop in Lodi, Ohio.
Because of COVID, we stayed mostly in Air BnBs: a renovated farm house, a church deftly changed into an overnight palace, a basement turned into a pool hall, and a gorgeous loft by a lake. Shane had asked if we could stay in Air BnBs so that he – as yet unvaccinated – could feel safer than we did in any hotel during COVID.
And most importantly, we saw 18 colleges – 15 of which were actual contenders when we left home. By the time we finished our trip, Shane had narrowed that to three solid options and a whole lot that he called “a hard pass.”
We traveled through Maryland, West Virginia, Pennsylvania, Ohio, Indiana, Illinois and Wisconsin – seven states in eight days. We drove 2,500 miles and walked at least a couple dozen more. Best of all: we left the house, saw the world, and came home safely.
Today, Shane gets his first vaccine. Life feels good again.
One of the items I have not been “allowed” to eat while doing my LEAP plan is corn. Already, I’m not allowed to eat wheat, and corn is often a substitute for wheat in gluten-free items, so I figured I was in trouble.
Then I found out how much trouble.
I already can’t eat gluten – so no bread, pitas, bagels, rolls, hamburger or hot dog buns. No pasta. No cereal. No muffins, cakes, cookies, cupcakes, and any kind of candy with a crunch. Wheat is in most crackers, anything breaded, fried or both. It’s in those little french fried onions on the green beans at Thanksgiving and it’s in those chunks of cookie dough in the ice cream. It’s in croutons, soy sauce, fried rice and – I found out inadvertently last week – wasabi. It’s even in most soups, sauces and gravies. And I can’t eat gluten.
Corn is often used as a substitute for all of those things. But also there’s just regular corn: corn on the cob, creamed corn, frozen corn. I love corn. But also, there is popcorn. I love popcorn. For months, I haven’t been able to eat corn.
But corn is also in everything. Corn is in corn bread, of course. It’s also in taco shells, tortillas, and many kinds of chips. This is enough to make me crazy, but …
Corn starch is in everything. Corn starch is in baking powder, which is in everything baked. Corn starch is in soups and nearly every processed food you can imagine. Corn starch is used on cheese to keep it from clumping. And that’s bad, but …
Corn syrup is the real kick in the head. There is corn syrup in every single thing on the grocery store shelves. Soda, candy, bread (even gluten-free bread), yogurt, salad dressing, hot fudge, applesauce, ketchup, barbecue sauce, crackers, microwavable oatmeal, mayonnaise, steak sauce, lunch meats, canned fruit, peanut butter, protein bars, fruit juice, flavored drinks, canned tomatoes, pasta sauces, cranberry sauce, cottage cheese and pickles.
I can’t even discuss vegetable oil, which is often made of – you guessed it! – corn.
Corn is everywhere. And I have not been able to eat it for months while my body, hopefully, healed a bit.
Then, since I am nearing the end of the LEAP plan, I ate corn again. It was a test, so I ate a lot of corn. I had three tacos and a bag of corn chips from Chipotle. I checked the web to make sure there was no gluten in anything. The shells had a hint of sunflower oil in them, which I may or may not be able to tolerate. But I ate everything anyway.
After 34 hours, I had a tiny reaction. I mean, so tiny that I wasn’t sure it was a reaction. I ate a ton of corn – and my body was able to take it! I think the trick – to all of this – is to eat just a moderate amount of whatever food, instead of subsisting entirely on one item.
Crazy, but that’s how we’re made, I think.
I am going to be careful with corn in the future. I know where it is and I’m not going to live on crap anymore. But the relief that I am able to tolerate some corn is indescribable.
I can breathe a little bit now.
Even though I spent the majority of the last 20 years focusing wholeheartedly on being a parent, sometimes I miss things. Like I missed it when Dylan changed from “trying so hard” to “utterly self-defeated” in middle school. And I missed it when Shane had OCD.
Now, it’s happened again: Shane has Alexithymia.
I had never heard of Alexithymia, so I feel justified that I couldn’t have known about it. At the same time, sometimes I would get so frustrated with him and wonder, how could he not know I’m frustrated? And he would really, really not know I was frustrated.
Alexithymia is an inability to identify emotions – both one’s own emotions, and the emotions of others. Alexithymia explains why Shane doesn’t respond to nonverbal communication cues. It explains why he doesn’t know, when it is painfully obvious to those around him, when a girl has a crush on him. And it explains why Shane didn’t recognize attempts to bully him in middle school.
Alexithymia is not really a disorder; it’s more of a characteristic. He doesn’t put much emphasis on emotions, because he doesn’t “use” them, and his personality reflects that.
No one knows why Alexithymia exists or how it starts, or why. But almost immediately after hearing that Shane had this odd new thing, I had a rapid-fire reaction: How could Shane learn emotions if he couldn’t process what he saw?
Because of his vision processing disorder, which wasn’t identified until he was six, Shane didn’t look at faces. He didn’t look me in the eye at six months old, when he was supposed to be identifying subtle cues about my face. He didn’t look at me when he was a toddler, to see my reaction when he was testing his boundaries. He didn’t look at the teacher in kindergarten, asking questions while he rolled around on the floor.
In fact, Shane didn’t look at anyone for years.
So when I was researching Alexithymia – this strange new term mentioned repeatedly by Shane’s OCD therapist – I looked first to Wikipedia and saw this:
The first language of an infant is nonverbal facial expressions. The parent’s emotional state is important for determining how any child might develop. Neglect or indifference to varying changes in a child’s facial expressions without proper feedback can promote an invalidation of the facial expressions manifested by the child.
And I thought, Wait, that’s backwards! There was no neglect or indifference to his facial expressions. I noticed when his lips curled down just before he cried, and when his eyes flashed with excitement just before he laughed.
But he got zero feedback from me about my emotions – so he had no idea when I felt empathy or joy. And nothing proved that I saw him, that I noticed him, that I knew what he was feeling. He got no feedback because he couldn’t focus on my face long enough to determine the tiny nuances of nonverbal communication. And I didn’t know that I needed to be explaining more, because he was nearly incapable of learning unless it was auditory.
I didn’t know he had a vision processing disorder until well after he should have developed the ability to identify emotions. And there was no way for anyone else to know, either. We were lucky we found out as early as we did.
So now I feel guilty because I spent 15 years researching ADHD and not one minute asking my toddler if he was okay, or making sure I verbally explained “joy” and “angst” and “anticipation.” Did we even sing, If You’re Happy And You Know It? I don’t know. Maybe we should have sung it every day.
Would that even have helped? Somehow, I am sure, I just should have done more.
I got my second vaccination on Saturday and I admit: it was not the picture-perfect spa treatment I got when I went for my first shot. Instead of walking briskly through the stadium alone, I stood for well over an hour in a socially distanced and miles-long line of people. But the experience was quick and quite painless overall.
Eight hours later, the body aches started. I decided to go to bed and “sleep it off,” but there was no sleeping. Instead, I rolled and tossed and turned and audibly moaned literally all night long.
Somewhere in the middle of the night, I awoke feeling severely chilled. I wanted a new blanket but I didn’t want to get out from under the blankets. I wailed a little more, quietly, way too cold to sleep, and finally got up and pulled a blanket out of the closet. It took every ounce of effort I had to put the blanket on the bed, and then I collapsed into the pile.
I was still shivering – but now those shivers had gone from tremors to body-wrenching, below-zero level tremors. It occurred to me to wonder if one could die from the imaginary cold produced by a fever. Suddenly I had a brilliant thought: dogs have higher body temperatures than humans. Loki was sound asleep on his bed next to mine, and I called him frantically to join me. He couldn’t believe I wanted him to wake up in the middle of the night and get into the “good” bed, but eventually he figured out that I was serious.
I grabbed him like he was a furry little float and I was drowning. He cuddled up next to me under the covers and – finally – I could breathe a little. The shivering started to slow and, eventually, I slept.
What felt like minutes later, I woke again and again and again – moaning and regularly waking Loki, who looked at me, confused, then went back to sleep – every time. Several times, I reached for the thermometer and checked my temperature, which registered somewhere between 97 and 99.5 every time. My body thought it was 305.
By morning, I was not a lot better. I sent Loki out so that Bill could feed him, and I went back to bed for a few more hours. When I crawled downstairs sometime before noon, I know I had a fever but I didn’t want to take my temperature anymore. I slept most of the day away and went back to bed early.
Nearly 48 hours after the shot, I awoke from what was almost a full night’s sleep. I felt better. Slowly, carefully, I got on with my life.
My third bout with COVID was by far the worst one yet. I am sincerely glad it’s finally over.
No one who hasn’t done the LEAP program will understand this story, but I have to tell it anyway.
For two weeks, I ate only a handful of things – “non-reactive” things, according to my blood test. These were things I could eat that wouldn’t make my immune system attack itself. So these are important things.
I could eat rice, tapioca (not the pudding), pork, lettuce (not spinach), pinto beans, peanuts, almonds, cheddar cheese, tilapia and grapes. There were some other options, but mostly I subsisted on ham, bacon, cheddar and nuts.
For two weeks, I was never hungry. Not once. I ate three times a day, as instructed, but I never, ever wanted to eat. To be fair, none of it was particularly good, except for the pinto beans and ham that Bill made. (No, he didn’t get to eat any of it.) There was limited seasoning – no sugar or pepper, for example – but I certainly had enough to eat.
After two weeks, I was allowed to add a few more things into my diet. One of these things was salmon. So I thought, Hey, I can eat rice! I can eat salmon! I can eat sushi!
Well, no. Technically, I can’t eat most sushi. I’m not allowed to eat noki (the stuff used for rolls) or sauce or little crunchy crumbles or even wasabi. So I had to call the restaurant directly.
“You can eat seaweed?” asked the chef, the only person who could answer my questions.
“No,” I said. “Just salmon and rice. I figured I could eat sushi?”
“Oh sushi, okay. Well the rice have just a little bit of sugar and salt in it; is that okay with you?”
Hm, I thought. I’m really not supposed to eat sugar until tomorrow. But I felt a wild and rebellious.
“That’s okay!” I said. Takeout was exciting, all by itself, and if the rice had a bit of sugar in it, well then okay.
I placed my order, and waited for the rest of the family’s pizza – then we all sat down for our twice-weekly movie night. I was very excited to be included in getting food from an actual restaurant.
I picked up my chopsticks, picked up some rice and salmon, and took a bite. And I nearly dropped my food on the ground.
The sushi was so sweet, I thought I was eating candy.
Having had no sugar for two weeks – no sugar at all – meant that, for the first time in years, I could actually taste the sugar in the rice. Every bite was like eating a lollipop.
I had eaten rice during my LEAP plan before – alongside fish, made by Bill. That rice was wonderful. But it did not taste like candy.
So I had ten pieces of sushi. I ate them slowly, savoring every bit of that sugar. And when they were gone, I was – as usual – not hungry.
For twenty minutes.
After twenty minutes, for the first time in two weeks, I was suddenly starving. I needed something to eat. My options were immensely limited, but I was getting physically shaky from hunger.
It’s only been 20 minutes! I thought. What the heck?!?
And then I remembered the sugar. Sugar is in almost everything in the American diet. It’s added to milk, bread, canned goods, frozen foods and nearly everything bought in a box. There’s so much sugar in our foods that dessert is not only unnecessary, it’s overkill.
But – I suddenly realized – if I am hungry 20 minutes after eating sugar for dinner, dessert is the next logical thing! My body will always want more.
So I got up, grabbed a Costco-sized bag of peanuts in the shell, and started shucking. I ate so many peanuts, I could have gone without dinner altogether.
Maybe that’s what I should have done.
I am having a mega-fight with my website today. I have tried and tried, but something is glitching for no apparent reason, and I don’t know anything about websites or technology, so I can’t exactly fix it. I’ve contacted my host company and had one person “hang up on me” via online chat, and another waste 45 minutes doing literally nothing. While I am writing this, I’ve received an “updating failed” message. There is obviously a problem but I have no idea what it is. I will be back, hopefully, when it’s figured out. Sorry, and thanks for your patience.
My ex-boyfriend just bought a house. Normally this wouldn’t make the news. Ex-boyfriends are meant to stay in the past. But I must admit, this one has always haunted me.
“Luke” was the one who broke my heart. I was in my mid-twenties, and Luke was almost a decade older. My plan was to marry him, have five kids and two dogs, and live happily ever after on a farm somewhere in North Carolina. His plans were different.
“My stepfather did it right,” he once said, laughing. “He lived his whole life as a free man. Then he turned 60 and married my mother so someone would take care of him in his old age.”
I thought he was kidding.
Luke said that I was the least pretentious person he’d ever met. He seemed to like this about me. But he often gave me “tips” on how to improve my appearance. And he was especially concerned about not allowing the tags to show on the towels in the tiny bathroom in his basement apartment.
Things were expected to be “just so” even if nobody ever saw them.
Shortly after shopping for engagement rings, Luke and I broke up. We weren’t ready for marriage. The break-up sent both of us into a tailspin that went on for months. He’d come over for a hug and then he’d leave. To this day, I don’t understand.
Later, Luke dated my close friend, “Cindy.” He called her “Cynthia.” She was both conceited and pretentious, and she treated me like dirt, so I never spoke to her again.
But Luke still called me regularly, even after they broke up and I moved away. He was a loner, and we talked about loneliness. He “fell in love with the Pacific Northwest” and lived there for awhile. But Luke always ended up back in the gray-cold of Pittsburgh, where people from Pittsburgh often end up.
Meanwhile, I moved on with my life. When Luke was still very much alone, I got engaged. The last time I spoke to him was just after Dylan was born.
“Have lots of kids,” Luke said. “That’s what life’s all about.”
Then he finally realized he wasn’t doing me any favors by calling, and he stopped.
I occasionally googled him to see what he was doing. Once I saw a photo of Luke and his brother-in-law playing golf. My supposed non-pretentious ex-boyfriend was golfing at a country club.
Luke moved out of the basement apartment into a townhouse which, I assumed, was a waypoint. Luke was well past 40 years old by then.
During the pandemic, his mom died. Nine months later, his stepfather died – alone.
The obituaries noted that Luke had gotten married. Luke is now well past 60, and his new wife is 23 years his junior.
Maybe coincidentally, Luke’s wife (partially) has my name. Her middle and maiden name are the same as my middle and maiden name. On Facebook, her similarities to me – the me of 30 years ago – are astounding. Luke basically waited 30 years, and then found me again.
Meanwhile, he lived his whole life alone: “a free man.”
Luke kept his first townhouse for literal decades, and his wife had a separate townhouse even after their marriage. He still uses some of the same decor he used when I dated him in the 1980s. (Thanks, Zillow.)
A couple of months ago, he finally bought a house with his wife, Mini Me. They have no kids, even though Luke told me that kids are what life’s all about. They don’t even have a dog.
I hope he is happy. To me, it just seems sad.
It’s interesting to me to post a blog and receive responses. It reminds me that I need a great deal of practice before I am competent enough to convey an actual message to my audience.
On Friday, I wrote about feeling bad. I wanted to talk about what happened to me that night. My self-esteem was at an all-time low and I knew that I needed to make a change. Friday’s blog was supposed to be a build-up to explain my Prayer of Despair.
The Prayer of Despair, I’ve found, is the most powerful prayer in existence. When I reach a point that I am so downtrodden and filled with angst that I have to pray about it, I have also reached a point of desperation. The desperation is what causes me to actually listen for an answer.
“Hearing” that one word inside my head was a meaningful, profound experience for me. It’s something I will never forget.
Everyone, it said. I need to forgive everyone.
My blog was meant to convey the fact that I – personally and alone – need to forgive. But most people responded to my pain. It turns out that a whole lot of people feel the same way I often do.
I got several responses that said one thing clearly: I understand. That is why I continue to write my blog. There are people who understand.
Then there are people who want to change my pain. They say, quite literally, that I shouldn’t feel how I am feeling. They give me advice on how to stop feeling pain. It’s such a natural thing, to want to relieve someone else’s pain. We all do our best to “help.”
But that night, at 2:30 a.m., I got out my decades-old Choosing to Forgive Workbook. I’d never been previously willing to read it and do the work.
Now I am.
Chapter 1 – surprisingly enough – is telling me that it’s okay to be angry. I have a right to be hurt. People get hurt. Chapter 2 – which I’ve just started – is explaining why those hurt feelings might continue to resurface, even if I forgive those who betrayed me.
So I’ve made a list of everyone who – from infancy till now – angered me to the point of deep resentment. And I’m finding that every single one of them betrayed me in some way.
Even my middle school bully, who did horrible things to me for years, angered me most the day she quietly asked to borrow 15 cents from me. I gave her a dime and a nickel, and she bought some ice cream.
She never paid it back. She said she would pay it back. I trusted her.
I trusted everyone. Sadly, this trend continued well into my adulthood. In my search for acceptance, I trusted a whole lot of people who weren’t able to treat me with kindness or respect.
In looking back, I shouldn’t have trusted many of the people I adored. And I should have trusted some of the people I barely knew.
I have spent many years working on myself, trying to make myself into a better person. I’ve got a lot of work yet to do. But if I don’t learn to forgive, I will never be able to trust anyone.
And my inability to trust is what, ultimately, makes me feel so lonely.
So I’m on a mission. A little bit at a time, I am going to learn how to forgive. Maybe it will do nothing to take away my pain.
But already, at least, I realize that I have a right to feel it.
I awoke one morning and hopped on Facebook to find a memory. I was pleasantly reminded that it’s been seven years since my one-time best friend announced that she never much cared for me, had no interest in being friends with me, and then blocked me on Facebook.
A few hours later, I got a whirlwind of panicked messages from the administrator of the Belmont Parents Facebook page. The Belmont Parents page was my lifeline to Dylan – the only way I could keep in touch with the university without bothering Dylan. I cherished my time with other parents who, like me, wanted to be a part of their child’s college experience.
It’s a long story, but I inadvertently angered the university president. Quite honestly, it was someone else who pissed off the president. But in his fit of rage, the president demanded that the administrator take down the Parents page. Instead, the administrator told me that I am no longer welcome on the page, and removed my name from the group. No more lifeline to my son.
The very next day, for the first time in 40 years, I heard from the girl – now grown-up – who bullied me mercilessly in school. Her name – Mindy – and her 12-year-old face have been forever etched into my memory, unwelcome but scalded into my brain. I found out quite suddenly that Mindy had no idea who I am.
In sixth grade, Mindy told someone to hold my arms behind my back; then she beat me to a pulp. Now, 40 years later, she didn’t know my name. Eventually she figured it out, probably from an old yearbook. “Don’t be so bitter,” she said. “You’re looking well!” I wanted to crush her skull with a tire iron. Tell ME not to be bitter, I thought. (I did not actually respond.)
Simultaneously, I started an exchange with an old friend. Excitedly I announced that I would be in her neighborhood in a few weeks. I tried to find a time to see her after 30 years, just for an hour. There was no enthusiasm in her response; in fact, it was obvious that she didn’t want to see me. I took back my offer without making her feel bad, as is my way.
Day after day, I was feeling more and more alone with the help of “social” media. I started to realize that Facebook wasn’t doing me any favors.
After days of being pummeled, I could hardly speak without crying. I turned to my husband, who is here in real life.
“Nobody likes me,” I sobbed. I blathered on about friends I admired who don’t admire me. Bill’s response – while well-intentioned – actually made it worse. I went to bed feeling more alone than ever.
I could not say my customary night-time prayer. “Thank you for today” wouldn’t come out. I wasn’t feeling thankful. I felt misunderstood, belittled, betrayed, wronged, conflicted, confused, and just … hurt. I felt like people everywhere owed me apologies, but no one was ever going to apologize.
And I know from years of trying to be a better person that when I feel like I deserve an apology, I usually need to forgive someone for something. But I was too alone to even make sense of that.
So my prayer on this night was this: “I don’t even know who I’m supposed to forgive.”
The answer came almost before I finished my sentence. It said:
Everyone.
