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.
After fighting for so long to get my first vaccine shot, I ended up with an appointment at a mass vaccination site. There are three of them in Maryland, all close enough that I could get there in less than an hour.
Actually, about four million people could get there in less than an hour, and that concerned me. When they opened the mass vaccination site at Six Flags, the news and the traffic reports were inundated with angry callers – some waiting for their vaccine for hours and other waiting to get around the jam caused by the miles-long line.
I was going to a brand new site: the Baltimore Ravens Stadium. I had no idea what to expect, but I prepared for the worst. I got up, ate a healthy breakfast, and left for the stadium four full hours before my appointment.
I didn’t want to be late.
But there was no traffic at all. I pulled into Parking Lot B as instructed, right in front of the gate. While the place was teeming with volunteers in yellow reflector vests and/or military garb, I saw no lines anywhere.
Someone asked me, “Do you have an appointment?”
“I do.”
He pointed to a tent with no line. I walked right in, gave my name, and explained that I was three hours early.
“Okay,” said the female soldier. “Just go through that door and someone will show you where to go.” Not only was she not upset with my early arrival, I swear she was smiling under her mask.
Kind eyes, I thought.
I went through the side door of the tent and into the football stadium. It was vast and quiet. There were volunteers positioned at strategic turning points but otherwise I was the only person in the stadium. It was awesome.
When I realized I was heading up to Club Level, I started snapping photos. One of the workers jumped in a photo with me. We were laughing so gleefully, I took the escalator two steps at a time to get to the top faster.
When I arrived at Club Level, I was escorted to a “line” (with no one in it) and given an iPad to “check in” (again). I barely finished answering the three questions before the “line” ended. A woman took my iPad and escorted me to the place where I would receive my vaccine.
The Club Level was a cross between a hospital and a luxury resort lobby. Everything was spread out for social distancing. Strategically placed tables with two people each sat just out of the way of the cast of workers moving deftly between them.
I felt like hugging everyone.
Someone led me to a table. One woman entered my information into a computer while the other prepared my vaccine. We talked and laughed like we’d been friends for decades. As I got the shot, I thought: Finally.
But thinking wasn’t necessary. I was swiftly moved to a chair for my 15-minute observation. During this time, a soldier labeled “GRANT” set up my second vaccine appointment.
More kind eyes.
By this point, I loved everyone I saw. Their kindness was contagious. When I asked a question that only “Sergeant” could answer, he was so soft-spoken and sweet, I assumed he was related to Gandhi.
Eventually they ushered me toward the exit. A volunteer asked if I preferred to take the stairs or an elevator, and I opted for stairs.
Still giddy, I took them two at a time down, too.
I felt like I’d just had a spa day.
My mom called to wake me on Monday morning. “There are vaccines!” she whispered with serious urgency. “I just got a link!”
I was awake in 12 seconds, running down the stairs without my glasses. “Send me the link!” I shrieked. I turned on the computer mouse and ran back upstairs to get the glasses.
The link was for a brand new mass vaccination site.
Frantically, I filled out the form, sharing my eligibility as a K-12 staffer. Over and over and over, I filled out the form, then reloaded the page. I filled out the form another four dozen times. Every time the site said, “Check back a bit later.”
I never even got to enter my name.
Minutes later, a friend called: “I just got an appointment for my brother-in-law!” she said. “I’m going to try to get one for you!”
I gave her my information and tried not to be hopeful. Sure enough, she called back 20 minutes later and said she hadn’t gotten an appointment for me.
“I really tried,” she said. “I didn’t even get to the page with the days and times.”
“I really appreciate you trying,” I said.
“No problem,” she said. “I have to go help my brother-in-law. He’s trying to find an activation code or something.”
We hung up and I hopped onto email. A new, cryptic email said:
Thank you for scheduling your appointment. Please create your MyPortfolio account to view more information about your appointment or to cancel the appointment.
Huh?
It provided a (real, valid) link, so I clicked it. The website said “Please enter your activation code to set up ‘MyPortfolio'” … Hmmmm… That sounded familiar.
I looked back at my confirmation email from January, from the vaccination appointment I missed.
It was the exact same email.
Did I actually have an appointment? How could I find out?
I tried to sign in without an activation code: “forgot your username?” “forgot your password?” I changed everything, submitted new everything. I could not get into my supposed account.
Then I saw a paragraph at the bottom of the page, in fine print.
If you have forgotten all of this information, you will need to contact the number below to obtain access to MyPassport.
I called the number. What did I have to lose? It sure beat spending an entire day waiting in line in the snow at a mass vaccination site, wondering if and when I had an appointment.
“This is not an appointment line,” said the automated system. “We cannot answer any questions about your vaccine appointment. This line is reserved for technical help with the MyPassport system.”
So I stayed on hold. I sat around, played on the computer, made my lunch. I was on hold for 45 minutes. Just as I finished making my salad, someone answered.
“Hello, my name is Blah Blah, what can I do for you today?”
“I got an email asking me to sign in to MyPassport, but it wants an activation code and I don’t have an activation code,” I said.
“I can help you with that,” he said. And he did. He gave me an activation code, and he waited while I typed it into the box. I hit submit.
“That will give you your new activation code,” he said.
“What?!?” I cried. “I just got an activation code!”
He laughed. “You should have another one in your email.”
Sure enough, I did. I signed into MyPassport and read what was in there:
COVID IMMUNIZATION
SATURDAY, FEBRUARY 27, 2021 @ 3:15 p.m.
Somehow, some way, without my really doing anything, I have an appointment to be vaccinated.
I know that I am the only one who cares about my own eating habits.
My kids do not care. I can’t tell you how little my kids care about my eating habits. I think they are happy that I am substantially less irritable now, but they don’t realize that it’s a direct result of changing my eating habits.
Bill does not care. He cares about me, perhaps, and he will even cook whatever I ask. I suppose that is better than 99% of husbands out there. But since he eats whatever he wants, whenever he wants and slurps it down while sitting right next to me – I know that I am 100% on my own in this house.
My parents care that I am healthy, maybe more than anyone in the world. They ask about my health, but they don’t often ask about my food issues. It’s a lot to follow, especially since I’ve been on so many different food plans. Instead, they bring over baked goods and say, “We know you can’t eat these, but we thought Bill would enjoy them.” And then Bill, of course, enjoys them. Shane and Dylan also enjoy them. They all really enjoy them.
I cannot eat them. I cannot eat much of anything.
I have one friend – she knows who she is – who actually cares about what I eat, at least in as much as she thinks about me while she is eating. To be fair, this friend does not live with me, and probably likes me more because she doesn’t have to live with me. I am high maintenance.
But she remembers many of the crazy twists and turns my diet has taken in the past five years, which is incredible. Sometimes she remembers things I don’t even remember. And when she takes a bite of something I can’t eat, she actually wonders aloud if I mind.
I do not mind.
In fact, I don’t mind that my parents bring over treats for Bill and Shane, or that Bill eats a cup full of chocolate sauce at 10:00 at night.
It’s like the years when I worked as a cashier at an amusement park. On the first day, I realized there was a ton of money in my hands. Immediately after noticing the money, I realized that it wasn’t mine and it would never be mine. I didn’t suddenly feel robbed because it wasn’t my money. I just noticed that it was money.
That’s how I feel now about the food I can’t eat. It’s just food.
Now that I am eating based on what it says in my personalized the LEAP plan – exactly what I can and can’t eat – my body isn’t screaming for sugar. It isn’t asking for things I “can’t” have. I am just eating when I am hungry, and moving forward with my life.
But I am doing it alone.
I have just realized, at the age of 56, that I am totally on my own here. My health is my health, and I am the only one who is going to care enough about my own body to feed it properly.
Still, it is nice having that one friend who asks me about it when we’re together. And it is nice knowing that I can write about it whenever I want, and anyone who reads my blog can just scroll through – or skip this one – and I will never even know.
