Over-firing

I saw my neurologist/physiatrist yesterday. She’s a fabulous doctor and a dog lover. So at the end of my visit, I showed her the video of me working with South. She watched most of the video, paying attention to both of us.

She’s really excited and hopeful about the potential service dog placement.

She’s concerned about the recent changes in my movement and issues with my left leg and has recommended physical therapy, which I will do if I can do it before my deductible resets. I did, after all, hit my deductible for the second time this year.

She is okay with me taking up to 20 mg of baclofen 3-4 times a day. But she warned that experimenting with other medications for my mental health may impact my spasticity. Especially stimulants. I told her, anecdotally, the stimulants settle my brain enough that I don’t feel like I’m fighting my body all day. She expressed her doubt with a twist of her lips.

I understand the need for guidelines and best practices and the only value diagnoses often have is to put a label on something to render it necessary so insurance will pay for it. I am low on Vitamin D and have a history of anemia– I take iron fairly regularly so my ferritin is okay. My doctor followed-up with some vitamin B12 tests to make sure I don’t have an issue there– those were deemed medically unnecessary and I had to pay $500. As a small business owner who works several part-time jobs, that’s a significant amount of money to me.

There are so many things about trying to find relief for what bothers a person…And yes that sentence is deliberately ambiguous.

My daughter walked into the same office I am visiting today, at age 17, as one of her first visits to an adult family medicine practice. She asked for an ADHD diagnosis and medication and got a base dose of Adderall with no issue. Now, let me reiterate, that a true diagnoses of ADHD requires manifestation in childhood– and parent recollection counts. In my case, I have no such thing. My mother would probably shrug. My dad is dead. My biological father is also dead, and my mental health therapist thinks the ADHD comes from him. My grades were impeccable. I loved school. I talked a lot. ADHD was not a thing back then. I did not have a traditional doctor or routine medical care from around age 5 to 20.

My daughter, while her upbringing was much different, had an old school pediatrician who had patients my age. So emphasis on old. But he was good, and his office was about 400 steps from our house. That’s what I liked. We only had one car. Eva did, and still does, great in school. I would wager she has more intellect and capacity for greatness than I ever did– yeah, I’m implying that my kid is smarter than me and I think I’m pretty damn smart– but she’s got this streak in her… She calculates the end result she wants and the minimum effort it takes to get there. I am an all-in, competitive personality. She talks so much I don’t think she ever has a thought that doesn’t come out of her mouth. But, unlike my upbringing, which was a typical GenX “go outside and play” and adults did not really interact with children variety, I have encouraged her to speak her mind. I learned early on it was easier to hear her out and reason with her than enact arbitrary rules. She never stops moving, unless she’s asleep. And to get her to sleep as a baby, Darrell had to swaddle her so hard she couldn’t move or else her little limbs would slap herself awake.

But no one ever asked us if we thought she had ADHD.

Looking back, it makes a lot of sense. But when she was 17, no doctor really asked us. The school never said she might have it. Eva was a great student, and, while I was the traditional “teacher’s pet,” she became the kid who looked after the kids who had behavioral issues. The teacher would sit the disruptive kids next to her so she could help keep them in line. I wanted to impress the teacher, she wanted to help. Eva has always excelled at determining what has value to her and what doesn’t matter– the kid deleted all the invitations to high school and college honor societies– whereas I always reach for whatever achievements people tell me should be next.

But yet… we are the same.

I am 51 years and 5 months old. And about one month ago, I took a dose of Adderall that changed my perspective on the world so dramatically I get tears in my eyes right now typing this. THAT is what makes this journey exciting, frustrating and dangerous. If they offered me any drug that could make my brain do the things (or not do) like that… I would take it every day and probably pay a hefty price for it. It’s not about feeling “good,” it’s a chance to live my life without feeling constantly under threat.

And I’m so sick of doctors trying to say I’m depressed. I have close friends who have clinical depression, and a few peers with bipolar depression. I don’t see any of myself in that. I’ve said it before– I love everything about who I am and my life, and I recognize the good I do, what I have achieved, and (as my mental health therapist says) the value it what I have avoided. I have survived and thrived.

But sometimes, my brain tears me apart from inside my own head.

I carefully plot my time and my schedule to do the things I need and want to do. I choose commitments based on my personal values. But no matter how much I try to avoid it, I end up overscheduled, rushed and overwhelmed, and I happily but unwisely maintain an intense work schedule until my brain just stops (despite how much I love everything I do). I work, I work, and then one day I have no energy left and it feels like the soul has been sucked out of my body. No matter what I do my brain will not turn on.

I now believe, that’s BURN-OUT not depression.

And I do this over and over and over again. I have treated it like an emotion, like something inside me is wrong, and it’s just a different kind of tired. I never understood that until now.

At the arcade, when I was playing Mario Kart with the teens, I could play the game without tension, without feeling like my life was on the line, and I got a similar “rush” whether I won or lost. I enjoyed playing. I enjoyed trying. I enjoyed the camaraderie. I had never experienced that before.

There are a few special moments in my life when I experienced intense beauty, or better than usual sex, or a new level of emotion, when the world felt quiet and peaceful and warm, and I never realized until now that those instances of being truly in the moment don’t have to be that periodic. That…

Pause. 7:15 a.m. My alarm would have gone off now if I had slept more… and here I am now, crying. Typing this.

Yesterday, my daughter resumed her Adderall after the pharmacy did not have it in stock. Between her recent ear infection and the pharmacy issue, it had been about three weeks. So she split the pill with me. (Yes, this is a tangent, but bear with me. It’s pertinent, and this is the stuff that I will organize and edit when I write these things for real.) I experience some of those calm, beautiful moments throughout the day yesterday. Laughter with my friend, Nan, as we soaked in sun walking across the Staples parking lot, for example.

I went to work at the restaurant and learned I had a four-hour shift at the work center I like least and that hurts me most. No break. Just four hours of hell. I was very stressed about this before I clocked in. I even got a high heart rate notification from my watch. But I was also oddly resigned. Like we’d see how it goes. The first half an hour I was tense, but also steady. I said to the supervisor– the young one whose very energy increases my natural anxiety– “hey, I haven’t done a full shift in this work centers in six or seven months so I’m a little flustered.” And I communicated with her that I needed more supplies, and that I may need some help keeping ahead of what needed to be done.

Someone else asked if they could give me a hand– and we had had a special event that involved having children coming to get themselves ice cream at my station during the dinner rush– so perhaps that had me on edge, because I knew I had tp be on my best behavior and keep a tidy station… So I let them help, and this is someone who has energy closer to mine, though still he has the same frenetic tendencies the supervisor does, and it was fun. Because of the camaraderie. By the end of the night, I was having a good time by myself, and when I got behind, in the same way that often felt hopeless when I was unmedicated, I was able to listen to my rational brain and let go of the anxious thoughts. And I left my shift with good energy and minimal pain.

The emotional regulation piece of this is transformative.

I have always thought my brain was a hugely unreliable narrator. That I couldn’t trust it. I didn’t know when it was worthy of my trust. I now realize I have a highly logical and organized brain, but when it’s overfiring, and that’s the best way I can describe it, the thoughts fly faster than my poor little cells can file. Yes, I’m imagining neurons with little filing cabinets, and happy brain chemicals tossing balls of happy and calm around, and my poor little office workers being clumsy athletes.

This is where I would insert a shrug emoji if I were texting someone…

TO BE CONTINUED….

The Day Has Come

In the early days of exploring how to stop the fire raging in my brain, I mentioned that I firmly expected to be prescribed an SSRI.

The day has come.

I handed it my complex spreadsheet to my shrink-by-proxy, and the surprise on her face said a lot. The doctor had already made his recommendation based on the assesments from last week– so I’m not sure I understand the point of collecting all that data.

He gave me a choice of taking 50 mg of Zoloft for 2 weeks, followed by increasing the dose to 100 mg for two more weeks or doing six weeks at 50 mg.

They are concerned about my scores on the screenings for anxiety and depression.

If we could have ended the appointment there, I would have remained agreeable, even though several of the potential side effects of this drug could make other symptoms worse. Apparently, one common side effect is drowsiness and fatigue, something I currently struggle with due to my history of anemia. And dizziness, great for someone with a history of orthostatic hypotension. It may cause shaking and tremors, and my hands already shake. And it could cause problems with my sleep and sex drive. And I’m a monster if I don’t get my sleep.

But I’m willing to do their experiment…

But I got angry in the appointment and had to hold back my reaction. My practitioner went into therapist mode, and suggested I should be in regular therapy at least once a month. I know and understand my issues, I told her, but I struggle to get past the reaction I have to my triggers. And I told her about how I woke up in a wonderful mood but it quickly disappeared when I saw I got my paycheck. It was exactly what I expected but it still made me anxious and I had to look at all my finances. Yet, I helped my daughter buy a new vacuum without a second thought (because she agreed to pay me back by buying groceries– which I tend to not do because everything is so expensive).

She suggested I make a strict budget and adhere to it because it would make me feel better.

If any of you know me, you know how ridiculous that it. I have lived under a strict budget that goes six weeks out for the last 25 years.

And now I’m angry for the first time in weeks, not frustrated or overwhelmed, but angry.

I don’t know what happens next, but I am feeling a tad misunderstood, which is common in our medical system and I will have to have more patience and wait it out and prove my point with data, not emotions.

No one is even considering that on the four times I took Adderall, all of those symptoms went away, and I slept better than ever.

They won’t consider that until they rule out anxiety disorder and major depressive disorder.

The Dave & Buster’s revelation

My Sudafed is wearing off. These last two weeks of severe allergies have been exhausting and maddening as I drown in phlegm. I took my Zytrec, my Flonase and Sudafed this morning.

I learned at 9:15 a.m. that in order to make my 11 a.m. social commitment at Dave & Buster’s, I would need to accompany Eva to two clients and sit in the car from 9:45 to 10:45.

One thing about me: I can be really flexible, but once plans are made, I don’t handle change well. I am slow to recalibrate my thinking in the face of change. I had already threatened to back out of the social engagement, but now it was too late, and I would be a jerk if I had said I was going to be there and then not show. There were a limited amount of tickets, and someone else could have gone if I decided not to.

I love Dave & Buster’s, but I don’t do well in social environments. So the promise of some of my favorite arcade games– including a version of Hungry Hungry Hippos where you sit on the hippos and have to shovel the balls in their mouths– forced me to go. And more often than not, I force myself to social engagements despite social anxiety because I want people to know that I would like to support them or spend time with them.

And sometimes it can be fun.

At this point, Eva looks at me, and somehow we get to the idea that I could use a dose of Adderall. “You’d be doing me a favor,” she said. “I haven’t taken mine in more than a week, and I shouldn’t take a whole one for my first dose.”

So we split it.

By the time we got to the arcade (and I got to pet some dogs on the way), I was calm and not antsy about things. Eva came along to play some games with me, and I noticed they had removed my Hungry Hungry Hippos. I played some games, had some food, and even asked one of the teenagers to play Mario Kart.

Now, here’s the interesting part:

I struggle playing video games. My heart races and I get really anxious as if the games had real stakes. I’m really uptight about it. And Eva doesn’t like to play with me, because I’m too competitive and I get grumpy when I don’t.

Today, I played Mario Kart and enjoyed it, without stress, carrying no physical angst of the competition. I didn’t care if I lost, and even more shocking, I felt nothing when I won.

I felt no different whether I won or lost, either way it was just good fun.

It’s almost 5 p.m. now and my blood pressure is 110/69.

Not looking for a mental health diagnosis, I’m seeking understanding and relief.

In many common injuries, and with certain illnesses and diseases, clear trajectories and treatments exist/are followed. I think in reality, nothing is ever that simple due to all the quirks that make us all the people we are.

Last year, I asked every practitioner on my care team how they felt about Valium.

Even on my beta blockers and other blood pressure medication, my heart would have these periods of elevated heart rate, even as my blood pressure was under control. And when physical circumstances coincided with these events, such as muscle pain and discomfort from too many hours at the restaurant, I would find myself taking triple my normal recommended dose of baclofen. And it didn’t relieve any of it.

So, I wondered if a low dose of valium could be a breakthrough med to relax my muscles and my heart rate. But no one on my team was comfortable with an experiment like that. I got on a list to speak to a psychiatrist. A year later I am still on that list.

A recent experiment with a dose of Adderall showed that I may respond to stimulants and/or that I have a touch of ADHD. I set up appointments with my therapist and my doctor to discuss. I got a referral to a new in-office case manager who can work with patients and report to the psychiatrist so family medicine can prescribe medication.

Earlier this week, the case manager who works for my primary care p behavioral health matters called me. She said she would talk to the psychiatrist whom she works with on my behalf, but already in that initial conversation, some of my complexities popped up.

She called me back Wednesday morning and asked if I could come in that same day or Thursday as she had time scheduled with the psychiatrist Friday. The psychiatrist recommended some screenings to give us some more information and a letter from my current therapist — whom I have been with for the last 15 years.

That in itself is hard to believe.

So God Bless him, he wrote me a letter and emailed it to me. With minimal notice.

I walked into my primary care physician’s office and, because this case manager is a new addition to the staff, they have her tucked in this odd, closet-like room in the back corner of the practice. Which had no windows. And she lit with a tiny desk lamp. Which might make some people feel cozy, but I kept thinking, “We are in a closet. In the dark.”

I screened higher than I would on the depression screening. (Which today I would do significantly better on because my good mood and hope is back– so of course that led to a mood disorder screening, which suggested I might exhibit some bipolar symptoms.) I scored “high” on the anxiety screening. And I do show symptoms of ADHD but not enough for formal diagnosis and no clear childhood presentation.

Remember– I didn’t receive medical treatment between ages 5 and 21. Except for physicals and immunizations required by law for public school and those were administered by a semi-retired doctor around the corner who only accepted cash. And this was in the 1980s: things were different.

“Did your teachers or counselors notice anything?”

Ummm… schools for GenX did not have counselors. Remember all those memes that circulate around January 28: They put a teacher on the space shuttle, shot her toward the moon, and every school age child in America watched her blow up LIVE on television. Then, they shuffled us back to our classrooms (because at my school we watched it as a group in the multi-purpose room like an assembly) and pretended it didn’t happen. I was in fifth-grade. I was almost 11-years-old.

I think every GenX (and Boomer child) understood that we were expected to sit still, do our work, get good grades, and if we didn’t the school and/or our parents would punish us– and the school could even hit us if necessary. My parents never hit me, but my mother was/is the queen of silent disappointment and perpetually pointing out individual flaws. My mother dropped out of high school, but she never hesitated to make her first statement about my report card to be about the lowest grade.

“Why did you get a B+?”

A B+.

Couple that with the childhood trauma I lived with at home– slight food insecurity, sporadic but frequent domestic violence events or risky behavior from my parents, alcohol abuse, etc.– school was my safe place. My teachers nurtured me, educated me, (sometimes even fed me and protected me) and listened to me. I would have done anything to make sure my teachers would not be disappointed in me.

So I was the perfect student. But I talked. And I often spoke inappropriately. And despite my good grades, I struggled with studying. Repetition and lots of notes are still the only way I can learn new things.

And the organization issue? Developing systems not to forget or overlook things? I had a very unpredictable household. I had to keep myself together. And my mother loves everything clean and in its place– if I left something out of place in the common areas of the house, my mother would pile it on the stairs for me to take to my room. And if I didn’t take it up, she would nag me. And if I still didn’t take it up, she would. And when she did it, she would often clean and reorganize my room while I was in school.

And if we’re looking at my borderline results for ADHD and comparing them to other brain issues, we have to consider how symptoms of depression and anxiety overlap with ADHD. And how especially adult women get treated for a mental health condition when the issue stems from neurodivergence. So am I manic– or am I hyperactive/hyperfocused? Am I depressed– or am I in a burn-out phase? (And I would add how do these correspond with hormonal cycles. When I was traditionally ‘fertile,’ I had great mood and energy, when I am approaching menstruation, I crash.)

And fatigue is also a symptom of everything. I have a history of anemia, which causes fatigue. I have a chaotic sleep schedule, which interrupts my routines and causes fatigue. I eat primarily vegetarian vegan and my B12 is on the low side of normal, is that causing fatigue? I perpetually overschedule myself. This causes fatigue. I think if depression were causing my fatigue, I would be more prone to not get out of bed. I always drag myself out of bed on time.

So, in the end, it sounds like this case manager wants a mental health history of my biological father to be the determining factor on the ADHD issue. Problem is he’s been dead for like twenty years. His ex-wife whom I knew for all of the time I knew him, also dead. My biological half-brother, I’ve never spoken with them. The few people who friended me on Facebook who share his last name and said we are family– I’m not even sure who they are.

And then there’s the issue of trauma.

I have experienced a lot of different types of trauma from the unstable environment of my childhood, a period sexual abuse by my grandfather that could have escalated had I not made the decision to avoid him, and multiple experiences in hostile work environments. (One boss who randomly fired me after recuiting me for the job to hire a friend, One boss who threw things at me. Another who made me constantly fix her personal failings. And the final one: she was an all-out tyrant.)

I even mentioned to the case manager that I had spoken with my therapist on one point about why I ended up in so many of this situations: Was it me? And the case manager rephrased some stuff I have probably heard before, but didn’t really make sense until now: You will be more prone to ignore or not notice red flags. And that made total sense. That‘s how people end up repeating cycles. You can’t recognize the subtle signs and once you are knee-deep, you rationalize, as in “the devil you know.” Or, in the case of some family cycles, the child of a drug addict might think some overconsumption of alcohol and behavior related to that is okay, because it’s “just beer.”

Note that none of this addressed the fact that I also live with a mobility disability. And my medical issues– which I am considered prediabetic now and had gestational diabetes. I have always had a strong reaction to sugar and less reaction to caffeine and alcohol. And I also react to certain chemical flavors. (I would love to find out if I react to Red 40.)

As a woman with a mobility disability, I will be extremely hesitant about any SSRI that list side effects as weight gain– I have worked really hard to lose 12 pounds and need to lose at least 20 more. This is not due to vanity. This is due to risk of Type II diabetes AND the fact that more weight will put more stress on my body that already struggles to move.

Anyway, the case manager is meeting with the psychiatrist today to discuss my case notes. If I had to guess what they will suggest, I would say they will probably try to treat my anxiety with an SSRI and refer me to a trauma therapist to explore PTSD. And I suspect they may hint at depression, or even bipolar, expecting to treat it with whatever SSRI they pick.

But I think the constant interplay of some behaviors being driven by rumination or compulsion (“I must do the dishes if the bin is full”) and my avoidance of minor, personal tasks (I struggle to put my laundry away, every time, and I’ve never developed a system) and so many other things like:

  • focusing on projects I like to the extent that I won’t stop until I’m done
  • struggling to start projects I don’t like and giving in to every distraction
  • doing several things at a time and sometimes leaving some half-finished (moving into my office)
  • lacking proper mood regulation
  • obsessing over procedure, routine, documentation and details on items I deem important
  • missing details or skipping steps on things I cannot get emotionally invested in
  • writing down tasks in 5-6 different formats while doing them as to not forget and to not worry about forgetting
  • sharing and writing down important or “pretty” numbers
  • food issues: aversion to textures, difficulty motivating myself to eat or eating too much
  • inability to recalibrate when faced with unexpected change
  • must redo entire household financial plan 30 to 60 days out every time a purchase more than $100 is made or if receiving income in that range
  • pausing in the middle of simple tasks to complete a more appealing task (I picked up my phone today while putting on flip flops and left my foot half-inserted into the shoe. A flip flop!)
  • monitoring medical information more than necessary (Blood pressure: sometimes once a week, sometimes three-times a day; Weight: at least twice a day.)
  • unable to ask for help and will instead take on large projects and complete them alone
  • feeling worthless when I do not meet my goals, no matter how big or small
  • high level of rejection sensitivity
  • always making decisions based on my “gut.”

These make life/diagnosis complicated.

I have spent about two hours on this post. It is 12:30 p.m. I have not eaten yet today. I need to pee. Because of the SEVEN medical appointments I had in the last two weeks, I am behind on some projects due Oct. 10.

And tomorrow I have a business road trip.

And Sunday, I am meeting new friends for tea.

So I need to get shit done…

Am I Alice? The White Rabbit? Or the Mad Hatter? Or the Queen of Hearts?

Who doesn’t love a good mystery?

Anyone who deals with serious medical issues has experienced a sense of Wonderland. Is your regular life Wonderland? Or is the medical system Wonderland? Who is Alice? Who is the White Rabbit leading Alice down the rabbit hole?

We all have a lifetime of experiences. Some good, some bad. Some of us got “good” bodies, some of us have bodies we hate. Some of us have learned to accept our bodies. Some of us work really hard to change our bodies.

Some of us want to understand. Some of us want only to survive.

All of those things are okay.

We all have Alice in Wonderland moments.

It’s been a couple of weeks since my daughter, who has ADHD, floated the idea that she inherited the ADHD from me. It’s been one week, almost to the minute, since I took 10 mg of extended-release Adderall to test her theory, at least to give us data on if the drug brought me up or down. And the answer was down, pointing toward something not neurotypical.

And as you will see later in this entry, one of the stumbling blocks to determining what exactly my brain needs– whether that is treatment for ADHD, anxiety, depression or nothing– is, as my daughter would put it, I mask so hard even I don’t see the problems.

I have always been extremely organized, and I forgot nothing. And yesterday, at my second doctor appointment of the day, the clinician got out the standard short ADHD screening and asked the questions related to inattention. I don’t have a problem there. But I am realizing more and more, I write everything down multiple times. I write in my journal, on my paper calendar, on post-it notes, on my electronic calendar, in this blog. I write down when I take my medicine. My blood pressure.

And this morning– I went to blow my nose. Allergies are hitting in full force and Eva has an ear infection. In the middle of blowing my nose, I put the tissue down so I could take a Zyrtec before I forgot. I do not remember if I took the Zyrtec. I did not log it in my phone. The cap is off my water bottle, but did I take the pill?

Could my “obsessive” habits, like checking my bank balance several times a day, be not a form of soothing my own anxiety but something I do to prevent myself from missing something?

And even right now, as I write this, Eva has interrupted me and the entire train of thought for what I was writing completely disappeared. I had to reread the whole paragraph and reconstruct what I was trying to say. Is that normal? I’m honestly asking. So before I get too much more ahead of myself, let’s talk about yesterday.

Yesterday, I met with my longtime mental health therapist. I wrote a quick entry yesterday about that visit, posted it, somehow managed with a same day appointment with the practice who handles my everyday care, realized that the post was worse than I thought it was, and so I took it down with the intent to do a better job with new information.

And here we are.

Some observations from that appointment with the therapist who started treating me for anxiety more than 15 years ago. (That seems crazy. It can’t be that long. It just can’t.)

  • My individual complexity may prevent a simple diagnosis/solution. My history of childhood trauma and neglect, my family history of addiction, substance abuse and domestic violence. My physical disability (to which he adds “never discussed nor treated). So my brain could be doing anything for any reason. I believe this is why I’ve developed many of the habits I have that are masking how I feel on the inside. Whether we attribute this to ADHD or anxiety, that is part of the mystery.
  • Even looking back, with my history of doing and achieving all the things and doing them pretty well, it would be difficult for a clinician to trace this back to my childhood. Childhood presentation is one of the required elements for an ADHD diagnosis. (But, again, I was dealing with a lot of things, things I didn’t understand… from my body and my environment.)
  • My therapist theorized that if I have ADHD, I may have inherited it from my biological father. And that was a lightbulb moment for me. The first time I met him, I was

(I picked up my phone while typing this. I have no idea why. Got lost scrolling Instagram. Put the phone down. Realized I was in the middle of the sentence. And don’t remember what I was saying. So I distracted myself?)

  • … impressed by the breadth of his creativity and the projects he undertook. But I also remember that he had decided to remodel the bathroom and had never finished the one wall. It was still primarily the framing. Functional. But no real wall on the inside of the room. And when he and my mother split up, he went with his dog and lived in a cave in the woods until it got cold. Then it built a shelter. And when he and his wife split up, he left in his pickup truck, with his dog and a duffel bag and moved to the midwest. Where he got a job at Russell Stover chocolates.
  • My therapist can provide a letter of support to my primary care provider, and he reminded me that it didn’t matter the diagnosis if we could find a treatment that could bring relief. (And my therapist and doctor know each other so that helps.)

Now, I know “euphoria” is one reason people who don’t have ADHD take Adderall. And I’ve taken other types of medication: Lexapro for work stress and then depression (which helped in that “take the edge off” kind of way); beta blockers to control my heart rate (which failed); and Ativan for panic attacks (great, as long as I just wanted to come down and not do anything for the rest of the day). When I took Adderall, it wasn’t euphoria– it was the sensation of being able to let go of the adrenaline, the sense of doom and the constant muscle tension and being able to effectively regulate my emotions because normally my emotions also stress me out because I can’t do anything to work through them. I could on Adderall. If anything, that is what I want. I want that.

I asked my therapist: What would you recommend as my next steps? Since I have not been able to get past the waitlist for a psychiatrist, should I make an appointment with my family doctor?

I went home and called the office.

(Right now I am sitting here, forcing myself to finish this because it’s important. I need to pee. I’m very hungry. It’s 9:22 a.m. and my daughter and I are leaving for Susaquehanna Service Dogs which is sooooo exciting and stressful and… but if I don’t do this now I will not do as good of a job if I do it later and I don’t want to forget a single detail because the details can mean the difference between finding answers and getting the run-around from the medical establishment. This is how my brain works.)

I was offered an appointment with my regular provider October 13 or I could see another doctor in a couple hours. I took the appointment in a couple hours. I knew nothing would get resolved quickly, but wanted to position myself “in the system” to get the process working. That’s the hardest part of the medical system. Positioning yourself to get access to physicians and presenting the case with evidence, not anecdotal experiences.

That was why I started with my therapist. While he’s the most expensive provider on my list of medical professionals, he was the most qualified to give an opinion. Offering his opinion, based on our experience of 15 years, will hopefully show this is a legitimate possibility and not just a drug-seeking behavior. I specifically work with this therapist because he is a Ph.D. psychologist– I wanted someone who could help me grow as a person, not just medicate my brain. I have done a lot of worth in those 15 years, but recent years have shown me how much I fight myself and that I could have a chance at actually slowing down and enjoying more of my life, not just frantically surviving it and celebrating sporadic moments. Because in my brain, nothing is ever safe, or enough, or helps me overcome the doubt and doom.

(Okay, I need to get up and pee now. I’ve had 10 ounces of coffee and like 24 ounces of water… Be right back.)

(Hi, me again, I stopped to look in my protein bar basket. I should eat something. My belly hurts I’m so hungry. I have these blueberry breakfast biscuits that taste nice but don’t have any real protein. I also have a cookie dough protein energy bar from Aldi that is high in protein but full of chemicals, sugar and preservatives… I can’t decide. I have them both on my desk. I really want a piece of toast, but then I need to find and decide on bread, wait for it to toast. I should make an egg sandwich, but that is a whole undertaking of cooking. I guess I’ll open the breakfast biscuits… The taste bad. They usually don’t taste bad. And they smell weird. Are they spoiled. “Best if used by August 2025.” Did I mention I tend not to eat food I like because I might want it more another day? And then I panic that it’s not the best day to eat it? And now I’m sad that I let them spoil. Like really said. But honestly– they were Dollar Tree biscuits. So now I feel bad that I feel bad. I don’t need to beat myself up that much.

Now, do I eat the protein bar? Because I do not want to eat now. I threw out the biscuits. But I put them in my office garbage can. And the dog often gets in that can. Maybe I should empty it. Yes, let me do that quick. BRB. Again.)

So the doctor. She’s a great doctor. I mention that my daughter, and I both use the practice and my daughter does have ADHD. I tell her that I know we won’t have answers today, and I don’t expect that but I would like to start investigating this. She listens attentively and we explore the classic short ADHD. I have the anxiety-laden portion of hyperactivity impulsivity but not much else– and I ask her– I probably do fidget, but I have a spastic muscle disorder that means my legs cannot move. So how do we know? And I have similar I don’t know answers to some of the other questions. The test is inconclusive. She mentions other SSRIs. And that Wellbrutin has shown to improve symptoms of ADHD that coexist with symptoms of depression but it makes anxiety worse. And then she adds, “so that would be a bad idea for you.” And she wonders if I should try other SSRIs.

Her plan becomes three-fold:

  1. Get the letter from my therapist.
  2. Book an appointment with my regular doctor ASAP because he’s a busy guy. (Did not expect that.)
  3. She gave me a referral for a behavioral health case manager. This professional should be reaching out to me to prepare my case for review by a psychiatrist. It sounds like she does the evaluation, makes notes and gives them to the doctor so I can get medication through primary care… or through that psychiatrist. It’s a program designed for people like me who don’t have dangerous behaviors or immediate needs. And reduces the waitlist problem. That people never get off the list.

(I don’t want to write this anymore. I am forcing myself to do it. Just so you know.)

I leave the office. Hear from Eva that she got antibiotics for her ear infection. I email my therapist but then decide a phone call is more expedient and professional, so I call. He leaves me a voicemail a little later that we will get the letter together. And then the funny part– my actual primary care doctor comes to the restaurant, drives up to me in the drive-through, and chuckles when I ask what name to put on his order. He knows nothing of what I have gone through this week, or maybe he does, but I don’t think the other doctor finished her notes yet.

And that’s where all that stands.

Now if you’ll excuse me, it’s cold this morning and I am debating making a can of Spaghetti-O’s for breakfast.

On writing, living and working (with a disability)

I pride myself on being able to write just about anything at any time with no fear of writers block.

But lately, I haven’t been keeping this blog up-to-date. I think it’s because I’m doing so much that I don’t have enough stillness to think, reflect and write. I still have the thoughts, but I don’t have the time to germinate themes and record them and so I lose the moment.

Last night, I was a guest speaker at the Behind Our Eyes writing group for writers with disabilities. Nan has been a part of that group probably for most of its 19+ year existence, but I am a relative newcomer. I joined because I read Nan’s email and work so closely with her as a writer that I already knew most of the members in the creepy troll way.

Nan pointed out to the group that I was a gifted cook and bargain hunter, and that she hopes I commit more time to my disability memoir because I have some insights that the world needs to hear. And maybe they are things I also need to remember.

I overdid it last week. The last few weeks have been insane. I haven’t been eating right, or sleeping well, or giving myself any breathing room. I saw my cardiologist last week, and I mentioned to her that I don’t know if my blood pressure medications are the most efficient way to stabilize my heart rate.

The backstory

So, in March 2023, I had two bad falls down stairs in close proximity– 2 weeks apart. Neither were traditional mechanical falls of the type I am used to, those from lack of proper muscle control due to cerebral palsy. The first occurred as I was hurriedly leaving work to go to the chiropractor. I dove down the cement stairs and ended up severely spraining my pinky. Most dumb injury ever, and my pinky is still bent.

I didn’t know it at the time, but my eating habits had flooded my system with salt when I misbehaved, and then when I suddenly returned to my normal diet and drank the massive amounts of water I had always consumed, well, I washed all the sodium from my body, causing low blood pressure and dizziness (orthostatic hypotension).

With cerebral palsy impacting my gait, and allergies/congestion also challenging my balance, a sudden drop in blood pressure may have caused the fall. (I suggest this because I did almost pass out in the moments after the incident.)

Almost two weeks later, I was carrying a cup of tea upstairs when I had a nothing fall triggered by my head and not my legs. My daughter watched it happen. I plummeted out and down and into an air conditioner that was on the floor. I split open my chin directly under my lip. I definitely needed stitches so we headed to the emergency room.

I told the doctor that I knew mechanical falls and these weren’t from my legs, and he gave me some options:

  1. He could stitch me up and send me home in a matter of minutes.
  2. He could order every test and I’d be there all night.

I asked if there was an option in the middle, and he suggested starting with some bloodwork. But they also noticed my blood pressure hadn’t come down so they put me on a heart monitor and very quickly noticed that I was in Afib with OVR.

So it looked like I would be there all night anyway.

They eventually labeled the whole incident as idiopathic and put me on a low-dose beta blocker to make sure I stayed in rhythm. I invested in an AppleWatch to try and get information about what my heart was doing.

Fast forward to present-day

I have had no incidents of Afib since that initial one. But each fall, my blood pressure has risen in the autumn. Is it allergies causing stress on my body? Is it the stress of the end of the year and all the obligations of adulthood like taxes and paying for fuel oil? Is it just the looming presence of Christmas? Or is it the change in the seasons and the shorter days? Or a figment of my imagination?

In the autumn, I struggle more with anxiety. My primary care physician has talked with me several times about the impact of stress and anxiety on heart health. I have been in and out of psychotherapy for 15 years showing symptoms of depression and generalized anxiety disorder.

So I asked my primary care doctor, my cardiologist, and my psychologist if I might need an anti-anxiety med instead of the combination of other meds for high blood pressure. Because typically my diastolic pressure is typically good, and high in response to stress, but it’s not uncommon for my systolic pressure to stay high even when my heart is at rest, sometimes elevated for days even with a now higher dose of the beta blocker.

I take a muscle relaxer for spasticity several times a day and some anti-anxiety meds can also treat this, allowing me to reduce the amount of medications I am taking. A standard low-dose beta blocker and muscle relaxer for maintenance and on days that I am anxious, an anti-anxiety med instead. So now I’m on the hunt for a psychiatrist to get an evaluation.

Which brings me back to last week

Last week was brutal. I was booked every day from 8 a.m. to at least 10 p.m. And Saturday I attended Collingswood Book Festival as an author with Pennwriters Area 6. I met with clients everyday, taught my college class, went to WDIY to talk about advertising my business (and hopefully make some new friends)…

And I still worked part-time. I don’t talk much about the job I have in a local fast-food restaurant, a job I took last January because after a year of relying on Parisian Phoenix Publishing for my income, the realities of first quarter in the business world were making me nervous. And since royalties pay out three months after sales, I know how much money is coming and when.

And 90% of the time, the evening fast food job suits me perfectly and feeds me. The general manager was an English teacher until this year and understands my business and my frequent time off requests.

But last week I had two long shifts back to back where I was assigned jobs that were physically challenging for me. And I haven’t been in that much pain and discomfort in a long time.

And so even though I still have more work than time, and business can be as stressful as it is rewarding, I will try to go easier on myself. I only have two fast food shifts this week, and they are both on the longer side… but my days aren’t packed nearly as tight.

A Monday mammogram, a dose of anxiety, some more commentary on cerebral palsy (and fitness) and a really yummy dinner

I had a mammogram scheduled for this morning with my “regular” radiology tech. I went into work late, which meant I could sleep in and isn’t that the best way to start a Monday morning? At five a.m. I woke and starting cuddling my foster cat, Tripod Louise, debating whether or not I should get up. I normally rise for work at 4 a.m. so I have time to do Parisian Phoenix stuff or creative writing before clocking into my shift at 6:30 a.m.

But as I lay there at 5 a.m. today, I realized that I had set up the delay feature on my amazing coffee pot, and yes I still adore my Ninja K-cup, travel mug, and standard carafe brewer. I had coffee waiting in the kitchen. If I waited much longer it might not be fresh. If I fell back to sleep, it might not even be hot.

I fed the fat cats their weight management food and went downstairs where I promoted my latest idea, the photo scavenger hunt book. Check Parisian Phoenix’s submission page for more info.

I arrived at the hospital for my mammogram at 8:05 a.m. I went into the lobby and grabbed my registration number. Luckily it was two away from the last number I heard called. I started rooting through my purse for the doctor’s order and found it crumpled and stained with coffee.

A Dose of Anxiety

While I don’t normally suffer from panic or anxiety, when my stress levels increase I am prone to physical sensations of anxiety. And I had forgotten how stressful I find doing any outpatient procedure at the hospital. Grab a number, sit in the main lobby, go to the registration office, go across the hall to radiology, check in at radiology, get called to mammography, traverse the hall, get changed, go into the mammography suite, chat with the tech, get smooshed.

It’s a lot of steps in rapid succession. I could feel my hard pounding and had to keep inhaling deeply through my nose to keep my chest from closing up.

Was I nervous? No. Afraid? No. Shy? No.

It was pressure. I felt rushed and out of control.

Building Up Another Woman

Once in the mammography suite, I learned my favorite tech would be retiring in eight days and staying on per diem because if she works one day a month she will maintain her medical insurance.

I told her I was happy for her, but also disappointed, because she did my first mammogram and she always made me feel comfortable. I told her I’m sure she helped a lot of women and that I hoped she enjoyed every minute of her retirement.

She called me sweet.

And she remembered me by my tattoo. Which is on my breast.

Foster Kitten Jennifer Grey and Bean the Dog

When I left the hospital, I got the sweetest text that our foster kitten Jennifer Grey (who moved to the Teenager’s room last night for better socialization) is adjusting well.


Forgive me, but I’m finding myself too exhausted to continue,

so from this line down, I am writing about Monday on Tuesday


4:30 a.m. Tuesday, drinking exceedingly strong coffee as prepped on the delay setting by the Teenager.

Measuring Challenge at Work

My anxiety from my hospital visit followed me to work. I clocked it 9:07, which made it hard to do the math of where my numbers should be for the day, but I settled on a total of 85 fixes. And I hit 85 fixes. I was at a table on the right, not my regular table on the left, which meant a subtle shift of balance and more pressure on my right hip. The warehouse outbound supervisor herself brought me 22 refixes, or the work already in a box, which were pivotal in keeping my numbers where I wanted them.

I heard rumblings among my colleagues that no one is hitting “full performance,” so I’m not the only one. We were joking at lunch that in a few months they may reduce their workforce by 50% if they dismiss everyone not meeting the new numbers. I don’t think they’ll do that. The company has always been more than fair in the past. At lunch, Southern Candy gave me homemade fudge. I ate too much of the deliciousness and spent the next couple hours a little queasy.

The murmurings report that employees that are shared to other departments must still hit 90% of the new numbers and that their performance in those other departments will count toward their monthly miss-the-mark allowance.

The goal for my department is 16.25 per hour, but does not include time off for our ten-minute paid breaks. So I use my own numbers. Hour one should be 17, hour two also 17, then ten minute break, and 15 to finish the third hour to reach the official numbers. It’s two more hours until my lunch, and I try to maintain 17 per hour to “make up” for our final ten-minute break of the day.

So I missed two hours and 37 minutes of work yesterday. If I divide one hour (60 minutes) by 16.25, I get 3.7 minutes per box. (For argument’s sake, let me point out that doing the same using 17 unites is 3.5 minutes. So we are talking about the impact of seconds, but it adds up.) I missed 157 minutes of work, so using their numbers I should have lowered my goal by 42.5 fixes but I couldn’t do that math in my head. We are six days into the new system and I’ve already missed my two days a month. I thought I made it with 85 fixes, but my official target might have been 87.5. That means I did 97%. We’ll see what they say today.

I know I talk a lot about the numbers at work, but honestly it’s part of what I love about the job. 1. Numbers don’t lie. You can discuss why the numbers are what they are and develop strategies to meet them. I find calculating the numerical benchmarks to be soothing and an objective way to see how my day is going. And, while my employer would hate to hear this, it’s a good reminder that sometimes you can’t work harder only smarter and not everyone had the capacity to hit 100% of arbitrary numbers every day.

The calculations and my podcast keep my mind busy and allow me to brainstorm what I need to do for my publishing business. If I have to work full-time, I would rather work the blue-collar warehouse job than a white-collar office job that destroys my intellectual capacity and short-circuits my brain with stress. 2. I preserve my creative energy for myself. Listening to publishing-related podcasts, various sources of news, other creators and even some bizarre non-fiction stories keeps my mental focus on my goals and allows me to give my full effort to my employer while still working toward my personal goals.

3. I love the clothes. I have followed Stitch Fix since they launched, when The Teenager was a preschooler and I still had a subscription to vogue. I love seeing, touching and preparing the clothes for their clients. I love seeing the fixes, their color combinations, their textures and I love imagining the person who would wear them. I also like to make judgments of whether or not we could be friends based on their box. Because if you’re on fix #72 and I think all the clothes are hideous, that’s your style and we can’t blame the stylist or the algorithm. And since I write fiction in the fashion world, I love seeing the new trends and which items become perennial offerings.

I also took two muscle relaxers, after not taking them during the weekend. I’ve been curious if some of the strange feelings I have in my legs are from when the muscle relaxers wear off or from missing a couple chiropractor appointments due to other doctors’ visits. The jury is out– but the bottom line is with the muscle relaxers, working out and chiropractic care my body moves easier.

A much awaited visit to Back in Line Chiropractic

After work, I filled my water bottle and headed to my friends at Back in Line Chiropractic and Wellness Center. Not only is former physical therapist and chiropractor Nicole Jensen super smart and personable, but the staff contributes some extra care as well. When my schedule got out of control, office staff person B (as I don’t know if she would want me calling her out in a public forum) made sure I got not only one but two appointments so I could survive the holiday season with my mobility in tact.

I apologized to Nicole for letting three weeks go by without an appointment, and reassured her that I did not fall out of love with her. I summarized how life had gotten away from me, and by the time my trainer Andrew noticed that my legs were turning inward in an unusual fashion and I noticed I felt like the Tin Man in the Wizard of Oz, I luckily had called B and had my appointment on the books.

The noises my body made were brutal, but it’s a weird feeling when you stand up and your feet and legs feel loose, move freer and have a more easygoing gait. It’s disorienting. But it’s a good reminder than sometimes I need more help than I realize.

Nicole then shipped me off to Andrew at Apex Training.

The brutal workout at Apex

I love Andrew. I really do. I respect the way he has learned my quirks and can read my form. He has learned ways to troubleshoot what my podiatrist calls my “challenging gait” due to my cerebral palsy. But last night was a killer core and shoulders work out. It was awesome, and murderous. I am gaining so much upper body strength and am very impressed with my lower body function gains.

We missed some workouts recently because Andrew caught a cold and then took some family time for the holidays, but I told him it wasn’t fair that he was punishing me with heavy weights when we lifted and high reps in the more cardio-based exercises. After all, he had canceled not me.

Needless to say, when I got home I ate the lovely dinner The Teenager (lamb, broccoli and hand-cut, homemade parmesan fries) prepared and collapsed in bed. To wake at 3:56 a.m. before my 4 a.m. alarm.

A day in the life— medical update, meal plans, sunshine, animals and publishing

I make a lot of lists.

Sometimes my journals are nothing but to do lists and shopping lists. But I like lists— even if I never refer to them again, the act of making a list allows me to stop thinking about things.

If I want to refer to it later, I know where to look, but I no longer have to worry about forgetting as if I want to remember or revisit items from an earlier day I can but I am not staring at a list focusing on what needs to be addressed versus what I actually did.

Many people make lists to receive the satisfaction of checking off the things that are done. I don’t do that. Sometimes I do, but now it’s more like I am acknowledging the list versus trying to conquer it.

I used to finish my list every day or stress over the things I didn’t get to, and on top of that— the list never made me feel better or more in control.

It just exhausted me.

Trapped and the Cover for the Anthology Arrive

Parisian Phoenix’s first contemporary romance has arrived and it looks great. Read more about that here.

But I also received the cover for Not An Able-Bodied White Man with Money, which I will be blogging about on the Parisian Phoenix site this weekend.

And I have a 4 p.m. meeting today with another author who I have been hoping would join our family.

Now if only I could finalize some of our business documents to really move the projects forward.

Yesterday (Voluntary Time Off) and evaluating my health

Life at Stitch Fix’s Bizzy Hizzy has been odd lately. We’re shipping something like 8,000 fixes a day and having the opportunity for voluntary time off.

Last week, I performed at pretty damn close to 100% without pain or significant mobility issues. This week, issues started mildly during my Sunday shift and deteriorated Monday & Tuesday, leaving me at 80% and crying myself to sleep. I talked about this here.

I’m very much wondering if my menstrual cycle has something to do with it, as the Mirena IUD has done miracles for my pain and issues in that department but has made my cycle irregular. I think my body is trying to menstruate later than usual.

I was taking inventory of my recent balance, mobility and functioning issues as today I had my annual “wellness visit” that the office rescheduled from last week.

I took VTO yesterday to allow myself some rest and some time as life (and grief from my father’s death two months ago) has gotten chaotic and overwhelming.

And I made the teenager and I grilled cheese as I had promised to do, and the child acted like I had prepared filet mignon for her.

I have a feeling I will be repeating that after school today.

We also watched Miranda Sings Live on Netflix. The teenager went through a time when she watched the show, so that was weird. It always amazes me how much talent it takes to perform badly.

The doctor today

I have spent more than a decade assembling a talented and caring medical team, so now I can confidently say any issues with my medical treatment stem from the system and not from my doctors.

The doctor and his resident agreed with my assessment that it’s time for me to get into the physiatrist and that their office will advocate for me on that as well, and that my instincts and approaches are correct.

I learned that women more so than men tend to favor one side when they move or stand. As women age, this tendency can create problems. That means this is a problem normal people have and not just a result of cerebral palsy.

And most interestingly… I learned that women more so than men tend to favor one side when they move or stand. As women age, this tendency to let’s say ‘lean’ can create problems, just like what I am experiencing now with my right hip and right leg/foot. That means this is a problem normal people have and not just a result of cerebral palsy.

I reiterated to them that I do know I need to lose 20 pounds, but that we have some issues to address before that.

The psychology of emotional and physical pain

When I was turning 40, I embarked on a journey to lose five pounds and gain muscle. I inadvertently lost 30 lbs and ended up a skeleton and regained some weight to look like this:

That was about 30 pounds ago. I have no need to be that lean again, but I’d really like to see 135 lbs again— which means I need to lose 20 lbs.

I told my doctor and his resident— I know I can’t eat an entire bag of cheese puffs or Wawa bowl of mac and cheese and brisket after dinner. But I’m struggling with depression from my body pain and my father’s unexpected death.

I’m grateful I haven’t turned to alcohol like many in my family, but I have “given in” to food as a psychological crutch.

I pay almost $300 a month for a personal trainer, but I can’t work as hard as I want to because I hurt and I feel like I need answers as to how to move my body so it doesn’t hurt. Because if I could exercise more and move more, I wouldn’t sabotage myself by eating garbage (or if I did, I would be active enough to balance it).

But right now, when I come home from a ten-hour shift with my body twisted and aching badly, and wishing I could call my dad so he could make me laugh and tell me how much it sucks to get old, I grab junk food because it’s the last pleasure I have.

I can’t move without pain so if I’m going to be forced to get fat and lazy I might as well enjoy the process.

These are ugly thoughts and I know that, but I’m being honest.

The fun stuff: errands with Nan

After leaving my primary care doctor, I called Nan as we were scheduled to do some errands together. We stopped at Wawa for some hot caffeinated beverages (cafe con leche for me and vanilla chai for Nan).

Among other stops we visited Park Avenue Market and Deli, one of our favorite haunts known for its deli, salads and meats.

Although I am once again contemplating more of a vegan diet, which will make the teenaged carnivore wince, I am not ready to commit until I feel better. We must achieve discipline before we enact change.

I never got around to meal planning yesterday so I didn’t have a list. I ended up spending $36.89 and I think the results will work.

I purchased: two packs of beef jerky, one small box of minute rice for the teen, three or four teeny tiny bags of Wise snacks from popcorn to potato chips, meatballs, the biggest damn carrot I’ve ever seen, frozen vegetable medley with potatoes and garlic herb sauce, sweet potato crinkle cut fries, pork roll, Lebanon bologna, liverwurst, turkey, olive salad, a store-baked pig ear for the dog and something called “hot pepper shooters”— round hot peppers stuffed with prosciutto and provolone.

Rough meal plan

My rough meal plan for the next week or so is:

  • Sandwiches
  • Meatballs and green peppers, either as a sandwich or in pasta
  • vegetable lasagna still in the freezer from last week
  • Burgers and fries, using ground beef from the freezer and the sweet potato fries
  • Cold tortellini salad with roasted carrot, olive salad and seasoned broccoli (broccoli is in the freezer)
  • Pork roll and egg sandwiches
  • Chicken and the frozen vegetables and rice or other grain

PS— we also welcomed a new foster into the house. Her name is Babs. Meet her in this video. I need to make her a page.

Processing childhood trauma

Trigger warning— I’m not sure exactly where this post will go but it will discuss sexual misconduct between an adult and a child and it will touch on alcoholism.

I know some people in my family may be uncomfortable with what I am about to write — because what happens in our private lives should remain private. And I agree with that, and I prefer not to air private matters in a public forum. As a writer, I want my public space to reflect a more professional persona.

But I also know I “check a lot of boxes” for struggles and realities that may not be apparent and that other people share. And together we have strength. Commonality.

So here goes.

But please, as I’ve said in other posts that mention times in the past that include other people and the actions of other people, remember that this is my story, my experience and my feelings.

Whatever I write in this space, because I’m not even sure where it will go, I am merely trying to offer a glimpse into my grief and how that is triggering— and I hate that word ‘triggering’ — my past trauma.

And especially when people are trying to do nice things for you, it feels extra garbage-y to have your mind implode.

Gene Kelly prompted me to write this blog entry. Spotify provided me with a jazz mix that included “Singing in the Rain.” And “Singing in the Rain” left me analyzing the issues that have plagued me since childhood that overcame me this weekend.

“Singing in the Rain.” You know… “Singing in the Rain.”

I learned to whistle in the bar. There was a man, I’m not sure who it was, who used to try and get me to whistle “Singing in the Rain.” I’m not sure which bar, maybe The Red Geranium, which is also where my mom served as the afternoon bartender for a while and where the owner’s grandson almost drowned me one summer day.

I don’t even remember who taught me to whistle.

I went to the bar with my mother because my father usually stopped at a bar after work. And he often didn’t come home until he spent all his money or the bar closed. So, my mom and I would go looking for him.

Each bar had a highlight. One of my school friends hung out at Delaware House waiting for her mom. But Delaware House burned down in 1986— I think my Dad might have been there that night— and all I remember is purple-hued lighting and one time someone vomited on the sidewalk right outside the door while I was standing there.

In my memory, the fire took out my grandfather’s favorite clothing store (not true according to newspaper records)— Effross’s— though thinking harder I don’t known if that recollection is correct. Apparently, Mr. Effross died in November. My grandfather bought all his Levi’s from Mr. Effross.

My grandfather chewed Jucyfruit, enjoyed the occasional trip to Kmart, smoked Parliaments and listened to Jim Reeves. He would hand me an empty coffee can and tell me he’d pay me a penny for every cigarette butt I could find in our yard.

At one point, I spent all the time I could with him. My parents said we had moved to Pennsylvania to be closer to him and my grandmother, moving into the trailer right besides my grandparents in the trailer park.

My mother befriended an elderly man named James Wicks who lived in a trailer on the other side of us. He had no family, so my mother cared for him until his death. And we inherited his tan Chevy Citation.

On some days, while my mom went to see Wicky, I would go see my Aunt Sharon and my grandpa. I spent a lot of time with them as they served as my babysitter when my mom and dad would go for motorcycle rides or when my parents planned to go drinking.

They had cable. We did not. So if I was lucky, I might get to watch The Addams Family. My grandfather liked Highway to Heaven and Knight Rider.

At one point, my uncle had moved to another state. I seem to think I was 10, because I tend to think everything bad that happened to me happened around that time. My aunt had gone to stay with them. She and my grandpa had plans to move up there.

If I can trust my memory, I was wearing a pastel striped romper, with shorts. [Trigger warning] He asked me to come sit on his lap, so I did. He started rubbing my inner thighs. I remember his hands, and I remember how close they were getting to my romper.

There were a few other times where he touched me inappropriately in similar fashion, so I stopped sitting in his lap.

And eventually I avoided going to his house when no one else was home.

I told no one.

But then, a while later, and I don’t know if Aunt Sharon was home or not, I think she was… We ordered a pizza. My grandfather asked if I wanted to go with him to pick it up. I said yes, probably because I wanted a “jungle juice” and to play the Pac Man arcade game.

The pizza place was probably less than two miles away.

But he didn’t go to the pizza place.

He turned down a side road. And then to a dirt road. The night was dark. We had no street lights. I knew where we were, but I also knew it was the middle of nowhere.

He patted the seat beside him. It was a big old vinyl bench seat. He told me to come over and kiss him. So, as a granddaughter would, I kissed his cheek.

He told me no. That’s not how you kiss. And then his tongue was in my mouth. Deep in my mouth. Invading my mouth.

I was terrified.

I don’t remember what I did to get away. But we did go get the pizza.

I didn’t tell my mom until high school. I just avoided my grandfather. But my mom was going to ask him to drive me home from play rehearsal. And I knew I couldn’t be alone with him.

I didn’t tell my dad until I was in college. My grandfather and I had a tumultuous relationship because I called him a “selfish old bastard.” Yeah, no one knew the real reason why I said that. But my grandfather never spoke to me again.

And that hurt my dad.

One day he got drunk and asked me point blank, “what did you grandfather ever do to you, molest you or something?”

“Yeah, Dad,” I said. “Actually he did.”

And I will remember the shock on his face forever.

My father’s recent death has forced me to spend more time in memories like these than I usually allow.

I tell this story because I know others have similar stories. I tell this story because in the wake of my father’s death, I think of my grandfather more. I tell this story because yesterday morning I wept while driving to work at 5:45 a.m. because I use a country road that, in that moment, reminded me of that country road.

These stories are invisible. People don’t tell these stories. Skeletons belong in closets.

But I’m tired of these stories haunting me, circling my own head, so I’m going to leave this here.

I spent a good deal of my youth afraid of what my grandfather might do. To me.

My first kiss came from my grandfather. I didn’t even know the difference between boys and girls.

I still freak out if I have to kiss a man.

I’m grateful I had the wisdom to avoid my grandfather.

My grandfather is dead.

My father is dead. His brother is dead.

Aunt Sharon is still with us, but she has an intellectual disability that renders her an eternal child.

So this story can’t hurt any of them.

But maybe it can free me.

Because those memories still ignite fear in me.

Iron Man 3: a Christmas movie?

The teenager and I have a favorite Christmas movie— The Ref with Denis Leary.

But Denis may have lost his place as our unorthodox Christmas hero because Tony Stark has usurped his place.

I had the vague feeling of déjà vu watching the film as I remembered more of this one than I usually do with films I’ve only seen once.

This one is fun because Tony Stark spends much of the film without the use of technology and his suits, relying instead on his wit and his body.

There’s a theme of taking responsibility for one’s actions running through the film, perhaps getting us ready for Spider-Man’s line, “with great power comes great responsibility.”

There is also a young man named Harley who I hope to see in a future film, and I also want to see Agent Caulson’s cellist. She was mentioned in Iron Man 2 and The Avengers. But I digress.

But what really steals this movie and provides probably the closest thing to reality is Tony Stark struggling with PTSD and anxiety attacks after fighting off robotic aliens in New York (Avengers). It’s refreshing to see a good guy deal with mental health issues on screen.