An outstretched hand holding an outline illustration of a brain against a grey background

What My Initial TMS Appointment Was Like

I recently started TMS for treatment-resistant depression. My first appointment was an interesting process. Regular visits are fairly straightforward, but there are a lot of steps to complete in a first TMS appointment that set you up for the rest of your treatment. Here’s how mine went.

I arrived at the clinic at my appointment time and went into a room containing a large machine with a digital readout connected to a tube with a peculiar-looking black attachment at the end. The room looks rather like what you’d expect if a therapist with a special interest in neurology suddenly switched fields and became a dentist. There’s a painting with uplifting words and two matching prints of the human brain on the walls, a mechanical reclining chair complete with a little paper bib over the pillow, and a desk with a computer and monitor. The walls are a relaxing shade of dark teal, and there’s a TV mounted at eye-level across from the chair.

TMS Mapping

The psychiatrist and two technicians were present, and they began by explaining what would happen. The first portion of the appointment would be dedicated to “mapping.” First, they would place a white cap on my head and take lots of measurements that would be used to mark the location of a couple parts of my brain. Then, I was to sit with my right forearm resting on a pillow on my lap while they held the magnetic coil (the black attachment at the end of the tube) up to the left side of my head and delivered pulses of varying intensity into my motor cortex.

Cortex sensorimoteur1.jpg: Pancratderivative work: Iamozy, CC BY-SA 3.0 https://creativecommons.org/licenses/by-sa/3.0, via Wikimedia Commons

The purpose of this part of the process is to determine the lowest intensity that causes the patient’s thumb to twitch involuntarily. That intensity is known as the motor threshold. Mapping allows providers to tailor the patient’s treatment to specific parameters – the exact spot where the coil should be placed and the intensity of magnetic pulses that is most effective for that person.

What Does the Mapping Process Feel Like?

I found this part of my initial TMS appointment to be fascinating and a bit intimidating. As someone who hates being the center of attention, having three (very nice) people hovering over me, touching the cap, and stretching a tape measure over and around my head was uncomfortable. You only do it once, though, so that cap is now used for all of my treatments.

Determining my motor threshold was the fascinating part. I sat with my elbow bent and my forearm on my lap, oriented with my palm slightly up so that my thumb was visible and unhindered. The team placed sticky electrodes on and around my thumb and connected them to a machine next to me. I was asked to relax my arm as much as possible. The coil was held in contact with the cap. It produced a clicking sound and a small tap on the side of my head when pulses were administered. As they worked, the psychiatrist and technicians watched my thumb for movement and checked the readout on the machine for spikes in electrical activity.

Although it was bizarre to feel my hand moving without my conscious direction, nothing about the process was painful. It’s like when you develop a temporary eyelid twitch; it’s maybe a little disconcerting, but that’s about it. Subsequent pulses became less intense and had mixed results. A slightly different spot on my head would cause all of my fingers or even my wrist to move. Eventually, we landed on my motor threshold, and the electrodes were removed from my thumb.

The First TMS Treatment

At this point, I think I put earplugs in, but I might have done that earlier. Once I was tilted back in the chair, the pillow was adjusted, and someone held the sides of it up by my face. The air in the pillow was then vacuumed out, leaving a stiff, shell-like nest for my head to rest in. It feels a bit weird, but it helps keep your head still.

The coil was then attached to a mount connected to the chair. The mount is a mobile arm that allows the coil to be positioned on the patient’s head. Positioning the coil is a delicate business, so the techs did a lot of adjusting, locking it into place, and walking in front of me to look intently at my head from different angles before walking back and adjusting it some more.

There is a paucity of royalty-free TMS images online, and this is one of the only ones that show anything resembling the position of the coil. This image cracks me up. Is it the inexplicable lack of a shirt? Is it the arms held out to the sides? The coil descending from the heavens on a pole? I don’t know, but I love it.

(MistyHora at the English Wikipedia, CC BY-SA 3.0 http://creativecommons.org/licenses/by-sa/3.0/, via Wikimedia Commons)

What is “Intensity” in TMS Treatment?

We started at an intensity below that of my motor threshold. Intensity is measured in terms of relative percentages. When mapping, intensity is expressed as a percentage of the total output the particular brand of TMS machine you’re using is capable of producing. The motor threshold exists at some level of intensity, which means that it is also expressed as a percentage. For instance, mine is 32% of the TMS machine’s total power.

As the appointments progress, the intensity of the treatments increases. The easiest way to think of this part is to consider the treatment intensity as a percentage of the motor threshold. So, my motor threshold of 32 is the new 100%, and each treatment is set to an intensity that’s described in relation to my motor threshold. We started at 60% of my motor threshold (19 or so on the machine) and bumped it up a few times during that treatment, reaching about 70% by the time it was over.

What Does TMS Feel Like?

I knew that there would be a series of sounds and accompanying taps on my head, followed by a period of a few seconds of nothing, then more taps, and that would repeat. My insurance will cover the “10 Hz” protocol (10 Hz refers to the frequency of magnetic pulses), which follows a 75-repetition pattern of four seconds of pulses (known as trains) and 11 seconds between trains. A frequency of 10 Hz means that there are 10 pulses per second (and 40 pulses per train). 40 pulses times 75 repetitions equals 3,000 pulses per treatment. Each treatment under this protocol lasts 18 minutes and 26 seconds.

Initially, the “taps” didn’t feel much like taps at all. It was like drops of cold water were falling from a great height into a small hole in my head. The sensation would spread out from the center, although it remained restricted to a very small area. When each train ended, so did the sensations.

Every few minutes, someone would ask me if they could turn the intensity up a notch. As the intensity went up, the pulses felt more like tapping. I found it uncomfortable but not painful at that level.

A woodpecker makes for a good analogy when describing how it feels. At lower intensities, it’s like a small bird — maybe a downy woodpecker — that’s persistently curious about the acoustic properties of your skull. The higher intensities I’ve reached in subsequent appointments have replaced the little woodpecker with a much larger one, like a northern flicker.

Speaking as someone who has been licked on the forehead by a flicker and had one land on the top of their head (I worked at a wildlife rehab center), I can say that, like a TMS machine, they make a lot of noise and have incredible persistence. Thankfully, unlike flickers, TMS machines do not scream, and you can stop them whenever you want.

The machine is pretty loud — both the beeps it emits and the clicking pulses — but the earplugs help muffle the sound. The coil is heavy, and I was very aware of it resting on the side of my head. It did help me remember to stay still, though. Talking was a bit challenging, as I’m used to relying on nodding and shaking my head to supplement my conversational skills. I felt rather stunted without it, but we muddled through.

After that, my first TMS appointment was over. I had been a little apprehensive about it, but it turned out just fine. In fact, it was reassuring to know what it felt like and what I could expect going forward. Sometimes, the best way to handle uncertainty is just to jump in and get started.

a black and white illustration of a woman standing in front of a window in a dark room at night

Shifting My Depression Treatment from Ketamine to TMS

Unfortunately, ketamine is not helping me much anymore. The infusion before last gave me a small boost, and I remember feeling good for about five days following my appointment. Some of the other benefits I get from ketamine, including improved appetite, fewer thoughts about self-harm and suicide, and more energy, still seemed to extend for a week or so post-infusion. On the whole, though, I wasn’t feeling encouraged.

My most recent ketamine infusion came just a few days before I started transcranial magnetic stimulation (TMS) treatments. I have almost no memory of that infusion. The day after the infusion did seem better, and I had the sense that things around me seemed a bit brighter or more colorful. I hate to say it, but aside from that mild improvement on that particular day, I don’t think the infusion did much of anything for me.

So, I’ve decided to stop getting ketamine infusions for the foreseeable future. It’s unclear why they stopped helping me, so I’m not opposed to keeping the option of restarting them in my back pocket. Right now, though, I don’t think that continuing them is providing much, if any, benefit to me.

Lithium and My Poor Kidneys

I’m disappointed that I’ve come to this conclusion about ketamine, but I’m also in a slightly delicate spot, and something needs to change.

Image by chenspec on Pixabay

I increased my lithium dose in March because my mental health was deteriorating. Lithium is probably the medication that I have the most conflicted relationship with. Taking such a high dose is effective at reducing my suicidal thoughts, but it’s not ideal for my poor kidneys. And when my kidneys can’t keep up, my lithium levels begin to inch toward toxic.

My lithium level as of a few weeks ago was slightly above the upper limit of “therapeutic.” It’s back in range now because I’ve been working on doing that human thing where you drink water, but I’d still rather not take this dose of lithium for very long.

Deciding to Try TMS

It’s the combination of ketamine’s waning efficacy and lithium’s waxing toxicity that led me to TMS. I’m not in a good place, and I need a different solution. TMS is mostly covered by my insurance, there’s a clinic I like close to where I live, and the downsides of trying it are very few.

Initially, I considered continuing ketamine while doing TMS, as one could receive both treatments concurrently. I’ve opted to do TMS alone because ketamine is not offering me relief and no longer seems worth the expense. However, it’s possible that ketamine is helping me more than I realize, and stopping infusions might worsen my depression. I’ll just have to see how it goes.

I also considered ECT because of how severe my depression was before I increased my lithium dose, but I think it makes sense to try TMS first.

I’ve done a few TMS treatments so far, and they were strange and interesting experiences, but I think I’ll save my descriptions for another post.

Setting Ketamine Infusions Aside

It makes me rather sad to think that this part of my life is over. I’ll miss the wonderful people at my ketamine clinic, and I’ll miss writing about my experiences there. I’m glad I documented my ketamine dreams, which I will remember with equal measures bemusement and fascination.

I’m also upset that I’ve “failed” yet another treatment. It’s a discouraging development that leads me down well-worn paths of self-criticism and frustration.

That said, I’m incredibly grateful for the improvements I gained from ketamine. There was a while there where it was really turning my life around. I started volunteering, I was happier, I felt excited about life, and then the pandemic hit, and a series of stressors undid all the positive progress I’d made. (My therapist would remind me that not all of my progress was lost. That’s just my brain lying to me again.)

Although I won’t be getting infusions, I would love to keep up with the research and continue sharing information about ketamine. I would especially like to see what data exists on the long-term efficacy of ketamine and whether my experience of it is represented in the literature. A quick search shows tons of studies published in 2021 and 2022, so there’s certainly new information out there. My brain power is lacking, though, so I’ll have to save that for another time as well.

Photo by Brad Christian on Unsplash (@y_barron)

I still believe that it’s important to raise awareness of ketamine treatment for depression and reduce the stigma associated with it. It may not be working for me right now, but it’s still a valuable option that people with treatment-resistant depression should be aware of.

So, I’ll leave the door open for further posts in The Ketamine Chronicles. I still want the series to be a resource for people who are considering IV ketamine infusions and find first-person accounts helpful or reassuring. I hope I’ve accomplished that to some degree in this phase of the series. If you’ve been reading for a while or just started, thank you for clicking and scrolling and reading about my bizarre, profound, and nonsensical ketamine dreams.

How I Track Mental Health Symptoms

My therapist has been encouraging me to track my depression and various contributing factors for years. I’ve tried several apps, journals, and charts, but I always drop the practice after a little while. Eventually, I identified why those tools never worked for me and used that information to make my own system.

Why Motivational Journals and Apps Don’t Work for Me

I understand why a system with lots of elements appeals to some people, but I tend to find them discouraging – the opposite of their intended effect.

My Depression vs. Positivity

Whenever I tried an inspirational/motivational journal, I quickly lost interest. I’d open it up to mark down that I felt like a person-shaped vat of cold, unsalted mashed potatoes. The list of weekly goals I hadn’t met would be staring up at me. Some inspirational quotes would arrive in my brain through the filter of my depression, limp and meaningless. Over time, I began to avoid them, knowing that the initial excitement of setting up a shiny new tracking system would sour.

Apps Aren’t It, Either

Apps have the advantage of offering daily reminders, but if the app is structured like the previously discussed journals, a cheery notification that it’s time to check in only distances me further. I really wanted apps to work for me, and I’ve been consistent with them for two or three weeks at a time, but I always abandon them eventually. They’re too complex, they ask me too many questions, or they document more than what I want to track.

Mood Scales and My Problem with Numbers

Number-based tracking scales usually include too much choice for me and don’t allow for flexible indecisiveness. A 1-to-5 scale just paralyzes me. What if I say “3,” but I’m really a “2?” That would be catastrophic, obviously.

Perfectionism

Maybe it’s a vestige of perfectionistic test anxiety, like I have to choose the “right” answer and be consistent in my interpretation of the scale or else anyone who looks at my data will get an inaccurate sense of my mental health. So instead, I just stop using them. When there’s no data to look at, I didn’t do it wrong!

So in the end, I decided to go with what my therapist suggested in the first place (I must be exasperating when it comes to tracking), and just made my own system to track my mental health.

My Method for Tracking Mental Health Symptoms

I wanted something straightforward, easy to use, and without the frills of a motivational journal. I got a completely blank, unruled journal and a set of stencils. I found these stencils online by searching something like “bullet journal stencils.”

The Mood Tracker

Each hexagon represents a day, which I’ve drawn a line through to depict AM on the top and PM on the bottom. I chose three colors to be “good,” “blah,” and “bad.” This way, I only need to pick a color and fill in the shape. If I can’t decide on a color, I can mix two of them together or shade the shape according to how the day progressed.

I also write small notes every now and then for medication changes, ketamine appointments, and other factors. I like that the bare minimum for this system feels doable for me but isn’t so scant that it’s uninformative.

The Medication Tracker

The medication tracker is similar to the mood tracker in that each section represents a day of a month. The inner row is morning and the outer circle is night. I picked a color for “Yes, I took my meds” and a color for “No, I didn’t take them.” It does help me to see how frequently I’ve missed doses, partly because the perfectionist in me hates to see too much orange.

I keep the journal and the colored pencils in my nightstand so they’re easy to get to and I don’t have the excuse of already being in bed when I remember to track.

How It’s Going

I’ve been consistent with this method for a little over two months, which is probably the longest stretch I’ve ever gone with tracking mental health symptoms. I can’t say that anything groundbreaking has come of it yet, but it is interesting to confirm some of my expectations.

I’ve tried and abandoned so many methods that I don’t think I showed my therapist my journal until I had been using it for a month. I didn’t want it to be yet another dud in a long line of tracking tools. So, I kept it to myself for a little while and am only just starting to assess its usefulness.

Just like with any mental health-tracking method, there are gaps in the data that become evident over time. I’ve been adding symbols to my mood tracker for things like self harm and my period. It’s becoming more complex, but I think the fact that I decide when to add those symbols rather than having a dedicated section for them works well for me.

That said, I’m considering adding a way to track more factors, such as appetite, sleep, and exercise. I don’t want to make it too complex, but I might have the habit established enough to expand my system without abandoning it.

There are tons of ways to track mental health symptoms and factors, and you can find many of them detailed online. What way works best for you?

A network of raised ice patterns on concrete

Thoughts on Depression, Trauma, and Change

My depression has not been great lately, and I’ve let my blog go wild in my absence. The longer I go without posting, the harder it is to pick up again. I have to think back to where I left off and decide how to begin.

After the Disaster

Last I wrote, I was wrestling with the loss of our house and belongings after a grassfire destroyed them. Life has gone on, as it tends to do. I’ve been back to the house a few more times, but only to look at it – not to search for anything. Yesterday, I parked by the trails near my neighborhood (when do I start calling it “my old neighborhood?”) and got out to look at the mesa. Green grass was growing like stubble over the burned landscape. I don’t know why I was surprised to see it that way. I knew the mesa would recover quickly. I suppose it was just more painful than I expected to notice the passage of time after a disaster.

A flat landscape with mountains in the background and partially destroyed wooden fences in the foreground

It’s not prominent in national news anymore, displaced people have scattered and settled, and we’ve acquired all the things we need in our new place. The wider community is moving on, as is reasonable and expected. And yet, it still feels so immediate and all-encompassing to me.

The Day-to-Day Stress

Wind, for instance, makes me feel a horrible sense of dread. It reminds me of walking Stella by the houses across the street that morning, several hours before the fire. Snapshots of it come back to me: a woman in her pajamas, rushing to pick up trash from her capsized bin; a full recycling can skidding across the street at high velocity; picking up crumpled, Christmas-themed debris and hearing someone remind me that wrapping paper can’t be recycled.

Most viscerally, though, wind reminds me of stumbling to a fencepost on the mesa, my hair whipping around my face in the deafening howl of near hurricane-force wind. It reminds me of standing there in disbelief, watching the wall of smoke move closer.

I was driving during a high wind advisory the other day, and all I could think about was my dog, Stella, alone in the apartment. I wanted to get back there as soon as possible in case a fire broke out. I couldn’t help but imagine the terrible possibilities. What if the road to the gate was clogged with cars? Could I park on the sidewalk and climb the fence? How would I transport Stella and our things to the car? What would I take? I imagined myself climbing the fence and running to our apartment, only to realize that imaginary me had left the garage door opener in the car, and I would need it to get inside. Should I break a window or run back to the car?

Suddenly, my GPS told me to get off at the next exit, so I took a deep breath and reminded myself that it was windy. That was it. No emergency.

The slightest thing will make me think of the fire. A wooden bowl in a craft store brought me to tears the other day. The realization that it’s spring and I don’t have any warm-weather clothes is disheartening. Then again, I don’t think about it all the time, and in some ways, I’m settling into our new place and getting used to my new routine. When I try to notice when things don’t suck, I can identify things about the apartment that I like. It’s sunny, conveniently located, and it has walking paths nearby. I like my room, which feels bigger than my old one. My new plants are doing well. It’s a nice place to live, and we’re fortunate to have it.

Depression is Stubborn

Despite the positive developments, my mental health has been declining for a while. Well, it’s on a low plateau, like one of those deep-sea shelves. Even before the fire, things were trending downward, so all the upheaval hasn’t helped my depression.

I’m having a hard time pulling myself out of the hopelessness. Whenever my depression worsens, I struggle to see things positively, and not just about the fire. The future is hard to imagine. Depression seems to stretch on infinitely. I can go out and do things and even enjoy them on some level, but underneath the top layers, any kind of meaningful goal or long-term ambition feels like too much effort and utterly out of reach.

Depending on when I finish working for the day, I either take a nap or go for a walk with Stella. My afternoon walks feel long and exhausting, but Stella doesn’t mind if I walk slowly and stop a lot. I let her point us down a new street the other day, and I ended up getting completely turned around. I had to use Google Maps to get back. Small hiccups like that make me irritable when my mental health is poor, so I put Stella on a short leash for the rest of the walk. She eats goose poop, rolls on damp dirt, and forgets she’s on a leash when she takes off in pursuit of squirrels. It’s better if she walks right next to me.

A black dog with pointy ears sitting on dirt while looking up at camera and panting

I know that I’m very isolated. It’s somehow overwhelming to talk to friends or even make a blog post. I worry that if I go do something social, I’ll run out of energy and won’t be able to muster up any enthusiasm. Usually, it’s fine, but the thought of it is so exhausting that I’d rather be alone. I’m more comfortable alone, but I know it’s not good for me.

I don’t like abandoning my blog for long periods of time. Depressed me struggles to create an entire post that follows a cohesive story or structure. When I do write something, I usually convince myself that it needs more work before I can post it. I let it languish in my drafts folder until I eventually return to it, read it, and wonder why I thought it was so bad. This post, for instance, is a conglomeration of several drafts I wrote over the last few weeks.

The combination of depression and perfectionism is a strange mix. When it comes to things like showering and eating, I’m apathetic. But, when I’m writing a blog post, an email, or even a text, I have to edit obsessively. That is, until depression fills me up with apathy like sand in an hourglass, and I decide to set aside my writing.

Let’s see how long it takes me to write the next one. I’m setting that clam for one week. Maybe two.

Letting go of Items Found in the Ashes After the Marshall Fire

When we saw the pictures of our house after the Marshall Fire, we thought for sure there would be nothing left. We wanted to see for ourselves whether anything survived, though, so once we had donned our protective gear, we got to work sifting through the ash and rubble. Almost immediately, I found the ceramic tile from a Munich souvenir magnet that was part of my extensive collection.

I was hoping to find some of my jewelry, which I had gathered mostly as meaningful gifts from other people. When I found the magnet, I knew I had to be close to my jewelry, so I started digging again. After an hour or so, I unearthed my jewelry tree.

It was crusted over with bits of drywall and ash, but it still held a couple of pieces in the tray at the bottom. A bracelet I rarely wore, assorted earring backs and beads, and the barrette I mentioned in my previous post, now warped and empty.

I dug around some more and found three rings and two heavily damaged pendants. I placed all of them in a small bucket for safekeeping while I continued to sift.

On a small scale, I could understand where things were. Once I found my books and a magnet, I figured my jewelry was close. But it wasn’t always so intuitive. Things fell and were blown around so violently that at times, nothing seemed to belong in the areas in which I was looking.

The doll arm was a disturbing surprise. The small, ceramic arm that I pulled out from under a bleached, flaking book used to belong to a decorative doll with a purple dress and curly, brown hair. I had placed her up on the top shelf of my closet years ago and quite frankly, I forgot she was there. I found two arms and a leg.

Later, I tried to clean the disembodied limbs with vinegar and baking soda, but they’re too far gone. I suppose it might be creepy to hold onto them, but the gallows humor of it was too good to pass up without trying.

That first day at the house was exhausting. The shock of seeing it in person and of walking over the shattered glass and buckled drywall covering the blueprint of our house was beyond difficult.

It’s odd the way things blend into the rubble. I walked by the spiky metal pole at the back of the house 5 or 6 times before I realized that it was our Christmas tree. It took me another second to recognize that the amorphous glass shape adhered to the middle was a conglomeration of melted ornaments and lights.

Several large pieces of twisted metal in what was my room turned out to be Stella’s crate, the shelving from my closet, and my box spring. I was crouched, wearing a Tyvek suit, an N95 respirator, and goggles, digging with my gloved hands through two feet of wet ash and drywall. It hit me occasionally that I had been sleeping mere feet away from that exact spot only two weeks ago. Blissfully unaware of the impending disaster.

It was exciting to find some things on our first day. We weren’t expecting to, so the rush of success kept us sifting and digging far longer than we intended to. It was hard to stop once we had started. That momentum made it easier to focus only on the section in front of me and the items I thought were nearby. I could tune out the rest of the house, only taking it in when I stood to move to a new area.

A windowpane

The second time we went to the house was more emotionally challenging. Having seen it once already, it was less shocking but more deeply disturbing. It had sunk in since our last effort to sift. Still, we had found some things the first time, so we suited up and got back to work. Very quickly, my sliver of optimism turned into a sad, frustrated, mildly foul mood.

I was finding crispy, rusted rectangles that once were magnets from my collection. Was this one from Denmark? Was it from Sicily? I found a ceramic turtle, broken in several pieces, and I found mound upon mound of worthless rubble.

Grand Canyon National Park, Michigan, Cologne, Washington DC, no idea, Paris, Florence, Venice, Glacier National Park, no idea.
And these are the good ones of the nearly 100 that existed before the fire. I’ll get rid of most of them, but I wanted to take a photo.

Most of the things I found that were recognizable were too damaged to keep, so every time I found something, I reacted with sad dismissal. More ruined magnets, more shards of ceramic something or other, more melted glass, more ash and twisted metal and gritty debris. Everywhere I turned, there was more of the same.

Sometimes, I’d find something bizarre and warped, puzzle over it for a few moments, then discard it when it dawned on me that it was a carabiner that was in Stella’s hiking pack or the extra charging cables I kept by my bookcase. It was hard to know whether I was holding something precious or not because it all looked largely the same; everything is crusted over with foul-smelling concretions that have strange forms and colors. That, or the object itself is melted into something else and is completely distorted.

Melted beads

For the majority of the time we spent there on the second visit, it was absorbing and easy to get carried away with. But, I eventually reached a point where nothing I found seemed worth keeping and my presence there felt pointless.

A book with legible writing – rare. Most lumps of formerly books are completely blank.

On the face of it, I feel very fortunate. I have my family, my dog, and means to survive. The future-thinking part of me just wants to see the next steps. I don’t need much to function, so my focus is just to get the essentials. I try not to let myself think too much about what’s gone, but being in the house, or rather, being on it, makes it hard to ignore.

While painful, I think that the process of digging through my burned home helped me accept it. It made it easier to let go of the things I couldn’t find, and even the ones I did find. I knew cognitively that nearly everything was gone, but it was a different matter to feel it.

I’ll save a few things, like the jewelry I found, but the broken flower pots and the melted knick knacks can go with the rest of the house.

Scratched and pitted, but intact and all the more special for what it survived.

Documenting the aftermath

Every time I go back to the house, it’s harder to be there. I walk around, taking pictures from angles that I know will line up with photos I have from before the fire.

It’s dark, but I find myself wanting to honor my home that way. To me, there seems to be an extra injustice in the fire’s removal of what makes my home recognizable. The photos I take of it now only show the destruction, not the warm, familiar place I knew. Comparing the before and after feels like one way to document the home’s identity.

I think it’s natural to become numb to the sight of burned-out houses when you see them on the news and drive by them in your town, or – when it’s not your community – to not be able to grasp the devastation that each household is facing. But none of the homes that burned down were generic, faceless piles of charred rubble. The Marshall Fire stripped my house of almost all of the things that made it ours, but it’s still the place we called home, and I think it deserves to be seen as it is and as it was.

Acceptance after the Marshall fire

For the sake of my physical and mental health, I think I’m done digging through the ashes. I had wanted to get into it and see for myself whether anything survived. All the waiting – for the fire to be contained, for the snow to come and tamp it out, for the neighborhood to be deemed safe enough for entry – it gave me lots of time to wonder what could be lost under layers of debris, waiting to be discovered.

While depressing, it was something of a relief to be able to reassure myself that there was very little left to be found. And now that I have, I see no reason to continue exposing myself to the dangers of the property and the acute heartache of standing within it. I have a few things, and the rest is gone.

I feel ever so slightly more prepared to move forward, now. I want this experience to inform my perspective on material items, on being prepared for anything, and on the value of helping hands in times of darkness.

Not the disembodied doll hands, but the real ones that are attached to real people.

My House Burned Down in the Marshall Fire in Colorado

On the morning of December 30th, 2021, my mother and I walked through the neighborhoods across the boulevard, pausing to watch the geese on Harper Lake.

We marveled at the waves, agreeing that we’d never seen such wind in our community. In the shelter of the neighborhoods, we picked up empty milk jugs and cardboard boxes – recycling day in the wind. Entire, filled bins careened through the streets in the windier spots, strewing their contents across yards and mailboxes.

We thought that would be the worst of it.

Around noon, a cloud of smoke came billowing over Louisville and Superior. Unsure of what to make of it, we drove the short distance to a better vantage point, just outside our neighborhood. From there, it was clear that it was far, far larger than we had thought.

Note the person in the distance.

We were barely able to stand in the wind. Fearing that it might change and send the smoke our way, we headed home and checked the news. An unofficial tweet about a life-threatening situation nearby was what prompted us to start packing. But still, we didn’t really believe that it would grow to be so destructive. Just a couple minutes later, I could see flames in the distance. Our neighborhood sits directly next to a big, beautiful mesa with miles of tall, dry grasses just waiting to ignite.

I have sometimes wondered what I would do if a grass fire erupted while I walked on those trails. A lit cigarette, a lightning strike, a downed power line. On a windy day, a fire would rip through the landscape in seconds, sending burning tumbleweeds straight down the cul-de-sac and into the center of our little circular neighborhood.

That must be exactly what happened that day. We ran through the house, grabbing our wallets, laptops, and not much else. I unplugged the Christmas tree as I hurried by it, not thinking even then that the disaster would progress so far. We were in a bizarre state of disbelief – it was both urgent and somehow so precautionary that I was concerned about having something to do wherever we ended up waiting for it all to calm down. Despite the adrenaline, despite the flames in the distance, somewhere in my mind, I still expected to be home later.

We threw a few things in the trunk, I put the dog in the car, and we pulled out of the garage. The power was still on at that point, but it wouldn’t be for long, leaving panicked people unable to remember how to open their garages manually.

The roads were already packed with evacuees from the neighboring city and ours. It took us an hour and a half to drive across town, but only 20 minutes after we left our home, those parched grasses on the mesa were already spent fuel for the fire raging on the edge of our neighborhood.

(Somewhere else in Louisville or Superior)
Credit and thanks to: Patrick Kramer, firefighter who fought and documented the Marshall Fire

Over 1,000 homes were destroyed in parts of Boulder County on December 30th, 2021. There wasn’t much the fire crews could do for the structures, the jets of water from their hoses turning back on them in the 100-mile-an-hour wind. No planes or helicopters could drop fire suppressants. Costco was surrounded by fire, families fled from the Chuck E Cheese in a dystopian haze, and a horse ran through town, its image captured in a smoky, surreal photo.

A horse runs through Grasso Park, Superior
(Helen H. Richardson/The Denver Post via AP)

By the time the lumber yard of Home Depot caught fire, the fire hydrants were losing pressure as the city’s water began leaking out of hundreds of burned homes.

At a family member’s house in Denver, we watched the news. Still in the dark about the fate of our house, we scanned the footage to see if our neighborhood was on fire. We watched the reporter point to the homes surrounding Harper Lake as they fell apart in the inferno, the geese long gone on the wind. All the trash we picked up that morning now seems a tragic lesson in futility.

There’s nothing left of our house across the boulevard from Harper Lake. Just two brick pillars where the front door used to be.

I am overcome with grief at the thought of our home burning, everything exactly where we left it.

My coat, which I forgot, by the door. The dog bed in the alcove, the Christmas tree, the pictures on the walls. The fabric I’d laid out on the table to begin a sewing project, and our gingerbread cookies on the glass plate in the kitchen.

I can see our house in my mind as a snapshot in time – and then I see it all burning. As if I were standing in my house while in a bubble, watching it consume each and every flammable particle, I watch my sketchbooks and paintings disintegrate into fine ash.

I see the sweater my mother knit for me for my 16th birthday blow away as smoke, and the boxes of family photos in the basement go up in flames. The dishes shatter, the books burn, and in the deafening roar of the entire flaming city, the support beam in the basement twists in the heat and falls. Not even the frame is standing, having been reduced to ash in the rubble of what used to be our home.

I think of all the homes this way, their own family heirlooms and well-loved belongings going up in smoke all over Louisville and Superior. Every house held irreplaceable treasures.

Credit: The Denver Post

My heart hurts for the loss my family has suffered and for the entire community. All the things we’ll never get back. All the work that lies ahead.

I marvel at the timing of our own personal disaster. We saw flames and decided to leave at 1:10 PM. By approximately 1:30, the flames had reached our neighborhood. I absolutely shudder in my skin to imagine what could have happened if we had been at the store or out to lunch, or anywhere not home. Like many pets in the area, Stella would have been trapped. Her orange ball still sits in the yard – charred – but recognizable.

The way the fire blew through open areas at high speed was terrifying. Authorities estimate that in some places, it was moving the length of a football field in a matter of a few seconds.

If we had been out, there’s no way we could have made it through the traffic in time, and it makes me sick to think about. What if one person had the car and the other was stranded at home? What if we had been asleep?

It was some consolation for a day or so to believe that no one had lost their life in the fire, but that was soon updated. Two people remain missing and are presumed dead, and the unidentified remains of a third person have been found inside a burned structure. The loss of human life is the worst outcome possible during a disaster, and I know that all of us, especially those impacted by the fire, feel that loss keenly. We escaped with our lives. At least one person didn’t. The family and friends of that individual have a horror to live through unlike anything I experienced. I hope they have support and that eventually, the pain of the way in which they lost their loved one subsides, and they can remember them with peace.

The Meaning of Things

I find myself checking on my few belongings to make sure they’re where they should be. Nearly everything I own from before the fire is in my backpack, including the thumb drive with photos that I grabbed from my shelves and a worry stone that happened to be in my purse. I get a stab of anxiety when I think I might have misplaced something.

There are some things that have survived by being gifted or lent to others. A signed book my mother lent to a friend is now the only book she owns from before the fire. Pieces of artwork I’ve given as gifts are tucked away safely in others’ houses.

Other things were saved because we were wearing them, we grabbed them in our rush to leave, or we discovered them in our purses or the car once the house was already gone.

The thought of starting over with nothing familiar is difficult to swallow. All the little choices you make throughout the years to accumulate what you have are suddenly void. The belongings you get immediately following the disaster are welcomed, but different – different forks, different pillows, different gloves, different everything. There is so much change, it can’t possibly hit you all at the same time. Knowing that our house is gone, and as an entity, that place will never exist again, is gut wrenching. It’s a blow to my mental health that I’m not quite sure how to handle.

A book that became tightly compressed and somehow retained its ink.

This house is not the only place I’ve lived, but it is the only place I’ve lost in this way. My family bought the house almost 2 decades ago, and I’ve been living there ever since, except for two years in high school and the fall/winter semesters of college between 2014 and 2018.

Setting aside the items inside the house, the sense of loss when a home is destroyed is different from the sadness of moving away. In both cases, you no longer live there, but in one, the house is obliterated. Wasted. There will be no more triumphs and tragedies within its walls- yours or anyone else’s. Almost as if a house were a living thing, it’s difficult to accept that it no longer exists.

We attach meaning to things because we’re human. We make symbols out of them, let them represent feelings, events, people, and memories. We collect little trinkets, ticket stubs, and tangible evidence of our successes.

Everything inside a house is stuff. It’s also more than stuff because we make it more. We see a history unfolding in our lives that should be documented, and the physical pieces of that often feel the most real. A baby’s dress, a letter you saved, a single earring you can’t let go of- they’re all little slices of your past.

Losing all of that at once is overwhelming, sometimes beyond my own capacity to feel it. You do, however, immediately begin accumulating new stuff with which to make symbols. A fleece blanket the Pet Pantry gave me for Stella at the Disaster Assistance Center, the clothing so generously donated by friends, family, and strangers alike, and the thoughtful gifts of art supplies I’ve received are all things that I appreciate much more than I would have before the Marshall Fire.

Stella’s new blanket

At the same time, I’m grieving for my neighbors’ homes, the businesses in Louisville and Superior, and the city itself, which has been forever altered by the Marshall Fire. I don’t own the homes that I walk my dog by every day, but I feel like I’ve lost them, too. The homes I used to play in with kids my age, the gardens I admire in the summers – the pure familiarity that comes with a hometown is gone.

Homes across the road from my neighborhood, near Harper Lake (credit unknown)

I’ve spoken to some neighbors about the Marshall Fire briefly, and each time was comforting. We are all dealing with the same sadness and uncertainty, and while I wish my neighbors weren’t experiencing this with me, having that sense of community can be a push to rally for a shared purpose.

Some will rebuild, and some will move away. We’ll always share this history, though, and I hope we’ll stay connected. We’ve seen so much compassion and generosity in the last few days that I feel as though my understanding of human nature has been brightened. We humans are complicated, resilient, emotional stuff-collectors. The community will adapt to this disaster and come out the other side eventually. We might even be helped along by the sweetest therapy alpaca ever.

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A person sitting with their knees bent and their arms around their legs with pillows in the background

Examples of Sensory Processing Disorder Symptoms From an Adult with SPD

There are many resources online with examples of Sensory Processing Disorder, but what does it really feel like? As an adult who was diagnosed with SPD as a child, I finally have the language and perspective to be able to describe what Sensory Processing Disorder feels like to me. This article provides examples of Sensory Processing Disorder symptoms with accompanying descriptions of how I perceive things.

I am overresponsive to many stimuli, so this article doesn’t encompass every symptom or experience of SPD. A symptom checklist can be found at the end of this post.

What is Sensory Processing Disorder?

Sensory Processing Disorder (or Sensory Integration Dysfunction) can be thought of as a “neurological traffic jam” that prevents information from the senses from being organized for use in an appropriate way. There are several subtypes and various forms the disorder can take, but the underlying issue lies in the nervous system’s ability to take in and deal with sensory stimuli.

Examples of Sensory Processing Disorder Symptoms

Visual Overstimulation

Red, blue, and yellow shapes overlapping with light shining through
Photo by Chris F on Pexels

I can’t seem to filter visual “noise” in the same way that other people do. It feels like an onslaught of lights and images that I have no natural defense against. I reach my limit quickly.

Examples

  • 30 minutes of fluorescent lights make me feel like I’ve been out on a bright, snowy slope for a day without sunglasses.
  • Chaotic movement, like that in busy stores and restaurants is hard for me to follow. It just becomes a sharp scene of color and light that disorients me.
  • Flashing lights are highly distracting. My brain can’t tune them out, so they constantly vie for my attention.
  • I prefer an uncluttered living space because it requires less visual work to navigate. Clutter feels suffocating, and the constant stimulation of so many items around me feels draining.
  • I don’t always wear my glasses because the blurry distance is calming. It removes some of the sharpness of my visual field and lets me lower my defenses a little.
  • Digital screens can cause nausea for me, especially if I have to do a lot of scrolling up and down.

Sound Sensitivity and Sensory Gating

For some people with SPD, repeated stimuli don’t get filtered out like they do in people without sensory symptoms. This function is called “sensory gating.” The electrical response your brain has to an initial stimulus typically becomes smaller with subsequent stimuli as your brain adjusts to it and decides it doesn’t need your full attention. With SPD, however, this process is not as efficient.

A 3D render of a gray/blue material spraying outward against a black background
Photo by Petar Petkovski on Unsplash

Say you encounter a barking dog. Everyone is startled by the first bark. We get a boost of adrenaline, our hearts start beating faster, and we start imperceptibly (or perceptibly) sweating. Some people can quickly return to normal even as the dog continues to bark, but for people with SPD, every bark can feel just as jarring as the first one.

Sensory gating is not limited to auditory stimuli, but here are some examples of how sensitivity to sounds and sensory gating deficits affect me.

Examples

  • Stiff plastic wrappers hurt my ears and make my eyes water. Opening a granola bar feels like someone is aggressively crumpling 3 wrappers directly next to each of my ears. I don’t understand the acoustics of this phenomenon, but it is mighty unpleasant.
  • Loud toilets are a sudden thunderous roar to me. I used to refuse to go to the bathroom if I knew the toilet was one of those automatic, rapid flush ones. The noise would throw me into a panic and I’d burst out of the stall with my heart pounding. Thankfully, I have since mastered toilets.
  • I like wearing headphones even without anything playing because they soften the sounds around me.
  • Much like the barking dog example, some noises don’t get adjusted in my brain and therefore sound deafening the entire time they’re happening. I have to psych myself up to trigger or use loud household items, like:
    • blender
    • garbage disposal – my family knows to warn me before turning it on.
    • closing the microwave
    • electric toothbrush – I switch off between electric and regular when I feel I can’t handle the noise and vibration of the electric one.
    • garage door
    • coffee grinder
    • vacuum
    • lawn mower – if I don’t take enough breaks, I end up leaving the mower in the middle of the yard and then crying and hyperventilating on the floor. It feels like running the lawn mower while in a metal box, sound flying all around me at intolerable volume.

I have a technique for pouring dry dog food into a stainless steel bowl with minimal noise, I like to close doors quietly, and I prefer not to wear shoes indoors because my own footsteps are too loud.

Tactile Over-Responsivity and Sensory Defensiveness

A right hand touching a pine tree
Photo by Petr Macháček on Unsplash

Sensory defensiveness means that a person has an aversive, out-of-proportion reaction to a stimulus that is not considered dangerous or harmful by others. It doesn’t have to be tactile, but as I’ve always been sensitive to touch (tactile over-responsivity), these are some of the most challenging examples of Sensory Processing Disorder in this regard for me.

Examples

  • Unexpected hugs (especially from behind). Touch sometimes startles me even when I know it’s coming, so being suddenly grabbed is scary. Agreed-upon hugs are usually good in my book, though.
  • The feeling of tearing paper towels without the perforation is one of the most viscerally horrible sensations I’ve ever felt, and I can’t even explain why. It makes me want to throw up and then crumple into a little ball on the floor.
  • Lotion. I have a love/hate relationship with it due to its revolting sliminess and soothing itch relief.
  • Splashing in pools is a surefire way to make sure I get out. This is partly visual, as I’m sensitive to movement near my face, and partly that I seem to feel every individual drop. I interpret it as danger and react in the way someone would if a spray of pebbles were kicked up near their face.
  • Clothes Shopping with Sensory Processing Disorder is difficult in part because I eliminate at least half of the available choices without even trying them. Lace, elastic, velvet, corduroy, wool, sequins, stiff fabric, and prominent seams are all out automatically. Certain textures and designs create constant aversive sensory input, like if your clothing were made of sandpaper.
  • Bunched-up and constrictive clothing. Everything has to be arranged perfectly, especially my shirt sleeves inside my coat sleeves. If not, it creates uneven contact with my skin and I am hopelessly distracted.

I’ve found that my experience of unpleasant tactile stimuli is terrible not only because the feeling itself is bad, but because it lingers.

The paper towels, for instance, leave something like an echo of the sensation. I keep feeling it as if it were still happening, with decreasing intensity over time. I tend to deal with this by frantically looking for something hard and smooth to touch to replace the tactile horrors of improperly torn paper towels.

Body Awareness with Sensory Processing Disorder

A moving, illuminated ferris wheel at night
Photo by Shahzin Shajid on Unsplash

Sensory Processing Disorder can make it difficult to discern where your body is in space, a sense called “proprioception.” Together with the vestibular sense, these systems help us balance, understand where our limbs are, and generally keep track of which way is up.

Examples

  • Vertigo and dizziness when I don’t sleep enough and when I’ve been in a car for a long time.
  • Rollercoasters? I’ve been on one. Absolutely never again.
  • Using touch controls on wireless earbuds. A challenge for me because I can’t touch the earbud without looking in a mirror. I don’t always know where my arms are in relation to my ears.
  • I’m highly prone to motion sickness.
  • Dental exam chairs. I feel genuinely confused about the angle at which I’m reclined. For years, I really thought that they were putting me slightly more than 90 degrees back and that I was actually tilted upsidedown. Knowing the earthshattering truth doesn’t change how it feels, but at least I know now that my body is lying to me.
  • Slightly fast elevators are exhilarating.
  • Motion sickness. Did I say that already? So much motion sickness.

Dyspraxia in Sensory Processing Disorder

A wooden chess board with assorted wooden chess pieces mid-game
Photo by Jani Kaasinen on Unsplash

Praxis is the process of planning and carrying out sequences of movements. This can be as simple as the automatic steps you take to get dressed, or it can be as complex as planning long-term goals. Impaired praxis is referred to as “dyspraxia.” Dyspraxia falls under the sensory-based motor disorder subtype of Sensory Processing Disorder.

Not everyone with Sensory Processing Disorder also has dyspraxia. I have symptoms of it that only tend to become a problem when I’m tired or overstimulated. It’s like something short-circuits in my brain and I suddenly can no longer comprehend how to do things.

Examples

  • “Simple” household tasks. I recently had two forks and two knives jumbled in one hand while setting the table, and all I had to do was divide them among two plates. For a solid 5 seconds, I could not figure out what I was supposed to do first. I had to walk myself through it step by step. I’m a little embarrassed to admit that, but it illustrates how dyspraxia can affect functioning at every level.
  • Making decisions. When I’m tired or overstimulated, my decision-making abilities tank. Just choosing what to eat at a loud restaurant can be difficult. When my brain is trying to cope with the sensory information that’s flooding in, there’s not much bandwidth left to handle decisions. It feels like I’m trying to juggle several raw eggs while comparing the 25+ menu items.
  • Copying movements. I learn concepts best through visual means, but translating actions I see someone doing, like in an exercise video, into coherent directions for my own body doesn’t come naturally to me.
  • Driving. I’ve improved immensely, but it took me a long time to get comfortable with it.
  • Getting on escalators. Planning the movement and timing it correctly is not an automatic task for me.

Allowing Myself Patience with SPD

A blue sign with yellow block letters reading "Be kind. Unwind."
Photo by Tim Mossholder on Unsplash

Over the years (and for multiple reasons), I’ve become an expert at hiding my emotions and powering through. I don’t want to inconvenience anyone and I don’t want to stand out. I can do anything that someone without SPD can do. But it takes a toll, and sometimes, it’s not worth it. Learning to listen to myself is still a work in progress, but it’s a valuable goal.

On the plus side, I don’t need to pay for horror movie tickets or haunted houses. I get my thrills by flushing toilets and riding elevators.

I hope that these examples of Sensory Processing Disorder are helpful. They are only my own experience, and they don’t encompass every SPD symptom. For more information specifically about Sensory Processing Disorder in adults, I suggest checking out the resources below.


Sensory Processing Disorder Symptoms Checklist (scroll down for the adult checklist)

Find SPD Treatment (be sure to check “works with adults” on the specialty menu)

Sensory Blogs I Follow:

http://comingtosenses.blogspot.com/

https://eatingoffplastic.com/

https://sensorycoach.org/blog/