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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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:
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.
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
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.
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
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.
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
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.
“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
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.
I have found that my most vivid experiences with ketamine treatments for depression happen when I’m listening to classical music. At my appointment this week, I popped both earbuds into my ears and started listening to a classical playlist while the infusion pump started to whir. The piano in the first song was soothing, and I settled back, holding my phone in my left hand and a worry stone in my right.
Music During Ketamine Infusions for Depression
The next song was heavy on the cello, and while I love cello music, this song gave me a decidedly creepy feeling. It brought to mind lots of puffy, white items in creamy white rooms that made me feel suffocated. It reminded me of a funeral home. I thought about changing the song, but that would have required control over more muscles than just my fingers, so I just waited it out, circling my thumb around the stone in my right hand.
The Worry Stone and a Mild K-Hole
The worry stone has proven to be a useful addition to my IV ketamine treatments. Even though it’s just my thumb that I can feel, that one little point of contact helps anchor me to the real world when I start to dissolve into nothingness.
During my previous ketamine infusion, in which I did not have my stone, I had found myself unable to move. I was probably experiencing what people call a “K-hole.” At times, I was aware enough to know that I only had one earbud in and wanted to grab the other one from my lap. I just could not force my arm and hand to move toward it. I’d try for some undetermined amount of time before giving up and being whisked away from my body once again, only to repeat the whole thing a little while later.
It wasn’t scary so much as it was frustrating. There was something I wanted, and not only could I not do it myself, but I was incapable of communicating my request in any way. We lowered the dose a little for this infusion, and I think that combined with the itty bitty scrap of control I maintained through the worry stone made for a much more comfortable ketamine infusion.
Controlling My Thoughts During a Ketamine Infusion
When the next song came on, I decided that I did not like all of the white imagery I was seeing, so I changed it to a more tan color and was immediately more comfortable. I don’t think that I’ve ever been able to just decide to change something about my experience of IV ketamine, so this was an interesting development.
I’ve contemplated the connection that happens between my recent experiences and IV ketamine that occurs in the form of bizarre, distorted versions of real-life items or events. I often start to see things during a ketamine infusion that I remember having a passing thought about a couple hours earlier. For instance, the oceans of corn I witnessed after briefly thinking about movie theater popcorn before one of my early ketamine infusions.
I’ve been mostly unsuccessful in doing this on purpose by seeding my mind with ideas. I had thought that my brain simply has its own agenda, but if I can change details like color while the infusion is happening, maybe I could learn to guide myself more reliably over time.
The infusion pump next to me whirred and chugged away, and although sometimes it faded into the background, at other times, it was extremely loud and menacing. It started to sound like a deep growl, and I felt as though I were trapped in a small space with a sinister beast and a red glow all around me. This occurred for only a few seconds, as I quickly tried to ground myself using the worry stone in my right hand. I remember thinking to myself, “This isn’t real. You’re sitting upright. You can feel the stone in your hand. This isn’t real.”
Forcing myself back to the room felt like dragging myself up, up, up through a dark corridor to the surface. I turned up my music to drown out the sound of the pump and found myself floating into another feeling entirely.
What Am I?
At times during this ketamine infusion, I felt like I was a thin layer of ice spreading across a pane of glass. I watched the methodical movement of tiny ice crystals marching across the pane, like an army moving to claim new territory.
I watched it and I felt like I was it. It’s difficult to explain how disconnected I feel from my own body during a ketamine infusion. In fact, it’s difficult for me to fully comprehend after the fact, despite having experienced it many times. I still feel like myself, I’m just lacking a physical body. I’m free to move around as what feels like my pure essence, observing and sometimes participating in events that sound nonsensical to my rational mind. Although I seem not to have much control over what I see or become, it’s a somewhat pleasant experience to not feel constrained by my human identity.
I rebelliously opened my eyes once to see the room coated in a gently moving, gauzy film. The walls seemed to shift as the film moved, creating odd, geometric patterns over everything. The photo on the wall suddenly had an ornate frame that stood out to me as being different than the understated one that had existed before.
My mom sat in the corner, typing quietly on her laptop. I tried to focus my eyes on her, but ketamine messes with my depth perception and I couldn’t even manage to keep my gaze on her face without my eyes jumping around the room and then back again. Finding the effort of this to be tiring, I closed my eyes again.
As usual, I was underwater for a time, but I don’t remember any specifics. I don’t know if it was the ocean, a lake, a river, or a stream. All I remember is that it felt somewhat healing.
Going Home After IV Ketamine for Depression
I have vague memories of getting home from my ketamine appointment and walking Stella through the park. I must have hung up my laundry at some point. I definitely remember lamenting my poor timing before leaving them to sit in the washing machine during my ketamine infusion, but now they’re on the drying rack. I may also have filled up the dishwasher, but again – it’s a blur. Maybe I should save some truly unpleasant task for post-ketamine productivity time. That way, I wouldn’t have to remember actually doing it!
I napped from 5:30 to 7:00 PM, then ate dinner and promptly went back to bed. I woke up later on at 11:00 PM and had a snack before getting back into bed. My face felt strange – like there was something weighty resting on my cheekbone and the right side of my scalp.
My tremor was bad the next day, and I struggled for minutes on end just trying to clasp a necklace around my neck. I felt spacey for two days following my infusion, and time had an odd quality to it. I tend to sleep poorly for a few days after a ketamine treatment, but mostly because I have a burst of energy that leaves me wanting to accomplish things instead of going to bed. Forcing myself to get in bed before I’m really ready results in extreme restlessness – it’s difficult to stop moving and I have to constantly remind myself that there is no reason whatsoever why I should be tensing every muscle in my body. Besides, I spend so much time sleeping when I’m depressed that finding myself actually wanting to do things is a refreshing change.
My previous ketamine infusion felt more effective than recent ones felt. I didn’t start napping again until a few days before this infusion, I’ve been fairly motivated, and my general level of hopelessness hasn’t been too bad. Hopefully, this one will have the same effect on my depression.
When I have good days with depression, it feels like coming out of a long, dark winter to find that the Earth is still spinning. In all of its complexities, the rhythms of life kept going on around me. Maybe I feel lighter, I laugh more, or I once again find enjoyment in my interests. Then, because I tend towards perfectionism and outrageous expectations, I throw myself into working on various tasks that have gotten out of hand in my mental absence.
Frantic Feelings of “Wasted” Time
Take, for instance, laundry. I tend to do absolutely none of it when I’m struggling with depression, which leaves me wearing dirty clothes or reaching into the recesses of my closet for that neglected, ill-fitting shirt I should just get rid of. Then, a good day comes along. And I have to do ALL of the laundry. In ONE day. Don’t get me wrong – I do enjoy the sense of satisfaction when this happens. It’s nice to finally have the motivation to do something and be rewarded with the feeling of a job well done. But I can’t help but notice the faintly frantic sensation I find in the background.
From experience, I know that my depression is very stubborn. If it lets up for a day or two or even a few weeks, it could be back soon. I’m like a squirrel hiding nuts for winter, except I’m vacuuming my floor and doing all my laundry because my treatment-resistant depression could come back at any moment. It’s best to be prepared for whatever is ahead.
Being Mindful of the Good – Despite Depression
I’m always working on noticing when things don’t suck. When a good day with depression comes along, it’s nice to get things done, yes. But it’s also nice to just appreciate the little gems of each day. Dappled light on November’s yellow leaves, watching Stella roll over for belly rubs from the kids down the street, the aroma of coffee brewing in the early hours of the morning – these small moments that slip by me when I’m depressed are important because they demonstrate that there is good in the world to be appreciated.
About a month ago, I started sitting outside in the mornings with a hummingbird ring feeder. I’d just sit very still, sipping my coffee and listening to the hummingbirds zip around in the neighborhood. One day, a brave little bird came by to check out the nectar in my fake flower ring. It hovered nearby for a second before moving in and landing its tiny feet on the edge of the flower. I could feel the gusts of wind from its wings on the back of my hand. It stayed for about 30 seconds, drinking the nectar and alternately taking off and landing again before moving off into the early-morning air. It was legitimately one of the coolest things that’s ever happened in my vicinity.
The hummingbirds have migrated south by now, but that experience has stayed with me and reminded me of the value of being still. Depressed or not, taking time to observe the world around me almost always gives me a positive feeling. It’s good to stop and smell the roses, as they say. Or maybe they should say, “It’s good to stop and let a tiny bird drink sugar water out of a gaudy piece of jewelry on your finger.”
Depression Recovery isn’t Perfect
Instead of preparing every item of clothing I own for the possible approaching depression, I’d like to store away moments of gratitude. I’m trying to let go of the fear that my good days with depression will inevitably end. I’ll have to loosen my grip on perfectionism – do a little of what needs to be done, but save space for noticing the delightful morsels of a good day. I know that I rarely remember them in the same light when I’m depressed, but perhaps having an entire hollow tree filled to the brim with pleasant moments will convince me that if past me thought they were worth storing away for winter, future me will, too.
I just watched a video that Kyle Kittleson of the MedCircle YouTube channel posted about IV ketamine. It’s called, “What It’s Like to Do Ketamine Treatment for Depression.” The video itself was great; I love that Kyle and his producer, Brigid, were so open about sharing their first ketamine treatment experiences with over 950,000 subscribers. I think their courage will have a big impact on the public’s understanding of why and how professionals administer ketamine for depression.
Online Discussions about Ketamine for Depression
Building awareness about ketamine in mental health treatment is good because we have a LONG way to go. Scrolling through the comments on Kyle’s ketamine infusion video was a rollercoaster of feelings. I have a ketamine infusion about every 4 weeks. I write about ketamine on my blog, and if someone were to ask me about it in public, I would happily talk about it. But I don’t tell just anyone that I use this treatment. I thought that I was being overly cautious, but frankly, after reading the comments I’m about to present to you, I’m not so sure. The judgment, condescension, flippant jokes, and dangerous misinformation were hard for me to read. I could imagine people reading those comments and losing hope in a potentially lifesaving treatment.
Ketamine has many uses as an anesthetic in human and veterinary medicine, and yes, as a recreational drug. It works as a powerful treatment for suicidal thoughts, depression, PTSD, and more. When I get a ketamine infusion, I’m using a legal treatment that helps my brain repair itself. Then, I go home and resume the rest of my regular mental health practices – therapy, medication, being outside, confronting painful issues – the whole nine yards.
I was so excited to see that many comments on the MedCircle video were positive, ranging from support to curiosity to stories of success with ketamine treatments for depression.
Other comments featured honest questions about addiction, cost, what it feels like, and how to get a referral.
And then there were THOSE comments. The ones that spread misinformation, jumped to conclusions, and judged others for their choices. The ones that doubted Kyle’s depression, saying, “He looks fine to me.” And the ones that declared ketamine a dangerous street drug and the people who use it for depression irresponsible high-chasers who can’t face their problems.
Let’s visit some of these comments. I’ve covered the names, but these are real comments from the comments section of Kyle’s ketamine infusion video I linked above. My intent is not to harass anyone with this post. I only want to point out misinformation and address some damaging attitudes about ketamine infusions.
To be clear: the way in which ketamine leads to improvements in mood is not simply through the perceptual experience of being high, although it’s possible that contributes to the benefits. The biochemical effects of ketamine in the brain, which happen as a consequence ofthe part where you’re high, can improve depression for weeks or months at a time.
The “not even once” comments:
Here, we get into just a few of the many, many comments about Kyle’s interest in experiencing a ketamine infusion again. In the brief interview immediately following his treatment, he emphatically expressed a sense of amazement and wonder. He said that he wanted to go back to “where [he] got it.” He wanted to be back “in that space.” Lots of comments labeled Kyle’s enthusiasm a “red flag” for addiction.
I have to wonder if those commenters are reading into Kyle’s words a little too much. I don’t know Kyle, so I can’t say whether he really is in danger of abusing ketamine, but he and Brigid were screened and each consulted their psychiatrists. It’s not something that anyone can go into lightly. I didn’t become a candidate for ketamine infusions until I had spoken to my psychiatric nurse practitioner, my therapist, and the doctor at my ketamine clinic. I explained my lengthy history with antidepressants, consistent psychotherapy, and my hospitalization for suicidal ideation. The doctor then spoke to my psych NP, I filled out a whole lot of forms and then had an initial appointment, in which I asked questions and he explained the process, its risks, and what to expect. I take a pregnancy test before every infusion, I’m still in therapy once a week, and I still take my oral medications. I couldn’t have just rocked up to the ketamine clinic and demanded they accept me as a patient. If I had indicated that I’d had a history of addiction, I’m sure the screening process would have been altered to address that.
Starting treatment with ketamine for depression was a fascinating experience for me, and it still is. I think it’s reasonable to expect a bit of wonder and excitement about the experience. Without knowing Kyle Kittleson personally, I don’t think anyone can determine whether those feelings indicate anything more than innocent fascination for him.
Exploring the way my mind works on ketamine is sometimes bizarre, sometimes soothing, and sometimes it gives me new ways to think about my depression. And yes, when I’m severely depressed, it’s nice to escape for 45 minutes in a dim room with a blanket and people I trust. That doesn’t mean I’m going to “chase down” ketamine and become addicted. I have absolutely no desire to seek out illegal sources of ketamine, nor would I know how.
While I’m glad that last commenter is content to live their life sober, I’m also glad that I have access to medically supervised ketamine infusions. I didn’t start ketamine infusions so that every day can be “sunshine and lollipops, cherries and all that stuff.” I did it so I could stay alive. So that I wouldn’t spend every waking moment in crushing depression anymore. Let’s not minimize the suffering that people with treatment-resistant depression endure.
A Drug By Any Other Name…Would Act the Same
There is a subset of comments that argue that using ketamine for depression is dangerous. Many of those comments revolve around the fact that it has other uses. The comments were full of references to each of ketamine’s names as a party drug. Those who disagree with ketamine treatments for depression seemed split between people who worry that patients will become addicted and people who look down on its history as a recreational drug.
Ketamine was developed in the 1970s and was quickly adopted as a battlefield anesthetic. It now has uses in elective and emergency surgery and chronic care settings. And yet, the applications for ketamine that everyone seems to focus on as reason not to use it are its uses in veterinary medicine:
Chemicals are everywhere. They are everything. The combinations and amounts of them are what make them behave differently in different environments. Ketamine is used to anesthetize animals, whether they have four legs or two. Things that can be deadly in large amounts can also be safe and therapeutic in small amounts.
The “say it with conviction and people will believe you” comments:
Good God, my teeth will fall out?! How horrifying and comically inaccurate. Barring accidental facial trauma due to intoxication, the only way you’ll lose teeth on ketamine is if a dentist is removing them while you’re anesthetized. Memory loss and anxiety can be associated with a ketamine high, but the half-life of ketamine is short and, as these researchers found, “ketamine-induced long-term cognitive deficits were confined almost exclusively to frequent users.” There is a big difference between using ketamine for legitimate medical purposes and abusing it.
I noticed that many of the comments expressing shock, derision, or confident predictions about Kyle’s ketamine infusion came from people who identified themselves as having experience with addiction in one way or another. I can see how learning that people are using ketamine to treat depression could be initially disturbing, especially if you have a background with addiction. What I don’t understand is that people left comments like this when the video very clearly states that there is research to back it up, people are carefully screened beforehand, and it’s administered by a licensed anesthesiologist. This isn’t the guy down the street telling vulnerable people he can cure their depression with some special k. This is science.
Understanding the Risks of Ketamine for Depression
The bottom line with many of these comments is that they argue against the use of ketamine treatment for depression because it has risks. Everything has risks. NOT using ketamine to treat depression has risks. When the alternative is death and you’ve tried the other options already, it’s ok to take a calculated risk. Ketamine may not be safe for people who are prone to addiction – it’s a very individualized decision that should be made with communication between every mental health professional who treats you.
It’s difficult to find statistics on ketamine-related deaths, possibly because there are so few that major trend-monitoring bodies don’t seem to report them in their own category. Instead, I can only guess that, if there are any deaths at all, they might be included under broad diagnosis codes that encompass several other substances. When researchers use death certificate data, they sometimes attribute the deaths to ketamine use when, confusingly, multiple drugs were involved or physical accidents were the direct cause of death. This strikes me as extremely misleading; actual ketamine overdoses are rare.
One review, stated to be the most comprehensive review of ketamine-related deaths published to date, found that there were 283 ketamine-related deaths in England and Wales between 1997 and 2020. The majority of these deaths involved the use of other drugs. Only 32 involved just ketamine, and only 23 were attributed strictly to the drug as opposed to accidents resulting from its use.
Mysteriously, the authors go on to say, “[This review] should dispel the myth that ketamine-related deaths are rare events.” On the contrary: while tragic, 23 deaths over the course of 23 years indicates that ketamine-only-related deaths are quite rare, as are ketamine-related deaths in general.
As for the StatPearls quote about risk stratification, there were 2,263 opiate-related deaths in England and Wales in 2020 alone. In 2019, there were 49,862 fatal opiate overdoses in the US. I can’t find a single mention of ketamine-related deaths in 2019 from US statistics providers, either because the few cases are hidden among various ICD codes or because there are zero. (I have also heard the latter from experienced professionals who may have access to data that I don’t.) Regardless, the fact is that ketamine is implicated in far, far fewer deaths than opiates are. Its use in surgery can reduce postoperative opioid consumption and, as previously mentioned, it can be a valuable tool for treating addiction.
Ketamine in medical contexts is highly controlled, constantly monitored, and the patient should always be active in therapy while undergoing ketamine treatments for depression. No, this isn’t foolproof, and not every clinic provides adequate support for their patients. On the whole, though, ketamine is very safe. I hope that as ketamine becomes more widely accepted for this use, our understanding of the entire picture will improve. Discouraging all people from getting a lifesaving treatment because “drugs are bad” and, as some of these commenters want you to think, risks inevitably become reality, is a dangerous attitude to take when it comes to treating mental illness.
The “stop avoiding your problems by getting high” comments
This comment is like saying, “They have the ability to help people without TMS. It’s just zapping magnets on your head.” It dismisses a complex treatment without considering the actual mechanism by which it works.
I’ll speak for myself when I say that all of these commenters seem to think that by being in therapy once a week for several years straight, revealing extremely painful, personal details about myself, digging into my thought patterns and history and beliefs, spending time in a psychiatric hospital, patiently titrating up and down on numerous medications, and working every day to improve my treatment-resistant depression through behavioral change, I’m simply avoiding my problems now by getting high on ketamine.
It’s also important to note that some of these types of comments are problematic in more than one way. People getting ketamine treatment for depression shouldn’t be shamed, and neither should people suffering from addiction. The stigma of having ketamine treatments relies in part on the stigma of drug abuse and addiction, and ultimately, I think it creates more division and fewer solutions.
A reputable clinic will not allow you to start ketamine infusions for depression unless you’ve demonstrated a clear need for it. It’s a tool like any other. It does help people “get to the root of it” and ketamine patients often use their experience to change their mindsets and heal from trauma.
I agree with the overarching message of this comment. It is hard work to treat depression, and it does take more than one strategy. However, I dislike the implication that people who turn to ketamine for depression are trying to avoid doing that work. Ketamine infusions should not be used in isolation. In my experience, it’s less like a band aid on a cyst and more like a life raft on the ocean. I still have to deal with the waves, but at least I’m floating.
(Band-Aid on a Cyst is going to be my new punk rock band name. I called it first.)
Ketamine for Depression Saves Lives
Ultimately, I’m disappointed but not surprised that so many people left ignorance, insensitivity, and moral judgments in the comments of the MedCircle ketamine video. Kyle took a chance and shared something he likely knew would be controversial. I don’t want to gloss over the fact that there were lots of comments supporting him and Brigid, as well as ones expressing excitement and interest in this emerging treatment. I loved seeing other people refuting misinformation and sharing their own stories of healing with ketamine for depression. There was a significant portion of the comments section that was bursting with positivity.
And those were just a few. ❤
More Research is Always Needed
It’s absolutely true that more research is needed on the long-term effects of ketamine treatments for depression, chronic pain, and PTSD. Ketamine has been in use for over 50 years, but we still need to understand more about its effects in order to more accurately predict its efficacy in each patient and its risk of addiction when used for depression in this way. I just wish that we could all respect each others’ mental healthcare decisions and keep an open mind about a promising treatment.
Shaming People Who are Desperate for Help is Counterproductive
The comments I’ve highlighted here may come from people who have experience with addiction and a strong bias against the use of ketamine. They have a right to their opinions, and I hear their concern. Ketamine is a schedule-III drug that should continue to be handled carefully in medical settings. When people come to a judgment about something without being informed and then leave comments intended to divide through fearmongering, insulting assumptions, and straight-up incorrect information, it moves all of us back in the fight against mental illness stigma.
I struggled immensely with the idea of treating my depression with ketamine. The unknowns of what it would feel like scared the pants off me and I was completely intimidated by the social implications of using a mind-altering substance for any reason. If I had read these comments when I was in the process of deciding to try ketamine infusions, I might have been ashamed enough to reconsider. That might have been catastrophic for me. I was recently past my hospitalization and subsequent partial hospitalization and I had been thinking about suicide every single day for years. Ketamine became my life raft, and I’m so thankful that I have the privilege to access it.
I recently took my first dose of Stelara, an injectable medication known as a “biologic” that treats, among other things, psoriasis. I’m so excited, I could pop.
What is Psoriasis?
Psoriasis is an extremely visible autoimmune condition which results in red, inflamed skin with scaly white flakes. My immune system is attacking my skin, causing the affected skin cells to turn over at a dramatically accelerated rate (7-10 times faster than healthy skin!) The severity of my psoriasis can be seen not only from the outside, but from the inside as well. My bloodwork shows evidence of systemic inflammation, which puts me at risk of developing other illnesses, including psoriatic arthritis.
Treatment with Topicals
For the past 15 years, I’ve tried to make topical creams, ointments, solutions, and for a while, UV light treatments, work for me. Using topical treatments properly requires that you follow a schedule of twice-a-day application for two weeks on, two weeks off in various combinations of steroids, vitamin D derivatives, and whatever other prescriptions you’ve been given. It takes me about 30-40 minutes each time.
After about a week, I see definite improvement, which used to be incredibly exciting but is now a pointless exercise in bitter disappointment. As soon as I begin the recommended two-week steroid-free period or simply run out of motivation, my skin begins the infuriating cycle all over again, often worse than the last time. I have never had a period of complete remission.
Treatment with Biologics
I reached a tipping point. I don’t know what exactly pushed me over the edge, but I know that I can’t take it anymore. My psoriasis is “severe,” meaning at least 50% of my body’s surface area is affected. Topical treatments aren’t enough, so my dermatologist and I decided that Stelara is the best option for me.
Biologics like Stelara function by suppressing the immune system, which puts you at risk of infections and certain cancers, but the newer biologics are more targeted than older ones. They attempt to treat only the parts of the immune pathways that are going wrong, which reduces the impact on other immune system functions.
Take That, Psoriasis
It makes me anxious to include photos of myself in this post, but I’m tired of trying to navigate the steps I take to hide my skin. Do I dare wear something with an open back? Should I stick to shirts that go up to my neck? Better avoid dark colors so the flakes aren’t obvious.
Psoriasis has been squashing the self-confidence out of me since I was 10 years old. Knowing that I’ll likely deal with psoriasis in one way or another for the rest of my life, I’ve worked to derive my confidence from who I am rather than how I look, but it’s an internal conflict that I’ve never completely solved. I desperately want Stelara to work for me. It’s exhausting to be, on some level, constantly self-conscious. I can’t fully imagine how much of a relief it would be to put that behind me, but I also don’t want to forever be embarrassed about these years of my life. I don’t want psoriasis to win.
This is what I look like, and if you look like this too, know that you don’t have to fit societal standards to be confident in the skin you have.
Living with Psoriasis and Self-Criticism
[In this post, I describe my feelings about life with severe psoriasis. I do not want readers who have skin conditions or any physical differences to be hurt by my self-judgments and insecurities. My words are about my experience only.]
It’s taken me so long to come around to the idea of taking a biologic because I blamed myself for not being more consistent with topical treatments. I thought that if I could just be more diligent, my psoriasis wouldn’t be so bad.
It was like boiling a frog; maybe I could have kept it at bay in the beginning, but it just got worse and worse. Eventually, I was so accustomed to it and so convinced that its severity was my fault that I chose to stay in the scalding water rather than get a lift out on a ladle. I also do this with my mental health; I must not be trying hard enough. If I just keep at it, I won’t need to accept more help. If that sounds completely unreasonable, it is – but it’s hard to change thought patterns like that.
Bottle it Up (don’t, though)
I’m 25 now, and my psoriasis is so severe and I’m so disillusioned when it comes to making a dent with topicals that I only use them “as needed” (in my view of “need”). When just twisting at the waist splits the plaques down to raw, bleeding skin and I can’t stand the torture of having unreachable itches in my ear canals, my motivation is briefly renewed. When it inevitably worsens again and I can’t manage it, I’m hard on myself for letting it happen then and all the times that came before. So in order to deal with despair over what I came to see as a failure to fix myself, I became an expert at avoiding the emotions of it. If I let myself fall apart every time I thought about it, I’d never move. It’s far more comfortable to disconnect.
The reality of living every day in this burning, itching skin is too horrible to acknowledge all the time. Instead, I bottle it up until it explodes. I can go long stretches of time feeling like I genuinely don’t care – as long as I cover it with my curated wardrobe of acceptable garments and don’t have too much psoriasis on my face, I’m really quite good at pushing it out of my mind.
But eventually, it’s like I catch a glimpse of it from a stranger’s perspective and am knocked over by the pure shock of it. It hits me suddenly and I break down into tears and fury and grief over how it holds me back and the hopelessness that it could be forever. I’m suddenly overwhelmed by how disgusting and ugly I feel – judgements that I try to keep beneath the surface, but which sometimes bubble up painfully. Then, I gather myself up, shove it all back down, and tell myself that self-pity is pointless. I basically close the Faulty Logic Door on the Emotional Vault until the next time it explodes. Super healthy.
Prioritizing Experience over Appearance
Despite the harsh messages I send to myself about my appearance, I still want to move through the world unhindered by social stigma. Lately, I’ve been pushing myself to wear clothes that make me a tad anxious and, with the exception of swimming, I never let it stop me from participating in things. I’m always worried that people will be rude or hurtful, but that’s rare and stems from ignorance, not malice. Some people stare at me and I occasionally get well-meaning but unsolicited and questionable advice from strangers, but I’ve found that the vast majority of people don’t even bat an eye.
By virtue of being literally on the face I present to the world, facial psoriasis is particularly hard to deal with. Everyone sees it and has thoughts about it that I’m not privy to. My fears that those thoughts might be judgmental and mean are hard to set aside.
I decided a long time ago that wearing makeup to cover my psoriasis was not worth it. Besides the issues of time, money, and probable skin irritation of heavy-duty foundation and concealer, my desire to fit in and feel confident bumps up against my belief that it shouldn’t matter. It seems like a step too far for me, but for others, it makes a huge difference in their confidence, so, to each their own.
Mild topical steroids and other prescription creams do improve my facial psoriasis considerably, but only for as long as I’m using them, which is sparingly. The skin on your face is delicate, and the decade and a half that I’ve spent using topicals makes me reluctant to risk the side effects of overuse or – God forbid – getting them in my eyes. That’s tricky for me, because I have psoriasis on my eyelids.
On the left is how I wake up during a period of average/low inflammation. With very gentle soap, some careful flake removal, and unscented moisturizer, I can sometimes go from that to the righthand photo without using a prescription cream, which I save for really terrible days. I tend to have wonky, uneven eyelashes because, during bad flares, psoriasis spreads along my lash line and causes sections of eyelashes to fall out.
Interference and Feedback Between Psoriasis and Mental Health
Stress is a common trigger of psoriasis, which is hard to fix because having psoriasis is pretty stressful. As my mental health waxes and wanes, my psoriasis follows suit in an awful feedback loop. The stress of depression makes my psoriasis flare, and the hit to my self-esteem certainly doesn’t do good things for my depression.
My mental health definitely gets in my way when it comes to skincare. Even if I didn’t have depression, I probably wouldn’t be able to keep up with the treatment routine, but when depression makes getting out of bed and changing my clothes difficult, you can bet that I’m not spending an hour and 20 minutes per day applying goop to the skin I hate looking at.
Overwhelm and Support
Depression and psoriasis are both chronic and painful, and they both take a lot of work to manage. Metaphorically, the overwhelmingly hopeless experience of depression feels like trying to beat back a chronic rash that covers your whole body using nothing but a little tube of ointment. Each is a monumental effort that seems to never end. I’ve learned that tackling difficult, stigmatized issues gets a little easier if you don’t do it alone.
Lithium, which treats my depression and suicidal thoughts, has the unfortunate side effect of causing or worsening psoriasis. (Is that a cruel joke, or what?) I’m not sure how much of an impact it’s had, but I suspect it’s contributed somewhat to the progression of my psoriasis.
[Left: After a dedicated effort to clear my skin in time for a wedding in 2018. It was brief but wonderful. Right: A terrible flare in the cursed year that was 2020.]
Any time I spent bullying myself about my skin and my willpower was too long. This change is not a failure, but a success in finally allowing myself to accept help.
Stelara is a momentous step for me; I’ll admit it’s filled with a fair amount of bitterness about how many years I’ve spent suffering, but also acceptance, excitement, and hope.