all posts, community, mental health, miscellaneous, nature/the environment

the night school (part 1)

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I like finding free things to do online (21 days of yoga, weekly journal prompts, etc). I don’t always carry through with many of them, but I enjoy the challenge and the game of setting up something to do, and usually am drawn towards things that involved a lot of self reflection.

This particular project is called The Night School by Maia Toll. I am doing the “part-time” option, which means I will be focusing on the weekly writing prompts (because I don’t have the time or attention span to watch the discussion and ritual videos… I’m still not super into watching videos that require intense focus). But even so, just doing the weekly prompts includes readings from her book (see below) and some general context and discussion points. I look forward to seeing what comes of doing it for the “semester”.

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This week’s assignment was: What in the world feels alive to you and what feels lifeless? Why? Examine your preconceptions.

What feels alive to me? I think I define aliveness too literally, but the email also goes into detail about the energies of things which I find easier to relate to. When I was growing up in Maryland we lived near a small woods. The woods were cool because you couldn’t really get lost in them (it was fairly easy to run out into some neighborhood), but if you knew your way, you could walk through the woods to get all the way to the C&O canal without having to pass really anyone’s homes. I often went into these woods when I was annoyed or upset, or just when I wanted to bike/run through, and if it was getting later in the day and darkness started creeping in (as it always did in the woods before the neighbors since there were so many trees) I remember at some point I started talking to the woods asking for safe passage. I specifically would say the same phrase every time, in French, because I thought the language was older and thus more likely that the trees would know it. Now it’s also interesting because I never had the feeling that the woods were hostile or required me to ask for safe passage, but I always felt it deserved the respect of the question anyway, and that more likely the woods would protect me from something else. In other way, I never had anything bad or shady happen to me in the woods and I continue to visit it when I visit my parents.

Now living in the city where I do I have become much more anxious than I used to be. Part of it was working through my own neuroses of being a stay-at-home mom in a culture where that is very unusual (I am also a young mom in this particular city culture). But even as I work through that hurdle, I realize the city itself makes me anxious. It has such haphazard energy all the time. It is alway noisy during the day (July and September seem to be when all the road construction happens), but it’s also a tiny city that has narrow streets and crazy road patterns, and yet the same 1/4 mile strip of street will be shared with 3 separate road construction projects, 50+ cyclists who have to weave into car traffic to pass one another or to turn, pedestrians that no one can see due to parked cars, standing aside cross walks that have varying degrees of visibility (from electronically lit up to make shift single cones denoting the spot on the sidewalk where they should start to cross). The energy is impatient. People are constantly walking around, no smiles to spare (I often try to say hello to humans on principle and get a range of results). Though the speed isn’t always fast, the tempo varies abruptly as though the very act of having to engage with one another is a burden. And the chug of cars is never-ending. We have driven at all times and find that 3am to 8am is a pleasant time to drive on a weekend in the city. On a weekday, it’s more like 3am to 7am. The weather can be obnoxious, from sun beating down at all angles (it’s literally always directly in our faces when we drive in any direction in the morning) and the winds pick up strong enough to blow away our baby on account of the various wind tunnels created by lots of buildings and few trees. It feels chaotic and it often makes me agitated to encounter it. It took me a long time to realize that this pulse of energy existed and how it impacted me but over time it has become more clear.

Now that is not to say there aren’t pockets that are more peaceful. I keep finding some but the problem is they are hard to get too or fleeting in nature. For example, I jogged through the tree-part of the city to get to an open house for a toddler music class, and minus the fear of being late, the whole adventure was quite relaxing. It had the iconic early fall feel and the class was very cute. That kind of energy emitted a peace that I crave often, and as such, I’ll definitely be taking Fi back, but always by foot if possible.

Examining my preconceptions… well in a nutshell it would seem to follow the standard assumption of city = bad energy, and woods = good energy. But it could be argued that the reason I enjoyed my parents’ woods was because it was near enough to civilization that I never had to feel lost or in real danger. And it could be argued that there are cities that can exude a good time of peaceful energy, particularly ones that are not so jammed with traffic, have more explicit community, and dedicate more time to their green spaces equally across their land. And I know I personally wouldn’t enjoy living in a large woods all alone. I like people- or well, I like community. I think both extremes: alone in a large wood and emotionally alone in a dense city have the same energy to me, fearful. There is something I find primally terrifying about being alone. And not in a “I’ll have to do things for myself kind of way” but in a “no one will have your back if something goes wrong” kind of way. So resonant energies that feel good to me have to leak some kind of energy that feels communal. A crowded Boston T train doesn’t feel communal because everyone is looking out for themselves, usually annoyed to be on the train, and avoiding eye contact with one another, pretending they are alone while sandwiched like sardines. The idyllic memoirs of people traveling in European trains not so long ago had more of the communal feel, with older adults looking out for young children traveling alone, with space on trains to sit and eat, with an impetus to reach out and connect to your neighbor if for no other reason that to pass the time (and that was not unique to Europe, I just happened to have read a French memoir more recently).

Anyway, I’ll stop there for now. My brain has travelled off on to other things.

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all posts, community, mortality

let’s talk about death

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I seem to be drawn to fields of study that general society deems taboo. From talking about vaginas and all things women’s health, to my desire to talk about death, I really seem to have no boundaries. And so, with that, let’s talk about death.

I recently came across the profession of death doulas, and if I have a calling, I think it’s to become a death doula one day. More on that in a bit.

A doula I believe traditionally is defined as a woman who serves, and is used to denote women who work with other women, specifically in a birth and postpartum context. Both birth and postpartum doulas work as support people for pregnant women/moms, helping them to navigate various systems and life changes. Historically, communities were stronger and so the need for doulas was not so defined (women generally were supported by other women of varying ages, from friends to skilled midwives, and this support could start during the pregnancy and continue through childrearing years). But as we’ve become more individualized and modernized, this communal support has seen rapid decline, and so the doula profession developed to help remedy the lapse of the support.

So then, death doulas? Well, another consequence of the rapid modernization and aggressive individualism has been a shift away from dealing with death. We don’t tend to our deceased personally, we often have family members in homes that we don’t visit, we see more and more people dying in hospitals alone, or dying after enduring unending painful medical attempts to save/prolong their lives. More and more people are starting to feel that the way we treat the dying, and the lack of support around the times of dying are wrong, and it was from this belief that the profession of a death doula was formed.

The first formalized death doula I believe was Henry Fersko-Weiss. Inspired by the birth doula model, and disappointed by his own experience with his father’s and many of his patients’ deaths, Ferkso-Weiss wanted to create a profession that would allow for people to die better.

I know this is a weird and uncomfortable thing to get around. How on earth does one die better? Dying is miserable! It’s the end of life, etc. It’s hard to wrap one’s head around it, but that doesn’t make it any less important. A consequence of our culture’s death aversion has been increased fear. I distinctly remember my own personal existential crisis around age 7 or so when I confessed to my best friend that I was terrified about dying and becoming nothing. She replied back that this is why many people turn to religion, because it gives us something to believe in (very wise words for a 7-year old). This led me to years of trying to decide whether I believed in something or not (jury’s still out) and if not, how did I make sure I had a meaningful life until my time was over. The culmination of years following show a web of confused choices as I tried (and continue to try) to figure out what is important to me. As a result, I personally come across as erratic and fickle because I seem to change my mind instantaneously when in actuality I am constantly weighing my choices via long term projections, and thus constantly tweaking my day to day behaviors.

Now many people think that thinking and talking about death will get you depressed and worried. I believe the results of the death doula profession are seeing the opposite. Many people find that understanding that we are mortal and working towards accepting that allow them to appreciate life more. And people draw to being death doulas seem to be extreme lovers of life. My personal role model is Alua Arthur. She has an amazing video called I Plan People’s Death For A Living, which so distinctly highlights why she does what she does, and how it’s not as morbid as you think.

To fill the time between now and when I start actively studying to become a death doula (so after the baby (babies?) is (are?) in high school most likely), I have begun the process of reading all there is to read on dying, death, and how we as humans think about it, and how we process and deal with our/our loved ones’ mortality. It’s a fascinating field. And yes, it definitely can provoke the waterworks, but that’s just part of being human.

It’s also interesting because having the skin condition/autoimmune issues I do has made me much more aware of my mortality. If everyone is going on about how your 20s are your magic years, your skin is still great and you are super healthy, yatta yatta, than I already identify as someone who is past her prime. And I don’t feel negatively about this, but I do believe it influences the way I see the world and makes me think about the future in a more concrete fashion than many of my peers. Like when I said I wanted kids before 30, I realized I was 26, that it takes 10 months (ish) to create a baby, and so if I want to be done having kids by 30, it was time to start (and luckily my partner felt the same way).

I’ll end there for now, but this will probably be a running series of posts because it helps me get things out of my head if I write them down.

all posts, eczema

why does my skin getting wet itch so badly?

woman floating on water
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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

I’ve been reflecting on the various triggers to my eczema during this neverending but constantly changing topical steroid withdrawal and at 2am this morning I came to a realization. My skin tends to itch like crazy when I’m exposed to something wet in short bursts. This includes actions  like washing my hands, dipping my feet in a tub to test the temperature, applying lotions to dry skin, etc.

This realization made me backtrack and first want to know what is the stimuli the body responds to when it’s wetted. We have receptors for temperature (thermoreceptors) and chemicals (chemoreceptors), and even some for painful exposure broadly (nociceptors). We also have cutaneous receptors that can detect pressure, touch, stretch, and vibrations, but still none of those seemed intuitive for how wetness would be recognized. Obviously it’s got a temperature component but that wouldn’t work alone. I did a quick google search and came across this article, which explained that wetness is registered a mix of cold temperature, pressure, and texture reception in tandem with learned experiences to create what was called “perceptual illusion”. Note, I have cited a secondary source above, not the primary study. The study itself I couldn’t access fully, but it is here.

I thought about the information I read and concluded that it didn’t help to explain why my eczema-afflicted skin reacts so aggressively to short duration bursts of wetness. Perhaps it has something to do with the over-sensitization nature of eczema. Maybe if the A-nerve afferents are just more reactive in general, inconsistent exposure (like multiple drops of water hitting my skin) would cause the A-nerve afferents to send tactile/temperature information repeatedly. Then as the over-sensitization makes me register many sensations as an itch, it would just create more itching. Maybe?

all posts, mental health

on acceptance and chronic illness

stainless steel spoon
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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂 This entry was written in April 2019.

It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.

But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).

With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.

The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.

This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I dont plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!

As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.

This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a neverending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.

And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.

This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.

The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.

The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.

All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.

all posts, miscellaneous

blue light filter

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

 

I am a romantic of old:

I dream with eyes open,

I remember life by specific scents and vivacious colors.

But straddling the line of before and after, of life pre and post infinite connection,

I find myself falling more towards the latter side, the untethered,

and further away from the screen-lite kind of life.

I have forgotten how to thrive in the recesses of my own mind,

with no eye to the audience,

pure expression, without the likes and follows.

And yet, I am not and have never been, by any means a purist.

Though I long for past eras, of strong communities, non-virtual,

I love (or am addicted to) the appeal of the always available.

There is always more to learn,

experiences to witness that I didn’t know of

and life to try.

Though, do I want to?

Is it that I now desire the domestic,

or that I long for stable roots from which to grow?

Is the constant creeping cloud of worry due to not knowing how to say “my experiences are enough”?

From wanting, when sharing occurs, for it to be from others via their own lips,

or some other slower, less show-y manner?

Can I not just miss out on what I don’t know,

the fear of regret assuaged by the realization that what makes for a good life,

is still yet the most subjective of all?

So perhaps if I just follow my ephemeral heart and gut,

they won’t lead me astray.

all posts, mental health

anxiety

grayscale photo of woman covering her mouth using her hands
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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

 

The anxiety has a name

It is change

It is decisions

It is mortality

It is priorities

It is choice

But what if we chose wrongly?

Will we know?

Will we feel it deep in our souls?

Anxiety is not just unknown

It’s the future

Not the abstract

But the knowledge that we will butterfly ourselves to this place

And it will be final

But with finality will we find happiness in our choices?

Or bitterness of regret?

How can we know until we do it?

all posts, parentings/things about baby and kids

the baby and the necklace

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

There are so many clichés to explain how fast babies seem to grow up. I don’t love them because they feel overly desirous for a past self of a child when the current version can be equally if not more exciting to witness, but I do understand where they are coming from.

It’s true that babies do change in frequent, inconsistent bursts. For example, my non-sleeping baby is becoming a multiple-a-day napping toddler. She also is becoming what I can only describe as delightfully aware and intuitive.

Today, I nostalgically decided to wear a necklace my husband got me at the Massachusetts Renaissance Faire. It in itself is full of memories of change: the MA Renn Faire was the first one I’d gone to in years, with a partner, as an adult, and in New England, so wearing it today was a happy fluke.

My baby was particularly intrigued by it, but unlike her behavior everyday  previous, this time she neither tugged the necklace around my neck too hard, nor tried to eat the pendant.

So I did what any curious mama might do, and started to unclasp it from around my neck. The baby watched with her big curious attentive eyes. Then I began to clasp it behind her neck while she faced me, and I got to witness a delightful smile break across her face as she (I am assuming) realized what this transaction was.

After the necklace was placed and the pendant lay somewhere between her sternum and her belly button, she happily looked down and gently took the pendant in her baby paws again and again. But yet at no point did she pull it or try to eat it. Instead she just continued to savor its presence, and repeatedly looked down on it in between breastfeeding.

Then later after forgetting it was on her, she was playing with other toys when she re-noticed it as it gently hit against her shirt while maneuvering through her world.

Now maybe this isn’t so crazy of a tale for an outsider, but this same baby picks bits of dust or crumbs off the floor and shoves them in her mouth. She has been known to pull my hair and then suddenly gives an aggressive tug to a few strands, and I’ll feel the sharp snap as hairs get pulled out.

So how is it that this same little being, who has maybe seen me wear a necklace once before over 3 months ago, could change her behavior so drastically in receiving a new object (of course it is forever hers now).

The magic of change, though frightening, never fails to delight me with this little one.