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

death as my guide

Death studies

I have been reading books on books about death. Death from the perspective of the dying, death from the vantage point of medical professions, death from philosophers, death from people who have lost someone. It’s weird to say, but I love death stuff. Not because I am morbid and have a weird fascination with the idea of being dead (frankly that scares the bejeezus out of me and sends my head into terrifying loops trying to conceptualize it), but because outside of being born, dying/being dead is the only thing I will share with all humans/living things on earth (except maybe tardigrades, and I’m still not convinced they aren’t aliens).

It’s a strange place to be in, being a student of death. I began by systemically reading the most respected books on the subject, am currently looking for a hospice place to volunteer at, and I begin my formal death doula study work in January. In other words, I have jumped down the rabbit hole and am going full speed into embracing the world of mortality.

My shift into this new paradigm of living probably has heavy roots from a topic I mentioned in a previous post. If one lives in a culture obsessed with youth and our early years (think of all the adages we use: “age before beauty”  “you are young, live a little”, etc) having a condition such as eczema/TSW/gene mutation that causes you to have “aged” and sensitive skin to the extent that it alters how you live day to day… eventually you are bound to reflect on the life you are living. The serendipity of ending such a reflection ending up on death’s doorstep is when you look around, you realize everyone will eventually join you. When someone loses a loved one, they are faced with their mortality. When someone grows up able-bodied and becomes disabled, they reflect anew on their mortality. When one grows up in a society that values/develops around intrinsic factors that deviate from one’s own, the forced recognition of not being/having the “in” qualities caused mortal reflections. In every scenario, at some point everyone will be faced with accepting their mortality, so when you do, you are just accepting what makes you innately human, knowing you will die, and the company it comes with is surprising sweet.

I have also been plagued with the urge to try and communicate what I learn from my deep dive into death, and struggle to decide what medium works best to do so. My issue is that I prefer the written hand, but how can I reach others to connect with when the written world is dominated by themed bloggers with deep followings, pay-for-ad bloggers, lifestyle bloggers, and other algorithm-based advantaged bloggers. I miss the early blogging days where it was unique enough that getting your words out what enough to provoke communal responses, before it required hashtags and search optimization. Or maybe I am simply not as compelling of a writer or communicator or thinker, and so my words as mostly unheeded from the larger populace. Either option has the same result. I am stuck learning so much but unable to communicate it with mostly anyone other than my lovely husband, who can patiently decipher my meaning even when my words are obscured by months of sleep deprivation.

I recently also contemplated podcasts, despite my obvious inability to (compelling) speak aloud. My logic was that I would improve in the former, and that most people don’t enjoy reading long form anymore, unless it is streamlined directly into their subset of interest. But who knows, maybe I will return to this idea in a few months or so. It could be fun.

Speaking of months…

Ours flew by and we are finally all moved into our new home. It’s a lovely little 3-bedroom we are renting that is shaped in such a way that our baby’s room doesn’t receive much noise from our upstairs TV room, despite us being able to hear her from said bedroom. As a result, we have been able to talk above a whisper and host friends/my parents after the baby goes to sleep, despite her habit towards light sleeping.

It’s good to be home. I missed this neighborhood, with its friendliness and quirky characters. I am excited to see our little one grow up in this town that is not a town (actually though. I googled it and it is apparently a census-designated place or an unincorporated area with no definitive boundaries). We also have vultures…? I mean, yes of course. I’m studying death so a bird of death must appear!

photo_2019-12-01 17.00.59

At the same time, the transition here hasn’t as smooth as I would hope. Having lived away for years now, I have developed a plethora of bad habits that I need to break (like feeling trapped in a city and thus emotionally eating to the point that I gained 20+ pounds in a year!).

I also need to learn to balance my time in a whole new way now that I have more freedom (including the stress reduction of not being able to get myself and my little one forest bathing/into nature). The flip side of this lovely return to a land with trees and fewer cars is that I have been so inundated in environments that always have a heavy amount of ambient light that I no longer know how to sleep well in the deeper darkness of my childhood town. And at night, every sound this house makes sets me on edge (but that’s the case with almost all new places).

In lieu of sleeping

So now I’ve constructed this post to clear my mind. I also re-read many of my older posts. Since getting into death as a subject of interest, I have been reflecting a lot on myself. I have, and continue to, expend so much energy trying to conform to fit in with models of how I have been trained to believe the world needs to work. Many of my posts reflect this as I oscillate back and forth from trying to get my entrepreneurial start to trying to conform to a cookie cutter career; both in an attempt to fit in with this world model I have internalized from my years on this earth. I’m not saying that reflecting on my mortality has rid me of this tendency, but more so that it has helped me highlight the neuroses of it, which in turn is letting me better chip away at the anxiety that comes from it. Though I am no longer to having the ultimate job/career smoothly going, I have gotten better at trying to figure out what my self-decided purpose is with the time I have on this earth.

all posts, community

eczema representation

Though eczema isn’t the most glamorous of conditions, there is a growing body of representation of people with eczema in various social mediums, which is amazing because the more people that talk about our lives with eczema, the more information, studies, and community are built around it. As I come across more examples, I’ll update this post with the caption NEW.

 

TV SHOWS/MOVIES/DOCUMENTARIES/THEATER

  • One of the most notable now is Peter Moffat’s HBO series, The Night Of, which features the character John Stone, who suffers from aggressive eczema on his feet. Throughout the show we see him try various techniques to manage his eczema including bleach baths, Chinese medicines, airing his feet out, slathering Crisco and wrapping his feet in plastic wrap, UV light, etc.

phzntkc1kw2qbwe(photo source here)

  • (NEW) There is also a theater production called ECZEMA! created by Maria Fusco that embodies eczema in a creative way through writing, plays, music (including a musical backtrack of the sounds of Fusco scratching). There’s an interesting article written about it here.
  • (NEW) Briana Banos, a former performer and aerialist has created a documentary called Preventable: Protecting Our Largest Organ, to educate the medical field all about the horror of life with topical steroid withdrawal, and why topical steroids shouldn’t be so freely prescribed.

 

BOOKS

There are also a handful of personal storytelling books about people’s own experiences with eczema, with the authors all having very diverse backgrounds. For example:

And we’re also seeing a growing movement of children’s books about eczema such as:

  • Camille’s Itchy Twitchy Eczema by Candis Butler
  • I Have Eczema by Jen Greatsinger
  • Emmy’s Eczema (Dinosaur Friends) by Jack Hughes

 

COMICS

These prove a lot harder to find (which is unfortunate because I love webcomics!) but here are the two I stumbled across by Ms. Yoshimi Numajiri, (found on Tommy’s Skin of Rose blog).

 

ECZEMA ENTREPRENEURS

You also see a lot of entrepreneurs, whether they are doing eczema coaching of some sort, or have created a specific product/ product line. A few include:

conqueror-balm-photo-24_1024x1024@2x.jpg(photo source here)

INSTAGRAM

Naturally instagram has become an amazing platform for expression. There you can find awesome people including most of the entrepreneurs mentioned above.:

 

YOUTUBERS

Of course with youtube we have vloggers too- some that focus all on eczema and others that talk about eczema and its effects around the other aspects of their lives.

  • Zainab Danjuma
  • Brookie Beauty
  • Josh Wright – a pianist and piano teacher that made a video talking about his experience with eczema and TSW and what he used/did to get through it. He also made a post about it here.
  • Dr. Nina Ellis-Hervey – she gives advice about her general body care routines, and this particular video shows how she manages her eczema. She also includes how to make a homemade body butter.

 

BLOGGERS

And of course, there are tons of blogs out there made by dedicated individuals who are spreading the word about what living with eczema is like:

 

MODELING

More and more people are also trying to spearhead showcasing diverse bodies, especially in modeling.

  • Missguided – though not eczema-specific, a new part of their #KeepOnBeingYou movement has models showing off their bodies regards of having “imperfect” skin with the #inyourownskin campaign.
  • (NEW) Dove DermaSeries – creating a movement to help women “make peace with dry skin”, Dove specifically selected to have models with all sorts of skin conditions to show better representation of skin conditions and subsequently to help women feel comfortable in their skins

 

So if you are out there feeling like you suffer from a condition that no one gets, or that isn’t really seen in the media, don’t feel alone! There are lots of us out here each expressing ourselves and living with this condition in our own ways, just waiting for you to find us. And many of us are open to people reaching out as well. 🙂