Likely Jan LukasA story, my friends. More particularly, an #ObjectLesson.
I'm old enough to have absolutely NO idea what this hand tool is intended to be.
1/x
When pressed against a sufficiently-pliant surface, the retractable tines make a pleasing hole pattern, the same sort of pattern one will see over many industrial or toy speakers, where the speaker cover is integrated into the body of the larger item, such as the speaker holes for emergency communications on an elevator control pad.
2/x
I bought the tool secondhand somewhere in #Edmonton, #Alberta sometime shortly after the beginning of the #covid19 #pandemic, as one of many quasi-random #tools and #materials I would end up testing and using to create my own masks that would be safe for me to wear for long periods and provide the best degree of homemade #PPE protection I could manage whilst also avoiding problems with #allergies (such as metal on nose-fittings).
3/x
#TrialAndError
#testing
#experimental
#experimentation
#safety
#health
#CovidIsNotOver
Since those days, and the present ability to obtain #allergy-safe (for me) #silicone #ElastomericRespirators, the tool has sat unused among many items from those early desperate days.
As locals will recall, 2020 was when #Edmonton experienced the beginning of the #pandemic.
2021 was our first-ever #HeatDome.
2022 and thereafter to the present has seen long stretches of #ExtremeHeat and the switch from #SummerSeason to #WildfireSeason, adding frequently horrendous #AirQuality to the sustained heat.
4/x
From social media posts and various discussions among those I know, these many changes have been challenging.
Yet I think I am not overstating it to say that for #disabled people like me, these events have been a relentless cascade of complications--ranging from minor to massive--in our already #complicated lives.
I am far from alone in that my disabilities or #medications or both make me very #HeatSensitive.
When we hit 24°C, I am (metaphorically) melting and not particularly physically or mentally functional until temperatures cool below that threshhold.
The heat alone is enough to make me feel as though I am utterly exhausted, even if I have somehow managed to get a decent sleep *despite* the heat -- the heat saps it all away, regardless. âšī¸
5/x
An intetesting peculiarity of living in #SocialHousing is that we are explicitly banned from having window-based #AC in our units.
While I live in #Alberta, my understanding is that this ban is found throughout social housing #leases in #Canada.
Granted, the writing style and language choices strongly suggest such leases were drafted in the early 1970s at the latest, and back then I would have easily agreed that #AirConditioning would not be necessary.
However, 50-some years on, the heat is routinely a bajillion (estimated đ) degrees higher and #disabled folks and others in social housing are BANNED* from installing what is literally life-saving equipment under the 'new normal' of our #FireSeason summers.
*TBC: portable AC units are not explicitly banned (not commercially-available yet when the leases were written??? đ¤) but these have limited range and are usually energy-inefficient compared to modern AC window units
6/x
In light of the above--a combination of increasing environmental stressors that negatively affect my #disability management and day-to-day functionality against a background of ongoing pandemic--it should come as no surprise that my #SocialHousing unit is presently the very opposite of tidy.
Annual stretches of multi-month #physical non-functionality from #ExtremeHeat (and also often terrible #AirQuality) make it tough to keep up with all but the most basic tasks.
And for many #disabled folks, our disablities, chronic #MedicalConditions, necessary #medications, and so forth may already have made "keeping up with the basics" pretty challenging in the best of times.
And these are NOT the best of times. Not by a long shot.
7/x
In my own Quest to Survive, my #kitchen has been the nerve-centre of designing/creating/building/modifying things to help me stay alive through the crisis of the moment, as well as as more obvious ongong crises such as extreme heat, terrible air quality, etc.
In some cases, #OffTheShelf technology to mitigate an issue exists, but (for example) both #poverty and #lease requirements prevent me from acquiring energy-efficient cooling technology.
Even if I pay 100% of the cost of buying and installing a #window #AirConditioner, it means a breach of lease and possible #eviction.
Given that I'm pretty sure I would not survive many days of being #unhoused (due to #MedicalConditions and #disability-management challenges, not due to any fellow unhoused neighbours), I have worked very hard to figure out other ways to mitigate heat in my unit.
8x
I've talked about some of this on Mastodon before, such as creating #coroplast and #blackout material #WindowBlocks to prevent the heat from our long 53°N summer days getting into my unit (circa 2021) or adding thermal window film to reduce heat even more (circa 2025) without simultaneously creating a dark and depressing #bunker-effect for the entire summer.
Doing all of this required various materials, time and of course, money. While all these (and other) mitigations were experiemented with and created/installed over several years, which spread out the up-front cost, the irony is not lost on me that these approaches have culmulatively cost as much as as least two in-window #AirConditoners would. đ
9x
Apologies for digressing somewhat into the weeds: the point is that all of this figuring-stuff-out on an #AISH (provincial #disability pension) that has not risen since 2016, is expensive, time- and (personal)energy-intensive AND are all genuinely monumental accomplishments given my disabilities and lack of functionality in extreme heat.
My #mitigations don't even necessarily make things comfortable, they just make it less-likely I'll die from preventable consquences of #ExtremeHeat.
And this point is important, because I HAVE been successful in not-dying (yay! đ), but the mitigations are NOT SUFFICIENT for me to live a 'normal life' (my normal, under my normal range of restrictions/challenges) during the #FireSeason and #HeatSeason.
IOW, not a lot of extras get done during these extended periods.
10x
The upshot is that, starting with my kitchen 'nerve-centre' and then spanning into other rooms over time, these various crises have resulted in what I call #strata.
The lowest strata is #DIY mask experiments and making. Above that is the first attempts at #HeatMitigation. Then there is #AirQuality mitigation, and then some blending of these in upper strata depending on access to materials or new approaches I can try without risking violating my #lease.
Except, of course, it turns out there is always a catch.
11/x
The catch is this: at some point, a contractor for #SocialHousing had been sent to fix something.
That person saw my strata and other unit chaos--again caused or at least *strongly* influenced by multi-years' worth of environmental issues that the landlord is NOT mitigating (notably: extreme heat and access to clear air for venting built-up heat)--and reported it to the landlord.
The landlord in turn requested that I consider contacting the Hoarding Disorder Foundation of Alberta to work at reducing the amount of stuff I have in my unit.
12/x
Now, the Hoarding Foundation of Alberta is, imnsho, great. đ
Prior to the beginning of the #covid19 #pandemic I had gone to their in-person support group and found some very useful strategies for dealing with what I recognised could become a significant problem. Back then, they weren't even a formal organisation yet and I'm pleased that they've come so far to provide much-needed expertise on this disorder.
Check them out here! đ
13/x
If the only thing you know about people with #HoardingDisorder is something from #RealityTV, I strongly encourage you to learn the actual reality.
I'm no expert on the #diagnostic side but my understanding of the condition and it's history in the relevant #medical #literature is that hoarding was once considered a manifestation(?) of #OCD, but over the years experts noted a key distinguishing factor for hoarding vs OCD in particular:
When people with OCD are engaging in a repetitive behaviour (eg: excessive handwashing) they feel terrible about it. They want desperately to stop *in the moment* but cannot do so.
People with hoarding disorder, OTOH, feel good, perhaps even fabulous, in the moment(s) of acquiring new things. The bad feeling only comes after and/or when trying to de-accumulate.
And a full-abstinence, AA-type approach cannot work, as people NEED to aquire things to survive: groceries don't buy themselves, after all! đ
14/x
And because of that key characteristic--acquiring things makes people who hoard feel good whilst people engaging in OCD behaviours feel horrible--#HoardingDisorder is no longer #classified as a type or manifestation(?) of #OCD in the DSM.
Hoarding Disorder is a separate, specific condition with specific #diagnostic #criteria in the more recent editon(s) of the #DSM.
15/x
For a little over a year now, I have worked with a #HoardingSpecialist. This is someone trained according to the #BestPractises of present medical knowledge regarding #HoardingDisorder and provides me hands-on support to reduce and remove items from my unit.
This has been extraordinarily helpful, with one caveat: From my POV, this specialist perspective is not necessarily one informed by the additional complications of #disability.
Some of the issues I face unique to my (or others with similar) disabilities are able to be mitigated by technologies or devices. Purpose-built--IF they exist--are often extraordinarily expensive due to the relvatively miniscule market needing that item.
Classic example: many gadgets people like to make fun of, perhaps uniquely-specific kitchen gadgets, are only availble cheaply because they CAN be sold as a novelty item to many, yet are critically important for a few.
16/x
So there are definitely moments of confusion amd/or explanation required as to why I genuinely NEED to retain this item or that item, because this is non-obvious to the hoarding specialist.
Family and friends usually know or can recognise why I have something or something is located in an odd place (as opposed to where one might expect considering the item's intended purpose), but even they sometimes might be scratching their heads over something.
Aside: I just realised that if I ever have the time, perhaps adding large labels like the classic #Batman #TV series did on their #batcave gadgets would be helpful to the many who aren't able to recognise a #repurposing. đĻ đ
17/x
#disability
#accessibility
#mitigation
#modification
#alteration
#repurposing
And of course there is a real risk that a person with #HoardingDisorder isn't going to be very open to getting rid of something that isn't needed now or ever.
I note that the fickle variations in my own disabilities means that I have learned the hard way to think long and carefully about getting rid of something I have used previously to mitigate an issue that appears to have resolved! All too often, a week after getting rid of such an item, the disability-mitigation need returns, agh! And can you find the equivalent again, whether new or secondhand? Double-agh (aka NO!). đđŦđĄ
18/x
#assessment
#decluttering
#retention
#removal
#disability
#mitigation
I also want to note how thankful I am for the assistance of friends and family for some of the more time-intensive decluttering and reorganising that has been done beyond what the hoarding specialist and I can reasonably accomplish in any given session.
Given literally ALL of the above in this long, meandering (but ultimately cogent, I promise!) story, it is a blessing beyond description that I can be laid flat-out from #disability issues and another person be able to make progress without my direct oversight.
There is still much to do, but the specialist and I have been making steady progress throughout our time together, and those more intensive periods of help with knowlegable family and friends has improved some things beyond my wildest hopes.
đ
19/x
#assistance
#support
#HoardingDisorder
#decluttering
#disability
#accessibility
A specific example: A family member came to visit and even extended their stay a few days specifically to make my kitchen #accessible, as in #functional, for me.
As mentioned, the kitchen has been my 'nerve-centre' for dealing with much of these past few years' cascade of #emergency issues that have been particularly hard on folks like me with no #HeatTolerance and also bonus #LungProblems during #ExtremeHeat and also #Wildfire events.
Much of its floorspace was filled with the strata of attending to and doing my best to mitigate these urgent problems, even those that relate to #lease restrictions and #SocialHousing not choosing to upgrade units to meet this new reality.
In many ways, this was not a big deal for me: I don't feel safe using the stove/oven (#balance and #tremour issues). My #arthritis doesn't handle preparing cold meat for microwave or toaster-oven cooking, so I eat frozen meals and graze from various pre-prepped options such as crackers.
20/x
My frozen options are limited, though. Many contain ingredients I'm outright #allergic to or my body responds poorly to. One line I used to eat frequently was discontinued on #Canada and that narrowed things down even more.
And the expense! As mentioned above, the #disability pension disabled people in #Alberta rely on has not been increased since 2016.
Not that this pension was ever particularly generous, but I've never felt truly food-insecure since grocery #inflation began ramping up so overtly over the past 5-6 years.
My family member observed (correctly) that making food can be much cheaper and i definitely healthier than the options I presently rely on. But they also know the physical challenges I face and the implications, so they assessed the kitchen not just for #access to various parts of it, but also to rearrange for usable #workflow.
21/x
Sam Levine@likelyjanlukas Can you eat eggs?
Yes and no. Eggs-as-eggs, even if thoroughly boiled/denatured, are a problem. Yet when mixed thoroughly with a dough such as cake or bread, then baked, seem fine.
Eggwhite glazing gives me hiccoughs yet angelfood cake/spongecakes are fine.
TL;DR: I don't buy eggs as I would have to be able to handle making something relatively complex (for my limits).
I'm open to ideas that avoid the complexity and reaction limits! â¤ī¸đ
@likelyjanlukas Unfortunately not, I recently learned about microwaved scrambled eggs that are actually good, but it sounds like that wouldn't work for you.
On the liquid in porridge thing though: if by porridge you mean oatmeal try oat milk for creaminess. It always cracks me up when I do it because it's like "would you like some oats with your oats", but it works as well as dairy does. I eat my oatmeal cold with some granola and sometimes plain flakes of various sorts mixed in as homemade cereal, but I eat it in absurd quantities, so I've done plenty of weird stuff over the years just because I always have large quantities of quick oats around (dried fruit does really well and reheats fine).
Yeah sometimes I've eaten scrambled eggs and it seems okay, other times not. It is probably the modt convoluted food intolerance/allergy I've got--I still haven't nailed down the key problem, lol!
The oat milk is a great idea -- I always just use extra water. Milk has made me ill as long as I remember. If there was no one around, I'd even "forget" to pour it on my cornflakes because it was so nasty.
Basically, I genuinely don't 'miss' not having it, but it is still fun to try similar, safe things sometimes! â¤ī¸đ