I hate Martin Heidegger but the one quote of his that I allow myself is as follows: “there is no such thing as an equipment”. (from Being and Time).
It’s 21st century America. Cancer = consumerism. Time for some product reviews.
Soundcore Sleep A20 Earbuds
Beyond Carrie, actual treatment, and friends, I think these earbuds might be the most important element for my morale since September. Music has been my solace. I’ve been wearing out some ambient/electronic albums at night for falling asleep to. Since I usually have to fall asleep about 3 different times a night I switch it up but stick with the familiar, as it helps lull me to sleep. I may well burn all of these records out–I can’t listen to anything I regularly listened to when hospitalized in 2010–but it’s worth it for the comfort now. My advance apologies to Alessandro Cortini, Abul Mogard, and a few others.
As you may have heard, recorded music needs a delivery system (didn’t someone I know write a couple books about that?). The A20s are “sleep earbuds” which means they have longer battery life and are flat with my ears, which would matter if I could sleep on my side for any amount of time. They also function as earplugs. There are more expensive ones made by people who left Bose, but those come with a bullshit app and appear to still be in shitty kickstarter product mode. These actually work with just a couple small glitches that are easily fixed.* They also have a stupid app but I mostly ignore it and just run them in bluetooth mode. Sound quality is acceptable. The one from the Bose people might be better but it’s way more expensive and buggy.
* If one of the earbuds stops working, put them both back in the case, close it, forget the bluetooth device, and reconnect. Problem solved. Unless you put it in the case wrong and it didn’t charge. Then charge it.
Obviously you need a smartphone or a tablet to go with these, and I will say the iPhone and iPad I had with me at the hospital were also indispensable and made the experience a lot better than 2010. Also the free wi-fi and the New and Improved hospital beds that MGH bought a few years back. But back to the A20s….
They are also damn fine earplugs, which is really useful when you live at a noisy intersection (our landlord warned us that we would want earplugs to sleep before we rented the place), or are trying to sleep in a hospital.
Speaking of trying to sleep in a hospital:
Nite Hood
It’s a hood that goes over my face. It makes things dark. It’s soft. There’s one version now that’s both warm and cool but I also have an older one that’s a little thicker and warmer. Combined with the earplug function of the A20s, and regular doses of dilaudid, I slept like a log in the hospital. Nurses and Personal Care Assistants regularly had to shake me to wake me up. At least one nurse is buying one herself since they get alternated between day and night shifts and day sleeping is a challenge for her. As I said in an earlier post, people don’t usually go to the hospital to sleep, but my sleep was so bad before my second hospitalization that it was a revelation.
This thing is WAY better than sleep masks. Like night and day better. That’s my opinion, man. Canadian company.
Kölbs Bed Wedge Pillow (I am brand agnostic on this–it’s just a memory foam triangle, pick your preferred angle and size)
My lungs are borked. I cannot sleep lying flat. I wish someone told me about these things before I was hospitalized the second time. I might have gotten some sleep rather than slowly lost my mind. It did mean ditching my favourite pillow, because it raises my head up too much, but these things are comfortable and really do help. One night it wasn’t enough and I came out and slept on the recliner, which has an even sharper angle. But I prefer the bed for all sorts of reasons.
Drive DeVilbiss Oxygen Concentrator with optional attachment to refill portable canisters and more tubing than you can shake a stick at
Jesus fuck this thing is huge and loud. File under “disabled people have ambivalent relationships with their prostheses.” Do I like having a machine that makes oxygen and then sends it up my nose at home? Yes, my poor lungs need it! Do I like being tethered to a hulking, hissing, clicking monster by a(n often tangled) thin green filament connected to my head like a leash? Well, I can walk around the apartment so long as I don’t trip over it, so there’s that. But it has “devil” in its actual name. Despite its size and loudness, I will say the interface is very straightforward. It does what it says it does consistently and well as far as I can tell.
We just moved it from the living room to the second bedroom and it’s much quieter in the apartment now, but it probably means we can’t have guests staying here. Also I’ll have to turn it off to make any music in there, though then I’ll use the. . .
Easy Pulse Oxygen Regulator
Does what it says on the tin: delivers little pulses of oxygen as I breathe in. That makes a cylinder of oxygen last a lot longer than if I have it putting out oxygen continuously. It’s a skill to use these things and they make a little “puff” every time I breathe in, which I suppose people around me are going to have to get used to. Sort of sounds like a cat sneezing. (I miss my cats!) But I am getting used to using it, and I think a few more social and involving activities like music making will have me reasonably well bonded with it. Truth be told I am more confident with the continuous oxygen going up my nose. So also file this one under “prosthetic ambivalence.” It can’t put out as much oxygen as a continuous regulator, so I have to be extra careful on stairs or exerting myself but I’m getting there with it.
Cool grabby tools the occupational therapist gave me
Bending over is tough. But I’ve got this stick with pincers on the end to grab things, like popsicles out of the bottom freezer drawer. Awesome. They also gave me a stick with different kinds of hooks on each end. Good for picking up laundry off the floor.
Drive Shower Bench with optional chair back (not installed)
In the past, I very occasionally sat down to take a shower at home. It was a real treat. Now it’s more of a necessity. I can shower standing up but it costs too many spoons to be worthwhile (the OT was big on “energy conservation”). A bench makes it easy and fun, and I’ve managed to take fast and slow showers, as time and mood dictate. There’s an optional seat back you can attach, but the bench allows me to vary my position which is nice, so we left off the chair back. Of course, the ideal shower head for this setup has a detachable nozzle, so the water can go where I want it to, which the shower in our rental happens to have.
I’ve also separated showering and shaving: I now shave at the kitchen counter with a mirror and bowl of hot water, at a completely different time than when I shower–I used to shave right after showering. I think it’s yielding better shaves than standing in front of the bathroom mirror for all those year. Go figure. Maybe I no longer can say that I have the shaving skills of a 14-year-old (I started shaving again at age 40).
Emesis Bags (again, brand agnostic–mine is charmingly branded “Pukebag”)
We became acquainted with these in the hospital. They, um, receive emissions that may come out of the mouth. Of course you can buy them in bulk on Amazon (yes, I hate Jeff Bezos too but sometimes one must sacrifice one’s political commitments just to get by). Apparently they’re also used by taxi drivers. I’ve got them all over the apartment, ready to receive whatever emissions my lungs or esophagus cook up. The opening reminds me of the horned mouth of an acoustic phonograph. Or some kind of weird sea life. A mouth for my mouth. Too bad I don’t believe in psychoanalytic theory. Jacques Lacan would have a field day with that.
I am going to resist the urge to review my meds, technological they may well be. I may change my mind when I get scan results on Dec 17th. Ok, one quick review: I am one of the 5% of people who hallucinate if you give me enough IV dilaudid. That didn’t happen this time at the hospital, but it was nice and dreamy.