Seven Years Later - Out of Bed on My Own Free to Roam (illustrated)

"It's here!" The voice in the hallway said. And that voice belonged to Betsy. She's been my dedicated CNA since last December. And within seconds after making that impossible declaration, she came angling through the doorway with my wheelchair in tow.

"Yes, it's really happening!" … my brain tried convincing me.

She was smiling ear to ear, while I was merely in a state of shock. The company had called me earlier that morning, explaining their rep would be contacting me by phone, letting me know when she'd be arriving with the chair. Well, apparently, they left my power chair up front at the reception desk and then Betsy came to pick it up herself.

Without the company representative being present (the person who was supposed to explain the ins and outs and operation of the power chair - and also make subtle positioning adjustments for me) I didn't know what to do next.

I asked Betsy, and she simply ordered me to "get in the damn chair!"

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So that's what I did.

Then I proceeded to make adjustments, wanting to make the chair workable based upon its positioning. And that took a while. She helped me, and she made suggestions, but there was a fair amount of trial and error.

Initially I bumped into this, and crashed into that …in non-violent ways.

"Toodles!" Betsy offered, waving me away as I headed down the hallway at the slowest speed possible. There was neither wind in my hair, nor wind in my sails.

Within minutes, I was in the physical therapy room. Why? I had questions. First off, it was clear that the foot rest was too short. Or my legs were far too long. The seat belt was also too tight. Just slightly. Otherwise, everything else seemed to be fine and dandy. Oh, and the therapy staff was giddy with excitement for me.

Making it all the way to the front portion of the building (the reception area, the main entryway) was my first objective. And I did just that. Very slowly. It may have taken me 10 minutes to make my way there. But I did it. Even so, I wasn't quite ready to go outside yet. My ability to control the apparatus was of the utmost importance, and at that point, the chair was still getting away from me. Difficult to steer. Lots of tension on the controller. Tight muscles. Low levels of oxygen in my brain. So I wisely practiced. Indoors. Hoping to tame my new machine.

First, I made a beeline down the hallway towards the back of the building, near the laundry area. I made a sharp left. Very very slowly. So slowly, that I don't believe the turn was sharp anymore. Then I cruised back around and went to the cafeteria area. There, I worked my way around the tables, weaving in and out… even executing figure eights and other prominent shapes. Yes, I nearly crashed half a dozen times, but the damage would have been limited by my super slowness.

I went back and forth to my room several times (stopped often by well wishing staff members), before making a momentous decision. I still didn't know how to utilize the controller to its full extent. Nor did I understand all the buttons, but …

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(View from reception area) -

The double doors parted and I was free at last. Outdoors. The place where everybody else on the planet goes. All the normal people. Everyday people who exist in everyday ways.

At first it was - Wow!!!!


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And then… the surrealness hit hard. Reality felt wrong. Like, how did I get here? I mean, I looked around, and outside was no longer just outside, it was a million billion possible opportunities. I hadn't been out of my bed on my own since 2015.

No, I didn't break down emotionally, as I thought I might (that's what happened intermittently during the week leading up to this event) … mainly, I was too focused on not dying. Not crashing. Not injuring others. Not getting myself into a predicament. And really, my greatest fear was losing my newfound freedom. The privilege of being allowed to go outside on my own.

The early afternoon heat and humidity were stifling, but back and forth along the narrow sidewalk, with only one close call of note. A rogue palm frond nearly decapitated me. And yes, those palm fronds can be both sharp and jagged at the same time.

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Let's skip forward to …

Day Number 2


Goal: complete a lap around the entire building

I wanted to hit the road earlier (get in my chair), but no CNAs were available to assist me until after 8:00 a.m. - Then breakfast arrived late (for the others) - so my shower didn't take place until 10:00 a.m., but by 11:00 a.m. I was up and rolling. Of course, so too was the desert sun, blaring and glaring all over the place. So by the time I made it through the automatic double doors the temperature was already over 100° (with the heat index pushing past 110°). And yes, that kind of heat is difficult. But now, having my power chair, I can go inside and outside as I choose to do so (to cool off).

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(Here, I'm on the east side of the building looking north. The beautiful tree you see used to be outside my window (when I was briefly in room 227, the room where I contracted covid-19, the illness that took my former roommate's life).

Exploration

During my first attempt to circumnavigate the building, I only made it 1/4 of the way around. I stopped under a shade tree (and perhaps wisely) decided to turn back. But this time, I was hell bent to trek across … The Deadly Desert Terrain?

Deadly?

Perhaps not, but the evening prior, staff members were showing me pictures of two rather large javelinas roaming about. If you didn't already know, javelinas can be rather mean and unruly, weighing in at around 50 lbs, give or take a dozen either way.

Additional background: Javelinas can inflict serious or even fatal wounds on pets and humans. The animals are considered big-game species and cannot be killed (no, they aren't immortal!), injured or trapped unless certain provisions of Arizona's hunting regulations have been met…

Seeing as my chair weighs 388 lbs, I'm not too concerned. Rattlesnakes? Nope, I fear those. But they are rather easy to avoid if you stay away from their typical hiding places.

Soooo----

Robust cumulus towers were popping up all along the northern periphery. And that's quite unusual, so early in the day. And better yet, these developing storms were no more than 15 miles away. Not surprisingly, I took numerous pics.

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Anyway, I knew right then and there storms were in the offing. Likely severe. Likely with torrential rains as well. And probably earlier in the afternoon than usual. The winds were already strong out of the southeast, and with the dew point around 70°, things were going to get out and out exciting.

I went back inside and applied sunscreen, while also donning my thin brown t-shirt and blue baseball cap. I truly needed the additional protection. Yes, suffering from heat stroke on my initial voyage would have been the worst possible outcome, but I didn't want sunburn on my agenda either.

After making my way back up to the front of the building, I shared my travel plan with the receptionist on duty… in case I didn't come back. Got lost. Got stuck. Whatever.

Interruption!

Because the Internet connection sucks here, I am over my mobile phone data, so whenever I do voice-to-text it's charging me (former wife) for each word. Or maybe the paragraph. So at this point I will simply post pictures with brief descriptions. Yes, this is maddening. Even my text messages push me further past the limit. I spoke with maintenance, regarding their internet server, but they claim everything is on the up and up. Sooo….

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(Back end of the property - not typically green, as we've had an impressive 3.33 inches of rain in the past three weeks)


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(Where I sit when I chat with my former roommate, Dan - who happens to be greatly improved)


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(It's monsoon season, so we get plenty of this!)


I've had many adventures in the past six days, far too many to mention. But again, my internet connection is faulty and unfortunately, costs somebody else money. Once the problem is resolved, I'll share additional antidotes and such. And I hope each of you is doing well. Please ask any questions you like. If I can't answer them, I will answer them! If the internet works properly. :)

Take care,
Howard

Comments

Thanks everybody - I can't even begin to explain how wonderful it is being able to get out of bed by myself in the morning and start my day. It takes some doing, but I am developing a ritual, or a pattern, or something akin to that.

@Jessie 107

I'm not upright at a 90° angle, but probably closer to 55° (with my head tilted forward, supported by a pillow). So, reclined, but not as much as I was in the manual wheelchair, or the geriatric chair (about 40 to 45°). And yes, my legs are fully extended outward.

I still can't believe this is happening (or has happened). I almost feel as though I can move forward with my life… well, besides the physical limitations (severe P.E.M.) and overall lagging energy envelope, and not receiving disability pay, etc.

But right now, I am flying high. I am generally positive minded, but I don't even know how to explain what the world feels like to me right now. Plus, everyone here is beyond thrilled for me. And I can't even think about that, or I totally lose it. Emotionally. All over the place.

Hang in there :)


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Beyond excited for you friend!

Great pics!:)

Questions: How long can you go out without battery re-charge?

Is there a meter/gauge of some kind that tells you how much longer you can ride? Just wondering how far you can go and do you have any limits as far as the nursing home is concerned?
 
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Howdo, Buckaroo!......Well, we're impressed in the Lone Star state. I like your cloud photos, but would greatly appreciate seeing one of you, Howard in his bandana, but not a rifle, please!

My sister never mastered her power chair, but then she weighed all of 60 lbs. with no training in the use of it, either. So there it sits rusting away in their garage. Imagine giving a power chair to someone living in a very small house? Her husband returned to a new floor plan each day....not always welcome.

I'm especially glad to hear that you're having better luck with yours....go slow is the best motto, and you'll soon be in the Wheelchair Olympics. That's quite a gift that the great state of AZ gave you....and I'm glad you're enjoying it. Are you responsible for our very pleasant 79 degrees at ll:00 a.m.? The clouds that were overhead just yesterday in AZ?. Feels like 30, but I'm happy, I have a blanket. Yours, Lenora
 
Beyond excited for you friend!

Great pics!:)

Questions: How long can you go out without battery re-charge?

Is there a meter/gauge of some kind that tells you how much longer you can ride? Just wondering how far you can go and do you have any limits as far as the nursing home is concerned?
Thanks for asking - and I hope you are well :)

My power chair runs at least three days on one charge. So far, I've only charged it twice overnight (today is Day 7 on the chair).

The specs indicate I am capable of going 13 miles on one charge, but clearly I haven't pushed it that far. There are numerous factors causing mileage to vary: body weight, outdoor temperature (heat/cold), terrain, speed, and other factors you can likely well imagine.

I've set my own restrictions, in regards to how far I can go, as well as where and when I can leave. I am being reasonable, and informing the staff often in regards to my whereabouts, or my intended whereabouts. Plus I have my phone on me 24/7.

I am not going anywhere near automobiles, streets, or really, any kinds of traffic. Perhaps eventually, but not right now. Also, I do not have any lighting on this chair (plus, it's all black). Insurance didn't cover it… and it's $1,200 for the kit. Instead, I'm trying to figure out how to affix bicycle lights of some kind. Something in the USB realm, rechargeable. Mounting the lights will likely be the biggest obstacle, depending on which kind I select, but I'm fairly certain the staff here will help me resolve this issue. :)


@lenora - hey there, yes, I will ask that someone take a picture of me in the chair with my bandana, of course! And I am being rather careful, I don't want to destroy my new machine before even breaking it in properly.

I'm glad you enjoyed the clouds we (Arizona) sent over! This has been a really odd summer, and an especially odd monsoon season. We've been below average much of the time, but with super high humidity. It's basically been Florida on steroids. We've eclipsed well over 3 inches of rain in the past month, and we've got an active flash flood watch throughout the entire weekend, with a 70 to 80% chance of storms. That's not an Arizona thing. Especially in regards to the desert. For us, even a 40% chance of storms is unusual, even during our "rainy" season.

As of right now, they're indicating between one and three inches of rain by Sunday. That would be astonishing, if it actually plays out. We are about to get slammed by a former tropical system that departed from your great state of Texas, and soon to be inundating us with excessive moisture. :)

Also, it's a good thing the temperatures haven't been horrific. The air conditioning for our subunit is broken, so I've been going without for the past 24 hours. Luckily I can escape into the coolness of the rest of the building whenever I feel the need, or the perspiration. Other residents were relocated accordingly.
 
I'm glad you enjoyed the clouds we (Arizona) sent over! This has been a really odd summer, and an especially odd monsoon season.
I enjoy all the cloud photos and trees photos....

The last cloud photo you posted in the reply above - no words for how gorgeous that cloud is and the rays and everything.

so that photo to me represents how Happy and Joyous You Currently Are, in this new chapter of Greater Freedom.

(back watching watercolor painting videos, glutton for punishment, I think those clouds must be attempted...the colors in there, including the mauve....and the rays and the range of sublties)
 
I am being reasonable, and informing the staff often in regards to my whereabouts, or my intended whereabouts.
yes, this part is important, as they are responsible for you, and so you want to be the thoughtful guest (or are you an Associate)?....

And in case the machine stalls....

Comment- I hope you can eventually work on writing this up for a broader audience...the tale of six years etc. What this freedom feels like. And other pertinent insights.

Must be somewhere out in the broader world, to post it.
 
But right now, I am flying high. I am generally positive minded, but I don't even know how to explain what the world feels like to me right now. Plus, everyone here is beyond thrilled for me. And I can't even think about that, or I totally lose it. Emotionally. All over the place.
I am absolutely, positively THRILLED for you, @Howard!

What a game-changer to be able to move about (somewhat) freely, when you are able to, when you want to, or when you need to.

You deserve this, @Howard. :hug:
 
(Here, I'm on the east side of the building looking north.
@Rufous McKinney, do you know what kind of tree that is? It reminds me of one kind of tree we have here as well that is like an evergreen but with always very soft needles and the bark peels like that one as well, I believe.

I was searching yesterday and couldn't find the answer. I wanna say 'tamarack' but when I looked at pictures of those it still didn't fit.

Edit: Bald Cypress??
 
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