• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

“What Happened to You?”

Background

The following statistical summarization includes all initial conversational interactions that have taken place since I've been wheelchair bound (nearly two years)

Note: I utilize a power wheelchair to get around. Most of my initial getting around took place within a nursing home, along the local bike trail, and at the local parks nearby.

In the past 6 months I've been living in the garage, hanging out in random parking lot at the nearby strip mall, and then also, visiting the nearby parks, as well as visiting the nearby mountain preserve.

Generally speaking, the conversations begin with either the other person greeting me in a friendly fashion, or with me starting things off.



Conversational Initialization

Everyday Scenarios: a stranger approaches me, and within a matter of moments, words are exchanged. After the initial brief small talk interlude (sometimes there's no small talk at all), more often than not, a particular line of questioning begins.

73% of the time, the first question they ask is … “What happened to you?”

Note: apparently I look to be in a state of disrepair / unhealthy

The next group subsists of an entirely different subset of people, asking me if I'm “okay” (21%)

Note: are they likely assuming that I am not? Probably yes

The remaining percentage of people ask me if I have drugs (or if I want drugs, or if I can score drugs for them) / they ask me if I am hungry (need any food), or if I am seeking shelter. Oh, and then there are also The Jesus People.

Can you imagine if this was your daily reality? Perhaps it is though. I shouldn't assume that it’s not.

In all actuality, I don't know how I should feel about this line of questioning, or the assumptions made. I mean, on one hand, all kinds of random people do start conversations with me, probably something that wouldn't happen if I were walking upright (like a normal person), as was the case nearly a decade ago.

Then, on the other hand, I could adopt a sort of paranoid persona as a direct result of these types of inquiries - afterall, I do have the ammunition to do so. Yes indeed. I could easily assume the world is sending me a message of sorts, a message that … perhaps I am unwanted, worth mocking, or some such thing.

I haven't gone there, choosing not to explore the depths of depressive despair such a stance may cause.

I feel as though, for the most part, I choose the high road (in most instances). And no, I'm usually not under the influence of marijuana during these initial engagements. “High” is relative (just like cousins, aunts and uncles, etc!).

My assumption is that people likely have an innate need to engage me, and in so doing, these scenarios afford me the opportunity to provide a service of some kind. Or more simply, maybe these people feel better about themselves after having interacted with a drug-addled, homeless, needy, disabled person - hence, making themselves feel better after having done their good deed for the day by simply interacting with me. In truth, I often sense these people do come away feeling better about themselves, or feeling better about something, a uniquely vague something that I am unable to quantify.

On the whole, I feel as though disabled people are more approachable in that sense, as though it's an automatic victory, a feel good tally. “Hey, I talked to a disabled person today!” They may think to themselves, while patting themselves on the back. “At least I'm not in their situation” may be their next thought, within their thought sequence.

Sometimes these random folk intimate that I'm doing better than they thought I'd be, considering my dire circumstances (being wheelchair-bound, and or looking a ragged around the edges). Or they compliment me on my attitude, my fortitude, and depending upon my exact location, my latitude. But hey, what about my aptitude? That's the thing I try to impress most. Although I shouldn't. And I don't, when things are going well for me.

But the worst thing these assumingly well-intended people ever do is ask me if I can walk. Or ask me if I shall walk again some day. Or insinuate that I'm not trying hard enough to fix or cure myself. Or they mention the obvious, that I should try physical therapy (no kidding, huh?). Yes, that one hurts. That one hurts the most - especially after having had an involved (and perhaps evolved) conversation with me. Do they truly sense in any way, shape, or form, that I wouldn't make that type of brute effort, that I purposely enjoy being stuck in a wheelchair all the livelong day - that I am lazy and unmotivated beyond repair?

Perhaps they think they're being helpful by suggesting such a thing. Sure, the thought of undergoing physical therapy may have never occurred to me. I might be one of those people who are unreasonably dense or thick headed.

But I wonder, wouldn't it be obvious and immediately apparent if I were suffering from symptoms of laziness. I feel as though I come off as a rather motivated person (from the get-go), someone who is positively inclined, by default. And then also, semi-intelligent.

So that one's on me, the thing that bothers me most - the accusation (or implication) that I'm not trying hard enough. And that's the thing I believe each of you can relate to directly, this mystery illness that in many ways, is unprovable, a thing that does not tangibly exist.

The more I think about it it (hint: I do not want to think about it all that much), The Evil Ex (the mother of my son) defaulted to that one, openly and repeatedly suggesting that I wasn't trying hard enough… that I was being lazy and unmotivated on purpose so that I wouldn't have to pay monthly child support. She would insist that I wasn't really sick at all, that it was all in my head.

Worse than that, she would tell my son the same thing. She repeatedly drilled that into his head, that his father was unmotivated, lazy, uninspired, and had little desire to earn an honest living.

How does this make sense? What sane person would willingly decide to ruin their own life by purposefully laying in bed all day long for years on end, overwhelmingly exhausted and nearly starving himself to death (among a plethora of unfortunate symptoms) over an easily affordable $204 monthly child support payment?

So you know, I was taking home an appreciably larger sum on a weekly basis, no less … back when I was a real person.

So that's my weakness. I've made it known to all. Choose to critique or criticize my physical effort, and it's likely I'll internally disintegrate, to varying degrees. Mostly, I'll become angry at myself for having failed at life. That's how I punish myself when I need to be punished (honestly, I don't need to be punished).

Thankfully, I do not go there very often, as I no longer have to contend with the Evil Ex, nor people of her ilk, to any great extent (especially after having ditched the physical therapy again). The exception being, The Doubting Doctors and undefined others within the medical community…

No, let's not go there.

Opportunity

As a direct result of my disabled state, my entire realm of socialization has changed substantially. To my benefit, I have all sorts of people openly and willingly approaching me now. But the question remains, do these people feel sorry for me? Or do they simply empathize / sympathize with my plight? Heck, do I even have a plight?

Definitions

Plight : a dangerous, difficult, or otherwise unfortunate situation

Based on this definition, I may indeed qualify. And so may you. Perhaps all of us do - yep, everyone on this planet - because life is never easy. Something's always wrong. Something's wrong with each of us, emotionally, mentally, or physically. And that's where coping skills and coping mechanisms come into play.

Concluding

I guess that's enough of that. My point has been made (or it hasn't).

For now, my days asunder continue - these valued days being spent amid the bland repeatable nothingness of living within a one car garage (with a broken garage door, no less). No, I am not imprisoned in bed like I once was, but of course, parallels remain. To some extent we are each forever imprisoned by our bodies, and especially, by our minds. I am no different. So I'd suggest we make the most of this. A little effort goes a long way, however, a lot of effort is downright exhausting.

I hope you (or somebody / anybody) enjoyed this effort.


Take care,
Howard




IMG_20240504_105922.jpg



IMG_20240428_113456__01__01__01.jpg



IMG_20230801_053627__01.jpg

Comments

Is your garage getting too warm now? :nervous:

Nope. It's been unseasonably cool of late. Today was only in the '80s. Glorious weather to behold! Towards this weekend it's going to be upwards of 100°. Not ideal, but I seem to be able to handle temperatures up to that point.

The warmest it's been inside the garage is 82 or 83°... with the door leading to the interior left open to allow for the cool air to funnel through. The wife person covered up the broken window with some cardboard, so the hot air isn't coming in side as readily.

The only problem with that is the mosquito infestation. The mosquitoes don't bother me at all, however, the wife received over 25 bites in the past 24 hours and she's swelling up all over the place.

Our next objective is to purchase some mosquito netting. I'm assuming they have it on amazon.

After the garage door is fixed, this Thursday, I can move inside anytime I choose as long (as I can recruit a certain somebody to pull me up the stairs). Well, next week the wheelchair people shall be paying a visit.

And then also, I need to go to the dentist this week and have the rest of my teeth pulled out. My own dentist doesn't have nitrous oxide, so I'm trying to schedule with a dentist who does. The problem being, the expenses will be out of pocket. But I can afford $500 if need be.

If I don't have my teeth pulled now, I'll have to wait two or three months until the other dentist can perform the procedure in the hospital setting. And really, there's no point in waiting, if I can just get over the fear. I guess it's a fear to pain ratio I'm dealing with right now. Yeehaw!

So yeah, once I get each of these things knocked out, I can move upstairs and kick back and enjoy the air conditioning.

Whoops, I guess that was a super long answer, but I believe I covered all the bases.
 
And really, there's no point in waiting, if I can just get over the fear. I guess it's a fear to pain ratio I'm dealing with right now. Yeehaw!
That would be a scary prospect for anyone.
The mosquitoes don't bother me at all, however, the wife received over 25 bites in the past 24 hours and she's swelling up all over the place.
I think B vitamins... especially thiamine helps repel mosquitoes but it takes a while to build up levels in the body.
So yeah, once I get each of these things knocked out, I can move upstairs and kick back and enjoy the air conditioning.
Hopefully just in time before the very unbearable weather shows up.
 
Well, Howard, I really can't say anything, so wonder why I'm answering you at all.

Perhaps the people in your new neighborhood are just "different." Many people in wheelchairs complain that people ignore them completely, and they would be happy to explain their problem....if asked.

So people are curious and they're asking. What they probably mean is, "Why are you in the wheelchair?" Perhaps they figure it's something like an accident or you're a soldier. It also sounds that in their own way they're trying to take care of you by making sure you've eaten, have a place to go (OK, it's not optimal at the moment, especially with the broken door). I also believe you were happier among the crowd you used to see when you were in the nursing home and out and about....is that right or wrong?

I'm glad to hear that you'll be moving upstairs in the hot weather....I really think that garage is a bad idea in the heat. You're having a bad day, week or month.....a case of the grouchies (OK, it's not a word per se), and perhaps you're more worried than you think about your tooth extractions. I think most of us would be....will you have to wear your new dentures immediately? I think that's how it's done. Now that will put you in a fine mood.

Just make sure there is a qualified anesthesiologist at the dentist's office.....don't take chances. We're always waiting for something anyway, so wait to go to the hospital if necessary.

How's the good Mrs. ex-Howard doing with her job hunt? Hey, she likes you and likes you enough to put up with 25 mosquito bites. Take heart...and for my sake and everyone else's, watch the heat.

Oh, I noticed that your curly locks have been shorn somewhat. It looks good and I really mean that. Probably somewhat cooler too. Take care of yourself.....and try to think of a joke or something to fend off the people who are aggravating you. Send them away laughing!! (And I'm one of "the people"...right?) Sorry. Yours, Lenora
 

Blog entry information

Author
Howard
Read time
6 min read
Views
333
Comments
4
Last update

More entries in User Blogs

More entries from Howard

Back