The Devil’s In The Details
I received a reply from a member of a forum I hang out on quite a bit, in response to my first post…one almost identical to the post that was ‘disappeared’ from that Honda Element Owner’s Club, except this one’s evidently okay with the moderators at this particular forum. I got the impression I hadn’t fully communicated the quirky specifics of my situation judging by his response, which while thoughtful and caring made me think he hadn’t grasped it all.
I hate typing so much, but accuracy demands a comprehensive coverage of the matter at hand, so here’s his question along with my reply:
(Member writes): I had a nephew with MS, and saw what it did to him. Unlike you, he had the “luck” of at least being born in a country with a pretty good social security system, meaning he did get most of what he needed to make his life bearable, but even so there was very little to be envious about.
Now those modified cars you are talking about, they are expensive as hell; dont get me wrong, its not like I wouldnt wish you one, but I have to ask… isnt there at least any organized hospital transport available? Like a minivan/ambulance/taxi? Its common here. Its obviously nowhere near as good as having your own car, but when my late father had to undergo dialysis, he was picked up by a minivan from the hospital 3x or 4x a week (and thanks to our social security, it cost nothing, or next to nothing, which kinda makes sense as its still so much cheaper than hospitalizing him). If that doesnt exist there, then surely there must be someone willing to take you there, I mean, every other month? Neighbors, family, friends? Heck, I dont even know you, but if Id lived any closer, Id gladly drive you now and then. Seems like the very least one could do.
Anyway, as for your actual question, I cant seem to find the forum rules; but even if somehow there was a rule you’d break by linking your blog (I seriously cant imagine what rule that would be), sometimes rules are meant to be broken and this would seem like a perfect reason to do it. This has nothing to do about swindling or spamming, and afaict, this is still a community of human beings.
And today’s reply:
Thanks for responding!
It might be productive if I emphasize some pertinent details, I’m thinking:
Sorry about your nephew. I wouldn’t wish this MonSter of a disease on any human. As many say “The difference between a very serious disease and MS is that while the serious disease threatens to kill you outright…MS threatens not to.”
When you mention the expense, well, yes, the mod to my vehicle is inconveniently expensive, and you clearly mean well…but if someone told you this: “Your life is now basically over. You can’t ever do any of the things you used to again except for eating, sleeping, being on a computer or going to a doctor’s office. By the way, the cost to get a good deal of your life back is about $25,000, but no one thinks you’re worth it.”
Wouldn’t you exert some effort to make this statement a lie?
I already have a power wheelchair.
In my garage is a 2008 Honda Element with only 3500 miles on it, and after my last payment on it in September plus whatever fiddling amount in fees they may have tacked on, it will be entirely mine and I can do as I please with it.
I’m two-thirds of the way there!
Maybe telling some more of my story will help you see why I feel pretty darn confident about this wacky adventure:
When I was told by my flight surgeon that he couldn’t renew my first class aviation medical certificate, I found myself unable to fly just a week later when my current one expired. On my blog, in fact, I added the YouTube video of very my last approach and landing in the Mitsubishi MU-2 I’d flown for years to my very first blog entry. I think it’s worth a look.It had better be, ’cause I don’t think I’ll be able to get IN an airplane’s cockpit again, much less fly it 😯
My paychecks stopped that week. I went with zero income for 2 1/2 years, and the better part of the last two years of that was spent fighting the government to get them to acknowledge that I was actually disabled.
When this ordeal began, I had just paid off my previous car, so that wasn’t a factor, and during it the local Civitan Club kindly built custom ramps in my home long before a wheelchair was in sight…just in case.
At its end I was 2 weeks from losing my home, but even that was resolved.
Even though I had just been approved for permanent disability status and had that fat retroactive check enroute, my mortgage company wanted to toss me out anyway…but a call to the local newspaper whose reporter called my mortgage company to verify that they were actually planning to throw an 8-years-in-residence, profoundly disabled homeowner in the street for being just 3 months behind in his mortgage payment, and they scurried like cockroaches under a kitchen light, suddenly turning very accommodating and understanding.
You see? For all the atrocious things I was forced to deal with, between the disease crippling me, the government trying to delay me to death, treacherous medical people trying to delay my disability decision even further in order to make me a compliant and dependant research guinea pig…for all these things…my story is full of miracles! I should have been homeless and destitute, but that didn’t happen.
No way I could give up now…too many wonderful things have happened for me to dishonor what’s happened and give up at this point!
Besides, as one of my favorite writers, Robert A. Heinlein said: “Money problems can always be solved by a man not frightened by them.” I’m a believer. I’ve found that if I don’t just sit here and expect good things to happen to me, and am willing to put some heart into an endeavor, it’ll happen if it needs to.
In regards to public transport for the disabled, I am actually going through the bureaucratic maze of getting approved for ‘Access Ride’ here in Nashville, but it looks like it’ll be unpleasant at best to use…they require you to call and make an appointment for a ride, but make it clear there’s at least a couple of hours leeway for the actual pickup time, they require more notice if you need to get somewhere more than 1.5 miles from a bus stop, and if you miss your return pickup time by any amount of time, the driver will leave immediately.
There’s more, but you get the idea…it’s a dismal grey bureaucratic mess. Imagine the surly workers at a motor vehicles department being in charge of your mobility. No thank you, sounds like a fine way to find yourself alone and stranded on a winter night.
I don’t mean to demean your thoughtful mention of finding someone to take me places, or even offering to do so yourself if you were nearby, but I don’t think you quite absorbed the salient factor from my first post: having a volunteer available to take me places would still be no less hazardous than my current situation. The danger to me is in transferring from my power wheelchair to whatever vehicle it is, and out again later. THAT’s when I’m likely to fall and risk serious or fatal injury.
I drive just fine, amazingly enough. The threat comes from getting in and out of a vehicle with one utterly useless leg and completely unreliable physical balance.
Even then, the volunteer would have to push me around at the destination in that manual wheelchair since my powered chair gets left behind. That really limits what both people can do when they get wherever we’re going, and seems awfully unfair, especially for the volunteer trying to help.
I think the picture’s perhaps a bit clearer. As I’ve mentioned, this whole thing’s been going round and round in my head for months.
As to the blog? It’s only been about a day since I posted so I don’t yet feel right about posting the actual link…but let’s try this:
You’re aware that if you highlight a phrase on a page, then right click and select “Search Google for “(insert phrase)” from the options available, you’re likely to turn up something interesting, right?.
Try it on my favorite motto these days: Let’s Get Glenn Mobile!
Highlighting four words, right clicking, and selecting the search option isn’t too taxing, I believe…capiche?
I hate having to be so verbose…I feel like I have to write a technical manual to get all the specifics across. Still, I checked over it and there didn’t seem to be anything there that didn’t need to be, so I submitted it as you see it.
As they say, the devil’s in the details.