I let Rosa, my housekeeper, go today. It was the first in what will be a series of enforced economic decisions as my financial viability winds down. It's not that Rosa was terribly expensive. I paid her $50 for two hours of house keeping. It used to be every week but now that home care provides cleaning once every two weeks, it have come down to having Rosa in the alternate weeks. That meant roughly $100 a month.
A hundred dollars is not a lot of money, unless you need it and don't have it. More importantly, it represents the potential for other choices as things be tougher on a financial basis. For example, that $100 is enough for me to go out with friends once a week for a month, assuming I don't drink a lot or eat out as well. One hundred dollars represents 2/3 of my monthly TV and Internet bill; I am on the Internet almost constantly at home, except when watching sports or documentaries on TV. That $100 a month will cover almost all of my property tax bill.
There are other financial decisions to come, soon. Once my money runs out, most likely in March, I will have my pension of $1,100 a month and probably a supplement from the Alberta Income Supplement for Handicapped of about $300 a month, for a total of $1,400 a month. That won't even cover my mortgage, let alone taxes, household costs, food and entertainment. Of course my truck will go almost immediately; I will have to stop making the payments of $780 a month. Once the truck goes, I won't have gas or maintenance. I also will no longer have freedom or independence.
Even with my pension and AISH I won't be able to cover the most basic of expenses. It costs me around $2,500 a month to keep it all together, and that's without the truck. Add the truck in and you get around $3,500. That means I will be about $2,000 short a month, or about $1,000 if I lose my truck, something which is a near certainty, especially once I lose my ability to drive.
There will be lots of opinions on why I am in this situation. Some will say I should have planned better. Some will say I should have saved more and spent less. Some will say it's my own fault. All of them will be partly correct. I didn't plan on getting ALS, the single most expensive disease possible. I didn't realize that spending money on my family and life over the years was really a bad idea. I didn't think that helping my kids whenever possible was such a bad thing to do. I didn't think that I would live longer than planned with this terminal illness.
Nobody plans for ALS. Nobody plans to lose their career in their highest paying and most productive years. Nobody plans on a bitter divorce and its attendant financial destruction without time to recover. Nobody plans on the costs for wheelchairs, home renovations, truck modifications, home care. Nobody, not even me.
Wednesday, 14 January 2015
Tuesday, 13 January 2015
No More Pity Party
I am allowed to have bad days; the last couple of them have qualified. Sometimes these bad days are triggered by something; most times they move like a storm across the ocean, the dark clouds and wind tossed water moving quickly, unfettered by obstruction. When I feel those feelings, I allow myself to have them, let the storm pass, and look once again at an azure sea fill with life. I listen to the sea birds calling, to the whale's spout, to the bark of sea lions. I awaken from the storm, ready once again to sail the seas of life.
My pity party over the last few days was brought on by tiredness, fueled by rum, and stoked by my own mental games of "what if". If you want to feel really bad, think of all the imaginary things that might have happened in your life "if", think of all the imaginary things in life you will miss "because". Stack a little ordinary life frustration on top of that. You get a pretty potent, depressive mix.
Fortunately this state burns itself out fairly quickly. I am basically a happy guy. Certainly I have a terrible disease; that is something that many of us will face. Yet even with that, I can find many things that make me laugh, make me feel joy. All I have to do is look out my window at the beautiful, blue sky, see the icicles hanging on my tree, the branches covered in snow. All I have to do is recall excited grandchildren running around in grass skirts, showing off their hula dancing technique. All I need recall is the love of good friends and family.
The stairway out of this pit starts with laughter, a change in perspective, someone finding something that ever so lightly lessens my load. I'm usually good with just the smallest nudge. That nudge, however, can't come from being "told" to stop feeling sorry for myself, from a lecture about how I don't have it so bad. That nudge is often something that makes me see myself and my world just a bit differently, a view that allows me to forgive myself and move on. I can carry my load but, just as it is on occasion with my wheelchair, sometimes I need help with the slope.
Life is good; it's not easy, but it's good. I have ALS; this is a sad and terrible thing. Yet I have a life, a good life, filled with adventure and wonder and laughter and love. Still, even with that, I get down a bit sometimes. Then I come back. I remind myself that the biggest problem in my life today is that I am out of butter. Other than that, and a small health issue, I have it pretty good.
My pity party over the last few days was brought on by tiredness, fueled by rum, and stoked by my own mental games of "what if". If you want to feel really bad, think of all the imaginary things that might have happened in your life "if", think of all the imaginary things in life you will miss "because". Stack a little ordinary life frustration on top of that. You get a pretty potent, depressive mix.
Fortunately this state burns itself out fairly quickly. I am basically a happy guy. Certainly I have a terrible disease; that is something that many of us will face. Yet even with that, I can find many things that make me laugh, make me feel joy. All I have to do is look out my window at the beautiful, blue sky, see the icicles hanging on my tree, the branches covered in snow. All I have to do is recall excited grandchildren running around in grass skirts, showing off their hula dancing technique. All I need recall is the love of good friends and family.
The stairway out of this pit starts with laughter, a change in perspective, someone finding something that ever so lightly lessens my load. I'm usually good with just the smallest nudge. That nudge, however, can't come from being "told" to stop feeling sorry for myself, from a lecture about how I don't have it so bad. That nudge is often something that makes me see myself and my world just a bit differently, a view that allows me to forgive myself and move on. I can carry my load but, just as it is on occasion with my wheelchair, sometimes I need help with the slope.
Life is good; it's not easy, but it's good. I have ALS; this is a sad and terrible thing. Yet I have a life, a good life, filled with adventure and wonder and laughter and love. Still, even with that, I get down a bit sometimes. Then I come back. I remind myself that the biggest problem in my life today is that I am out of butter. Other than that, and a small health issue, I have it pretty good.
Monday, 12 January 2015
I Quit; But I Can't
I quit.
No, this is not a peremptory statement on suicide. No, I am not taking the pills today. No, I am not going to wheel myself into the middle of traffic and hope for a hit. This is just me saying that I am really fucking tired of this ride. I've had enough. I give up. ALS, you win.
I'm really tired of being the hero. I'm really tired of being the inspiration, the warrior, the one that takes everyone to the promised land. I'm just not that guy. I am not the one that people should look up to, nor the one that people should seek to find solace from. I am not the man with any great wisdom; I'm just a schmuck who happened to get a miserable, shitty, horrible, nasty disease for which there is no cure.
Think about those who came before me; not those with ALS but those with other "terminal illnesses" about a hundred years ago. Did you know why Doc Holliday didn't give a fuck at the OK Corral? It's because he had consumption. That's what they called TB or cancer or just about everything else about 150 years back. He knew, as I know, that going out with a bang beats the hell out of going out with a whimper.
Unfortunately Doc Holliday and I share the same fate; we are destined to survive the bullets, ultimately to end up expiring ignominiously in a chair somewhere barely noticed by history in our passing. We, both the Doc and I, are irrelevant in our expiry. Our relevance, his and mine, is only in our living, not in our dying.
I am not much for quitting; it is not in my nature. It's just that I am fed up with fighting. I really don't want this daily slog, this trench warfare the only parallel of which I can find in my grandfather's journal of the First World War. The difference between he and I is simply this; each day as he fought his way through the trenches of western France, he hoped and prayed he would return once again to the sainted soil of his home. As I fight this perpetual slog, I know that there is nothing at the end but defeat in body.
The only thing I have left is my spirit, my mind. Okay, I quit with my body. My mind, other the other hand, refuses to surrender. That is all I have remaining. I quit, but I can't. This is so fucking stupid.
No, this is not a peremptory statement on suicide. No, I am not taking the pills today. No, I am not going to wheel myself into the middle of traffic and hope for a hit. This is just me saying that I am really fucking tired of this ride. I've had enough. I give up. ALS, you win.
I'm really tired of being the hero. I'm really tired of being the inspiration, the warrior, the one that takes everyone to the promised land. I'm just not that guy. I am not the one that people should look up to, nor the one that people should seek to find solace from. I am not the man with any great wisdom; I'm just a schmuck who happened to get a miserable, shitty, horrible, nasty disease for which there is no cure.
Think about those who came before me; not those with ALS but those with other "terminal illnesses" about a hundred years ago. Did you know why Doc Holliday didn't give a fuck at the OK Corral? It's because he had consumption. That's what they called TB or cancer or just about everything else about 150 years back. He knew, as I know, that going out with a bang beats the hell out of going out with a whimper.
Unfortunately Doc Holliday and I share the same fate; we are destined to survive the bullets, ultimately to end up expiring ignominiously in a chair somewhere barely noticed by history in our passing. We, both the Doc and I, are irrelevant in our expiry. Our relevance, his and mine, is only in our living, not in our dying.
I am not much for quitting; it is not in my nature. It's just that I am fed up with fighting. I really don't want this daily slog, this trench warfare the only parallel of which I can find in my grandfather's journal of the First World War. The difference between he and I is simply this; each day as he fought his way through the trenches of western France, he hoped and prayed he would return once again to the sainted soil of his home. As I fight this perpetual slog, I know that there is nothing at the end but defeat in body.
The only thing I have left is my spirit, my mind. Okay, I quit with my body. My mind, other the other hand, refuses to surrender. That is all I have remaining. I quit, but I can't. This is so fucking stupid.
Sunday, 11 January 2015
Mind and Body
The sleeping episode yesterday has driven home the reality of a much larger issue I have been facing lately, an issue which has been apparent to me from the beginnings of my journey with ALS, but has, so far, been confined to the sidelines by my approach to life and living. I am beginning to have to deal with the certainty of physical failure. I am seeing, in a real and tangible way, that my mind and my body have become two separate entities, one working well and the other failing constantly.
It might seem a little weird to talk of mind and body as two separate things, especially in the physical realm. The more spiritually enlightened amongst us have long known that you can separate these two things. Most of us use some sort of chemical agent or drug to assist in this separation, to help us "get out of our own body". There are people who regularly speak of "out of body" experiences. Alas, mine are not at all like that.
What I am dealing with is the more practical reality, that my mind says I am ready to go while my body insists that it is not. I see this most prevalent in my sleeping, or more correctly, my awakening patterns. I wake up, at least my brain wakes up, after about 8 hours of sleep, often even less. My brain feels good, ready to go, alert and alive. Then I ask my body to move; it has become like a delayed second request. My body says "No thanks. I want to sleep." So even though my brain feels ready to go, I simply am unable to make my body move as I wish.
It goes a bit deeper than this simple connection. I've been losing physical control of my body for almost four years. It started with the smallest of things, the most dismissable things. As time has gone by, the failed link between mind and body has become clearer, more evident. Yet even with this powerful physical evidence I was able to ignore the facts and simply push myself to do things in other ways. No legs; no problem, get me a wheelchair, a lift, a grabby stick. Arms tired; no problem, use the power wheelchair, get someone to push, call friends.
Now, however, I can clearly see the loss of function, of all things, in the waking process. I wake up mentally ready but my body just can't do it. My brain is awake while my body demands rest. My mornings almost always start with an hour or so of just staying in bed waiting for my body to catch up with my mind. I use this time; it's a place where my mind can be creative without my body participating. I also doze, slumber flowing in and out of this period of enforced idle.
It's a strange time, and a strange thing to see. I know my mind would go if my body would permit. I know I can function mentally; it's the physical that is failing me. My mind is active and my body is failing; that's what ALS is all about.
It might seem a little weird to talk of mind and body as two separate things, especially in the physical realm. The more spiritually enlightened amongst us have long known that you can separate these two things. Most of us use some sort of chemical agent or drug to assist in this separation, to help us "get out of our own body". There are people who regularly speak of "out of body" experiences. Alas, mine are not at all like that.
What I am dealing with is the more practical reality, that my mind says I am ready to go while my body insists that it is not. I see this most prevalent in my sleeping, or more correctly, my awakening patterns. I wake up, at least my brain wakes up, after about 8 hours of sleep, often even less. My brain feels good, ready to go, alert and alive. Then I ask my body to move; it has become like a delayed second request. My body says "No thanks. I want to sleep." So even though my brain feels ready to go, I simply am unable to make my body move as I wish.
It goes a bit deeper than this simple connection. I've been losing physical control of my body for almost four years. It started with the smallest of things, the most dismissable things. As time has gone by, the failed link between mind and body has become clearer, more evident. Yet even with this powerful physical evidence I was able to ignore the facts and simply push myself to do things in other ways. No legs; no problem, get me a wheelchair, a lift, a grabby stick. Arms tired; no problem, use the power wheelchair, get someone to push, call friends.
Now, however, I can clearly see the loss of function, of all things, in the waking process. I wake up mentally ready but my body just can't do it. My brain is awake while my body demands rest. My mornings almost always start with an hour or so of just staying in bed waiting for my body to catch up with my mind. I use this time; it's a place where my mind can be creative without my body participating. I also doze, slumber flowing in and out of this period of enforced idle.
It's a strange time, and a strange thing to see. I know my mind would go if my body would permit. I know I can function mentally; it's the physical that is failing me. My mind is active and my body is failing; that's what ALS is all about.
Saturday, 10 January 2015
Sleepy
Yes, this is the blog entry for January 10, 2015. Yes, this entry is coming at 9:15 PM in the evening. The simple reason for this very late blog entry is that I just got out of bed about a half hour ago. Up until about 8:00 PM today, I was asleep. I awoke, struggled as usual getting out of bed, had a shower, got dressed, and here I am, late as can be.
I went to bed last night at about 3:00 AM, not an unusual thing for me given the lack of restraints on my bedtime and my awakening the next day. It's not like I intended to stay up that late; I had the opportunity to go to bed hours before. I just wasn't tired and did not feel sleeping. Then, at around 2:45 AM, I started to get dozy. I finished my wine, turned of my TV show and rolled off to bed. My head hit the pillow and the last I have of the clock, it read 3:08 AM.
The next time I saw the clock, it read 10:00 AM and I was barely able to read it. Knowing full well that I was not going to make my noon appointment with friends at the Farmers Market, I sent out a note letting them know. My demanding body dragged me back into slumber; it was 4:00 PM before I awoke once again.
I knew by this time that my body and my brain were having a fight. I wanted to get up, at least in my mind. Yet every effort to convince my body to cooperate failed once again. I just couldn't do it; I was too tired. So I posted a note on Facebook to let friends and family know I was alive but tired. Then I returned to slumber. I awoke again at 6:00 PM and realized I would not make the 7:00 PM cribbage game I had signed up for. Once again I sent out an apologetic cancellation notice. Once again I returned to slumber.
The last part of my marathon sleep was off and on. I slept; I woke up for a few minutes. I slept; I woke up for a few minutes. This is not unusual for me in my last hour or so of sleep. Today it lasted for a couple of hours. Finally, at about 8:00 PM today, I began the process of getting out of bed.
In some ways, this Rip Van Winkel episode is not a real surprise. On Wednesday night, I got about 11 hours of sleep. On Thursday night, I got about 9 hours of sleep. Last night, and today, I got about 17 hours of sleep. That's 37 hours of sleep over three days, or about 12 hours a night; my average. I guess my body was just catching up. Now that I am up, I think I will go out. After all, I'm not that tired.
I went to bed last night at about 3:00 AM, not an unusual thing for me given the lack of restraints on my bedtime and my awakening the next day. It's not like I intended to stay up that late; I had the opportunity to go to bed hours before. I just wasn't tired and did not feel sleeping. Then, at around 2:45 AM, I started to get dozy. I finished my wine, turned of my TV show and rolled off to bed. My head hit the pillow and the last I have of the clock, it read 3:08 AM.
The next time I saw the clock, it read 10:00 AM and I was barely able to read it. Knowing full well that I was not going to make my noon appointment with friends at the Farmers Market, I sent out a note letting them know. My demanding body dragged me back into slumber; it was 4:00 PM before I awoke once again.
I knew by this time that my body and my brain were having a fight. I wanted to get up, at least in my mind. Yet every effort to convince my body to cooperate failed once again. I just couldn't do it; I was too tired. So I posted a note on Facebook to let friends and family know I was alive but tired. Then I returned to slumber. I awoke again at 6:00 PM and realized I would not make the 7:00 PM cribbage game I had signed up for. Once again I sent out an apologetic cancellation notice. Once again I returned to slumber.
The last part of my marathon sleep was off and on. I slept; I woke up for a few minutes. I slept; I woke up for a few minutes. This is not unusual for me in my last hour or so of sleep. Today it lasted for a couple of hours. Finally, at about 8:00 PM today, I began the process of getting out of bed.
In some ways, this Rip Van Winkel episode is not a real surprise. On Wednesday night, I got about 11 hours of sleep. On Thursday night, I got about 9 hours of sleep. Last night, and today, I got about 17 hours of sleep. That's 37 hours of sleep over three days, or about 12 hours a night; my average. I guess my body was just catching up. Now that I am up, I think I will go out. After all, I'm not that tired.
Friday, 9 January 2015
Don't Say Stupid Shit
Be forewarned. There is swearing in this entry. I can help it, but I won't; some things just need to be surrounded by expletives.
Today another PALS online posted a thing about what not to say to someone with a "chronic" illness. It's a list of the kinds of crap that I hear often, the kinds of mindless things people say because they don't know what else to say, because their brains don't have the power to express empathy in any meaningful form. Some of these things piss me off so much, and so often I have to smile politely and pretend that the shit that just came out of someone's mouth is actually meaningful.
I think the biggest single one on the list of 12 is the one I write about so often; "but you don't look sick", or some other inane variant thereof, where people think that you only look sick if you look deathly. My favourite variant is "Other than the wheelchair, you look great." It's like saying to the dead person in a casket, "Other than being dead, you look great." Before you tell me I look great, ask me how I am feeling. Then you will know. If I feel great, then you get off scott free. If I feel shitty, which is pretty much how I feel all the time, then find some other mindless drivel to spew.
The next most annoying thing on this list of stupid things to not say is what I call the inane comparison. The list has "My friend has real bad back problems but he is still working." The variant that drives me crazy is when people say shit like "I broke my leg once and I was in a wheelchair for three months. It was awful." All I want to say back is "Well, dick-head, you seem to be walking just fine now, so walk right the fuck out of here" Your temporary time in a wheelchair is absolutely no comparison to my life sentence. You always knew you would get out; I know that I will never get out.
Coming in a close, but perpetually stupid third, is the advice about how I should change my diet, or take such and such a vitamin, or do some weird, fake, stupid fucking exercise program. Don't you get it, you dumb shit, that stuff doesn't help me! Just because your aunt's neighbor's cousin's dog's third owner got better by rubbing eucalyptus leaves on his testicles doesn't mean my ALS will slow down if I eat like a koala bear. For those of you who talk about "eastern medicine", look up good old Chairman Mao. He died from ALS. All the mystical shit you call eastern medicine didn't manage to help him.
Then there is special mention for "I am praying for you." I appreciate that a for a great many people, prayer is a self-calming and deeply internal spiritual experience. I appreciate that, for those who can do nothing else, this at least makes them feel like they are helping. My problem is the irrationality of it; why pray to a God for healing when it was this same God who gave me this disease in the first place? Pray for acceptance, pray for peace; sure, but healing? I think the prize winner for stupid responses in prayer goes to the PALS who first posted the list. Some mutton head said to him that his ALS progression was slow because their prayer group prayed for him and they had a good success rate! Is it a competition, some sort of winner/loser kind of thing? Do I need to hire a better prayer group, one with a good success rate, so I can be relieved of this killer illness?
There are 8 other things you should never say to someone dealing with a chronic illness, or terminal illness. Check yourself and see if you know what they are, and if you have ever said them. Then, please, strike them from your lexicon. I don't need that shit. If you really want to be helpful, how about paying my mortgage for a couple of months?
Today another PALS online posted a thing about what not to say to someone with a "chronic" illness. It's a list of the kinds of crap that I hear often, the kinds of mindless things people say because they don't know what else to say, because their brains don't have the power to express empathy in any meaningful form. Some of these things piss me off so much, and so often I have to smile politely and pretend that the shit that just came out of someone's mouth is actually meaningful.
I think the biggest single one on the list of 12 is the one I write about so often; "but you don't look sick", or some other inane variant thereof, where people think that you only look sick if you look deathly. My favourite variant is "Other than the wheelchair, you look great." It's like saying to the dead person in a casket, "Other than being dead, you look great." Before you tell me I look great, ask me how I am feeling. Then you will know. If I feel great, then you get off scott free. If I feel shitty, which is pretty much how I feel all the time, then find some other mindless drivel to spew.
The next most annoying thing on this list of stupid things to not say is what I call the inane comparison. The list has "My friend has real bad back problems but he is still working." The variant that drives me crazy is when people say shit like "I broke my leg once and I was in a wheelchair for three months. It was awful." All I want to say back is "Well, dick-head, you seem to be walking just fine now, so walk right the fuck out of here" Your temporary time in a wheelchair is absolutely no comparison to my life sentence. You always knew you would get out; I know that I will never get out.
Coming in a close, but perpetually stupid third, is the advice about how I should change my diet, or take such and such a vitamin, or do some weird, fake, stupid fucking exercise program. Don't you get it, you dumb shit, that stuff doesn't help me! Just because your aunt's neighbor's cousin's dog's third owner got better by rubbing eucalyptus leaves on his testicles doesn't mean my ALS will slow down if I eat like a koala bear. For those of you who talk about "eastern medicine", look up good old Chairman Mao. He died from ALS. All the mystical shit you call eastern medicine didn't manage to help him.
Then there is special mention for "I am praying for you." I appreciate that a for a great many people, prayer is a self-calming and deeply internal spiritual experience. I appreciate that, for those who can do nothing else, this at least makes them feel like they are helping. My problem is the irrationality of it; why pray to a God for healing when it was this same God who gave me this disease in the first place? Pray for acceptance, pray for peace; sure, but healing? I think the prize winner for stupid responses in prayer goes to the PALS who first posted the list. Some mutton head said to him that his ALS progression was slow because their prayer group prayed for him and they had a good success rate! Is it a competition, some sort of winner/loser kind of thing? Do I need to hire a better prayer group, one with a good success rate, so I can be relieved of this killer illness?
There are 8 other things you should never say to someone dealing with a chronic illness, or terminal illness. Check yourself and see if you know what they are, and if you have ever said them. Then, please, strike them from your lexicon. I don't need that shit. If you really want to be helpful, how about paying my mortgage for a couple of months?
Thursday, 8 January 2015
Three Devices Mechanical
There is no doubt I love to travel; I've spent much of the last couple of years engaged in the exploration of places known and unknown, so much so that I have at times thought I was more using my apartment as a place to store my stuff than a place to live. On the other hand, in the perversity that is true within all of us, I love to come home, to that place where my stuff lives, where I can once again spend time with family and friends, once again enjoy my kitchen, once again settle into my familiar routine.
When I come home from a trip, there are three things mechanical that make a great deal of difference to me. Certainly the people I love and the routine I live is important; these three things mechanical, however, top my list of excitement when I roll through my front door. These three things mechanical make all the difference in my daily life. I miss them dearly while I am away.
First, and absolutely foremost, at the top of my list, is the M-rail on my bed. Hotel beds are the bane of my travel existence. They are too high, poorly placed, without adequate wheelchair access, and on and on. The simple expedient of my M-rail makes my bed, and would likely make a great many other beds, accessible. I will never say "easily accessible"; nothing works that way for me now. What I will say is that with a simple M-rail, so many other bed problems would simply disappear. I think I might start taking it on road trips, ready for use, riding along in the back of my truck.
The second mechanical device that makes my homecoming a joy is the bidet seat on my toilet. This wonder of modern cleanliness is the highlight of what is a normal, daily activity for all of us, or at least those of us with something resembling regularity. This mechanical treasure allows me to keep my posterior clean, something that is very difficult otherwise, given that it is constantly occupied with me sitting on it. When I am away, I must use "alternate methods" for this cleaning. I often find myself embarrassed at the soiled washcloths I leave behind for unwitting hotel cleaning staff. Then I remind myself that they have, almost to a certainty, seen much worse.
The third thing that makes homecoming worth doing, while it is certainly not the last, is something I try to find in hotel rooms where and when I can; a roll in shower with a proper shower seat and properly placed controls. This is so hard to find; most hotel staff and designers just don't understand the challenges of showering or toileting in a wheelchair. To come home, knowing with a certainty that I can clean up, is a delight.
Three things mechanical, and yet they make such a big difference in my life. Were they not here, my home would be a prison, a misery of struggle and uncleanliness. I love coming home to the people and routine in my life; I treasure coming home to my three devices mechanical.
When I come home from a trip, there are three things mechanical that make a great deal of difference to me. Certainly the people I love and the routine I live is important; these three things mechanical, however, top my list of excitement when I roll through my front door. These three things mechanical make all the difference in my daily life. I miss them dearly while I am away.
First, and absolutely foremost, at the top of my list, is the M-rail on my bed. Hotel beds are the bane of my travel existence. They are too high, poorly placed, without adequate wheelchair access, and on and on. The simple expedient of my M-rail makes my bed, and would likely make a great many other beds, accessible. I will never say "easily accessible"; nothing works that way for me now. What I will say is that with a simple M-rail, so many other bed problems would simply disappear. I think I might start taking it on road trips, ready for use, riding along in the back of my truck.
The second mechanical device that makes my homecoming a joy is the bidet seat on my toilet. This wonder of modern cleanliness is the highlight of what is a normal, daily activity for all of us, or at least those of us with something resembling regularity. This mechanical treasure allows me to keep my posterior clean, something that is very difficult otherwise, given that it is constantly occupied with me sitting on it. When I am away, I must use "alternate methods" for this cleaning. I often find myself embarrassed at the soiled washcloths I leave behind for unwitting hotel cleaning staff. Then I remind myself that they have, almost to a certainty, seen much worse.
The third thing that makes homecoming worth doing, while it is certainly not the last, is something I try to find in hotel rooms where and when I can; a roll in shower with a proper shower seat and properly placed controls. This is so hard to find; most hotel staff and designers just don't understand the challenges of showering or toileting in a wheelchair. To come home, knowing with a certainty that I can clean up, is a delight.
Three things mechanical, and yet they make such a big difference in my life. Were they not here, my home would be a prison, a misery of struggle and uncleanliness. I love coming home to the people and routine in my life; I treasure coming home to my three devices mechanical.
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