Another Broken Glass

People wonder sometimes why I am so picky about where dishes go in my cupboards. Be they Home Care Aides or friends helping clean up, the placement of dishes in the cupboards makes perfect sense to me, but little sense to anyone else. That's because my dishes are placed in such a way that I can reach the ones I need the, most easily.

For example, I have a small metal stand on my counter. Beneath I have four coffee cups, the ones I use day in and day out. They are easy for me to reach. On the top part of that little shelf, I keep stuff for making espresso, along with one tall glass and one short glass. If I want a cappuccino, all the tools are right there. If I want a glass of Scotch, the glass is near at hand. If I want a tall Rum and Coke, the glass is near at hand.

If I want anything more than these basics, it is most likely because I have company, people who can reach into shelves. So coffee cups, tall glasses, short glasses and such are all kept on the second shelf of my corner cabinet, where reaching them is awkward for me without the aid of a grabby stick. The first shelf is reserved for wine glasses and cappuccino cups. I have lots of wine glasses but only four of the bowl type cappuccino cups, and they are all within easy grabby stick reach.

The same with plates. The plates I use most are on the first shelf of the cupboard. The bowls and matching coffee cups are on the second shelf. I rarely use them for myself. If there is company, they can help get dishes. That pattern, ease of access and probability of use drives all my cupboard placements. If I don't use it often, it goes up. If I use it often, it stays down.

With pots and things in the lower cupboards, it's not such a big deal. I want to avoid using the lower shelves if I can. Fortunately all of my lower shelves slide out, making getting at things a lot easier. The only exception is the Lazy Susan in my corner cupboard. Once again I try to keep oft used things like salad and mixing bowls on the top shelf. Roasters, the slow cooker and rice cooker, and my stock pot all go on the bottom. I can get them if I need them, which is not all that often.

There is a price to all of this, and today I paid that price. My new Home Care Aide, not understanding the placement of things, put my Scotch glass on the second shelf with all the other drinking glasses. She put my wine glasses up there too. Then she put my daily coffee cups on the first shelf. I was not there to micro-manage things, so they ended up in the wrong spots.

When I came into the kitchen to resolve this state of disarray, I got the coffee cups without issue. They were, after all, one the first shelf and easy to get with the grabby stick. On the other hand my Scotch glass was on the second shelf. I grabbed it with the stick, lifted it from the shelf, and promptly dropped it. The glass shattered when it hit the counter, spewing small shards of glass all over my kitchen.

I did my best to clean it up. I got the other glasses organized without disaster. But now I am short another glass, and a Scotch glass at that. Now I have to buy more Scotch glasses. So aside from the physical and emotional effort of arranging my glassware and breaking it, there is an actual real dollar cost here. So don't give me shit if I micro-manage. You probably don't get it. You probably don't know all the reasons. And I'm tired of constantly having to explain myself all the time.

Energy Transfer

Like most people, I worry about a decent energy transfer program. Only mine is not about fossil fuels. I need an energy transfer program to transfer energy from my good days over to my bad days, days like today when I feel exhausted and shaky.

It is inevitable for me that a good day will be followed by a bad day. Lately I am having longer bad day periods between the good days. It's important to recognize that these are not emotionally or psychologically bad days; they are days where my energy level is low, where I have trouble getting started with my day and even more trouble keeping it going.

The usual pattern is that I have a good energy day, a day where I slept well the night before, a day where I feel physically capable. Then, the next day, as in today, I have a tough time waking up, a tough time getting going, and feel all day as if I could just go back to bed. These low energy days will continue, usually for a couple of days, before I build up the energy once again to have a good day.

I've tried various things to see if I can modify this pattern. I've tried going to bed early on a good day, but I find I cannot sleep and need a Zopiclone, which some days doesn't work at all. I've tried cutting back on energy consuming activities like going to Trivia or shopping. That doesn't do much except cause me to miss out on things important to my life. The energy doesn't carry over.

What I do find is that when my Home Care Aides come and get me up, I can get more done. It seems as if having the option to sleep causes me to sleep more, even though I have plenty of low energy days on HCA days. The ideal combination is like yesterday, where I get a bit of extra sleep, where I have a high energy day, and where the HCA helps kickstart if for me. I look forward to those kinds of days. Those are the days where I get things done.

A Video About Being Happy

It's funny how the little things can make for such a nice day; an extra hour of sleep, a night without peeing on myself, a clean kitchen, a kind word from a friend. So many things, none of them particularly giant in an of themselves, add together to give me a good feeling about today, a good feeling about being alive.

I thought I would try another video blog, another way to tell this story, the story of my life. I know that some of you will have trouble with the codec, that some platforms won't play an MP4 from Windows without an installed interpreter. I'm not sure what to do about that. Please forgive me if you cannot view the video. I promise to go back to writing tomorrow. After all, I love the written word so much more.

A Time For Leaving

It's quiet in here, in my little apartment. Chris has gone; he left this morning at 8:30 AM, but not without me getting out of bed to have a cup of coffee and see him off. I stunned myself with that exertion. Immediately upon his departure I went back to bed, staying there until 2:00 PM. It doesn't matter though. Without him here, my place has gone quiet, not that he was noisy at all.

I can actually feel the presence of others in my home, know that they are there by the micro-sounds we all make, the tiny clink as they get a cup for coffee, the air that whooshes out of the cushion when they sit down on the couch, the squeak in the laminate as they walk from bedroom to kitchen. It is those sounds, the quiet sounds of activity and life which make a hollow apartment into a home.

My own sounds do that too, although not in the same way. I can hear the keys on my computer softly clicking as I write this blog, the creak in my wheelchair frame whenever I try to shift position. I can smell the coffee, see the shadows, hear the million small sounds of life alone. Yet even with all of this, my apartment feels so empty when someone leaves me after a visit. I have to get used to once again being alone in this space, this container holding the cargo of my life.

Of course this sense of aloneness, of solitude, will disappear quickly today, gone in a moment, just as Chris was here and gone but for two nights and a day. It will go because I will go, out to the mall for groceries and medications. It will go because Kate will come for dinner. If I am alone, it's rarely for long, and mostly at night.

I like having people around me. I live through the lives of others, as if I was some sort of vampire, my sustenance only found by drawing on the energy and life of others. I am an extrovert, well out the scale. I was thrilled when Chris came, thrilled with the time he spent with me, and sad when he had to leave. This is life, written large and written small. We come into one another's lives, we enjoy that which we can in this time together, and we leave, either willingly or not.

What is happening to me is predictable. As I said to Chris, "Don't wait too long for the next one; I won't have many more of these." I was talking about weekends where I would be alive, functional, capable of having guests. At some point I will leave, either willingly or not. We all do.

Hangover

If I am being open and honest about my life, then I have to admit that today I have a hangover. This is a rare and unusual experience for me. I simply cannot remember the last time I woke up feeling this way, with a headache, with a mouth that feels like it is full of cotton, with my body feeling like it is rejecting me. I am channeling my Dad with that last statement; he responded to his many hangovers with that statement.

Of course the cause of this is alcohol, in the form of a wonderful bottle of Scotch. Yesterday my friend Chris Gordon arrived from Vancouver and took me shopping at my favourite liquor store. Actually he didn't take me in; I stayed in the truck. He knows well what I like, and he bought it for me. I, being the greedy, uncontrolled person that I am, drank half of the bottle last night. Happily enough, Chris helped with the other half.

Unfortunately his flight arrived late, so we got a late start to our evening of story telling, Scotch drinking, and general hijinks. Fortunately I neither burst a catheter nor spilled a drop. So here I am, shaking, not knowing if it's the hangover or if it's ALS. I know I shake pretty good when I don't have a hangover, so the shaking I will ascribe as normal. The rest of me is in rebellion internally.

Even this is a good thing. I am still here. I can still tie one on. I can still sleep one off. I am still functioning today. This hangover is a reminder that I have not lost everything in my life. I know it's hard to think of a hangover as a good thing, but it seems to me that I can still do it, and that is a good thing. Whether or not I should do it is a subject of some debate. I leave that to the morality of others. For me, I am up and about, feeling like shit dragged over a log, unable to get my head to stop pounding, desperately needing another cup of coffee. Ain't it grand!

Trouble Breathing

I wish, just once in a while, good news could stand on its own, and just be good news alone for a while. Unfortunately with ALS, this is virtually impossible. While I had good news yesterday, it was tempered with the realization that I am entering a new phase of my illness, and have been slowly entering this phase for a couple of months. Remember, with ALS, nothing is easy, nothing is fast. It's all slow and difficult.

Breathing is the issue slowly arising in my life. It's not that I can't breath; it's that I run out of breath so much more quickly than I have in the past. It used to be that I ran out of breath with heavy activity, things like dressing, or taking a shower, or moving things about. Then I started to run out of breath with simple activities like rolling my wheelchair over carpet, or preparing a meal. It's getting worse.

These days I find myself running out of breath for no reason at all, or for what seems like no reason at all. For example, if I am in a conversation on the phone, I tend to run out of breath. For that matter, any conversation can cause me to exhaust myself, cause me to run out of breath. Sometimes I run out of breath just sitting here doing nothing. It's not that I cannot breath; it's that the results of breathing don't seem to be meeting the requirement.

This transition is a signal. It's hard to stay alive when you are having trouble breathing. Right now it's not an all the time thing. A while ago it was a once in a while thing. Now it's a more often than not thing. When it becomes an all the time thing, that will be a marking point, a place where I am compelled to decide. For now, it's annoying. I can manage it by managing my exertion, be it emotional or physical. I can control it by not engaging in significant effort, either in activity or in speaking. Eventually though, it won't matter. Eventually, sooner rather than later, I will stop breathing.

My Last Financial Asset

This is probably the latest blog entry I have written in a very long time. The reason is very simple; I've been busy and on the go since first getting up today. The busy and on the go has all been about making banking arrangements. I am changing where I bank as well as setting up a US funds deposit account.

I've had the same email address for 26 years, since 1990 or perhaps 1991, I can't remember for sure. It's been a very long time. I doubt there are many others who can say that they have had their internet address remain the same for as long. The reason for this is simple. I own the "RAMA.COM" domain. When you have an email address, the first part is your name, or identifier. The part after the "@" sign is the domain. Most of you have an address with Google or Microsoft or something like that. Their domain hosts your email account. I, one the other hand, have hosted my own email domain for all these many years. Until now.

My last remaining financial asset was RAMA.COM, the domain name. A few weeks ago one of my blog readers contacted me and offered to buy the domain from me. I declined. My feeling was that the domain name was only worth a couple of thousand dollars at best. I wanted to leave it for my son, as a reminder that I once was here. Then the contact made an offer a bit higher that what I expected.

At that point I decided to do my research. Ultimately I ended up listing the domain name with a domain broker, a fellow in Germany with a company called SEDO, who would auction off the domain name to the highest bidder. That auction completed this morning, and I found myself in the position of needing a US funds account for the transfer from Europe. I have decided to keep at least half the money in US dollars, a kind of travel fund for going south. The other half will be used to supplement my income over the next year or so.

I am not sure how long I will live. It may be a year, or two. I don't think it will be much longer. The pleasant thing is that this domain name sale will relieve me of some financial pressure during this time, adding enough to my bank balance that I will no longer be constantly short of money. The downside, and there is always a downside, is that I cannot leave this memento to my son, nor will I have my email address any longer.

This was my last financial asset. It has now been converted to cash so I can live. I'm not happy about that, but I am very happy to have the money.