Yuk Yuk's

I'm excited. I'm going to a comedy show at Yuk Yuk's here in Calgary today. One of my friends called and offered me a ticket. The word "yes" fairly lept out of my mouth. I love to get out to this kind of thing, an activity I can't much afford anymore. This is a social activity, a time to enjoy laughter and light heartedness with a group of people I don't see often enough anymore.

There's another reason I am happy to get out. I had a friend over last night for a visit. As she was headed home, I commented on how much I enjoyed her visit, and how it would be my last human interaction until Sunday afternoon. Katherine is busy all weekend, including Sunday evening. My daughter, Katie is coming for dinner on Sunday evening, so she is the first person I would see, unless I managed to get out over the weekend.

I had nothing planned for this weekend. Getting out seems to be more and more difficult, especially since I can't afford to do a lot of stuff. I have to make choices about what I do, not just financially, but in terms of being with someone. In my situation, it is almost imperative that I have someone along with me these days. Since I had nothing planned, my plan was to stay home and do nothing.

I used to be a lot more social. I thought nothing of heading out to a group engagement with people I know. There is something happening almost every other day. The problem is that I feel like I am a burden in so many of these situations, that I will impact the ability of the group to do anything which requires some level of mobility. I can't go for a hike. I can't go play walleyball. I can't go to the zoo. All of these things require endurance and strength. I have neither, so I tend to stay home or do stuff with Katherine where I am sure she can help me.

So today is exciting on a number of fronts. I get to do something social. I get to be with friends I don't see anywhere near often enough. I get to be out of my apartment. I get to laugh. All in all, that sounds like a pretty good afternoon to me.

Anger Is An Option, Not A Requirement

Anger. It's such a waste of time, such a waste of energy. I see absolutely no value in getting angry or staying angry. I used to be different. As a young man I was filled with anger. As I aged and matured, I came to see anger for what it really was, a way of expressing power in attempt to get my own way.  I used to think that my anger was righteous, borne out of the frustration of an unfair situation or some measure of disrespect. What I have come to see, as the years have gone by, is that anger is more about fear, my own fears, than anything else.

I used to get angry at my ex-wife. She would do something which I thought disrespected me as a Husband and as a Father. I would lose my temper, yell, say outrageous things, all in an attempt to express my displeasure at her behaviour. Other times I would get frustrated at her passive aggressive behaviour, and this too would lead to anger. And then I would have to apologize for my anger.

My favourite was trying to get her out of the house on time when we were going somewhere. She always seemed to find something which needed to be done just as we were getting ready to leave. She would then tell me that we were late because I didn't help her when she was trying to get ready to leave. I didn't help her because I didn't know what she wanted done. In some cases, when I did try to help, the list simply got longer rather than shorter. So I got angry, went and sat in the car, and thus became responsible for our tardiness. I was the one who ended up apologizing.

What I didn't know is that my anger was really an expression of my fear. I was afraid people would look down on me if I was late. I was afraid my wife would get angry with me if I didn't help. I was afraid that no matter what I did, she would be unhappy and blame me for it. I slowly began to notice that all of my anger was really about me, about what I wanted, about my desires and demands not being met. It was all about me. Anger is a selfish response.

I've learned over the years. I'm not immune to anger. Sometimes the roots are too deep, the fear to base to question. Mostly, though, I look at myself as I begin to anger and ask myself it it's really worth it, if my anger has any value. Sometimes it actually does, but it is essential that I know why I am angry, what it is that I fear. I've also learned not to hang on to my anger. It's simply a burden I do not need. There are so many other good things in life which I can do with that energy.

I've also learned to recast some of the things which make me angry into things I am grateful for. For example, I could get upset because Katherine folds my laundry differently than I do. But instead, I rephrase that emotion; I'm grateful because Katherine folds my laundry. Or I could be angry because someone comes late to my dinner party. Instead, I am grateful that someone comes to my dinner party. Inside of every bit of anger is something to be grateful for, if I can only find it.

My anger is still problematic at times. There are things for which I must still apologize. Mostly I try to let the past be the past and do better in the future. Mostly I try to be slow to anger and quick to forgive, both myself and the object of my anger. I don't like being angry; I would rather be happy. These days I have so much to be angry about that if I didn't deal with it, I would be miserable. And as my brother, Adam, says, "Suffering in life is mandatory. Misery is optional." I choose not to be angry.

PWC Practice

Yesterday afternoon Katherine and I went for a walk. Actually she walked. I motored along with her using my power wheelchair. The PWC makes it so easy for me to pop over to the mall, wander along to the local park, or go for a walk with Katherine. The main thing the PWC cannot do is go with me in the truck. At some point I will have to come up with a solution for that; either a different vehicle or some sort of trailer or platform at the back of the truck. Both of these solutions, however, recognize that this will happen at a time when I can no longer drive.

When we got back from our walk, I decided to stay in the power wheelchair for the evening. I wanted to see what it was like to use the chair indoors, a kind of experiment to see which was easier, using the manual chair or using the power chair. My main goal was to find out what the capabilities and limitations are, since one day soon I will be spending most of my time in the PWC, rather than the manual chair.

Several interesting discoveries arose out of this experiment. First of all, it's more difficult to transfer to the couch, sufficiently more difficult that I didn't even try. The couch is very low and this chair is higher than my manual chair. So I spent the evening in the chair, while Katherine sat on the couch. I didn't like that; I prefer to sit on the couch with her cuddled up next to me.

Secondly, I found that moving around the apartment was just as easy as it is with the manual chair, with the notable exception of getting onto the balcony. I didn't actually try; it was easy enough to assess that situation without actually doing it. I might try it today, but I can see the challenges immediately. On the whole, however, the power chair is relatively easy to use indoors. As an added plus, the lift option on the chair allows me to reach most of my upper cupboards, and that's a real plus.

The third discovery was one of mixed blessing. My PWC has a tilt option; I can lean backwards a long way. This feature allows me to take the pressure off of my tailbone, relieving the pain that is with me virtually all the time when I sit, which I do pretty much all day. On the other hand, leaning back makes it more difficult to operate the remote for the TV and Blu-Ray player, defeating my recent purchase of a new TV stand, unless I am in the standard, or near standard, seated position.

Fourth, we discovered that the transfer on and off the bed is substantially easier. When I went to bed, I parked the power chair beside the bed, raised it to a matching height, and simply slid sideways. The transfer in the morning was mostly the same, the only real difficulty coming from my skin sticking to the board, something which happens either way, and from my testicles snagging on one of the leg catches, something I noticed and adjusted for rather quickly.

The last major observation is the most inconvenient. I cannot easily transfer from the PWC to the toilet. The transfer onto the toilet requires a drop of about 3 inches. I can make that work for me. The transfer back requires a lift of that same 3 inches, something I clearly cannot do. Katherine and I discussed various options, including getting a portable lift system or perhaps putting a permanent mounted lift in the bathroom. In the end, we decided that transferring to my manual chair for my morning ablutions would likely be my best option.

All of this experimentation is predicated on one basic acknowledgment. I am getting weaker in my arms. At some point, not too soon I hope, I will be unable to easily wheel myself around my own apartment. I'm already noticing reluctance on the part of my arms to do so. At some point, not too soon I hope, I will have to use my PWC, even at home. So I need to learn about it now. I need to be ready for that day when ALS changes my life once again.

Weather Or Climate Change

One of my friends refers to my ALS as being like the "weather versus climate change" conflict. Simply put, any individual change in weather does not imply a climate change. Weather change is a localized concept; climate change is a systemic concept. What he is saying is that some of my aches and pains are like the weather; normal, expected with aging and life. Others of my aches and pains are like climate change; systemic, caused by ALS.

I've been dealing with loss of strength in my left arm and shoulder for a while now. This is clearly ALS related. It's long lasting and progressive. I am getting persistently weaker in my left arm, and my left shoulder is in consistent pain from overuse. My deltoid, trapezoid, tricep and bicep muscles are all fully engaged with ALS. There is no doubt; this is climate change, a systemic issue.

On the other hand, the muscles in the side of my neck have been sore and tired for the last week or so. The major muscle is the levator scapulae. These are the muscles which hold my head upright. I've noticed that later in the day it really helps to rest my head, either on my couch while slumped deep into the cushion, or while in bed with a pillow neath my head. The soreness and sense of overwork in the muscles in my neck starts as soon as I get up, and stays with me all day.

I don't know for a certainty that these muscles are weakened due to ALS or if some other process is at work. My money, as always, is on the big beast. If not today, if these muscle aches are something else, if this is just weather and not climate change, then eventually it will become ALS. All I have to do is wait. That's just the way it is.

From Person To Patient

There are times, with this disease, where I want to just scream, times when I want to just yell and stamp my feet in a child's temper tantrum. But I can't, not least because my legs no longer move. In reality those times of temper are often tempered by the realization that getting mad, shouting, crying, screaming, and whatever else I might do will help nothing, change nothing. It's simply an expulsion of precious energy for little or no good return, not even catharsis.

Last night, as I made my way to bed, I had one of those moments, a slice of time where I was plain and simply angry about my situation. Internally I demanded answers to stupid questions. "Why me? What did I ever do to deserve this? What did I do that was so wrong for God to punish me this way?" Of course I lack the energy to scream these pronouncements out loud, and the rending of cloth is far beyond my level of strength.

It's hard not to have these times with this disease, these moments when I am overwhelmed by what is gone from my life, what I have lost, that which I can no longer do. It's not hard at all, to roll into a self-pity party and let it wash over me like ocean waves. All I have to do is think about where I was a few years ago, and where I am now.

Usually these moments are triggered by an event. Yesterday it was a visit with the Home Care Nurse, and two discussions. The first was what I would do when Katherine goes out of town later this month on her visit to Hong Kong. Ultimately we decided I needed more home care, and arranged for someone to come in, make sure I was up, and make me some breakfast on those weekdays when I don't have exercises. So while Katherine is travelling, I will have a Home Care Aide in on Tuesday and Thursday mornings.

The other discussion was somewhat more challenging. We discussed the possibilities of me entering a long term care facility, or perhaps an assisted living facility. Lots of other people think this is a good idea; not me. While the option of going into a facility would likely be financially better for me, I would lose so much of what I love about my life. No parties, no winemaking, far less social life. I would move from being a person to a patient.

I'm told that there might be ways to make an assisted living facility work for me. I hate the idea; I want to die here in my apartment, here at home. The assisted living facility might actually improve my quality of life, but it would destroy my will to live. On the other hand, I would be a fool if I didn't investigate, if I didn't get all the information. Who knows? I might be wrong. But I don't like the idea. It's just another thing this disease will steal from me, my independent living.

Patio Life

I moved into my apartment in October, 2012. I could still walk, albeit with a cane. My apartment, at that time, was definitely not wheelchair friendly. At that time I didn't think I would ever need a wheelchair. About 5 weeks after moving in, I was diagnosed with ALS; it's hard to imagine that it all happened that quickly. Just a few months later, I was in a wheelchair, never to walk again.

When I moved into my apartment, one of the things which was of modest interest to me was the small balcony. It was cold and wintery when I moved in, so I figured I would use it in the spring and summer of the next year. Unfortunately by the time the weather had improved sufficiently to allow for patio life, I was in the wheelchair. The small balcony on my apartment has a large step to get over before you access it. The balcony itself is barely wide enough for wheelchair access. So I gave up on the idea.

Over the last few years I've tried different methods to access my barbecue, set up as it was on the balcony. Once or twice over the years I've tried placing it in the doorway, so I could cook on it without leaving the living room. A few other times I've had other people do the cooking while I looked on from inside. But all of that stopped a couple of years back. I just gave up. It felt like way too much trouble to access the small balcony and cook on the barbecue.

Then, this weekend, a bunch of my friends came over to bottle wine, and cook dinner. We had decided to have a hot dog party. Now understand that a hot dog party entails a lot more than a few wieners and buns. We had a ton of food, as is usual for my parties. The guys in charge of food preparation decided they wanted to use the barbecue to do the hot dogs. So one of them cleaned it up, and tided the balcony, and then cooked all the sausages outside.

I sat there and watched the whole operation, and suddenly thought to myself, "I could probably get out there if I really wanted to." I thought about what would be needed and realized it was almost nothing. All we really had to do was clear away the patio chairs which blocked my turning radius, and move the barbecue back a few feet to give me more room to turn. The biggest problem would be a small table to hold my coffee, or wine, or beer, or lunch.

Yesterday, that's exactly what Katherine and I did, although she did most of it. She moved the chairs and barbecue, then cleaned the floor. That's when I rolled into action. I found that I could still pop my wheelchair up enough to get it over the sill, and with a small amount of effort I could turn sideways. There I was, sitting on my balcony, enjoying the sunshine. We even cooked salmon on the barbecue for our dinner guests, and ourselves too.

It's easy for me to get locked into a place where I think things are just too difficult, just too much effort for too little reward. When I moved in here, it was winter; no balcony. When I went in the wheelchair, there was too little reward; no balcony. Then Katherine came along, helped me out, and encouraged me to make the effort. Suddenly a whole new way to enjoy the sunshine and outdoors is open to me. ALS will eventually take this away from me for real, but not right now. I'm going to enjoy that balcony while I can.

Unready To Wear

I have a uniform which I wear, a set of clothing that works for me. My required wear is, of course, my underwear; I prefer boxers. The next requirement is my compression socks. Thus I only wear black socks, because that is the colour I can get. Either that or some ugly beige that is supposed to resemble some sort of flesh tone for a broad cross-section of a multi-racial population. The top layer consists of blue jeans and either a polo style short sleeve shirt for warm days or a similar style long sleeve shirt for cold days.

There are three reasons for choosing this clothing plan; durability, flexibility, and simplicity. In terms of durability, jeans take a real beating, and my clothing can get pretty beaten up. Since most of my hand work is just above my lap, almost every activity from eating to doing the dishes involves some level of spillage onto my pants. I need pants which can go through a lot of washing machine cycles. In addition, transfers are hard on my pants as either Katherine or I am pulling on them somehow. Jeans can take it, so I wear them a lot.

The other nice thing about jeans is that they are accepted wear almost everywhere these days. If I am going to a show or a nice restaurant, blue jeans with a nice dress shirt can work for me. If I am going out shopping, blue jeans and my standard shirt will work for me. They are comfortable for long travel days, and mostly, somewhat easy to get on and off when I dress, although that is getting harder all the time.

Then there is simplicity, and a pull-over style shirt is the simplest thing going when it comes to getting dressed. Just pull it on and there you go. No buttons. In all of my dressing efforts, slipping on a shirt is the easiest thing to do. So this wardrobe is maintained, updated regularly as I ruin shirts and jeans along the way.

But every once in a while, I like to dress up. Today Katherine has invited friends over for dinner. This is something she does rarely. In fact the only other people she has ever invited to my place has been her sister and brother-in-law. So today is a first. For this, I wanted to put on a nice pair of dress pants and a nice, casual shirt. I grabbed same from the closet.

This is the moment I realized that I hadn't worn these pants for several month, nor this shirt since last summer. Since then, my body shape has changed substantially. The dress pants are now about 4" too small and the nice shirt barely holds in my belly, bulging at the gut, straining the buttons so they look like they are going to pop. I tried, but I gave up. It just wouldn't work.

While my weight has changed only a little since last fall, only a few pounds, my body continues to slump south, with all of my fat ending up around my belly. Pants which once fit, fit no longer. Shirts which were once loose are loose no longer. I am going to have to get rid of all my dress pants and start over, only this time with only one or two pair. Mostly I am going to stick with blue jeans and a shirt. It works, and they still fit.