I've set up my team site. I've sent out emails to everyone I know. Friends have already started to make donations. With all of this underway, I thought it might be time to share a little bit about Betty's Run for ALS, and what it means to me.
First, there is Betty; Betty Norman. Here is what the run site has to say about her. "Betty Norman was a very active 58-year-old Calgary woman when she was diagnosed with ALS in August of 1996. Betty's courage and determination to make a difference that year was the driving force behind the June 1997 "This One's for Betty" walk/run. Sadly, Betty passed away in her home within 11 months of her diagnosis and two weeks after the event that she inspired took place."
As with all things such as this, the story behind the story is the real story. When Betty was diagnosed, her constant friend, Jane Rivest, was with her, and stayed with her. Jane spent one day each week with her early in the process. Then, as the end approach, Jane was her full time care giver for the last four months of Betty's life.
Jane is also the moving force behind Betty's Run. She and a group of friends got together to start Betty's Run. Unfortunately Betty would only ever get to attend the first one; she died shortly thereafter. Since that first one, Jane has been at every run, organizing, helping, supporting, cheering people on. Jane is the angel, the spirit which continues on for Betty.
This year the ALS Society of Alberta hopes to raise nearly $500,000 with this effort. It's a month away and they've already raised over $60,000 of that goal. My personal goal was to raise $500, which happened very quickly. Then I reset it to $1,000, a goal which was achieved over night. I will change my goal to $2,000 today.
My team goal, my target for Team Terrific, is $10,000. I reality it would be wonderful to raise some audacious amount, something like $50,000 or perhaps even $100,000. But have neither the energy nor capacity to do what it takes to reach that many people. If Team Terrific can raise even close to $10,000, I will be very pleased.
There is a link at the top of the right hand column of this blog. If you feel moved to donate, just click that link. You can donate in my name, or in the name of Team Terrific. Either way, it will help me and many other PALS, through direct aid, through support, through research. And believe me, PALS and CALS need all the help we can get.
Saturday, 14 May 2016
Friday, 13 May 2016
14 Hours
It's amazing the difference that 14 hours of sleep can make. Last night, after dinner, Katherine and I were sitting on the couch. I was dozing off, something that happens often around dinner time. Suddenly she sat up, looked at me, and said "You're going to bed". This was a different kind of dozing off; we both knew it. So she helped me with the transfer from the couch to the wheelchair, a task I likely would not have done without her help, something that would have resulted in me spending another night sleeping on the couch.
Once in my wheelchair, it was off to bed, at 7:30 PM. I fell asleep almost immediately, waking once or twice before she got me up to take my evening pills. I fell asleep again. The next thing I knew it was 9:30 AM, a full 14 hours after I went to bed. Even then, I didn't get up. Home care was coming at 10:30 for my exercises and shower. So I just stayed in bed, dozing off and on until the HCA arrived.
What surprises me is not the amount of sleep as much as it is having that much sleep in a contiguous pattern. My "normal" sleep requirements these days run between 10 and 12 hours a night. Typically I get around 10 at night, and then I take a nap during the afternoon, either before dinner or after. Sometimes I sleep as little as 8 hours a night, but then I really need that nap.
My exhaustion over the last couple of days is probably a combination of not enough sleep, too much activity, and the vagaries of ALS. It hasn't been a depressive period, witnessed by the fact that Katherine merely had to walk through the door to improve my mood. Nor was it completely an exhaustive period; I was napping and taking it easy as much as I could. It was just one of those things.
These Rip Van Winkle days happen every once in a while. Sometimes I just need more rest. Sometimes I don't really know why, or can't really pin it down. It just comes on, and wears me out. Then I collapse in a comatose of tiredness. The really sad part is that when I wake up, I don't really feel refreshed. Certainly my energy level is up, a bit. It's the tiredness, though. It never really goes away. Even now I can feel it.
Once in my wheelchair, it was off to bed, at 7:30 PM. I fell asleep almost immediately, waking once or twice before she got me up to take my evening pills. I fell asleep again. The next thing I knew it was 9:30 AM, a full 14 hours after I went to bed. Even then, I didn't get up. Home care was coming at 10:30 for my exercises and shower. So I just stayed in bed, dozing off and on until the HCA arrived.
What surprises me is not the amount of sleep as much as it is having that much sleep in a contiguous pattern. My "normal" sleep requirements these days run between 10 and 12 hours a night. Typically I get around 10 at night, and then I take a nap during the afternoon, either before dinner or after. Sometimes I sleep as little as 8 hours a night, but then I really need that nap.
My exhaustion over the last couple of days is probably a combination of not enough sleep, too much activity, and the vagaries of ALS. It hasn't been a depressive period, witnessed by the fact that Katherine merely had to walk through the door to improve my mood. Nor was it completely an exhaustive period; I was napping and taking it easy as much as I could. It was just one of those things.
These Rip Van Winkle days happen every once in a while. Sometimes I just need more rest. Sometimes I don't really know why, or can't really pin it down. It just comes on, and wears me out. Then I collapse in a comatose of tiredness. The really sad part is that when I wake up, I don't really feel refreshed. Certainly my energy level is up, a bit. It's the tiredness, though. It never really goes away. Even now I can feel it.
Thursday, 12 May 2016
I'm Afraid
I'm afraid. Or at least I was until Katherine walked in. Now, not so much.
Last night, after spending the afternoon and dinner with my daughter, Kate, I did some work on scheduling for the next few weeks, and then set up my donations page for Betty's Run. It actually took me quite a while, as I also emailed a bunch of people and posted to Facebook about Betty's Run. After I was done, I decided I would have a Rum and Coke, or perhaps two, and watch some Netflix.
I gathered up my supplies, including the required jug. I also got out some chips and a mug of water. One must be prepared. I transferred out of my wheelchair and onto my couch, a difficult enough transfer but one which I can still do. Once there, I settled in for what I thought might be a couple of hours of watching TV and enjoying a beverage.
Eventually, after watching for longer than planned, something I almost always do so perhaps I should just plan for longer, I started to get sleepy. However something happened to me. My willingness to make the difficult transfer from couch to wheelchair simply wasn't there. It was as if I had given up, seeing the move to the wheelchair as not worth it. I just didn't want to do it.
So I slept on the couch. All night. Until 11:45 this morning.
What worries me, what makes me afraid, is that even then, even when I awoke this morning, I didn't want to make the move, to put out the effort, to get off the couch and into my wheelchair. I am afraid that I might be giving up, just a bit at a time. I am afraid that I am at that point where I willingly give things to this disease rather than forcing it to take them from me. I am afraid I am losing my strength of spirit, along with the strength in my body.
When Katherine came in the front door this morning, my mood and energy level changed almost immediately. In the wisdom that is hers, she did not demand that I get up, but instead asked me how I felt. She did not insist I sit up, but instead fed me a few pieces of the thinly sliced beef she makes. She did not force me to rise, but instead offered me her hand to help pull me up, and then helped me transfer to my wheelchair.
She knows it is getting more difficult. I know it is getting more difficult. Without her walking in my front door today, I would likely still be on the couch. That's why I am afraid.
Last night, after spending the afternoon and dinner with my daughter, Kate, I did some work on scheduling for the next few weeks, and then set up my donations page for Betty's Run. It actually took me quite a while, as I also emailed a bunch of people and posted to Facebook about Betty's Run. After I was done, I decided I would have a Rum and Coke, or perhaps two, and watch some Netflix.
I gathered up my supplies, including the required jug. I also got out some chips and a mug of water. One must be prepared. I transferred out of my wheelchair and onto my couch, a difficult enough transfer but one which I can still do. Once there, I settled in for what I thought might be a couple of hours of watching TV and enjoying a beverage.
Eventually, after watching for longer than planned, something I almost always do so perhaps I should just plan for longer, I started to get sleepy. However something happened to me. My willingness to make the difficult transfer from couch to wheelchair simply wasn't there. It was as if I had given up, seeing the move to the wheelchair as not worth it. I just didn't want to do it.
So I slept on the couch. All night. Until 11:45 this morning.
What worries me, what makes me afraid, is that even then, even when I awoke this morning, I didn't want to make the move, to put out the effort, to get off the couch and into my wheelchair. I am afraid that I might be giving up, just a bit at a time. I am afraid that I am at that point where I willingly give things to this disease rather than forcing it to take them from me. I am afraid I am losing my strength of spirit, along with the strength in my body.
When Katherine came in the front door this morning, my mood and energy level changed almost immediately. In the wisdom that is hers, she did not demand that I get up, but instead asked me how I felt. She did not insist I sit up, but instead fed me a few pieces of the thinly sliced beef she makes. She did not force me to rise, but instead offered me her hand to help pull me up, and then helped me transfer to my wheelchair.
She knows it is getting more difficult. I know it is getting more difficult. Without her walking in my front door today, I would likely still be on the couch. That's why I am afraid.
Wednesday, 11 May 2016
I Can't
There's a lot of "I can't" in my life. I can't walk. I can't go for a stroll on a beach or the riverbank. I can't hop out of bed, throw on something to wear, and rush out to have an early morning coffee with a friend. I can't make my own bed. I can't stand up to go pee. I can't pick up a box of wine. I can't... I can't... I can't...
Now before anyone says "there's lots of things I can't do", just think about this. Is it that you can't do them, or that you make choices which limit your ability to do them? Even though there are many things I can't do, I admit freely there are things I don't do, simply because doing them would limit my ability to do others things, or because doing them takes too much effort, or because I can get someone else to do it for me. For example, I say I "can't" unload my own dishwasher. This isn't precisely true. I can unload it, only the effort is exhausting and the reach is risky. I don't do it, if I can avoid it, simply because it's too much, and I can get someone else to do it.
I hear from a lot of people about things they "can't" do. I get angry sometimes when I hear them. It's not that they can't. It's that they choose not to, so that they can do other things. They use their choices as limiting language. I can't do this because I am doing that. What they should be saying is that I won't be able to do this, because I am already doing that.
The other thing I hear is people telling me I should focus on what I can do, and not worry about what I can't do. That's a pile of bullshit, especially when it comes from someone who suffers from none of my limitations. It's like people saying I should think more about what I have and less about what I have lost, when they have lost nothing themselves, at least not like I have.
This is not to say that there is not loss in the lives of others. It is to say that each of us has a different path, with different losses and different choices. So before you try to tell me to think more about what I can do, and less about what I can't do, take a moment to reflect on my situation. Remember that what I can't do is quite literal, not a choice, but a complete limitation. And it's a list which grows longer every day. When I say "I can't", it's a statement of fact, not a reflection of choice. And I am getting pretty tired of it.
Now before anyone says "there's lots of things I can't do", just think about this. Is it that you can't do them, or that you make choices which limit your ability to do them? Even though there are many things I can't do, I admit freely there are things I don't do, simply because doing them would limit my ability to do others things, or because doing them takes too much effort, or because I can get someone else to do it for me. For example, I say I "can't" unload my own dishwasher. This isn't precisely true. I can unload it, only the effort is exhausting and the reach is risky. I don't do it, if I can avoid it, simply because it's too much, and I can get someone else to do it.
I hear from a lot of people about things they "can't" do. I get angry sometimes when I hear them. It's not that they can't. It's that they choose not to, so that they can do other things. They use their choices as limiting language. I can't do this because I am doing that. What they should be saying is that I won't be able to do this, because I am already doing that.
The other thing I hear is people telling me I should focus on what I can do, and not worry about what I can't do. That's a pile of bullshit, especially when it comes from someone who suffers from none of my limitations. It's like people saying I should think more about what I have and less about what I have lost, when they have lost nothing themselves, at least not like I have.
This is not to say that there is not loss in the lives of others. It is to say that each of us has a different path, with different losses and different choices. So before you try to tell me to think more about what I can do, and less about what I can't do, take a moment to reflect on my situation. Remember that what I can't do is quite literal, not a choice, but a complete limitation. And it's a list which grows longer every day. When I say "I can't", it's a statement of fact, not a reflection of choice. And I am getting pretty tired of it.
Tuesday, 10 May 2016
I Can Still Drink The Wine
Wine making is, for me, just as much about making the wine as it is drinking it. Way back in the beginning, when I started making wine about 20 years ago, it was about getting a nice bottle of wine at a decent price; it was more about having the wine than making it. Fortunately back then I was in BC, where you could use a "u-brew" shop which would look after all the stuff in between initial ferment and final bottling.
Over the years I learned a fair bit about the process. That's because here in Alberta there are no "u-brew" shops; the law is different from province to province. In BC, the law deems that the act of putting in the yeast is what makes the wine. After that, you can keep the fermentation process going anywhere you like. And the act of bottling finished the process, so you are required to do that. On the other hand, here in Alberta the complete process is considered wine making, so you have to do it all in your home.
I don't care. Either way I like the process. It seems simple and pure to me. You start with grapes, or grape concentrate, and you end up with delicious wine. All the stuff, the gear, the equipment, the oak, the additives, all make sense to me. I can see why you need them. I understand what they do. I know what they are needed for.
For other people, those not inducted into the mystery, it all seems confusing, the different containers, the way I insist on sterilizing things, how I handle the wine, the racking processes. So many people who try it end up disappointed because what seems like an easy process can be difficult at times, especially if you don't stick to the directions carefully.
I know what it takes. I like what it takes. And I love that I can still do it, if not directly, then with the help of Katherine and others. I like that I can still create, that I can still make something even when trapped in my wheelchair. I can't lift the carboys but I can still manage the siphon. I can't do the bottling but I can still manage the labels. And of course, I can still drink the wine. I'll be able to do that long after I can no longer make it.
Over the years I learned a fair bit about the process. That's because here in Alberta there are no "u-brew" shops; the law is different from province to province. In BC, the law deems that the act of putting in the yeast is what makes the wine. After that, you can keep the fermentation process going anywhere you like. And the act of bottling finished the process, so you are required to do that. On the other hand, here in Alberta the complete process is considered wine making, so you have to do it all in your home.
I don't care. Either way I like the process. It seems simple and pure to me. You start with grapes, or grape concentrate, and you end up with delicious wine. All the stuff, the gear, the equipment, the oak, the additives, all make sense to me. I can see why you need them. I understand what they do. I know what they are needed for.
For other people, those not inducted into the mystery, it all seems confusing, the different containers, the way I insist on sterilizing things, how I handle the wine, the racking processes. So many people who try it end up disappointed because what seems like an easy process can be difficult at times, especially if you don't stick to the directions carefully.
I know what it takes. I like what it takes. And I love that I can still do it, if not directly, then with the help of Katherine and others. I like that I can still create, that I can still make something even when trapped in my wheelchair. I can't lift the carboys but I can still manage the siphon. I can't do the bottling but I can still manage the labels. And of course, I can still drink the wine. I'll be able to do that long after I can no longer make it.
Monday, 9 May 2016
Food Bank
I am on the ragged edge of financial disaster each and every month. My mortgage, condo fees, taxes and utilities take up almost all of my disability and AISH cheques each month. Without the help of Katherine and others, I would have no food in my cupboards at all, let alone the wine I love to make and drink. The truth is that I run about $500 to $1,000 short each month, depending on expenditures.
In order to make this all work, I depend on Katherine for help, and I have been skipping my condo fee payment since the beginning of this year. This means I now owe $2,500 in overdue condo fees. This ignores completely the money I owe on credit cards. It's a pretty rough ride right now.
Rock bottom is now at hand. Today I met with a social worker regarding resources to help me keep going. It appears that it is now time for me to start using the Food Bank. The objective in this is to make me less dependent on Katherine and others for my food needs. Given my situation, I certainly qualify for access to the Food Bank, but I have to say, it is truly hard on me emotionally to have to make this step.
I spoke with the social worker about how this made me feel. I said I thought I could keep going, depending on the kindness of family and friends. She encouraged me to take advantage of the food bank so that money now spent on food could be directed toward other things, things which would improve my quality of life, things like social activities or wine kits.
I've talked to a lot of social workers and counselors since getting this disease. It is a common theme amongst all of them, that my only real focus should be quality of life. Whatever resources I have, whatever resources I can access, their advice is that my first choice, after mortgage and utilities, should be things which enhance my life, make me want to live.
The food bank is embarrassing. I don't want to go. I don't want to use it. Plus there are very clear limitations. I am allowed a food hamper every 30 days up to 7 times a year. What about the other 5 months? I don't want to go to the food bank; that, in and of itself, will reduce my quality of life, taking valuable time from me, forcing me to get up early and get there early, so I can stand in line for a handout, like a soup kitchen in the Great Depression. Fortunately the social worker can pick my food hamper up for me, given my mobility and health limitations, but only after I apply and am approved as being sufficiently poor.
Oh how the mighty have fallen. All of this is a cruel reality, once again re-inforcing why they call ALS the "bankruptcy disease". I don't want to do this, to go to the food bank. I am compelled to in order to keep living. That's the real problem; I didn't die on schedule. I'm living too long. I know there is a solution to this, but I am not ready to go yet. I have enough quality of life to keep me hanging on, even with this whole food bank thing.
Sunday, 8 May 2016
I Love My Mom
It's Mother's Day today, that day in the western world, approximately, where we spend billions of dollars, send fields full of flowers and crates of chocolate, all in honour of our Mothers. Yet I know, from personal experience, that the greatest gift you can give your Mom on Mother's Day is the gift of time, a moment in your schedule where you call your Mom and tell her you love her.
No amount of commercialization can ever replace that single, powerful sentiment; I love you, Mom. Nothing you will ever say or do will have as much power as telling your Mom that her contribution to your life was the only one that really mattered, because if it wasn't for her, you wouldn't be here. For some of us, that expression of love is easier. Some of us have strong, powerful relationships with our Mothers. For others, it's more difficult; their relationships with their Mothers are somewhat more troubled, more difficult.
When I was diagnosed with ALS, I committed to calling my Mom every single day of my remaining life. I call my kids on a semi-regular basis. I call my brothers periodically; the same with my friends. But my Mom is special, incredibly special. She has earned this daily call, this constant contact with her son. I'm not perfect. There are days when I forget. There are also days when I phone twice, having forgotten the first call or been interrupted in our conversation. But my goal remains. I want to tell my Mom I love her right up until I can speak no more. And then I will send that same message by text, or through the voice of a machine.
I love my Mother. I appreciate all she has done for me in my life, all she gave, and gave up, so that I could have more, a better life. I love my Mother. I value the lessons she has taught me, the lessons of love, of forgiveness, of discipline, of caring, of compassion, of kindness. I love my Mother. I fear that the end of my life will come too soon, too soon for either of us.
It is the unkindness of ALS that she is compelled to see me go through this. If I could give her one gift, one single thing on this Mother's Day, it would be hope for a cure, or even some form of treatment, so that she would not have to go through the anguish of losing her son to ALS. But I can't do that. All I can do is tell her I love her.
No amount of commercialization can ever replace that single, powerful sentiment; I love you, Mom. Nothing you will ever say or do will have as much power as telling your Mom that her contribution to your life was the only one that really mattered, because if it wasn't for her, you wouldn't be here. For some of us, that expression of love is easier. Some of us have strong, powerful relationships with our Mothers. For others, it's more difficult; their relationships with their Mothers are somewhat more troubled, more difficult.
When I was diagnosed with ALS, I committed to calling my Mom every single day of my remaining life. I call my kids on a semi-regular basis. I call my brothers periodically; the same with my friends. But my Mom is special, incredibly special. She has earned this daily call, this constant contact with her son. I'm not perfect. There are days when I forget. There are also days when I phone twice, having forgotten the first call or been interrupted in our conversation. But my goal remains. I want to tell my Mom I love her right up until I can speak no more. And then I will send that same message by text, or through the voice of a machine.
I love my Mother. I appreciate all she has done for me in my life, all she gave, and gave up, so that I could have more, a better life. I love my Mother. I value the lessons she has taught me, the lessons of love, of forgiveness, of discipline, of caring, of compassion, of kindness. I love my Mother. I fear that the end of my life will come too soon, too soon for either of us.
It is the unkindness of ALS that she is compelled to see me go through this. If I could give her one gift, one single thing on this Mother's Day, it would be hope for a cure, or even some form of treatment, so that she would not have to go through the anguish of losing her son to ALS. But I can't do that. All I can do is tell her I love her.
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