Wednesday, 31 December 2014


Anisa's Mom, Marianne, died last night. Anisa is one of my close group of friends here in Calgary. These folks are the main reason I decided to stay in Calgary once I was diagnosed with ALS, instead of heading back to BC. I met her parents when they came to visit her here last year. I've kept touch with them, directly and through Anisa, since then. When Marianne's cancer returned earlier this year, we hoped she would beat it again. She didn't.

The last month for Marianne, along with Anisa and her family, has been a tough one. The inevitable was on its way and she had to deal with it. Having seen my own father go through this process, I had a pretty good idea of how it would go. There is no "normal" with cancer. There's only a process with rough expectations. Marianne fought hard to keep going. In the end, she couldn't go any longer.

Death is a difficult thing to face, whether sudden or slow. It shakes everything within you, whether you are the person facing it or whether you love the person facing it. To lose someone is hard, especially a parent, and even more especially, a child. I am facing a long, slow process, slower than that which Marianne faced. My process is almost invisible; it's insidious. I don't seem "sick"; I am just dying slowly.

It's so sad for Anisa; her Mom was only 57 years old. Her Dad is at a complete loss as to how he will live his life from here. I know he will go on; I've seen this with others in the same situation. It's hard to imagine in the moment, had to believe that there will be life after such a tragedy. But it will happen. As much as Anisa, her Dad, Nain, and her brother Mike, may hate the dark of night tonight, tomorrow will come with the dawn of day. They will start their new life without Marianne, without the wife and mother they loved and have lost.

This will be important for my Mom and my kids, for my brothers, and most of all for me. I must remember, as they will be forced to remember, that life will go on after I leave it. As with Marianne, I will go quietly, at home. I may be alone or I may be with those I love and who love me. It matters not. Once I leave, as Marianne has left, they must start a new life, one without the person they love and will miss.

The first step is to keep breathing, then to go to sleep and wake up the next day. Then, one day, the pain gets a little bit less, the hurt goes away just a little. One day you find you will smile again, laugh again, be joyful again. As time goes by, you will never forget the love and laughter, but you will forget the pain of the loss. You will always sense the missing piece of your life, but you will continue to live. The pain leaves; the love stays with you.

Tuesday, 30 December 2014

I Accept; I Hate It

I'm not doing well this morning. My left shoulder hurts; my hands hurt; the muscles in my arms hurt. I am even having trouble focusing my eyes this morning; they work, just slowly. The problem is that I don't know how much of this is simply aging, and how much is ALS related. The shoulder might be aging, My hands might be just the same. My slow focus eyes might just be the time it takes for me to wake up. All of these things are probably made just a bit worse thanks to my illness.

Let's face it; I am dying. Of course the more prosaic amongst you might say we all are dying, and that would, on the face of it, seem true if just a bit trite. The difference is that my dying is an active event; a slow, torturous, dragged out affair that will end in a terribly inconvenient manner. For those who are not afflicted with some terminal illness, such as end stage cancer or such like, your death is a passive event, something that might happen at some time in the near future. Mine is happening now, just in slow motion.

I have a friend who will die this week, most likely, from terminal cancer. Her march to the end of life has been underway for some months now. She has been fighting her cancer, and so could have been said to be living with it, until just a matter of weeks ago. It was at this point when she began dying from cancer instead of living with it, instead of fighting it. She has accepted that her cancer is what will end her life.

My father went through the same thing with his cancer. He fought until he could fight no more. Then, a week before he died, he went into the hospital where the doctor said they would not treat his cancer any more. My Dad said, with kind of spirit only he could muster, "Then we give up!?!" The doctor replied, "No. McBride. We accept that this is what is going to kill you." A week later, Dad died. He just gave up once he found there was nothing he could do to fight his illness.

So what do I do? How do I "live" having been forced to accept that there is nothing I can do to fight my illness. Sure, there are devices and machines and methods to extend my life, a life trapped in a chair or laying in a bed. Sure, there are people who live longer through mechanical intervention. I just don't think I want to do this. I have accepted that this is what will end my life; I will die from complications associated with ALS.

I have accepted. Now I just have to wait. It means mornings like this, and worse to come. One day I will wake up and realize that tomorrow will be worse, that the day after that will be worse yet again, followed by the day after that. And I am compelled to accept that this is what will kill me. I hate it.

Monday, 29 December 2014

Remove The Blockage First

My kitchen is a mess. It's been that way for a couple of days now. The remnant Christmas dinner dishes, cleaned and in the dish rack, still await putting away. There are pots stacked in the sink, empty wine bottles on the counter awaiting rinsing, the sugar and flour I bought yesterday stand there wanting to be put away. I see it. I feel it calling my name, near screaming at me to be tidied up and cleaned away. Yet there it sits, waiting, unattended.

There are times, whole days in fact, when I simply don't want to attend to the chores in my home, the activities of daily living simply demanding of me that which I do not wish to give. Sometimes, like yesterday, the other things in my life get in the way, things like getting up and shaving and dressing and going out to a party. Given the choice, going out to have fun always wins over cleaning up the kitchen.

It's also a thing about "blockage". There are some things that simply stop me from moving forward, knowing that I cannot accomplish that which blocks my forward progress. This time it was the two platters which have been sitting in the dish rack, dry and waiting to be put up on the top shelf of the cupboard. I can't put them up. Without help, there they sit. I don't want to ask Ray or Mom to put them up; they have as much trouble as I do with those top shelves.

Since I can't put the platters away, I don't want to bother with the rest of the dishes in the rack. Since I'm not clearing the dish rack, I don't want to bother with the dishes in the sink; I have no place to put them once cleaned. Since I can't clean the dishes and empty the sink, there's no room to rinse the wine bottles. And as to the sugar and flour, I'm just too lazy right now.

Here is what I know in situations like this. You either find a way to remove the blockage or you find a way to work around it. Today I asked my Home Care worker to put away the platters. Once I am done writing, I will clear the rest of the dishes from the rack. After that, the bottles and then the sugar and flour. Then, in a matter of a few minutes, the kitchen will be tidy... and all will be right with the world.

Sunday, 28 December 2014

Professor X

I am undergoing a dramatic change today. It's not an ALS type change, I'm doing this one on purpose. For the first time since I was 19 years old, I am shaving my mustache. I am also shaving my beard along with all the hair on my head. I will be... bald and clean shaven.

This is not for some charity; unfortunately I couldn't find someone willing to shave my head as a fundraiser for ALS. No, this is for a super hero themed party I am attending tonight. I am going as Professor X from the X-Men series of graphic novel and movie fame.

There is a certain irony in my choice of this character. Aside from the fact that the wheelchair is a built-in prop, the way Professor X is portrayed in the graphic novels is dramatically different from the way he is portrayed in movies.

Drawn as a character on paper, Professor X is extremely muscular, wearing a shirt so tight that muscles ripple beneath. The shirt itself bears a lurid "X" logo on the breast, also bulging above muscle. His legs, however, are thin and wasted, as you would expect from someone who is a paraplegic in a wheelchair..

On the other hand, Professor X, as played by Patrick Stewart in the X-Men series of movies, is anything but muscular. His lack of muscle is more than evident by its absence; it's just not there, something that could be a bit of a shock if you were a devotee of the graphic novel. The movie version of this character is always dressed in a dapper suit, almost always a three piece suit, with a well tied tie and perfect grooming.

The irony is the loss of muscle between the comic character and the movie version. It's as if some strange disease had taken away all of the Professor's muscles, leaving him with only his mind to do his super hero work. That is something I can understand.

My real problem is not the Professor X look. I shall go in a jacket and tie, most likely without a vest. My problem is the wheelchair. In both movies and drawings, Professor X has this really cool wheelchair; I don't. I have an ordinary, regular, run of the mill, long use wheelchair; almost standard issue, mine is at least reasonably high end. The best I can do with it is use white duct tape to put a highly visible "X" on each wheel. That will have to do.

Then again, there is the shaven head, beardless face, absent mustache, along with a suit and tie. People should be able to figure it out. If not, they haven't seen enough super hero movies.

Saturday, 27 December 2014

I Worry About Needing Help

I awoke this morning to a disaster. During the night, both Mom and Ray came down with some sort of stomach ailment, suffering the attendant vomiting. On top of that, Mom is suffering from severe diarrhea. When I went into the bathroom this morning, the results of these combined problems were on the walls and floor near the toilet.

My parents had done the best they could to clean up. Unfortunately both of them were, and still are, debilitated by their own physical limitations along with their illness. I cleaned up where I could but the walls and floor behind and beside the toilet were out of my reach. I made a panicked call to Kate and Meaghan to come and help me with the clean up.

Complicating matters, Meaghan is pregnant. The mere thought of this situation was enough to trigger her own stomach issues. This meant Kate took the brunt of the cleaning responsibilities. She marched in, took charge, and cleaned up the mess. It only took her a bit; she is very efficient when sets her mind to it.

Once again I am reminded of how I need help in ways I've not needed it before. The simple act of cleaning behind the toilet is beyond me. I can't reach it from my wheelchair. There are a lot of things like that which limit me now. This morning when my parents were in need of help, I called my own children to take over. They now find themselves in the same sandwich I have lived with for many years;  caring for aging and ailing parents while caring for their own children. Only they are starting earlier than me.

Having people around me who can help will become increasingly important to me over the next year. As my condition progresses, I will be calling for help more often. I will need help more often. My concern is that, as I become more and more dependent on their help, my needs will wear out my support system. People will become overloaded with my increasing requests for help. I worry about that a lot, especially as concerns those who are closest to me.

I know they are willing to help; they offer to help, often. I know they understand how reluctant I am to ask for help. I also know that they have lives of their own. I know I am inconvenient. I know it will get worse. That worries me.

Friday, 26 December 2014


It's nearly 5:00 PM; it's been a very long, very busy day. It started with a phone call from a Home Care worker at 8:20 AM to advise me that she would be filling in for my regular worker today. Then a call from one of my daughters at around 9:15 AM, followed by a text from another at 10:00 AM, another call from a daughter at 11:00 AM, and the arrival of all of them at 11:45 AM. I don't mind all of this, in fact in some ways it is kind of nice, that there are so many of them here all at once.

As I see them all here, I wonder if this will ever happen again, if I will ever see them again here in my home. It's unlikely, given my current situation and their situations. The only way most of them could make it is with air fare supplied. On top of that, next year will be their mother's turn, regardless of my health or situation with ALS. It's also unlikely to happen this summer despite plans for a big 60th birthday party. No, I think this was it. That makes me kind of sad.

I have really enjoyed having my grandchildren here. While I relate to my adult children well, often sharing their humour, I derive a great deal of joy and pleasure watching my grandchildren, interacting with them, knowing that they know me and might just remember me. I have tried very hard to make their visit exciting; I think I was successful. I think my children enjoyed it as well, along with Mom and Ray.

Now things are winding down. Mary, Albert, Rose and Quinn are at the airport, courtesy of a ride from Lewis in his Jeep and Ricky in my truck. There are fewer people here. Those of us remaining are just a tad quieter. The only real intrusion on my thoughts is "Barbie Dream House" on Netflex, on now at the insistence of Charlotte, my four year old granddaughter. If that was not on, it would be "Midsomer Murders", a new addiction on the part of Mom and Ray thanks again to Netflix.

The apartment is still a mess although the mess is lessening. The toilet is still sluggish although not quite a sluggish. The floors are still dirty, although not quite as dirty. Maintaining a clean home gets exponentially more difficult when you have children in it. As the number of children decreases, so does the mess. I must say, however, that given the choice of having my grandchildren or having a tidy house, the grandchildren win hands down. They are truly delightful.

Tomorrow will be a quiet family day for Meaghan, Lewis and Charlotte. We will likely see them for a short while; they plan on having dinner at Kate's place, then leaving early in the morning to drive to the coast, along with Ricky. Then my home will be completely lacking in the sounds of small children. I will complain that it is too quiet, that there is not enough mess, that I miss them. It's funny how it works that way.

Thursday, 25 December 2014


It's amazing to me that this, of all days, is the day when I find it so difficult to write. That perhaps springs both from my reasons for writing and the writing process itself. I write to share my life. Today my life is full of sharing, crowded with people who know my story, who are walking this walk with me. There is no need to write when it is all here.

Then there is the process of writing. I need a quiet space to contemplate, in most cases, that which eventually rolls out of my fingertips. So many times I start with one thought, then moving to another. With so many people around, there is no quiet contemplation. There are interruptions, shouts, noises, and needs all around me. To focus here nears impossibility. Yet here I am, writing.

Christmas morning was as Christmas morning should be. There were stockings to unstuff, presents to unwrap, predictable meltdowns by both adults and children, food to prepare, and endless tidying to do. Toys are spread from wall to wall in my living room. Bags stuffed with gifts line the hallway, spreading from the living room, delta like, onward to line the walls of the foyer. Boxes and bags are everywhere, some full, some empty, some awaiting a load, others ready for transport. The smell of chocolate is everywhere, as is the smell of turkey roasting in the oven.

We are a family; great-grandparents, grandparents, parents and children. There are four generations of us here, something I will not see again, something that will not happen for me. I am grateful for the generations I have; I will not miss that which I will never see. I can regret that I will not see it, but I cannot miss it.

One of the great things of this day, of this kind of day, is that we can see beyond the walls of our own years, out to those who go before and those who will come after. We can see the rewards of our work as parents, enjoy the benefits of being grandparent. I am enjoying those benefits today, my grandchildren excitedly showing me their gifts, laughing as they play, exploring my home. I am enjoying the benefits of my own children as they help me with the food preparation, sharing in the ongoing effort of tidying and clearing away.

Dinner will happen soon. Once again there will be massive amounts of food on my table. Once again my family will share a meal, that ritual that binds in almost all cultures. Christmas, beyond its religious meaning, has become a secular holiday of sharing and family. Today, I am enjoying that. I am grateful.

Wednesday, 24 December 2014

Christmas Eve

It's almost a normal morning today. There is no rush about the house, no children to pick up, no parties, no shopping. I slept for 13 hours last night and could have done another hour or two, yet still I awoke with little rush. Mom and Ray are comfortable enough now that they can manage themselves. Ray has even found himself sleeping in until 9:00 AM; he usually gets up at around 7:30 AM or so back in BC. I think it's the time change working in my favour.

I don't even feel rushed about the kids coming over. Everything is in its place. The shopping is done. The presents are wrapped except for the one I accidentally tore open last night. After the birthday party for Rose and Charlotte yesterday, before going home, Kate and others helped clean my home while Meaghan, Mary and I went to the mall for a couple of last minute gifts. I returned with the gifts to find the kitchen, living room and hallway all tidy and neat.

That won't last long, of course. Today when my children arrive with their children, the concomitant mess and noise will arrive with them. Their will be dancing and playing, running and shouting, chattering and incessant questions about this and that. They will want snacks and milk and candy. They will inspect presents and want to know if we have them all, or if there are more to come. Plus the little children will be in on the act too!

This busy afternoon will be mostly pass me by. I have learned in the last couple of days that I can focus on one thing and pretty much ignore everything else. Perhaps the only un-ignorable thing is my son-in-law, Albert. He loves to chatter and has that kind of voice that cuts through everything. I suspect this is God's revenge on me for all the times my own voice has drown out all other conversation.

The kids are here for Christmas Eve, sort of. They will stay until about 7:00 PM, like most other days, as they have their own children to put to bed. Some will head to church, others will head to Kate's where they are staying. Then it will get quiet here. Mom, Ray and I will prepare ourselves for the onslaught of Christmas morning, which will happen at about noon here. Tonight will be the calm before the storm.

Tuesday, 23 December 2014

Guest Blogger, Beth Popa Castelvetere - Stolen Voice

My Facebook friend and fellow PALS Beth Popa Castelvetere wrote this on her Facebook page yesterday. It is so touching, so much of what I am afraid of facing in my future. She is a strong woman, with a powerful will to live.

ALS is stealing my voice...ah yes my voice.

To say it is the hardest loss to deal with is an understatement. I had an astounding, articulate, amazing, even argumentative voice. Put me on a stage, in front of a large or small crowd, no fears, I was your girl. I loved it. Communicating, counseling, consoling, yep all me. Let us not forget the loud okay sometimes a little obnoxious me. (Yes, I can admit that :))

Our voices express a multitude of emotions, feelings ranging from sadness to happiness, hostility to peace, dislike to love, grief to encouragement and so many more. It is in this last statement i will miss my voice the most. Have you ever thought of your voice in this way? Chances are not likely, all of us, even me pre ALS somewhat take it for granted.

Say this out loud for me please, whatever your age, "In 2-5 years, in some cases earlier, I will lose my legs, I will not be able to walk through the park, I will lose my arms, I will not be able to hug my loved ones, I will lose my ability to swallow, I will not be able to have an ice cold water on a hot, humid day, I will lose my voice, saying I love you isn't an option, and yes I will not breathe, take my breath away has a whole new meaning. I have no cure, no treatment, no help."

This is only a fraction of what ALS does. I ask not for pity, I ask for help for the future, I ask for your time to discuss, acknowledge, help fund ALS. During the holiday season remember each other, love each other, for some it may be our last. I started this with what ALS is now "stealing" from me, let it be known it does not steal my heart, it will not steal my spirit. I'm "okay" my spirit is stronger than ever.

Real life. Real facts. Real me.

Monday, 22 December 2014

Looking After Myself First

Today will be the first full fledged day of holiday family. Rick has decided to stay here at the apartment, sleeping on the couch. Mary, Albert, Rose and Quinn are already settled in at Kate's place. With their rented car, they can come and go as they please. Right now it pleases them to be over at the mall. In an hour or so, they will descent upon my apartment. Tomorrow we will add Meaghan, Lewis, and Charlotte to the fun and games.

I find myself becoming less effective in managing all of this than I have been in times past. I miss things, forget about stuff, neglect that which needs to be done. In the last two days I have had to unplug both my toilet and the filter on my dishwasher. I completely forgot about grocery shopping, something I will do this afternoon with Mary. We need food for her family and Meg's family, food they can use while staying at Kate's place.

Dinner over the next few days will mainly take place here, at the apartment. Roast Lamb, pizza for the birthday party, Honey-Mustard Glazed Ham, turkey on Christmas Day, leftovers whenever. I have a full menu and a complete set of meals ready to go. Unfortunately they are all here, all for dinner, when Mary and Meg need food for breakfasts and lunches. I am going to encourage both fridge raiding and leftover taking, as well as a bit of shopping for good stuff.

I can do this. I can make it all happen. In years past, this level of activity would be nothing to me. These days it is taking everything I've got to get it all done. Hence the lowered level of effectiveness. I am going to do my best to keep up. I know for sure that some things will fall by the way. I will simply ask for forgiveness, moving on to the next important thing.

Right now, the most important thing is exercises. Home care will be here in about 20 minutes. My stretches will get done. Fortunately this activity will happen regardless of who else is here. As I was told yesterday, I have to look after myself first, or else I won't have the strength to look after my guests. Between Home Care, helpers in my house, and as much sleep as possible, I will have a great week.

Sunday, 21 December 2014

Holiday Exhaustion

I am exhausted. It's already been a long and busy day, and the day is not yet over. I was up late last night; not a lot later than usual, but late enough. On top of that I was up early, at least for me, so I could pick up Mary and family at the airport. Then there has been the busy running around that goes with having family around. On top of it all, my toilet is plugged. I started working on it in the morning and it's not as bad as it was, but it's still not flushing properly.

Right now I am ready to sleep, barely holding my eyes open, lids heavy and ready to drop. I'm moving sluggishly, rather like the toilet drain, my energy all flushing from my system. I am sure all of this is related to my peripatetic eating patterns these last few days. After not wanting to eat for about three days, I got hungry at around 11:00 PM last night. Then, this morning, I was once again attacked by a diminished appetite.

I am sure I will survive this very busy Christmas season. What I am not sure of is how my children will deal with my easy exhaustion levels. They are used to having a Dad full of energy, a Dad who could deal with them, their children and all the activity without showing it even a little bit. Now something as simple as going to the mall across the street takes an awful lot of energy, more than is easy to see, and takes an awful lot of work what with the wheelchair and all. I'll survive, but I am pretty sure it will be a different experience for them all.

There is a possibility I might eat tonight. I just had a piece of cheese; my stomach did not completely reject it. The next step will be making something that makes use of the fridge full of leftovers from last night. As is usual, I had a party and ended with more in my fridge than when I started. Thankfully I will have plenty of children around over the next few days to eat them up.

A busy house, a busy season, a busy me. It stacks up. I will survive it. I'm just not so sure how.

Saturday, 20 December 2014


Life throws curves at you; some of them are minor, some are major. ALS was a major curve in my life. It still is. On the other hand the minor curves can be just as challenging at times. Tomorrow my son, daughter, son-in-law, and granddaughter are supposed to drive from Abbotsford to Calgary. Their plan was to drive to Revelstoke on Sunday and then through to Calgary on Monday. That was the plan.

Today a major weather front has moved in from the Pacific, bringing snow and ice to the mountain roads, causing the highways folks to issue a safety warning. The high mountain passes are likely to be the worst affected, especially Rogers Pass and Kicking Horse Pass. These roads are treacherous at the best of times, and down right frightening in bad weather. Add some snow and ice, and you have a life-threatening skating rink.

I talked to my daughter this morning and the general consensus is that flying here will be a lot safer than driving. Even without weather, flying is safer than driving. Faster too. It has some limitations, though; less luggage room, which means less room for Christmas presents on the way here, and especially on the way back. You might think the cost is higher, but all things considered, I would rather pay for four plane tickets than four funerals. I want my children to arrive here safely and in one piece.

These are the considerations when you live far from your children. I am fortunate, and grateful, that Kate lives here in Calgary. It means a great deal to me. I am reminded often that I am the one who moved to Calgary while they stayed in BC. Meaghan and Rick still live with their mother, which makes visiting a challenge when I go to the coast. It also means I don't see my grandchildren unless I drive down to the coast.

I chose Calgary. I chose it because of the tremendous support I get here, from Kate, from friends, from the health care system. There is not a day goes by when someone is not checking in on me, visiting me, helping me in my home. I just felt like Calgary was a good choice. I still think it is a good choice although I debate myself on it regularly. Days like today are a good example. The weather threw us a bit of a curve.

Friday, 19 December 2014

I Can't Eat, Sort Of

I am in a rush today; Mom and Ray are here and we are heading out in a moment to do some necessary grocery shopping. Home care was here earlier, giving my legs a workout. Between looking after things for Mom and Ray, looking after my own morning needs, and getting exercised, I have been in and out, or rather on and off, of my bed three times already today. That's exercise for me, and what with the rush and all, I am already tired enough to go back to sleep.

This will pass. In a few minutes we will head down to the truck. We'll try to help Mom get in. She will use my lift and then, with the transfer board, slide across to the passenger side. I say "try" because at this point, with Ray having trouble with arthritis, me having ever weakening arms, and Mom having trouble with her hip, there is absolutely no certainty that this will all work. This is one of the few times I wish I had a car instead of my truck.

Grocery shopping itself will be a trial. For the last few days I have not wanted to eat. Normally when this happens to me it is a passing thing, a feeling that comes from exhaustion or from nowhere at all, gliding over me like a grey cloud, moving along soon after. This time, however, the general nausea and lack of interest in food has gone on for three days. This is a bit of a record.

It's not that I am completely without nutrition; I am taking in liquid calories in the form of milk, egg nogg and beer. I also managed to choke down a couple of cookies and a couple of pieces of cheese toast yesterday. This morning I managed a slice of Swiss Cheese and ham. This is actually a good sign; if I am able to eat anything then it means the feeling is on the way out. Yesterday afternoon you could not have forced a spoonful of food into me. Today, you can.

The real shame in all this is that I made one of my favourite meals to welcome Mom and Ray, as well as Jim who also stopped by on his way from a road trip. I made Southwest Style BBQ Ribs with Spanish Rice. I ate none of it; the others told me it was terrific. There's a bit left. Perhaps I will have it tonight. The nausea is returning, so it's a toss up right now. Who would of thought that eating would become such a chore? I love to eat, except today. And yesterday. And the day before. I am hoping for a better day tomorrow.

Thursday, 18 December 2014

The Busy Season Begins Today

The Christmas season officially begins at 4:30 PM today. That's when my Mom and Ray arrive from Vancouver. As good fortune would have it, my brother Jim is coming into town today, on his way home from a road trip down to the Los Angeles area. Both Jim and I are blessed, or cursed as the case may be, with the travel bug and love of a good road trip.

I am excited about their arrival today, so much so that I woke up very early today. It took a bit of convincing by my body to tell me to go back to sleep until my normal awakening time of 11:00 AM. Last night was not a good sleep night so it's important that I get what rest I can, when I can get it.

The next week will be full and busy. Today it's Mom, Ray and Jim. Tomorrow is a resting day. Saturday is my annual Friends and Family Christmas Party; this year it could be a big one, there looks to be about 15 - 20 people attending so far but I don't really keep track of who is coming. I just let it happen. On Sunday, Mary arrives with her husband, Albert, and their two children, Rose and Quinn. My son Ricky will either arrive on Sunday evening or on Monday morning sometime, depending on whether he stays overnight in Revelstoke on the way. Tuesday, Meaghan and her family arrives, husband Lewis and daughter Charlotte.

With Kate living in Calgary already, this means, for the first time ever, all of my children as well as my parents will be here at the same time, celebrating the season with me, doing our traditional Christmas stuff, only this time here in Calgary. On Tuesday we are having a joint birthday party for Rose, who turns 3, and for Charlotte, who turns 4 in a couple of weeks. On Wednesday we will do our Christmas Eve stuff together. Perhaps some will attend a Christmas Eve service at a local church. We'll do a light supper together before everyone opens a gift, then decamps down to Kate's house where they are all staying. There's not enough room for them all in my little apartment.

Christmas Day is the big event, with stockings to empty, presents to unwrap, and a giant family dinner of turkey and all the trimmings. After dinner we will sit, resplendent in our gorged madness, watching the kids play with new toys, betting on who breaks what first. The day will wind down, and suddenly, just as quickly as it begins, it will end. Mary and family go home on Boxing Day. The day after, Rick will leave as will Meaghan and family.

Mom and Ray are here to the 30th or 31st, I am not sure which. Then they too will go home. Once again my small apartment will be empty of all except me. The tree will be down and it will seem as a dream, having so many of my children here, having my grandchildren here, having my Mom and Ray here, having Jim here. My family will leave; I will keep the memories. That's how this all works, doesn't it?

Wednesday, 17 December 2014

Resting, Sleeping

I'm tired. Arms in pain yesterday remain in pain today. My shoulders have been aching and there has been a consistent pain where my spine meets my head, this has been going on for a couple of days now. On a pain scale of 1 to 10, it's only a 2 or 3; it's not bad, it's just persistent. And it makes me tired.

It may not be visible to the casual observer, but I am beginning to reduce my social calender, beginning to say "no" to things, a great many things, I might have done in the past, even the recent past. It's just getting more and more tiring, more and more difficult. On top of it all, when I do go to something, there is a pretty good chance I won't be able to participate simply because of my limitations. It's getting to the point where it's getting easier to stay at home, notwithstanding my love of social interaction.

With the busy Christmas season upon us, there are so many things going on that my schedule is full regardless. This will all end in a couple of weeks. Soon enough the cold nights of January will be here. I will most likely want to be at home rather than forcing a wheelchair across ice and snow to get into a social setting which is most likely poorly setup for someone in my situation. When January 1 arrives, my family will all have gone home. The quiet of winter will descend both on the city and on me.

New Year's Eve is a good example of this. I have been invited to a couple of events and there have been numerous suggestions for other things I might do. In the end, however, I suspect I will just stay at home. It will be the first time in a couple of weeks where my apartment will be mine and mine alone, empty and silent except for me cluttering about. Staying home, after such a busy holiday time, will probably seem like the best idea.

It's all about the energy that it takes to do things and the results of that output. It takes a lot of energy to be an extrovert as I am. I just don't have that much energy. I am getting tired, consistently and constantly. I think the time has come for me to spend more time at home, resting, sleeping. I've hit this stage of my journey.

Tuesday, 16 December 2014

Pain Complaining

If this sounds like I am complaining, well, I am.

I awoke this morning in a slow motion kind of start. It's hard enough for me to wake up; it gets increasingly difficult when my arms, shoulders and neck all hurt at the same time. I have lots of days where one arm hurts or one shoulder or one side of my neck. Today it's everywhere, all at the same time. The pain is not excruciating or debilitating, or even bad enough to need medication. It's just there, below the surface, like a shark attacking the muscles beneath my skin only slower.

It's not enough that my muscles hurt. My jaw alignment has been off lately and I am noticing it more and more. It's still too slight for others to see it, but it is there. My lower jaw is pushing to the left and jutting forward slightly. I know it's there by the number of times I find myself chomping down on the inside of my left cheek.

It's not always when I eat; in fact these days I take more care when I eat so that I don't bite my lips or tongue. These days when I sleep my teeth tend to close randomly and my jaw wanders, thus placing either my tongue or inner lips in danger without my knowing it. So far I haven't bitten hard. So far I have awoken just enough to keep disaster from occurring. I can just see the headline "Man Bites Tongue While Sleeping, Bleeds To Death".

There have been other days like this; there will be more. These kinds of days are all about keeping going, about getting up enough energy to get up, about focusing enough on the outer rather than the inner to make it possible. I made myself get up. I made myself brush my teeth. When I went back to sit on my bed and dress, I forced myself to not lie down, but to stay in the moment and focus on getting dressed. I almost made it; I have to lie down to pull up my pants. Once down, I stayed there for about 10 more minutes. Then I finally made the transfer to my wheelchair.

So here I go, attempting to get something done between now and 5:00 PM. That's when I have company coming for dinner. It's a good thing I have some fabulous fish in sauce left from yesterday. It will make a wonderful meal, one I will not have to work to prepare. Then, at about 6:45 PM, I am off to Trivia. That should make me forget about the aches for a while. No more pain complaining for a while. This is enough.

Monday, 15 December 2014

Successful Day

It's one of those days today, those kinds of days with lots of things to do, mostly little things. It's one of those kinds of days where I will feel highly productive by the end of it, where I will feel like I actually accomplished something. Of course it will be tiring. Of course it will take a lot out of me. Of course there is a good chance I won't actually get all the little things done; it's almost a certainty. I don't mind. I like the idea that I might, just once in a while, feel like I can get things done.

I'm already finished some of my tasks. Home care has been here for my exercises; the laundry I folded last night has been put away. Next I will work on putting the shrink caps on the wine we bottled yesterday. After that, I'll do another load of laundry. And at the end of the day, I will make dinner for Cheryl, during which we will consume on of my new bottles of Christmas wine.

There are still other things on the list. I need to go to the Post Office and pick up some parcels delivered here for Mary. I need to do some grocery shopping to be ready for Mom and Ray when they arrive on Thursday. I need to get over to a mall across town and pick up a couple more Christmas gifts, which I will then need to wrap.

The funny thing is that I say "I need". I don't really need to do any of these things. I could make a call to someone and ask for help. Dion would most likely get the parcels for me. I know if I said even the slightest thing to Cheryl about dinner, she would pick something up instead of me cooking. The shopping can, and will wait, perhaps even until Mom and Ray get here, or even until the kids all arrive. There is no urgency in this.

What it's really all about is what "I want". I want to do these things. I like to feel that accomplishment, that feeling of having done something from start to finish, of starting from disorganization and ending with order. I want the fun of picking up packages. I want the excitement of finding another perfect gift. I want the pleasure of picking out my own groceries, smelling the fruit, feeling the tomatoes, looking for just the right cut of meat. I want to feel like I am still capable.

That's why today will be, and already is, a good day. No matter how it goes from here, I have already done a lot; I've already accomplished. Even if I do only one more thing in my day, it will be a success. I like that idea.

Sunday, 14 December 2014

Asking For Help

It's another wine bottling day today. Kate will be here any minute. Brad is coming in an hour or so, along with Brian and Dan, and perhaps some others. We will clean bottles, fill them, cork them, label them, and put decorative wrap caps on them. Then we will leave them sit for at bit, in some cases not long, in others for a few months, and then reverse the whole process, enjoying the delicious fruits of our labours.

Of course when I say "we" in all of this, I mean mostly "they". The only part I really get to enjoy is the drinking part. As I have become weaker, I am less able to do any of the real work in making and bottling wine. In fact the last time we bottled, I was shunted into the living room and basically told to keep out of the way. I can do some of the stuff, but mostly me and my wheelchair are just a nuisance to those more able-bodied doing the work.

I am starting to get a sense of closing in on myself, as I look at this situation and many others. It's starting to look easier just to stay at home and let things happen around me, rather than getting out and making things happen. It's part of the self-inflicted isolation that happens to a lot people with ALS or other illnesses. We become "shut-ins", we remain home alone while the world goes by right out side our door.

This wine bottling session is actually a part of that feeling. I am beginning to think that it is just too much trouble, that I have to ask for help all too often, just to make wine that I mostly serve or give to other people. I am feeling like I am starting to become a burden, on my daughter, on the rest of my family, on my friends. I am now almost constantly asking for help with something, asking someone to come over and do this or do that. Kate probably gets the worst of it; she is over here twice in most weeks and I feel like I am always asking her to do something.

I don't want to be a nuisance. I don't want to be forever asking for help, forever looking to others to make things happen for me. I don't want to have to ask for help when I want to make wine, to rack wine, to bottle wine. I don't want to have to ask for help unloading stuff from my truck or putting stuff away in my storage locker. I don't want to have to ask for help with something as simple as emptying the dishwasher.

Asking for help has become a way of life for me these days. I am getting rather tired of asking, of needing. But I am still going to try to make wine. Other things might slip, but winemaking is something worth asking for help with. I'll do it for a while yet.

Saturday, 13 December 2014

I Can, With A Little Help

The phrase "I can't" has long been one of my bugbears, a peeve of mine. People so often say "I can't" when they really mean "I won't". It's not that you can't do something, it's that you won't do what it takes to enable yourself to do something, most likely because either you don't want to pay the price of doing it or you are fearful of the outcome.

Lately, for me, "I can't" is becoming much more of a reality. There are now things I truly cannot do. Just as the rest of the world cannot leap tall buildings in a single bound, I cannot stand up. Just as the rest of the world cannot run faster than a speeding bullet, I cannot run at all. Compared to me, even the weakest of able bodied people has the power of Superman. I am reaching that stage where there are just too many things "I can't".

On the other hand, there are lots of things where "I can", even though on first blush it would appear as if "I can't". Last night is a good example. A group of us went to see the CP Holiday Train. I know, it should be the Christmas Train; welcome to a secular society. That, however, is not the point of this entry. That discussion can be safely stored away for another day. The real point is what happened after the CP Holiday Train, when we all went up to Jack Astor's Pub for a beer and snack.

One of my challenges in going to pubs is their use of high, bar tables with high bar stools or bar chairs. I got rid of my own small dining set because it had those kinds of chairs. I can't get up onto them, and even when I can I am sufficiently unstable that I worry about falling, especially off the bar stools which I was presented with when arriving at Jack Astor's. I looked at the stool and said to myself, I can't sit on that.

My options at that point were to sit with my chin on the table, trapped in my wheelchair, or to ask the whole group to move to a lower set of tables. The presented compromise was to put me at a low table down at the end while everyone else conversed, drank, and ate up at the "grown up table". I said no thanks to that, and was about ready to go home. Then I looked at the restaurant manager, a really big guy. I said to him "Can you lift me up onto one of the bar chairs, not a stool?" He said "Sure. That will be easy to do."

So over came a chair and I gave the manage guidance on how to lift me up safely. The bar stool came out and I was lifted onto the bar chair. The manager then slid me into place at the bar table. I was up with the rest, instead of going home and sulking. To hold my legs in place, I simply put on my leg strap, something I use at times when driving but more often when using a power shopping carts.

You see, I can't get up into the chair on my own, but I can if I ask for help. The real barrier there is not my disability, but my willingness to suffer the embarrassment of being lifted onto the chair in the full view of everyone in the restaurant. This time my desire to be one of the normal people beat out the embarrassment. There are lots of other things I can't do on my own, but can do with help. It's just the way it is these days.

By the way, getting down was easy. I just slid sideways and fell into my wheelchair. Gravity helps sometimes.

Friday, 12 December 2014


I'm cooking bacon; I love bacon. I love smell of it as it bubbles away in the frying pan. I love the salty flavour of that hot, first bite. I love the crunch and chew of it as I pulp it from a stick of fried pork into a swallow that tastes good all the way down. My homemaker, a devout Muslim, is here today and even she admits that, while never haven actually eaten any, she loves the smell of frying bacon. I would make a very bad Muslim, or Jew.

When I cook bacon, I usually do a full package at a time. I use what I want immediately, which, at times, can amount to half of what I cook. The rest goes into my bacon container and into the freezer. That way, when I want a slice or three for a meal, or bacon bits for a salad or potatoes, I just reach into the freezer, pop the frozen sticks of bacony goodness into the microwave, and there it is, wonderful and ready to eat.

There is one cloud in the blue sky of my breakfast joy today. When I cook bacon, I don't use a spatula. I use a set of kitchen tongs. That way I can lift the bacon and turn it while keeping it from entangling in the other slices in the pan. I like good looking bacon; a spatula just clumps it all together, making it curly instead of the straight bacon that one truly sees as perfection. Unfortunately my hands are getting weaker; it is getting increasingly difficult to grab bacon with tongs.

It might seem like switching back to a spatula is the only way to go. Try it. Try using a spatula to turn bacon while seated in a wheelchair, where your line of sight is approximately even with the top of the stove, where your proximity to splattering grease is at face level, not apron level. Think about the mechanics of working across a hot, grease spitting frying pan while your mobility is limited by the wheels on which you rely. It's a rough go.

I suppose the thing I should remember, and be grateful for, is that, as of today, I can still fry bacon. I can still make bacon and eggs, with toast, ham and cheese. The only thing missing is Hollandaise Sauce. Not today. Today, bacon is enough.

Thursday, 11 December 2014


One of the toughest things about ALS is watching those around me die, and wondering when it will be my turn. It's terrifying to watch a strong man wither in the space of months, to see a woman lose her ability to walk, then talk, then breathe, all in a couple of years. Then I begin to ponder my own end of days. In the beginning, when ALS was mine and mine alone, much of this had little impact on me. As time as gone by, as I have met other PALS, as I have seen those in my own group weaken and die, it has become much more impactful, much more real.

I have a small pharmacy on my bedside. Of the dozen or so medications, I only take six on a regular basis. Oddly enough, four of these are directly related to my heart disease. I wonder at the irony of taking medication to stop me from having a heart attack, all the while dying from ALS. The intent, I suppose, it to allow me to live as full a life as possible until I can live no more. I wonder on a regular basis what might happen if I stopped taking my heart medication. I still take it; I guess I am afraid to find out.

Of the remaining medications, one is for depression. It actually serves two purposes; the first is to manage the Frontal Temporal Dysfunction which is a part of my ALS journey. This is the crying, the aphasia, the confusion that is caused as the neurons die in my brain. It happens to about half of PALS. It also reduces the likelihood of true depression, the impact of knowing what I have to look forward too. Suicide becomes less likely thanks to my "happy pill".

The other is an anti-coagulant to deal with the Deep Vein Thrombosis as a result of life in a wheelchair with no muscular activity in my legs. The medical team is worried that a blood clot might form in my leg, break off and travel to my heart or lungs, then kill me. I don't see the problem with this but they are insistent I take the pills. So I do.

I also have my friend Zopiclone, the one who hits me like a right hook from Mike Tyson when I need some help getting to sleep. Zopiclone is a depressant; Efexor is an anti-depressant. I find myself in that all too common position of taking one that offsets the other. The only real issue is that I can't, or rather, shouldn't drink alcohol when taking the Zopiclone. I try not to take it very often. In fact it loses its effectiveness if you take it regularly, like getting used to Mike Tyson punching you in the head. At least it doesn't bite my ear off.

The rest of the pills are primarily for the aches and pains that come and go with ALS. I suffer almost constantly from pain in one muscle or the others, low grade pain that passes as the day goes by, or moves to somewhere else. Percocet, Naproxin, and all the others simply wait there, silent, wondering why I don't use them more often. The truth is that the pain just isn't that bad most of the time. I'll live.

With this wonderful pharmacy on hand, I will have no shortage of tools when the day comes and I say "To hell with this". All I have to do is get the mix and dosage right, and make sure my last bit of scotch has the appropriate effect. After all, that's one thing you really don't want to screw up; a good glass of scotch.

Wednesday, 10 December 2014

I Should Be Fishing

I should be standing knee deep in an ice cold, rushing river, my legs protected from the bone-chilling cold by the insulation of my neoprene waders, my feet firmly planted on the river bed in my felt bottomed wading boots. I should be feeling the pulse and push of water winding its way from frozen mountain tops to the wild Pacific, its twisting dance a test of my balance and strength, its spray as it hits rocks flashing droplets of chill on my face.

I should be holding a powerful, flexing fibreglass fishing rod, bent near double under the strain and pull of a wild salmon running away from this unknown force dragging it from the safety of the river bottom, the wet of the line in my hand as I balance the retrieve and slow the free run of the level wind reel using my nylon rutted thumb as a brake. I should be shifting, adjusting my position to keep myself vertical and this denizen of the deep hooked, using my body as both a standing post in the water and a flexing willow as I work my way towards the shore.

I should be watching around me, checking for others who are doing the same dance with destiny that my catch and I are doing, making sure that I don't get trapped in other lines, making sure that there are no creatures of the forest lurking shoreside to make short work of all my efforts, taking their dinner from my endeavour in the river.

I should be fishing.

Once this was my life, standing on the banks of wild rivers, casting and retrieving until fate honoured me with a catch, feeling the bite of the icy wet wind rolling across the dark and dank forests bordering these coastal rivers, smelling the rot of now dead salmon who have given all they had to bring about the next generation, seeing the scavengers make what they can of this annual harvest of protein, bulking themselves up for the cold of winter almost upon us.

Once this was my life, traipsing the river bank, seeking the spot, that place where I could feel the power of the water, sense the salmon beneath the surface, where I could know that success was simply a matter of time, patience, and perhaps a bit of skill. It was my life to walk the forests along the riverbank, dodging the drips from condensation heavy cedar boughs, picking my way over the moss covered giants that once stood tall in this land of green. It was my life, and then it was not.

I should be fishing. I am not.

Tuesday, 9 December 2014

A Long Time To Get Here

I'm up, finally. It's been a long haul since last night, most of it spent sleeping. I went to bed at 11:00 PM yesterday and woke up at 1:00 PM today. I was up several times at night, what with having to go pee, having coughing fits, and needing to move my legs. So while it was a long sleep, it was not an uninterrupted sleep.

After I woke up, an event coordinated with another need to go pee, I managed to take my "morning" pills, thereafter immediately rolling back into bed, this time not to sleep so much as to doze and wonder, the next step in my awakening process. I do that a lot, get up in stages. After about a half hour I finally had the energy to grab my phone whereupon I checked the news and spent a while browsing Facebook. All of this took another hour.

It was 2:30 PM before I actually got out of my bed, this time to go to the washroom. After finishing the first bit, I washed up and then brushed my teeth. Ablutions complete, I went back into my bedroom and transferred back onto the bed. It was time to get dressed. The whole bathroom and dressing process, interrupted by a call to my daughter regarding Christmas travel plans, took around 45 minutes to complete. It was 3:15 PM and I was almost ready to get up for the day.

The last step in this whole journey of wakefulness is the transfer from my bed back into my wheelchair, perhaps the easiest thing I do each day. It's been getting more difficult as my ability to lift has been decreasing, but I can still do it without incident. So I did. There I am, up and ready to start my day, and it's only 3:30 PM. Thank goodness I get to stay up late tonight; Tuesday is Trivia.

The whole 14 hours of sleep, an hour of pre-arisal rest, the half hour bathroom visit along with the half hour to get dressed makes for a long night into morning. I spend more than half my day in bed these days. Of course soon, all too soon, that will increase to all of my day. I am not looking forward to that.

I am grateful that I can still get up and about. I can still make my "morning" coffee. I can still spend the rest of this day enjoying life as it presents itself to me. It's just that it takes such a long time to get here.

Monday, 8 December 2014

Shower Assistance

My Home Care Case Manager dropped by this morning, and by this morning I mean at 12:00 noon today. "Morning" is a very subjective word for me. I actually had gotten up and dressed over an hour early; in my calendar the appointment was set for 11:00 AM. I was wrong. Now, last night was a rough night, so I took a Zopiclone at about 1:00 AM and went out like a light until 10:30 AM. I dressed and immediately fell once again asleep. When she arrived, she rang to be let in. I obliged, and fell right back to sleep. When she came through the front door, unlocked as it often is, she called for me and I finally woke up for the day.

Her visit with me was one of the regular checks she does to ensure my quality of care is adequate, that my emotional state is reasonable, that I am doing okay given the circumstances. We talked about the issues in my life, both personal and ALS. We talked about how my condition was changing, how my arms were weakening, how my fine motor control was declining on the left side of my mouth, the coughing and choking.

The discussion of what would finally be a loss of eating ability for me brought up the subject of liquefying my food at some point. I said that when I could no longer eat, I would most likely just stop eating. The conversation stalled for a moment, then she asked me if there was anything right now that I would like to get more help with.

With much trepidation and caution, I mentioned the shower. My wobble has increased. My strength has decreased. The transfer into the shower is still fairly simple. The transfer out, what with the wet floor providing no grip for the wheelchair wheels and the suction of my flabby muscles on the shower seat making it difficult to slide across, is becoming increasingly difficult. It has become scary enough to convince me to skip my shower now and again. Then I get smelly, something I really don't care for; I suspect those around me don't care for it either.

I had a bunch of questions about the whole shower assistance thing. I talked about my own sense of comfort, or more likely embarrassment, given the condition of my body in general. She said it would pass quickly; I would get used to it. I talked about the kind of help I would need. She said the care givers would adjust as needed. I asked about the who and the how of it all and was assured it would work with my current schedule; my current care workers would help me with my shower when they come to stretch me.

Then I asked the most difficult of questions. I said "My care giver is a very pretty 27 year old girl. If she starts handling me when I am naked, things might happen." My case manager said "She has other male clients. I am sure she has seen that before." Then, as if to close the matter, she said "I don't think that will happen anyway." She is probably right. There is enough embarrassment to go round.

So, come January, I will start having assistance in the shower. I knew it was coming. Actually I am glad to have the help. It is not, in this case, a loss of independence; the care workers are here anyway for my exercises. Now, without fear of falling or hurting myself, I get to be cleaner, to smell nicer. How can that be bad?

Sunday, 7 December 2014

It's The Gift

I saw an ad on Facebook for the Rich Dad-Poor Dad seminar. That guy in the advertisement certainly looks nothing on earth like my Dad looked. The man in the ad has a plastered on smile with perfect teeth, trending clothing, not a wrinkle of care on his face. He is clearly the product of a well thought out advertising department somewhere.

When I was a kid, my Dad was usually in work clothes, his dirt covered hands patched with scabs from where he had cut them while working. He had the look of a man who worked hard, and lived hard. There was no richness in the household of a labourer. Even when he dressed up, he looked bent and hard. He smiled, and he laughed too, but it sure didn't look like that guy in the ad.

Being rich is a need that is thrust upon us these days. Our consumerist society makes it all important, that we acquire wealth aplenty, that we teach our children to do the same. Advertising agencies and the corporate consumer machine constantly blast us with artificial images of happiness based on acquisition. We are taught by the consumption machine around us to want, to need, more and more.

Today I am going out into the annual orgy of shopping that we loosely based on a Christian story about Jesus, a story we see in many religions, a story of birth, sacrifice and re-birth. This theme arises in ancient religions as well as modern ones. The Christians have had the good fortune to be borne into an era with better communications and marketing departments, plus bigger armies.

So out I go, facing the maddened throngs, looking for that perfect gift for my children and grandchildren, for my Mom and Ray, for friends and family alike. Out I go into the world of over-priced toys that will break in a few weeks, clothing made by child labourers in the Third World, knick-knacks and oddities that lose all their value the first time they are used. Within all of this mess, I am going to try to find things that a fun, meaningful, lasting.

I think the only truly lasting gift I can give to those around me is to tell them that I love them, to tell them how much their care and support means to me, how much having them in my life makes it worth living. It costs me nothing to do this; I need to do it more often. Sure, I will buy things that will pass away, as we all will. What I want them to remember is not the gift, but the giver. That's a lesson I learned from a radical, pacifist teacher, a poor man from the Middle East, a carpenter. It's the gift, not the giver, that makes all the difference.

Saturday, 6 December 2014

Nothing Simple, Nothing Easy, Nothing Fast

I have a friend coming over for dinner tonight. She's been over before but only a couple of times. She's known me for a few years; in fact she knew me when I was still walking. She is not a "close" friend but we see each other at social engagements on a regular basis.

Having someone over is not such a big deal for me. I have company at least 3 or 4 evenings of the week. I really don't spend all that much time solo. Still, even with the best and closest of those around me, having someone over for dinner requires certain logistics. Those logistics have gotten more challenging over the last year or two.

Take cooking for example. I love to cook dinner. It is one of the great joys still in my life where I feel almost fully enabled. I love chopping the vegetables and onions, slicing the potatoes, preparing the rice, cooking whatever meat is on the menu. I am good at it; people rarely leave my home hungry. Still, there are things in the food preparation process that are more difficult now. For example, if I am slicing up just a couple of things, such as a couple of peppers and an onion for saute, then I put the cutting board on my lap and work there. If I am cutting up a lot of things, such as the ingredients for a Greek Salad, I will often move them all to the table so I can work up close at my height, not counter height. Cooking is still fairly easy with a few simple changes in approach.

Then there is cleaning up. I have trouble with the sink; it's at counter height and set back, a normal sink. In my wheelchair, I can barely reach the taps and I cannot see the bottom of the sink. Loading the dishwasher is a real challenge as I cannot open it full and be in the kitchen at the same time. Given the challenge with cleanup and the ease with cooking, most of my friends and family have learned to let me cook, because I love it, but to do the clean-up, because I have such trouble with that part.

Then there is the whole "after dinner" stuff. Often we watch a hockey game or some TV, perhaps a movie on Netflix. Or we just hang around and talk. They sit on the couch or side chair while I stay in my wheelchair; definite separation. What if I want to sit on the couch? Why not just transfer? Well the transfer from my chair to the couch has gotten increasingly difficult over the last while. The 4" lift from the soft surface of my leather couch to the cushioned surface of my wheelchair is anything but easy.

You might think "you are just doing it once" but then you forget about that most normal of after dinner human functions. Just like the rest of you, after a nice meal I have to go to the bathroom at some point, usually just to go pee. So that means transferring back to my wheelchair, not a simple process. In fact to watch me do that transfer can be scary, and definitely displays my limitations. So if I make the transfer, what do I do when I have to go pee?

There are lot's of other reasons to get up and down from the couch; getting snacks, getting more wine, turning lights on or off, lots of things. If I am on the couch, I am down and settled; those who spend a lot of time with me know this and help out. If I am in my wheelchair, I am definitely separated, but up and mobile; I don't need a lot of help.

My really good friends, those who are around me a lot, know what to do. For the whole "going pee" thing, they leave the room or avert their gaze and let me use my jug. So now to the crux of the issue. I have female company coming tonight. We are likely going to want to sit on the couch and watch a movie. She is not used to my jug. Do I sit on the couch and ask her to look the other way so I can go pee, or do I just stay in my wheelchair so I can go to the bathroom and do other stuff as needed?

You see, nothing is simple, nothing is fast, nothing is easy. That's ALS for you.

Friday, 5 December 2014

Dad Days

I have so little to say today. There simply isn't that much of interest in my life right now. It's all more of the same; if you have read any other post in my blog, you will quickly discover what that means.

Today is just one of those days, those days when I wonder what there really is to do with myself. Of course I have my Home Care exercises and my blog and some chores, but really, those aren't all that much. I mean, would the home care worker really be upset if I cancelled for today? I think not. Would it mean much if I skipped my blog for today? Not really. And those chores that I have can wait for another day; they always do.

That's a problem with my life in general these days, the overall sense of a lack of purpose. I am simply waiting around as this disease takes is toll on me. I'm waiting, hoping, for the next good day, but expecting and planning to feel just as bad tomorrow as I did this morning. I don't feel like I contribute anymore, like I have any value other than, well, just being me within my family and friends. And there are a great many days when I doubt the value of even that.

It's easy to say "find something to focus on" or "volunteer somewhere" or some such thing. The problem is that I simply don't have the energy for this. If I have any energy, I want to use it doing something meaningful to me. The problem is that so little has meaning to me these days, as I sit around waiting for things to get worse.

Christmas is coming. So are my children. If you were to ask the most meaningful thing in my life, it would have been my role as a husband and father. I loved, and still love, being a Dad. Come Christmas, I will once again be inundated with Dad things, surrounded by my children and grandchildren. Those days will be meaningful to me. Those days it will be worth the effort of getting up and getting dressed. Those days will be of interest.

Thursday, 4 December 2014

Choking And Coughing

These days I am pretty consistent around choking. At almost every meal there is a moment when I have to cough food back up, food that mistakes the turn in my throat and heads for my lungs instead of my stomach. These days it is very light weight things, sometimes a drop of water or a small bit of food. Eventually all swallowing will fail and I will be at the end of my "eating" road.

I've come to a bit of a decision around that; I've decided not to get a feeding tube. When I can't eat, I won't eat. That will be the end of that. My last day of dining will be the beginning of my end of days. For a while I will go on a liquid diet, but eventually even that will fail me. There will come a day when even my own saliva will cause me to choke.

Of course I say this now with some certainty. If I have learned anything from ALS, it is that this line in the sand I keep drawing is highly mobile. I am certain it will move, and move again, many times before I finally do hit the end of this illness. Nobody wants to die, not even me. Life is good, even when it is bad. Still, I know there will come a day when it will all be too much.

That's the other problem. I have a very high tolerance for "too much". I have spent my life finding solutions to the problems of daily existence. I've always been the one to figure stuff out, for myself, for my wife, for my children, for others. I am always looking for a way to solve a problem. Even yesterday I was asking the people who put the lift system in my truck about ways to change it so that it will be easier for me to get in and out. I said recently that when I could no longer get in the truck, I would quit driving. Yet here I am looking for ways to change the rules on "get in the truck".

It doesn't help my swallowing today that I have swollen glands in the top of my throat and roof of my mouth. I suspect I am fighting off some sort of virus, one of the millions that run rampant in enclosed spaces of winter life. I've had my flu shot so this is probably just the mild edge of something which will pass quickly. Nonetheless it adds another layer to the challenges of daily living.

I would like to say that "this too shall pass away". Alas, it will not. Certainly the swollen glands will un-swell. It is the problem with swallowing that will not pass; it will simply get worse. Oh well, it's not like I didn't know this would happen. But knowing doesn't make it any easier.

Wednesday, 3 December 2014

A Little Thing

One of the things with ALS is that when you see a change for the first time, there is a tendency to dismiss it as a one off thing. You have to learn to tell the difference between a change because of ALS and a change for other reasons. Take this whole "biting my lip and tongue" thing. I have to ask myself, was this just an odditity or is it a real event, a clear change in what is happening to my body.

I have already decided on that one; it is a real, ALS related change. It's been coming for a while, with all the harbingers necessary to tell me that it was eventually going to happen.

This same kind of thing is going on with my ability to get into my truck. For some time I have been noticing an increased difficulty with the transfer from my wheelchair onto my truck lift seat. In the beginning, no matter what the conditions, I easily lifted myself up the 3" gap from my chair to the lift. As time has gone by, this lift has been getting more difficult. The conditions, things like snow on the ground or a slope in the parking lot, impact my ability to make the transfer.

Last night as I was leaving the Cat 'n Fiddle, the problems all came together. Amber, one of the staff, wanted to see the lift system. I am always very happy to show it; the whole thing is very cool to see. I went out to the truck, battled through the snow and ice on the ground, set myself beside the truck, and could not make the transfer. No matter what I did, I could not get enough lift to put myself on the seat,

Amber did her best to help. Alas, in the end, all I could do is yard myself up and over using the steering wheel as a pulling point. I did make the transfer, but in a manner so lacking in elegance as to be embarrassing. Amber had been asking me a number of questions about how ALS affects me and my life. She got a first hand look last night.

Unfortunately all the physical effort from the lifting and pulling convinced my bladder that this was the perfect opportunity to release some stored contents, contents of which I was completely unaware, having gone to the bathroom not 15 minutes earlier. So there I was explaining to Amber that I had to go home right away and change my clothes. Impressive, no?

You just have to get over this stuff. This is life with ALS, the steady decline, the loss of ability, the loss of dignity. It's just a part of the process. The problem is that I must now ask myself the question, "Was the failure to transfer to the lift seat a part of the process, or a one off event?" I have to wait for a while to see if it happens again, but my money is on "a part of the process". After all, that is how this whole process works, a little thing here, a little thing there, and then it's all over.

Tuesday, 2 December 2014

It Bites

I ignore it a lot. I hide myself from the reality, blinding myself with blatant willfulness and a fair bit of self medication. I run from it, hide from it. I go on road trips and travel and weekend escapes. But in the end, it always finds me. In the end, it knows where I am. That's because no matter where I go, whenever I get up, there it is with me.

ALS has claimed, or is at least attempting to claim. another part of me. Many months ago I began writing about swallowing mis-coordination. As the months have gone by, I have written about trouble with word formation and occasional problems getting my tongue to shape and form the phrases that I wanted to say. I'm not slurring, but my diction is not what it once was. I am still intelligible, but my conversation needs to stop for the odd dramatic pause while I get my words right. I wrote about coughing and choking, the general crap that goes with this shitty disease.

Over the last few weeks, this gradual progression has made itself known, this loss, the next loss in this journey of loss, has become all the more evident. I am losing fine motor control over the left side of my tongue, cheek, and jaw. To put it confusedly but rather bluntly, the last few weeks have seen me struggle with mastication coordination.

The truth is, I really wish that was as salacious as it sounds. It would be wonderful if my current struggles truly did involve some sort of hand-eye coordination issue. Alas, it is not so. The new beast that arises within the failing that is me, is my new inability to eat a meal without chewing on my tongue or my left inside cheek. I bite myself, and not in a good way. I bite myself, and not for fun.

It's been a while coming. I've seen the shadow of this on the horizon. I've struggled with control while talking. I've coughed and swallowed the wrong way more than once. Over the recent days and weeks, it has become clear. My ability to talk, chew, kiss, bite and generally use my mouth is failing. I would say it sucks, but I am not entirely sure of that functionality either.

This is no surprise. Nothing is going to happen tomorrow or over the next few weeks. My current strategy is to learn new ways of eating, new ways of talking, new ways of sucking. This is the first part of a long progression. It is what will happen next, probably long after my arms fail me. The pathway becomes clear. My arms will weaken even more. I will lose my ability to eat, drink and talk. Then, finally, and hopefully, I will lose the ability to breath.

It's not a real surprise, though I did expect my breathing to go first. It's just another part of the progression. I would say it sucks to be me but that is clearly redundant. Let's just say that it bites.

Monday, 1 December 2014

Repetitive Repitition

Someone close to me recently told me she only reads my blog every once in a while because it was repetitive, that I talked about the same stuff all the time. As with all critique, I took this in and pondered it for a while, thinking about repetitiveness. In some ways, she is correct. I do cover the same themes a lot; there's not a lot else to talk about. On the other hand, I think I share my life pretty honestly, from the banal to the extraordinary.

Let's face it, the tedious death march that I am on is repetitive. There are very few "headline" days. You are never going to see something like "STOP THE PRESSES. Richard dropped his fork again only this time his hand was ever so slightly weaker than last time"; or, "HEADLINE. Richard is tired again, just like last time, just like all the time." ALS is a slow, grinding illness where you really don't want the headline days.

Think about what those headline days might be. The day I got my wheelchair was a headline day. The day I realized I would never walk again was a headline day. The day I give up my truck will be a headline day. The day I can no longer live alone in my apartment will be a headline day. Ultimately, the final headline will be the one I am not here to write. That should end the repetitiveness.

This ennui of tedium exists even in the ALS research world. So many of the headlines in the research are simply restatements of previous headlines. So much of what we learn is incremental, small, and uninteresting in and of itself. There are only so many times you can hear about genetic manipulation in mouse models before you have had all you can take.

I am trying to share my pathway. If I was really true to that goal, I would simply describe the challenge and exhaustion of each day. Now that would be really repetitive. The difficulty with tiredness, the difficulty in toileting and getting dressed, the sore arms, the irregular appetite. Of course, all of this is old news, completely lacking in stimulation or excitement.

So I am repetitive. So what? Maybe I am, maybe I am not. It might be that this life is tedious and boring, stifled with the limitations of ALS. But I have probably said that before.