First Thing, Last Thing

My daughter Katie's prompt card suggests I write about the first thing I think about in the day, and the last thing I think about in the day. It's not what you think. You see, other than this one small health issue I am pretty much like every other 57 year old man on the planet. When I wake up in the morning, the first thing I think about is going pee.

Then I begin to think about what what I need to do to get to the bathroom, working myself up and out of bed, looking for my cane and glasses, wobbling my way down the hall worrying that I don't fall, and then relief. So I guess the second thing I think about each day is ALS.

Most of my day is pretty normal. I get up, I get dressed, I have my coffee, I do my blog, I go to work, I come home after work and have dinner, I read, I sleep. Each  day there is a variation. For example last night Tonny and Brad came over and helped me transfer some wine from the primary fermenter into a carboy for clarifying. This process, by the way, is called racking off the wine. They stayed for a bit and we drank some wine and talked about guy stuff - women, food, work, and oh yes, women.

I have the same trials and tribulations as everyone else, plus a few of mine that are a bit extra. For example I got home yesterday to find two letters in my mailbox. One was a photo radar ticket from the Calgary Police Service. Apparently my truck still likes to speed even though I try very hard to keep it from acting so enthusiastically when it sees an open stretch of road. I am not unhappy. I was speeding, and that means I can still drive, something that will change in the next year.

The next envelope was a letter from the Family Maintenance Enforcement Plan. Apparently having a terminal illness does not mean my ex-wife will forgive me her spousal support payments. You see I recently decided that I will need my money to pay my health care costs rather than paying so she can stay home and not work. I find it sad that I am rapidly losing my abilities to work and live and yet the only emails or letters or communications from my ex are demands for money. Never a word of sympathy, never a word of care. Simply demands for money. She has a court order and she has a legal right to enforce it. I am told this is normal in divorce, to be expected in life.

Like the rest of you I have money challenges, only mine are a bit different. For example yesterday I got the quote for my new wheelchair. The government will pay a given amount for a wheelchair for an ALS patient. I pay 25% up to $500 and a basic wheelchair costs about $2,000. Since they don't expect me to live long, the government says all I need is a basic, heavy, clunky wheelchair.

Those of you who know me know I move about fairly quickly even in that monstrosity. I want a chair more suited to my lifestyle and enthusiasm. I need a strong yet lighter weight chair, one that is easy to get in and out of my truck, one that is easier to handle on the streets and sidewalks of Calgary, one that I can get onto the sailboat. The chair I want will cost about $5,000. I have asked for funding from the government; I don't expect to get it. With a short lifespan I am a bad investment. As has ever been the case, I will pay.

So I think about all these things in my day. Most of them are the same cares that the rest of you have, some of them are different. Most of them are tinged with my reality, yet most of them are mundane. I go through my day dealing with life as it comes. I get up, I go through my day, then I sleep. Routine.

At the end of the day I push myself into bed. I move about clumsily as my legs don't help me much. I adjust my covers as best I can, trying to use my right foot, with its limited strength, to lift the covers off of my left foot, which is pretty much done. I adjust, I turn, I fidget.

Then, as I drift off to sleep, the last thing I think about is, well, you know. Oh, and ALS too.

Exhaustion

I am tired. What do you do when the least little thing tires you out? What do I do when the mere act of putting on shoes, or socks, or pants is enough to cause you to need to stop and rest. The blithe answer is simply to stop and rest. I wish is was that simple.

As I write this blog, an advance effort I might add, I have a load of laundry in the washing machine. It took all my efforts to get the laundry collected and down to the machine. Next comes a load of linens. My problem is that I need help with this but I am loathe to ask my son for help. He is busy doing his own thing. He wants to "do it later". Then I have to ask him again and he gets annoyed, mostly with himself.

Don't misunderstand. I am deeply appreciative of my son's help. He has given up his life to come to Calgary and care for me. He left friends, family, work and a whole community behind. I am dependent on him now, or at least partly so. Nonetheless I must still ask for his help.

Even the act of asking for help is exhausting. I have to ask, which means I can't get things done on my schedule, something I have always been able to do. I am forced to wait, and be patient, and accept the reality that I may have to live with mess, or dirty laundry, or a full dishwasher simply because I am unable to do the task without exhausting myself. Who do I call? How do I ask for help when I feel diminished by the very act of doing so?

It must be hard to be a caregiver to someone like me, someone who expects things to be done on my schedule and when I want them done. I has to be frustrating for someone like my son, who has his own life and his own schedule, to put that aside based on the demands on a failing invalid. I can appreciate his challenges. I can't expect him to read my mind yet I want him to anticipate some of this so I don't have to ask. I want to be a little less dependent and a little less tired.

Let's face it; none of us is really good at walking a mile in the other guy's shoes. We, as human creatures, are all self-centered. It's a basic survival skill. We all think of things from our own point of view first, even those who proclaim otherwise. This is simple human nature and it's why religions throughout history have lectured and directed and instructed us in the art of putting this basic state aside. It's hard work to do.

Depending on others is exhausting. Doing stuff myself is exhausting. Dealing with my own needs is exhausting; understanding the needs of others is equally so. I suspect that this whole process is what wears out those afflicted with ALS. Then, with all this exhaustion, I need to find the strength to carry on, to uphold and uplift those around me, to make them feel not so bad about this dreaded disease.

I just got up and already I'm tired. I need a nap.

The Calm After The Storm

I am feeling better today, slowly rising up from the depths of fear and despair. This is not bi-polar, not dramatic, not pillar to post. This is the steady effort of focusing on the now, on the present, and working to realize that much can happen before the end of my life.

My life is an ocean, a persistent sea that rises and falls with the storms of emotion that pass through it. I can feel the pressure rise as the storm reaches me. I can feel the tension mount, the crackle of lightening in the distance. As the clouds of fear fly towards me, bursting upon me, the waves of emotion rise up and batter all about me.

I am not a ship upon that sea; I am that sea. I can be calm on the surface yet filled with turbulence below. I can be full of life yet as dead as stone. I am rich beyond compare yet poor as a starfish. I am crowded yet alone. I know that the nature of my being, my persistence, will take me to places I never expected to go.

My tide is ebbing, flowing ever outward exposing the ever distancing shore of my existence. I am bounded by forces beyond my control, shaped by events that I cannot change. All I can do is press on, shifting endlessly, meeting the winds and shoals, moving.

These storms that pass in and out of my life are the things that shape my surface. Deep down, beneath the waves, is me. I am deeper, richer and stronger than the buffeting waves on top. These storms pass, leaving behind a shaken surface. These emotional waves cresting atop my soul will pass over me. When they are done, when the storm is over, I am calm, steady, safe and secure my own spirit.

Today I got up. Today I went to work. Today I persisted. Tonight I will sleep. Tomorrow I will awaken again. While the winds and storms of time and tide buffet me all around, I will simply be. I will persist. I will persist until I can persist no more. And then I will return from the rock of land that we call life. My spirit will flow into the seas again.

Today, for today, I will let this calm be part of me. I will not be afraid.

I'm Frightened

Last night was rough. I had trouble getting to sleep and then I awoke at 4:39 AM filled with worry and dread. I laid in bed thinking about what is happening to me. If that is not frightening enough, I begin to think about what will happen to me. I think about the future. I worry about who will take care of me. I worry about my financial situation. How long will my money last? Who will care for me? Where will I live? How will I live?

If anything makes me think about suicide, it is the fear of ending my days in poverty with no place to live and nobody caring for me. I don't want to live in misery, in poverty, in fear. I don't want to be alone, uncared for, stuffed into an institution waiting to die. If that is what my future looks like, I want to end it earlier rather than later.

Had I the time, I would have taken the money from my divorce and bought another home. Had I the time, I would have worked and saved and built my resources back up. It's not fair; I simply don't have the time to make it back. My family is not wealthy; there is nobody out there with the money needed to help me get a home, to help me make that home suitable for myself. There is nobody out there with the resources and devotion to help me live the end of my life in peace and modest comfort. I was supposed to do this for myself but I am running out of time.

This is the real terror of my situation, not that I will die alone and broke, but that I will live that way. I don't want to end my days in a care home where the staff don't give a damn about me. Let's face it, most of these places are just institutions for warehousing the forgotten amonst us. They are mailslots for the lost parcels, those amongst us with no place to go, no family to care for them or inadequate resources.

I am not Stephen Hawking. I don't have money. I am not the celebrated smartest man on earth. I am a working stiff, a guy who gets up every day and does his job. I am the guy that nobody erects monuments to, no pillars to mark my passing. I am just a regular joe with regular resources. I get up, I go to work, I get paid. I live, and then I die.

Dying is easy. Living scares the hell out of me.

Buddha Belly

I have put on a few pounds lately, about five I would guess. I don't own a scale these days. This is kind of frustrating as I had spent the last year and a half getting my weight under control. Of course there is some contention that my weight loss, which started after the symptoms of ALS appeared, is simply a function of the disease.

So I put that theory to the test, ALS and weight loss. I started eating all the things I had given up. I started eating bread again, along with desserts and grains and all that stuff. On my diet, my line was "if it's white, it's bad". So rice was out except for small portions of brown rice, bread was bad except the odd bit of brown bread. And God forbid I should eat ice cream (but I did anyway sometimes).

My diet had moved to more proteins and fewer carbs. I started losing weight. When I started eating more carbs, I started gaining weight again. My Buddha belly is growing once again. The real question is, should I worry about this? It's not as if the weight gain is going to kill me. My heart will not be more burdened or my life span unduly shortened by a few extra pounds. Even if I was morbidly obese, the morbid part is coming from somewhere else.

In addition, given what my future looks like, it seems only fair to me that I should enjoy eating while I can still do it. I want to savour the taste of good food before I lose the ability to eat altogether. And it's not as if these pounds are going to chase off all the women clamouring to be with me. So what the hell, why not eat and enjoy it?

There is a clinical side to this as well. With ALS, my doctors have advised me not to lose weight and not to engage in strenuous exercise. There will come a time when I cannot eat; having those extra pounds will prolong my health believe it or not. Strenuous exercise is actually a net negative for me these days. Working out to lose weight will simply exacerbate the damage of the dead muscles and will actually accelerate disease progression.

What the doctors and physiotherapists tell me to do is lightly exercise muscles that aren't affected by ALS progression yet and stretch the muscles that are dead in order to reduce cramping. This means that doing simple things like getting dressed, brushing teeth, going to the bathroom, getting in or out of bed or even turning over in bed constitute adequate exercise for me. These activities are very tiring to failing muscles and can take a lot of energy, in other words calories. It may sound odd, but the mere act of trying to lift my quilt with my dead left foot requires a substantial amount of energy and attention. If I go too far, I get exhausted quickly to no benefit.

Now to get really counter-intuitive; think about the exercise process. It is intended to burn fat and build muscle. I cannot build muscle except in those muscles that are not affected yet. So if I engage in any strenuous active such as a cardio workout and I don't have fat, my body burns muscle instead. I need the fat as a target for any sort of calorie loss, especially later in the game.

Perversely, it is not the dead muscle that is burned if there is no fat, since that muscle tissues isn't even connected to my nervous system; those muscles are not firing and not working. The "feel from the burn" happens because of sensory nerves, all of which are working fine. It is the motor nerves that are dying. What most people feel as the burn from exercise happens with me too, but there is no underlying muscular development in the damaged muscle tissue.

To top it all off, we really don't know which of these muscles has entered the denervation process, since it is almost impossible to tell in the early stages. There is no test for ALS at any level, let alone the muscular denervation level. They can only tell if the nerves are failing once the failure becomes highly evident. All we know for sure is that all of my voluntary muscles will eventually be affected. In addition the human system is all linked together, so working my upper body actually stresses my legs, which results in muscle exhaustion which is really nerve exhaustion since the muscle don't actually work anymore.

It gets even better. Recent studies have found that people who drink alcohol have slower progression rates than people who don't. This is a loose correlation and nobody can really prove causation, but this is the only silver lining I have seen so far. Drinking helps!

So basically, I need to be a fat drunk to stay alive longer. Any takers?

Sunrise

It's another one of those beautiful sunrises, where the clouds cling just high enough for the sun to glaze their root with peach, gold and orange in the morning breath of light. The edge of blue is made all the sharper by the cotton candy wisps, dark to the west and growing brighter as I slide my glance along the horizon to the eastern glow. I sit; I watch.

I say that I am not a morning person but this is not true. The truth is that I hate to get up in the dark, I dread the climb out of my warm bed, the struggle through my morning ablutions with the glare of artificial light my only illuminator. The darkness makes me dull, morose. My emotions feel lumpy, grumpy and bumpy. I am slow to respond, as if the darkness further weakens me. I am a living dead.

Then I see the sunrise, the morning breaking in glorious shades, creeping over the skyline and slowly sliding up into day. I see the blush of colour, first weak against the darkling sky then stronger as the sun pushes back the beast of blackened night. The blue leaks in, staining black to gray then blotting it away altogether. Morning clouds glide by, proving the moving power of the air and all of God's creation.

As the day creeps out from the clutches of night, I gather power. As the sky moves from a stone to a feather, the weight of my existence eases. As the clouds move from west to east, they move me. As light invades the darkness, my mood is lightened. So perhaps I am a morning person. Perhaps it is the night that is my real problem.

I am reminded of a line from "In Flanders Field" by John Macrea; "These are the dead. Short days ago they lived, felt dawn, saw sunset glow." The sadness in this poem, the loss is so powerful. Short days. They saw sunset. This moving poem acts as a mirror for me, a reflection opposite to my view. Getting up in the morning to see the morning light is an act of wonder, raising from the dead of sleep to the light of day. The sun is a resurrection.

I am alive. Living. Seeing sunrise glow.

Humility? Not So Much.

My daughter suggested I write about humility, or what I thought humility is. Let's face it. I don't do humble all that well. In fact I barely do it at all. So how on earth can I have anything to say about humility. Well the reality of my disease is that it forces me to be humble, to ask for help, to accept my limitations. Is that humility? Well it certainly is humbling.

The word humility is actually based on the Latin root "humus" which means earth. So to be humble is to be grounded, low, or from the earth. The Christian view of humility is that it is tightly linked with temperance. Anyone who knows me knows I definitely don't do temperance, so that's out. I have been pulled kind of low these days but I still have my spirit. Yet I do see myself as well grounded, rooted in some fairly basic principles.

I believe in doing my best, in working hard to make things work, in doing things completely and completing things. This isn't always true, not an absolute. I fail. There are plenty of things I have started but not finished, plenty of times when I just didn't want to work or or make things work. On the other hand I can always strive to achieve those goals. So I have principles and I believe in things, but that doesn't always lead me to humility.

The toughest thing lately has been around my need for help. I have always been a strong fellow, capable and able to look after myself. I have looked after myself, and my family, for most of my life. Now I can't do that. I can't carry my own water. I am losing my ability to do for myself, drive for myself, care for myself. This is humbling, that's for sure.

It's not that needing help is a bad thing. Still, it hurts. It is difficult. Given my self-sufficiency this loss is a real blow to my ego and self-esteem. I can see this hurt and loss of self-esteem coming out sideways at times in destructive ways and in needy behaviours. I lash out, I am grumpy and quick to anger. I complain. Sometimes I pout and am petulant. I did all of this before ALS but it's amped up with the disease. Ultimately all of this is an expression of the emotional pain I deal with every day. I am definitely feeling humbler these days and a bit remorseful at times given the way I sometimes act out.

Maybe I should look at it from a more spiritual approach. Perhaps all this failing of my body helps me to remember that humility in spirit is what is most important. It could be that I am learning how to put aside my pride and reach out for help. I can say for sure that I am certainly having to trust in the kindness of others to get through my day. To admit my weakness, that is humbling.

Humility is hard to do and I am not good at it. Perhaps pride is my real problem.