Thursday, 30 April 2015

Pain Levels

I've been struggling with a persistent muscle cramp in my back, on the left side, for a few days now. Fortunately it only hurts when I take a big breath or make use of that side of my back, like when I go to sit up or roll over in bed. In other words, it's a bloody great nuisance, but only moderately painful.

I divide pain into three separate classes, all of which I get on a regular basis. You can judge the level of pain by the decibels of scream or moan which goes with it. Your basic level of pain, the stuff that most of us get, like sore joints or stiff muscles, even when it is persistent for me, generates the usual grunts and groans that most of us make. It's the entry point for both chronic and passing pain.

Then the is the level two of pain. This is where the yelping and ouching gets serious but not really bad, where the volume and number of outcries increases, but screaming has not yet begun. Stuff hurts, but you can shake it off after a while, sometimes a long while. This would be like breaking a big toe or some other minor bone. I yell for a bit, perhaps there are tears, then it goes away. Pain killers are often involved here.

The top level of pain is what I call the "stab me with a knife" level. This actually happens to me a fair bit with ALS. By the time I am taking serious painkillers for something, it's usually at "stab me with a knife" level, where the hollering is more than just a little noticeable. For example, when my shoulder was hurting a couple of weeks back, that was "stab me with a knife" level pain. I needed the pain killers, the big ones.

This persistent muscle cramp is somewhere around a high "level 1" or just barely a "level 2". It's bad enough for me to emit the odd "ouch" or some other more forceful expletive. It's not bad enough, nor persistently sharp enough, to generate a yell or tears. It is, however, persistent, making movements like taking a deep breath or lifting in my chair truly uncomfortable.

This disease has gotten me use to low grade discomfort like this. It's not real pain, just the kind of pain that annoys the shit out of you with its constancy and persistence. I am now on day four with this muscle pain. Only once in those four days has it gotten bad enough to warrant Extra Strength Tylenol. Mostly it just bugs the crap out of me.

Wednesday, 29 April 2015

I Hurts Again Today

I am moving slowly this morning, slower than usual. I am breathing tentatively, shallowly, carefully. It seems that sometime yesterday or perhaps even during the night before, the muscles in my back, just below my still painful left shoulder, decided to cramp up. There are a lot of muscles in that area but if I were a betting man, my money would go on my Lattisimus Dorsi, aka "the lats".

Cramps are a part of the game with ALS. Sure, everyone gets them. I just get them more often, more persistently. No amount of massage or medication seems to make the cramping stop, except for some very serious anti-cramping medication which I don't have, and until this very moment have not needed. Up until now, cramping for me has been spasmatic, coming and going with neither rhyme nor reason. This one seems to be hanging on for a while, locking in place.

I've done nothing to injure this muscle, no heavy lifting or awkward twisting. The only thing I could possibly link to this painful situation is the change in my wheelchair, something which, thanks to the help of Michael, has been resolved. I am in my own chair once again. Yet, even with order restored to the wheelchair universe, this cramp persists.

For a painless disease, there is a heck of a lot of pain that goes with ALS. This is one of the types of pain which, while not directly related to ALS, is an outcome of the disease. Nobody knows for sure why these muscles cramp, what triggers them to tighten and then let go. Everyone with ALS will tell you it happens. For me, these cramps seem to act as a harbinger, starting up early in the muscle deterioration process. What this cramp is doing is letting me know that my chest wall muscles are now in the game. How long it will take is a bit of a crap shoot. My guess? A year or two.

Consensus is that loss of chest wall strength, which leads to loss of breathing capacity, is part of the final decline for most PALS. I've heard it said that once your FVC, your ventilation score, gets below 50%, your definitely in the final slide. Some have suggested it is the "six month marker". I don't know about all of that. What I know for sure is that most PALS die from breathing related complications, and lack of chest wall strength is a key to that loss of breath.

What really sucks is that it hurts so much along the way. I can move about, with twinges. I can breathe, shallowly, with twinges. It's best when I am still, laying down, a natural win for most PALS. The problem is, of course, I am not most PALS. Or maybe I am. I want to up, about, alive, active, doing something. Even if it hurts a bit. I suspect most PALS actually feel this way more often than not.

Tuesday, 28 April 2015

Friday; Get Ready

Perhaps it is my Gaelic heritage, that incessant line of Scots and Irish for whom compliance and ordered behaviour was not only nearly impossible, but highly unlikely. Perhaps it is my Anglo-Saxon heritage, that improbably blending of the inevitable with the inconceivable, both parties of whom saw no other way but theirs. Perhaps it was my upbringing, seeing the unlikely as possible, and the impossible as inevitable. I don't know.

What I know for sure is this. I will do what I want to do, regardless of those who fear for me, regardless of those who are frightened that I might do it. I will do what I need to do, what I must do, what I am driven to do, regardless of those who will counsel me in the uncertainty and absurdity of what I am intent on doing. It is only the freedom to move forward, the power of what I can do, that keeps me doing it. When I stop, it will be over.

I am a stubborn man, insistent on my ability to do what I can for as long as I can. This is my only weapon left in life. I am no longer able to buy my way out of trouble. I am no longer able to force my way through. I am no longer able to negotiate, reason, navigate, or perambulate. I have pretty much reached the end. All I can do now is insist, and persist.

All of this is preamble; warning, if you wish, about what I am about to do. Perhaps I will not do it today, but do it I will. That doing is the next trip, the next road trip, on which I am about to embark. I know that there will be those who see nothing but fearful outcome and disaster. I know there are those who will see, first and foremost, all the things which could fail, all that which could go badly. I know there are those who will supplant my desire to live with their fear of what living might do to me.

I don't care.

Okay, perhaps I do care. I must confront myself, asking if I will allow my compassion for their feelings and fears to dominate my desire to live what I have left in my life. Plain and simple, I can no longer worry or concern myself with what might happen. Whatever happens I will deal with it. That's how I keep going.

So, regardless of partnership or outcome or resource, I am going on the road again. It is where I am free. Someone will seize a credit card. Someone will freeze a bank account. Someone will find me, hunt me down, demand that which I cannot pay. In the end it really doesn't matter. I will die from ALS. All the rest is crap.

Friday. That's the day. You can be with me or against me, in support or in fear. You can join me or be apart from me. No matter what, you can watch the show. I plan on living until I die. I plan on moving until I stop. If nobody rescues me, I will simply die where I end up. Between me and home lies nothing but money and time, and I am running out of time. I don't really give a shit about the money.

Monday, 27 April 2015

A Normal Monday Morning

It's just another normal Monday, or at least close to normal. The only break from my Monday routine so far has been that my Home Care Aide arrived about 90 minutes late. Apparently she had an earlier client who needed additional time and care. Given my situation, I can completely understand how it might happen, that a person in need of care might need some extra time or attention. It happens to me too.

The rest of the day so far has gone according to expectation. A beautiful young woman has come into my apartment to get me out of bed. She has helped me into the bathroom, helped me get undressed, helped me with my shower. She stepped into the shower stall to put a towel at my feet, transferring them so that they could dry as well as feel steady on the floor. She dried my legs and asked if I needed help with drying my private areas. I declined; I can still do this part.

Then she took me in my wheelchair and helped my back onto my bed, whereupon she put cream and powder on my toes, and then on the aforementioned private areas. This is all business; she did not comment on the quality of my manhood. Fortunately she didn't laugh at it either. She just did what needed to be done, then moved on.

I can still dress myself, although on occasion I need a bit of help with the final adjustment of my jeans. I just can't seem to get them all the way up, or straight in the front. After I did my mediocre job, my HCA grabbed the front and twisted them into position, then rolled me over and adjusted the back as well.

Dressing complete, she came onto the bed and exercised the hell out of my legs, leaving me completely exhausted in the effort. It comes as some consolation to me that she works as hard as I do in these exercises, sometimes harder. She sweats, I sweat. By the time she is done, so am I. A few minutes later, after a brief rest, she helps me into my wheelchair. My day officially begins. She leaves me. This is an ordinary Monday morning. A different woman will do this on Wednesday and Friday.

It doesn't surprise me in the least that Katherine expresses no jealousy about this process whatsoever. It's all business. These women do a great job of caring for me. Then they move on to the next client. I cannot begin to guess how many men, and women, they have seen in various states of undress. It's all just part of the game, or business. I just wish I wasn't a part of it all.

Sunday, 26 April 2015

It Will Happen

Some time ago I was asked in one of the many online conversations I have had, "What do you think of dying?" The person who posed the question was attempting to start one of those religious conversion conversations, asking me to think about death, dying and the afterlife. His poor choice of wording left me with only one possible response, "Not much." I don't think he really understood the double entendre of my response, as he then went on to tell me I needed to spend more time in thought and contemplation as to what would happen to my soul after I died.

The two meanings of my response were both completely true, and valid. I don't think much of death, and I don't think much about death. Let's face it, we will all die. It is the last great adventure in our life. To live is to die, notwithstanding current and potential scientific advances in extending human existence. I wonder about the practicality of living for 200 years. Based on any sort of financial model, unless you were one of the truly wealthy, perhaps a 1%'er, a life of 200 years would mean a working life of at least 100 or more years If we can extend life with vibrancy, this might work. The problem is, of course, cost and efficacy. Fortunately it is something most of us will never have to worry over.

I will die; we all will die. There is no doubt about it. The problem is not whether or not we will die, but how we live in the interim. When you die is a completely random event, even in things like war or social violence. For most of us, the timing of our death is truly an unknown; this is true even for me. There is no reason for death, simply a cause of death. We don't die because we are bad or evil; we don't live longer because we are good or righteous. We are born, we live, we die; that's how it works. Why think about it beyond that? Instead, think about how to live until it happens.

The only real control I have over my death is that I might choose to end my life early, taking the cocktail of pills which regularly stares at me from my dresser top. I think of this often, almost every night before I go to bed. I wonder if this will be the night, then I tell myself "no" and move on. This is, simply put, because I don't think much of being dead. Being alive, so far, presents a far more interesting experience than that which I have seen of the dead. I will die, either in my own time or in God's time; this is a certainty. Until then, why not focus on living instead of dying?

I believe in God. I do not believe in the afterlife as presented by some mystic farmer thousands of years ago, or some new age faith healer of the modern era. Nobody knows; not you, not I, not the priest or preacher or imam or guru. Those who claim they do are charlatans and liars, ultimately revealing themselves not in their words, but in the fight to stay alive, to live regardless of how wonderful is their afterlife. Perhaps the only ones who truly put their beliefs into action are the suicide bombers; they believe and put their faith into action in the here and now. And look at what most of us think of them.

Death is boring. Dying is inevitable. The only real adventure is living, no matter how hard or painful. One day I will have had enough. You don't know that day. Neither do I. It will happen. That is all.

Saturday, 25 April 2015

It Will Be A Good Night

It's a wine bottling day today. Katherine is here early, puttering around, arranging things, tidying. She has her hand in all kinds of domestic picking up and putting down. It seems to make her happy, to be able to organize and tidy. One of the things I learned a long time ago is that if something makes someone happy, let them do it, unless it hurts you in some way. I don't think it hurts me to have Katherine tidy my apartment; she smiles and tells me so.

It is all rather domestic, though. We are coordinating schedules for the next few days, although mine is tremendously easy to coordinate; I'm not going anywhere anytime soon. With the elevator not working and this replacement wheelchair such a poor choice, I've made the difficult decision to postpone my departure for Vancouver until I get a better handle on the wheelchair situation.

I've already managed to cut into the palm of my hand with one of the exposed clips on this chair, leaving the requisite blood spots all over my bedsheets last night. The back is high, cutting into my shoulders as I sit. The wheels are smaller, meaning a longer reach when I need to wheel anywhere. I've discovered that I have to take both the arms and the feet off the chair in order to transfer to the toilet, and the arm off to transfer onto my bed. It's just not suited to someone in my situation, with my height and limitations.

On the other hand, it's a wine bottling day. Katherine is here early, puttering around, feeling domestic. I really don't have a lot to complain about from this perspective. My friends will be with me this evening. Both Mike and Dion are doing various errands to help me with stuff which needs to be done. People will bring food tonight. Brad will come early to help with cooking. We might even do a chocolate fondue for dessert.

And there is wine, lots of wine. It won't help with the wheelchair, but it's a good distraction. It's not the drinking of the wine which will keep me busy. It's the bottling, although I expect, as has become pattern recently, that people will usher me out of the process fairly quickly. Nonetheless I am sure they all expect my input and participation from a distance. I've never really been known to keep my opinions to myself. Plus the Canucks are playing the Flames here in Calgary. It will be a good evening, and a good night.

Friday, 24 April 2015

Expletives Not Deleted

You can always count on ALS to fuck up your life plans. That's why I rarely make any kind of date certain commitment. You just never know what living with ALS is going to throw at you. Take my wheelchair, for instance. Or rather, please don't take it; the replacement chairs are crap.

The other day, while on our road trip, somehow I managed to break my wheelchair. The truth is that my chair takes a heck of a pounding. Eventually something's gotta give. In this case it was the clips that hold the bracing bars in place on the X-frame underneath the seat. These bars essentially ensure that the chair expands fully when folded out, and hold the wheels vertical when the chair is folded up. They are important but not critical. When they broke, I decided to keep using the chair and get it fixed here at home.

Normally what I would have done is gone to the wheelchair shop and had the part ordered. When it came in, I would go back to the shop and have the repair completed. However, since I have no elevator, I cannot just go to the shop. So the shop sent a couple of guys to me today. They picked up my wheelchair and dropped off a loaner. I've been told that the parts might take as much as a couple of weeks to come in, or they might be sooner. Nobody knows for sure.

Now... this loaner wheelchair is not a top of the line model. In fact, it is the reverse. It is your basic, low end, heavily constructed wheelchair. It has smaller wheels than mine. It has a poorer quality bearing system than mine. It has a smaller seat than mine. The arms on the chair cannot be folded up; they have to be removed. And, worst of all, it's too low for any sort of transfer that I am used to, including the transfer into my bed and the transfer into my truck. All in all, it's a crap chair, the kind the government offered me when I was first diagnosed. There is a reason I bought a good chair; I've been reminded of how good.

This chair means I almost certainly won't be able to get from my wheelchair to my truck, at least not without substantial assistance. The same is true for any transfer to any bed, even one at the correct height; I had to use my sling today to get into my own bed. And this means, for a near certainty, that I will not be solo road-tripping with this loaner wheelchair. I am, once again, trapped in the prison of my life.

So no road trip, no elevator escape, no get away from entrapment. And I get to sit in this piece of shit wheelchair until mine is fixed. Fuck, I hate this life!

Thursday, 23 April 2015

It's In Your Blood

It's in your blood. Or perhaps in your spirit, or in your soul. It is the mountains and the ocean, the waters of a pristine lake, the first glimpse of a small cove sheltered safe from a steeping gale. It is a part of your innards, a piece of your mind, your inner being. Whatever it is, that which is wild will never leave you, and you will never leave that which is wild.

We drove along the road in northern Ontario. I saw a mink, or perhaps something less elegant, dash across the road. I shouted out to Katherine "There's a mink". She didn't see it. I coasted along a lazy highway. I saw a fox beside the road, standing, ready, looking for where to leap, where to run. I said to Katherine, "There's a fox". She didn't see it. I saw a group of antelope, too small to be a herd, standing off, atop a small rise in the distance. I said to Katherine 'Look! Antelope!" She didn't see them.

Last year when I was driving with Mike from Radium to Golden, in the settling hours of the late afternoon, I saw a deer beside the road. I noticed that it was large, perhaps pregnant, moving slowing, edging towards the side of the road. I readied myself as I drove, preparing for that unexpected spring onto the roadway, that leap into destruction. As we passed the deer, I said to Mike, "Look! A deer!" He didn't see it.

The first time I took Katie into the mountains in search of Whitetail Deer, I saw a herd of Mule Deer up on the mountain side. I said to Kate, "Look. Mule Deer!" She didn't see them. Then I pointed out again where they were. She asked me how I saw them, in the midst of all the trees and stumps and rubble. I said, "You have to look for what shouldn't be there."

Nearly 35 years ago, when I was driving my Mom and Ray and Carla to Edmonton, taking my turn at the wheel of Ray's car, I saw a moose as it clambered up onto the road from the ditch. I only saw it because it did not belong there, it was not in the right place. I saw it, swerved, and did not hit that monster of the forest as so many others have done.

I don't know for sure where I learned this. I've just learned, over time, to look, to see, to notice what should not be there, and perhaps what should. I don't know why I can look at the sea and know if there are fish. I don't know why I can look at the sky and know why the weather is this or that. I don't know why I can look at a hillside and see what others cannot see.

Perhaps it's in my blood.

Wednesday, 22 April 2015

It Might Just Be Me

Now that I have been home for a few days, I've been noticing a few things have changed in my apartment; nothing big, just small differences which I, and apparently only I, can see. For example, the patio door seems to be sticky. It's getting harder and harder for me to get it started on the slide. Once it goes, it seems fine, but that initial push is really tough. Of course, it might not be the door at all; it might be just me.

Then there is the 2L carton of milk in the fridge. The box is the same size and shape, but the milk inside seems to have become more dense. That is the only way I can explain the weight increase in the whole thing. Or maybe they have gone to heavier cardboard and wax, maybe that's why that carton of milk is getting harder to lift. Or, it might just be me.

The coffee maker has developed something new as well. It seems to take more water to fill it, or at least the jug of water I use to fill the coffee maker seems to have more water in it. That's the only way I can explain how it has become tougher on me to fill that coffee maker. Or, it might just be me.

The hallway to the laundry room seems to have gotten longer as well. At least, it takes a lot more pushes to get there from my apartment. Before I left, a couple of pushes on the wheels of my chair and I was down the hall. Now it seems to take more than that; not a lot more, just enough so that I notice. Or, it might be me.

Speaking of laundry, who substituted my old laundry hamper for one that holds more laundry. That is the only explanation I can think of for my laundry basket getting heavier and heavier; it's got more laundry in it, or perhaps the clothes have increased in thread count or size or something. Or, it might just be me.

Then there is the fridge door. Someone seems to have replaced the magnets with stronger ones. And why are the drawers on my dresser suddenly more difficult to pull out. Someone must have put stick stuff on them. And why does the bottom shelf on my cupboards seem to be higher, and my coffee cup heavier. There must be an explanation for all this. Or, it might just be me.

Tuesday, 21 April 2015

First Person

I awaken. It's not so much a single event as it is a series of almost wakenings, my eyes slowly sliding open, resistant to the compulsion of my mind, then, after a moment, in defiance of the sunlight streaming in through my bedroom window, they close again. Time passes, how much I do not know for sure, then my eyes repeat this process, each time staying open ever so slightly longer. Then, at some point, in spite of the continual urge to sleep, I am awake, sort of.

I can feel my body slowly coming to life. I have no reason to get up, no purpose in my day, no expectations, no plans. Mike came by earlier this morning to get my truck keys; he is taking it to the dealers for servicing, as I cannot get out of the building to do so. Since I cannot go out, there is no reason to dress, to clothe myself. I look at my body, seeing the loss and failure within it, noting how skinny my ankles have become, how flaccid the muscles are in my lower leg as well as my upper. I stay in bed, no reason to move.

After a while, there becomes a reason to move. I feel the pressure in my lower anatomy; I need the toilet, not in a hurry but eventually. I have learned how to pee without getting out of bed, a valuable skill for someone as lazy as I am. It's very useful except for those moments when my body decides to do something odd, or when my hands fail to hold my jug, or when I am just plain sloppy. I can do it, so I do it. The pressure remains; I know I will have to get up eventually, if for nothing then for this.

I roll over off of my back and onto my right side, feeling the pain of motion and the energy required even for this simple task. I look out my bedroom window, the culprit exploding all of this brightness into my room. I can see the crosswalk from the mall. There is a man there, a man of indeterminate age, somewhere between mid-forties to mid-sixties. He is healthy, standing tall. He pushes the button for the walk light, receives the signal and strides forth. I think to myself how that would be me but for this condition in which I find myself.

I flop back onto my back again, then sit up. Once again I notice my ankles, then my feet. While I lay down, my feet are almost normal looking. I move them to where they might be if I could stand on them. My skin is a mottled white with patches of freckles and a yellow tone from the residual iron left behind when the blood pools in my feet. I put one foot on the floor and notice immediately the turn from white to blotchy purple and deep crimson. My blood pools quickly.

Finally I have to get up. Bodily functions almost always win the argument. I have no other reason for today. This is it. I get up. I use the toilet, cleaning myself in the process. I wash and brush my teeth. I return to my bed. I get dressed, the effort so tiring that I feel the need to rest. I rest for another 10 minutes, closing my eyes and listening to my heavy breath as my body seeks to recover from this massive work effort. I get up again, into my chair. My day has finally begun.

Monday, 20 April 2015

At Home Again, Again

I am at home, sitting at my table, in my dining room, with my coffee from my kitchen, the one I just made for myself. It's a safe kind of feeling, surrounded by all the things that make my life work. Last night, when I arrived home, Mike and Dion were here to help Katherine and me get upstairs, along with help from Calgary Emergency Services. The EMS Tech's were not thrilled, but they made it up the three floors with some help from the guys.

That's the other great thing about being home; friends and family. Last night, along with Mike, Dion and Katherine, Anisa and Dan came over; we watched the hockey game, the only one that matters to Canucks and Flames fans. We had some beers and snacks. We talked. We planned. It now seems I am having a wine bottling party next Saturday evening. It's one of the best things about being home; life happens, continuously.

The elevator thing is my biggest problem these days, along, of course, with the usual ALS problems. That elevator thing is keeping me trapped in my apartment. Kate did my shopping on Saturday. Mike is taking my truck in for servicing tomorrow. Katherine is coming over this afternoon, I hope, and will help me with medications from Safeway. Later this week I will have to ask Brad or someone to help get wine bottling supplies. All of this because I cannot get down the three floors to my truck, at least not without help down and back up.

My current plan is to stay stuck at home for a week or so, time enough for my sore shoulder to heal as much as it can, time enough for me to get a bit of cabin fever. I find, historically, that more than two days in is enough to make me pretty frustrated and itchy to get out. A week will be plenty, I suspect. I am already planning the next road trip; I plan on driving to Bella Coola, taking the ferry to Vancouver Island, then heading down to visit family in Victoria and Vancouver. It will take a couple of weeks, by which time I am truly hoping the elevator will be fixed.

Mostly, right now, I am enjoying not having to get dressed, not having to get in the truck, not having to pack and load and carry and lift. I am enjoying the lazy kind of day which I have come to treasure, given the results of ALS. It's the kind of day where I have nothing to do, nothing at all. Of course that's not true at all; there's my blog, then the pictures to update, unpacking to do, tidying up needed, cooking, cleaning, all the stuff of daily life. It's just that I get to do it at home this time.

Sunday, 19 April 2015

I Don't Want To Die, I Have To Die

Louie died yesterday from complications associated with ALS, another loss amongst the losses. another wife who says good bye to a loving husband, another father, son, brother, sister, friend. It is not that we die; it is that we die too early and live with such difficulty.

Napoleon was wrong; taxes can be escaped. Just ask the very rich, they do it all the time. Or ask the very poor, they do it too. Death, on the other hand, cannot be escaped. It is the great equalizer, the thing which must come to all of us. As of this date, the only immortals are those who live in fantasy. The rest of us live our lives, coming to our end one day.

This is the way of life, an essential part of our journey. We must die so that others may live. Life itself would not be possible without death. Our bodies go on to become other parts of our world; our atoms are the only things that live on, living on in other beings, in other life. Death is the thing which changes our world, which changes one form of life into another. To live, we must die.

So it is not Louie's death which bothers me the most although it truly saddens me. I know it was a part of his calling in life, to die one day, just as we all will. It is not even the nature of his death. In the end he chose to live with dignity and die with grace, without machines or mechanical support. He knew he was ready to complete his life's journey, to do that which each and every living thing must do. He knew he was ready to die.

What is most difficult for me is the loss of active life, the shortened span allotted to him. His, and my, tragedy is that our lives are not our allotted four score. They are lessened through ALS. The sorrow is not that he died, although it is sorrowful for his friends and family. The sorrow is that he did not get the chance to see all which he had hoped to see, to experience the fullness of life, to walk in the sunshine that one last time.

That's the tragedy of ALS. We die a little each day, losing our ability to walk, reach, talk, laugh, even smile, and eventually our ability to breathe. Something is taken from us slowly each moment, some very slowly, some very quickly. For Louie it was 18 months from diagnosis to death. His journey was shorter than some and longer than others. No matter how long or short, he was taken too early, too cruelly, too painfully. That is the tragedy of ALS.

Saturday, 18 April 2015

Friction, Or Surface Tension. Whatever.

I know I should write something elegant, something reflecting the long, sweeping drive yesterday as we wound our way out of the rocky ramparts of the ancient and great Canadian Shield which covers all of northwestern Ontario. I know I should describe cracking the forest edge of the wide Canadian prairies, finding as land as vast as the sky above. Certainly I should write of the joy in meeting friends for dinner, in sharing wonderful company. Instead, alas, I am going to write about sitting on the toilet.

While the journey on the road was lovely yesterday, passing a thousand lakes and rivers, singing along with the radio and laughing at each other's jokes, my blog is about my journey with ALS too. Today, and lately, I am coming to grips with another challenge brought forward by this disease; friction, or surface tension. I'm not sure what to call it; it's that tendency for skin to stick to the toilet seat, the infernal grip which that porcelain throne takes on your butt cheeks.

For most of you, this is a nothing event. You stand up. The seal is broken. For me it is becoming increasingly difficult to push myself off from that glue like seat. I can do it; it's just getting more and more difficult. You might wonder why this is a challenge. Think of the process for me when I go to use the toilet.

First of all, I sit on the toilet to pull my pants and underwear off. No big deal, except that my body weight makes this increasingly difficult. I'm getting fatter and weaker at the same time. Nonetheless, I get there. Now I am skin to seat, ready for action, which almost always takes place. Then comes the fun part, cleaning and dressing. I can still wipe my own ass, although it is becoming more of a challenge as time goes by. It's the dressing part, and the transfer to my wheelchair which is annoying these days.

When I go to pull up my underwear, I have to lift myself off the toilet seat enough to slide cloth past cheek. Unfortunately my skin sticks to the seat. Because my butt and legs are so saggy, thanks to lack of muscle tone, my skin continues to maintain contact in spite of my somewhat limited lift. So I resort to sideways rock and roll, using the angle of my body to lift one side high enough, then moving to the other, assuming the toilet position allows this amount of wriggling and wiggling.

Sometimes I just can't do it. Once or twice I have had to ask Katherine for help, lifting me just enough for the required enclothing. Other times I just say to hell with it, transfer to the chair half done, transfer to the bed, finishing the process there. Except that my weak lift means it is often more of a slide into and off of my wheelchair, often pulling the cushion cover out of shape, sometimes tearing the seams on the cover.

It's an awful lot of work just to put on underwear. I can see why so many PALS go commando.

Friday, 17 April 2015

Lake Superior

I've taken to starting my days with a couple of Extra Strength Tylenol's; the pain in my shoulder is now persistent through the night. Although it is not enough to wake me up from sleep, it is enough to make it problematic getting there. Last night I took a Tylenol 3 with Codeine to get me past the pain and into slumber. I am convinced it is something to do with the long days behind the wheel, or at least long for me these days; they are nothing like what I could do before my arms started failing me and the exhaustion took hold. Even a couple of years ago, with ALS having taken my legs already, a 10 hour driving day was not an issue. Now it is.

Still, I love the drive. Yesterday was a good example. We made our way from Wawa to Thunder Bay, following the edge of Lake Superior most of the time, at times the road taking us inland to where the terrain was at least moderately more amenable to road building. It's hard rock country up here, some of the oldest rock on the planet, between 2.5 and 4 billion years old. The rocks of the Canadian Shield are "Archean" period, a time of land formation which was second only the the "Hadian" period, so called because of the hellish conditions on the planet at that time, the surface all molten, spewing poisonous gases and lava. The Archean period saw the first continental formations, and the Canadian Shield was born. It's still here.

Lake Superior is more "modern" in that respect, a result of the last ice age, as are all the Great Lakes. Gitchegumee, as the natives call it, is the greatest of all the lakes. It is the largest lake, by surface area, of all the lakes on earth, and second only to Lake Baikal of Russia for volume. Superior is large enough to hold all the water from the rest of the Great Lakes, and even more. It contains fully 10% of all of the world's fresh water, and if it ever let go, it could flood the whole of North America, assuming it was flat, with water to a depth of one foot.

The best way to gain a sense of Lake Superior is to drive around it, an effort which can take days. We took the fast run, from Sault St. Marie at the bottom end, to Thunder Bay at the lake head. This trip is by no means half way round the lake. Our distance was some 750 KM over two days. The full circumnavigation by road would take over 1,600 KM, a thousand miles and more, using the fastest path, mostly likely over 24 hours including fuel stops. The longer drive, along the whole shore, were there a road, would be about 1,300 miles.

When you drive beside the lake, you see the curvature of the horizon in the far of distance, not the opposite shore. There is no "other side" of this lake; it's about 160 miles wide, about 250 km. The sun sets 35 minutes later on the west side than it does on the east side. And right now, in early spring, it's still frozen. It is an amazing piece of nature, a wonder of the natural world, and we get to see it, to live on and near it, to drive beside it. It might be worth a sore shoulder or two, just to get to do this.

Thursday, 16 April 2015

Timmies To The Rescue

We are in a small motel, just outside a small town called Wawa in Ontario. Most Canadians know about this town; it's the only real stop between the lakehead and the soo on the Transcanada Highway. The motel is one of those classic summer joints, low roofed, quaint, nice sized rooms with a big bed and a tiny bathroom. It's got a small eating area with a little round table and a couple of chairs. It really looks like something out of a movie set.

The room itself is good, meticulously clean and tidy, with all the expected motel appointments. There is no restaurant or bar nearby, so last night was the perfect night for pizza and beer, the only problem being that Ontario is the only province in the country where you can't buy beer when you want it; the liquor laws here continue to be archaic. So it was rum and coke instead of beer.

The motel itself is set high upon a hill beside the highway, the only highway, overlooking Lake Superior. It is a rural setting; one expects to see a moose in the parking lot in the morning. The view over the lake is limited thanks to the trees yet the sunset is more than beautiful, making up for the missing sight of Gitchegumee. It'ss till winter here, mostly, with chill mornings and a thick sheet of ice on almost every body of water, including the mighty Great Lakes of northern Ontario.

Perhaps the only fly in this ointment is the tiny little bathroom in the motel room. This place was not advertised as wheelchair accessible. In fact, nothing in Wawa is wheelchair accessible. This place, in spite of being the only place on the road, is decidedly rough and ready. The road came through in 1960; before that this was a hunting and fishing outpost, accessible by bush plane and railroad. It would appear that 55 years is not yet enough to bring Wawa into the modern era.

The 5 X 7 foot bathroom itself is actually quite pretty; clean, cute curtains, a lovely sink stand. The tub is deep and there is plenty of hot water. Of course I could enjoy neither, nor can I manage the toilet without substantial assistance. I managed to use the facilities last night; this morning I have decided to wait for a better opportunity. I don't blame the motel for this; they are what they are. Were I not in a wheelchair, I would call this a lovely little stop.

Perhaps this is why so many people do the lakehead to the soo in one day. It can happen; they are only about 8 or 9 hours apart on the Trans-Canada. It is remote here, a land that time has not forgotten, but certainly left behind a ways. Still, Wawa is, in an odd way, one of the more interesting stops on the road, an old time Canadian northern town with a Tim Horton's. And that is where I can find a wheelchair bathroom!

Wednesday, 15 April 2015


I admit it; I don't like mining towns. They are, by and large, ugly places, dirty and dusty, populated with square, squat buildings of brick and stone, as if the only architectural style was blocks, the newer buildings built of steel frame and tin siding, still following the block style of everything else in town. It's not until you get out of the centre of town, to the "moderrn" sections, where the new hotels and malls have sprung up, that you get to see something resembling style and grace in a building. Or at least something not resembling the brick and stone structures built for utility and durability in a harsh environment.

Let's face it, mining is dirty and harsh, especially the hard rock mining that is the core of so many northern Canadian towns, places like Timmins, Kirkland Lake, Labrador City, Tumbler Ridge and so many more, including Sudbury. These places make their living by tearing apart the earth, melting it into something which can be shipped out, or shipped out as ore from the ever present railyard which inevitably forms the central locus of town. They leave behind scarred land and piles of slag, the one here in Sudbury still growing and glowing as I type. Once the wealth of the mine is gone, so is the town.

Sudbury sits right in the middle of the Canadian Shield's nickel and iron ore belt. It celebrates this fortunate placement with a The Big Nickle as it's local symbol. It was built on one of the biggest nickel finds in the world. It will continue as a mine for as long as there is a demand for this important industrial and financial metal. Sudbury will be in business, the mining business, for a while yet.

This does not mean the town is without merit. While I am not a fan of mining towns, I recognize the essential nature of mining for our modern, technological society. We could not function without the mines and miners, without their output. I just don't like the persistent ugliness of these towns, their main streets perpetually filled with dust and dirt, their outer edges hewn into the rock of the surrounding mountains. The people here work hard, pay their taxes, produce wealth which fuels our economy. They are good people, doing their best in a harsh land. The people of Sudbury deserve our thanks; they have merit.

It's just the town which is ugly.

Tuesday, 14 April 2015

I Just Don't Know

I have this layer of sadness about me, like the thick bitumen slick which recently covered English Bay in Vancouver. It's heavy, sitting darkly upon the waters of my emotions, already muddied by normal ebb and flow of feelings within me. Every good feeling, every bit of joy and happiness, must first fight through the thick slick of sadness on top before it can emerge into the light of day to lift me. This layer of sadness never goes away; at best sometimes it gets thinner, easier to puncture. Most times it's a fight to get through it.

As we get nearer and nearer to Calgary, I have truly mixed emotions about this voyage which is potentially coming to an end. I say potentially because the elevator in my building is still under repair. We are only half way through the three month estimate. I am checking with a couple of sources to get a better sense of when it might be done, so far with limited success. I've already been reminded that I was told three months, and nothing has happened to change that.

The mixed emotions, thus, revolve around heading home to a layer of uncertainty. Right now my contingency plan is to simply continue westward to Vancouver, there to visit my Mom and Ray, along with my kids and grandchildren. After all, I have presents for them. Another option is to take up temporary residence in Calgary; I have a couple of options there. Even with that, temporary residence will not have the needed tools for my wheelchair life, and if I am going to be uncomfortable, I might as well do that in Vancouver with my grandchildren nearby.

Take this uncertainty, add the constancy of melancholy with which I live, throw in a bit of pain, a bunch of mobility struggles, and a few drops of physical struggle, and the layer of bitumen atop my emotional self can get pretty heavy. I have asked God to take this load from me, yet each morning I seem to awaken with it still upon my shoulders. It is that which I must carry.

Carry it I shall. I really have no other choice. I will find a way to have something good come of it, as best I can. I will pierce the layer of sadness, that bitter bitumen atop the troubled waters of my spirit. I will just keep going. Then, on Sunday, I will get to Calgary. After that, I just don't know.

Monday, 13 April 2015

Busy Days

Yesterday was a late start; today is an early start. After yesterday's difficulties, I asked Katherine to help me wake up earlier today, perhaps as early as 8:00 AM instead of my regular 10:00 AM. She was up by 7:30 AM, dutifully calling upon me to get up at 8:00 AM, whereupon I promptly refused to rise. With some coaxing, along with a nice cup of coffee, she managed to encourage me to dress by 8:45 AM, the previous 45 minutes being spent by me trying to convince my body to rise from its near deathlike sleep. I am up.

The advantage of this earlier rising is that I get to write without pressure to depart by 11:00 AM. It means there is less stress in the final moments of our hotel time, more time to pack, to leave with some pretense of leisure, both for me and for Katherine. It also means I might make it to Tim Horton's while they are still serving breakfast; I can have a breakfast bun, something I don't get very often thanks to my late arising.

Today will see us do another of our unplanned detours. Our original plan had been to visit Ottawa, perhaps staying an extra night here. As it happens, my brother Peter is in Toronto. I suggested to Katherine that we might detour there on our way west, to which she replied that we could also see her brother and sister, who just happen to live in Mississauga, very near to the hotel where Peter is staying. So that was it; we are headed to "the big smoke" today, even though the GTA did not appear anywhere on our plans right up until last night.

It is one of the freedoms of this kind of road trip. We get up late; we change directions; we go places unplanned. On the other hand, we are still very busy most days. With a departure at 11:00 AM from the hotel, we are usually on the highway at about 11:15 AM. I get tired after a couple of hours driving, so we usually stop at around 1:00 PM so I can have a nap. After resting, we usually have something to eat, either in-the-truck food such as proscuitto and swiss cheese, or perhaps a burger from a fast food joint. After that, we typically drive until around 5:30 PM or so.

Once our driving day is complete, we find ourselves a hotel or motel. The need for a wheelchair room means this often takes several tries. We use whatever online tools we can, along with the old routine of stopping at a likely place to ask if they have room in the inn. By the time we are in a hotel or motel, unpacked and ready for dinner, it's often well past 7:00 PM. It is the unpacking which takes all the time, what with not only luggage, but my M-rail, my shower seat, our computers, etc., etc., etc.

After we unpack, making the room ready for sleep, we will go to eat. This takes another hour or so, putting us back in our room usually around 8:30 or 9:00 PM. Then we post the photo blog, a process which can take upwards of an hour sometimes. With all that done, we have our showers, another process which can take upwards of an hour, depending on what the facilities are like and what difficulties I present. Sometimes the whole shower thing is late enough and difficult enough that I just leave it.

All of this evening activity means getting to bed by 11:00 PM is an unlikely event. We try, but on most occasions we see the midnight hour before sleep finally comes to us. As I said, it's a very busy day.

Sunday, 12 April 2015

I'm Still Learning

It's a late entry today. I'm sitting here in my hotel in Ottawa, enjoying a glass of wine while Katherine bustles about, arranging our luggage, putting rails and chairs and bathroom supplies in place. It is a result of a late start, a slow start on my part. This morning I could barely shake off the shades of sleep, barely move when 10:00 AM came round. My morning routine was slow, dressing was slow, and at the end Katherine said "We have to leave. You can write later."

Those of you who know me well will probably guess how I responded to this, at least internally. Externally I put up a mild resistance, knowing full well that we had to check out by 11:00 AM. that we needed gas in the truck, that Katherine had the gear ready to go. Nonetheless, I wanted to write, regardless of all that. Katherine insisted; I relented. It created a moment of tension between us, one of the few we have experienced on our voyages.

It's important to understand our routine, the routine which has developed as we have traveled day after day, unpacking each night, packing each morning. Our typical day starts with Katherine waking well before me. This is not a requirement; she just gets up earlier than I do. She is easily up by 9:30 AM, sometimes earlier; it's still a vacation after all. When she gets up she engages in her morning bathroom routine, then dresses. After that she sets out clothes for me, readying my gear for the coming day.

When I finally wake my sorry ass, sloughing off the shards of sleep upon which I yet remain impaled, she reminds me to take my medications. I do so. Then I head off to the bathroom for my morning routine. Before starting that which we must all do, I empty my jug, squirt in the cleaner, and fill it with water, leaving it in the sink where it sits and awaits me as I attend to myself. Once done that which I must do, I return to the sink, re-emptying my jug as the first step. With the sink now clear, I wash myself and brush my teeth. All the while, Katherine waits.

After my morning needs, I get dressed. I can still do this on my own; it is with some gratitude I make that remark. After dressing, a process which can take quite some time, I finally am ready to put pen to paper, digitally speaking. This whole process can take upwards of an hour or so. All the while, Katherine waits.

This morning the process took until 10:45 AM. "Too long", she said. "Time to go", she said. I told her I felt like she was ordering me around; she was dutifully upset by my comment. Then I said something which completely surprised me. I assured her that how I felt about her was very different than how I felt at that moment.

This is perhaps the first time in my life in which that distinction has been so clear. In all of my married life, I felt as if any condemnation from my wife was complete condemnation. I was not harried for an action; I was harried for being who I was. At least that's how I felt. It is such a relief to know that I can love someone yet still feel an action on their part is not something I like. It is such a relief to know that action and self are not condemned together. It further surprises me that it took so long for me to see this in others, as well as myself. It looks like I am still learning.

Saturday, 11 April 2015

Slowly, In New York

I'm doing almost everything a bit more slowly these days. It's taking me longer to get dressed. I approach transfers more tentatively. Hallway carpet slows me and my wheelchair to almost a crawl. City sidewalks with any sort of slope take forever as do city streets. I can still get a burst of push when I need it; it's the sustained effort that is becoming increasingly difficult.

Yesterday was one of those "city streets" days. We took the subway down to Fulton Street, walking from there to Battery Park. Well, Katherine walked, and pushed. I sat and rolled. Some of the time I managed on my own; much of the time she managed for me. She, and the ferry staff, rolled me up and down the various ramps to put me on the ferry to Liberty Island, where we spent an hour walking/rolling, around, looking at the Statue and the misty views of the New York skyline.

After returning to Battery Park we walked/rolled back to the Fulton Street station where we caught the train to Canal Street, once again to discover that there was no elevator in the train station. Once again a couple of sturdy New Yorkers hauled my wheelchair bound ass up not one, but three flights of stairs. Once again, other strangers jumped in to help. Once again I own my liberty to the help of others. The Canal Street station we ended up at was the wrong one. The next Canal Street station, the one on a different train line, has elevators.

Being at the wrong station also meant Katherine had to push me from Tribeca to Chinatown, not a great distance but somehow uphill all the way. We were both exhausted and hungry by the time we got to a restaurant which looked reasonably authentic. Sure enough, there were stairs; the staff helped this time. Sure enough, the hallway to the washroom was too narrow; I simply sat in the hallway, peeing in my jug, while the staff made sure nobody came for a look. Then, after dinner when we got the check, the manager told us "Cash only.".

We had already spent our cash on souvenirs and snacks while on Liberty Island! So we negotiated. In the end, we left him with my driver's license with the intent to get cash later and return today with said payment. Then, as we were leaving, we passed an ATM, grabbing cash for both our dinner payment and a cab back to Times Square. We tried the elevator at Lafayette Street but could only find the one to the downtown train; we needed the uptown train.

Traffic defeated us about four blocks from our hotel. We got out of the cab. Once again, Katherine pushed me through the tangled crowds of people who seem completely unable to see a wheelchair. I yelled; she pushed. We hit a few people, or rather, a few people hit us, one walking completely into my lap, oblivious to what was in front of him.

When we finally got back to our hotel, Katherine stepped out of the elevator, heading for our room. She looked back at me as I was rolling along, slowly. She stepped towards me to help and I said "I can do this. You go ahead." I did it, slowly.

Friday, 10 April 2015

For Good To Flourish

Yesterday we went to the World Trade Center Memorial. It was difficult for me, having worked in the Twin Towers with clients who were still there when the buildings came down. I remember walking out of the Fulton Street subway station, past the church and onto the WTC Plaza for the first time. I remember having dinner atop Tower 1 with my wife, a business associate, and his wife. I remember my Mother calling me on that fateful morning, telling me to turn on the TV. I had worked late the night before so I was sleeping in.

We took the subway to the WTC, taking the time to ask the fellow in the Information booth what might be the best station to disembark the subway train. He said "Chambers Street". We dutifully got off the train at the Chambers Street station, only to discover that there was no elevator. So we got on the train and went one more stop to the new Fulton Street station.

So much has changed down here, with the loss of the towers and other buildings from the attacks of 9/11. New buildings have gone up. Existing buildings have been renovated and updated. The Fulton Station is no exception, now reminding me more of the London Tube Station at Westminster than the New York subway of old. It took quite a bit of searching before we finally figured out the convoluted route to the surface. Nonetheless, we made it.

After visiting the memorial, we got back onto the train, this time for Grand Central Station. The ride was uneventful, the train crowded with oddly polite New Yorkers. However we arrived at the Grand Central platform just as the Out Of Service sign went on the elevator. We were two for two. I sat there for few minutes when a nice young man offered to help haul me up the stairs. It was no small task; he started well however my weight showed up quickly. Then, without a word, a couple of women jumped in to help, all the them, along with Katherine, carrying me and my wheelchair up the stairs to the exit platform.

I've experienced this kindness all over the place. New York is no exception; there are good people everywhere. They just need a chance to show it. This is also, perhaps, the lesson of the Twin Towers. There are evil people out there. All that is needed for evil to flourish is for good people to do nothing. There are so many who will do something; just give them a chance. I am a fortunate man.

Thursday, 9 April 2015

The City That Never Sleeps

My left shoulder is killing me. It hurts so much that I can barely lift my arm. It seems to get worse as I sleep, stiffening up overnight, cramping up for the morning light. The pain is not just in my shoulder, it's in my bicep as well, working its way down into my hands. I have a slighter pain on the right side, only in my bicep. It is, once again, the left side that causes me problems.

Here I am in New York City, complaining about pain. This is one of the most vibrant cities in the world, with every kind of entertainment and culture you could ask for. Every museum possible is here, every art gallery you can imagine, every kind of food and drink known to the planet. Yet here I am, slow to rise, struggling with pain, complaining.

I already know what I am going to do about this. Nothing. The pain will go away as I become more active. I won't work hard today, no driving; we are staying put for a few days so I can rest and so Katherine can see the 9/11 Memorial. I would like to see it to; perhaps enough time has passed that I can go there without the fear and anguish of loss rising within. me. I can still remember my Mom calling me to awaken me that morning, tell me to turn on the TV. I couldn't watch it then; I couldn't watch it for many years. I still have trouble watching those planes hit, those buildings fall, those people die.

My pain is slight compared with so many, those who have lived through that kind of loss. My complaint is small when seen in the light of the great tragedies of humankind. The only real difference is that this pain is mine; I'm the one who feels it. The significance of my loss is that it is mine; I am the one who bears it. Beyond that, I am minor when compared to the loss on September 11, 2001.

So in a few moments I will put on my shoes, my sweater, and my happy face. We will dive into the mass of humanity that is NYC, take the subway, get out at the new World Trade Center stop, go up into the light and see. Then we'll head to Chinatown for dinner. It will be a good afternoon and evening. Thank goodness New York is the city that never sleeps. I have a narrow waking time and want to make the most of it.

Wednesday, 8 April 2015

Some Thoughts On Knowledge

I have a lot on my mind these days, not all of it related to ALS. I find myself thinking a lot as I drive, thinking about things like the difference between data and knowledge, the difference between content and happy, what it must have been like to be an early settler here in rural West Virginia, how brother came to battle brother in the Civil War. I have to be careful; too much thinking and I might become philosophical. It's a knife's edge.

Today, for example, I was thinking about the amount of effort it takes me to get dressed. By the time I have battled myself into boxers, compression socks, a shirt and pants, I feel like I have done five rounds with Mike Tyson, or run a marathon. I am in a full sweat, so beat by the effort that I need to lay back on the bed to rest, sometimes for quite a while. I was thinking this kind of effort might explain why, after about an hour or so of driving, I need a nap. I use a lot of energy just to put on clothes. That's why I don't bother some days, at home at least.

As my body fails more and more, as I become less and less able to "do" things, I tend to think about them more, contemplate the need for all the things I do. We are a busy species. Those of us who are healthy are constantly busy; even those who are not healthy find themselves busy much of the time. We are an animal cursed with the need to constantly do something; sloth is a learned activity for most people. We learn it from modern technology, that which does our work for us. We learn it from modern entertainment and distraction, things like TV and the Internet.

I think about the Internet often, how it has changed the landscape of our modern society. For so many careers and trades of the past and present, special knowledge was the key to success. Societies, organizations, and unions all held those secrets closely, so as to protect their success. Then the internet came along, exposing the most secret of data to all of us, or at least most of us, making much of what was once hidden visible.

The problem is, of course, that data is not knowledge. Simply because why know the "how" of something in no way implies that we know the when, what, or why of it. Just because I know what a plumber does, doesn't mean I can do it. Never mind a plumber, what about a surgeon? I know a lot of stuff but that doesn't mean I am educated or learned. There is a lot more to expertise that simply knowing the data. That's just the start.

Tuesday, 7 April 2015

Moving North

The weather is changing. It's moving from the warmth of Florida sunshine to the rain and clouds of springtime, shifting away from eternal summer to recognizable variability as we head north on our journey. Today is the last day of short sleeves; tomorrow we will bring out our long sleeved shirts and our jackets. The chill of winter will soon be upon us; we are headed home. My only hope is that spring will have arrived in Canada by the time we get there. It's a thin hope.

Yesterday we moved once again through rural Georgia, headed north past houses, farms and fields set in rural, even near wilderness settings. Farms, carved out of the Georgia forests three centuries ago, houses older than the Civil War, fields once used for cotton and now used for corn, folks living in farm houses who have never touch a plough; it is a soft country of slow rolling hills.

We got to Augusta, Georgia at about the same time as Masters golf fever. We pulled onto Washington Boulevard, a few blocks from Augusta National Golf Course, to the sight of thousands of people battling for parking, buying and selling tickets, fighting for hotel rooms, generally clogging every sidewalk, parking lot, and pathway. Beautiful open fields with stately oaks have been converted to parking lots for the week. Signs everywhere declare private property just in case you want to park or drive there.

The "real" tournament starts on Thursday. With rooms going for a minimum of $250 a night, even at the local Motel 6, we decided not to stay. Instead we wanted to take a look at the setting, and perhaps snap a few pictures of the venue. Our strategy was simple; I would drop Katherine off at the gate to take some pictures, then drive off to a nearby mall and wait in the truck while she took the shots and then returned to me. Unfortunately a large lady security guard told her no pictures were allowed, even from across the street, and then proceeded to stand immediately in front of her to block her view. We had to make do with pictures of the crowds.

Having had our fill of Masters madness, we headed north again, through South Carolina, into North Carolina. As we drove, those slow rolling, small hills became larger, with steeper slopes. We are moving towards the Applachian mountain chain, this row of ancient rocks which could be considered  the "eastern Rockies", only about a billion years older, a lot more worn down. This chain of mountains starts in Newfoundland, making its way down the eastern part of the continent, separating the Atlantic states from the watershed of the Mississippi.

Our plan is to drive up into a part of Appalachia known as the Great Smoky Mountains, a part of the Blue Ridge chain of mountains that form the greater part of Applachia. We'll head into the mountains, make a sharp right once we are in West Virginia, then head out again, back to the Piedmont Range and ultimately to the coastal plain once again. We are headed north, slowly, scenically.

Monday, 6 April 2015

Rural Georgia

One of the things you discover when visiting friends in rural Georgia is that the pace of life changes, almost of its own accord. History has a way of doing that to a place, particularly one so gently paced as Sandersville, GA. This morning arrived to find me sitting comfortably at the kitchen table in a friends home. The house was built in 1820, survived the ravages of Sherman's March To The Sea in 1864, has seen remodel and addition followed by remodel and addition, and yet still offers the sense of time that only these kinds of homes can show. There are claims of ghosts, those of civil war soldiers who died in or near the home. I failed to have the pleasure.

I sat there, sipping my coffee, chatting with my friend. Katherine, as she always does in the morning, had already loaded the truck. I found myself looking at my phone for the time, dismissing the reality of 11:00 AM, delaying and finally accepting the road's call at 11:30 AM, all of this without touching the keyboard to write. Yet even as I got in the truck, I was in no hurry, loathe to rush away from southern hospitality.

Driving from Florida to rural Georgia yesterday was a gentle and kind a process as you describe, in spite of spending the first couple of hours on I-95 from Jacksonville, FL. After a wandering detour north of Savannah, we drove into this lovely, old city with the unique distinction of being one of the first planned communities in North America, the town itself predating American independence by a mere 50 years. It's low hung cover of elm and oak, dripping with Spanish Moss that looked for all the world like an old woman's shawl hanging from stooped shoulders; it's narrow streets with each neighbourhood clustered around its own small square; it's old brick buildings rebuilt so carefully after the ravages of the War Between The States; all of this, plus the riverfront built up over the years to ship cotton from the south when cotton was still king, make the town truly genteel.

We left Savannah, and the interstate highway system, behind us as we headed to the interior of the state, driving on local highways and local roads, through clusters of small towns and villages each with its own central square and ancient courthouse, watching the red dust of side roads rise into the air to warn us of oncoming traffic, I developed a real sense of the way this part of the country was built, with farms hacked out of mixed forests, woodlots preserved for use and use again, small farm houses and beautiful plantation homes all within hailing distance of one another.

The slow rolling hills of Georgia reflect the feeling of the countryside, that time is long and there is much about history worth saving. These folks really do feel that "the south shall rise again", and have the patience to wait.

Sunday, 5 April 2015

Off To Savannah

Staying connected while on the road is not always an easy thing. Hotels are in the room business, not the internet business, so mostly the farm this service out to others, people who supposedly know what they are doing. Yet here I am in Jacksonville, Florida, in a Quality Inn near the airport, where I can do my blog yet not reach my email server, where I can check Google Maps yet have an inconsistent connection to my blog. Ah, life on the road.

Yesterday was an interesting road day. We left Vero Beach after an extra day of R&R for me, heading towards the ocean once again. We had slipped out to the I-95 the day before but were now headed back to the US-1 and Florida A1A, both of which follow the coast. The US 1 is typically on the mainland side while the A1A tends to follow the shoreline on the outer islands which line this coast almost all the way from Miami to the Georgia border. Even those states to the north of here have outer islands. It is a feature of this Atlantic coast, the low slung sand bars which have become grassy and bushy habitats for birds and all kinds of other small creatures, plus us humans too.

Once we hit the coast, we turned northward, up to Cape Canaveral, the home of the Kennedy Space Center. I seem to recall, as a youth, that they tried to rename the cape to Cape Kennedy, but in 1973 it seems to have reverted back to its original name. We went to visit the Space Center, happily paying the $10 fee to park in a lot out in the middle of nowhere; there is nothing out here besides the Space Center. We got out of the truck, walked to the main gate area, only to discover that the admission fee is $50 per person. We had only planned for an hour or so at the Center; this was just too much. Instead we took some cool pictures from outside the gate.

Having done our obeisance to the political spirit behind the American race to the moon, we headed up coast once again, this time towards Daytona Beach, the world's most famous beach, as the sign at the end of the road declares. Our time there was short, just enough to discover that this is a very busy beach, too busy for the likes of us. We turned northward once again.

At this point I made the decision to visit St. Augustine, a quaint little town on the Florida coast set at the site of the first Spanish settlement in Florida, the launching grounds of Ponce De Leon's ill fated exposition to find the famous Fountain of Youth. This town reflects much of the old Spanish architecture of its time, with narrow streets, houses with patios and inner gardens, and stone buildings that seem to harken back to a time long past, despite their apparent newness. It's a lovely place; I would go back there for a full day if I had the chance and the time.

When we headed from St. Augustine towards Savannah, exhaustion set in. I was done. I managed to make it to the Jacksonville Airport exit before pulling off the I-95, ready to sleep. We found a motel and I collapsed onto the bed, not to rise until this morning. I awoke early, not refreshed but at least alert, ready to face another day. Now it's off to Savananah!

Saturday, 4 April 2015

At Least For Today

I may be in an absolutely beautiful place, with a terrific woman caring for me, with a bed that is easy and plenty of time to rest, yet I am tired and simply cannot shake this edge of permanent depression which follows me everywhere these days. I slept all day yesterday, then got up for all of four hours, then slept through the night, a good sleep. Yet here I am exhausted, not ready to face another day.

It is a testament to the human spirit that PALS don't just give up all over the place. The vicissitudes of fortune and fate drive us so, making our lives immensely challenging, a constant battle with the physical and emotional damage of illness. We die at a prodigious rate, both the young and the old amongst us. We live lives bounded by physical limitation and psychic barriers. Yet even so, we live lives as best we can.

I was looking at my legs this morning, never a good idea for someone who has lost all muscle tone from the waist down. The muscles are slowly wasting to nothingness, disappearing as a part of this disease.  My knees look oversized as the muscles pull back from them, sagging in a bag of skin to the rear of my legs. My lower leg bones are obvious, visible, no muscle protecting them whatsoever. Were it not for the massive gut where most of my fat has migrated, you might look at my lower legs and conclude I was quite skinny.

My thighs are just round bags of squishy meat, the only form for them provided by the pressure of my wheelchair or my bed. They have nothing to offer, not even protection. I am flabby, in the worst possible way. It's happening in my arms now, with a consistent cottage cheese effect on the skin where muscles have atrophied below. It's like cellulite without the fat.

I am slowly going away.

Yet even with all of this, and the persistent wish that I was dead already, I get up. I get up and go. I get up, go, and live a life, challenges and all. I am not sure why I do this. It's a kind of insanity, a kind of self-torture. It would be so much easier to simply stay in bed and do nothing. Yet here I go, off on another day of driving, exploring, road tripping. Somewhere in the midst of all this pain, I will find joy, a moment of happiness, a reason to keep on living. At least for today.

Friday, 3 April 2015

Exhaustion Day

I am still in bed. I have been in bed all day, not even getting up to go pee. Thank goodness for my jug. It had to happen eventually on this trip, that all of the driving, activity and excitement would finally get to me, putting me in a state of total exhaustion. Today is that day.

There are actually a few factors that lead to this day, not just the activity of this road trip. First and foremost, beyond the exertions of daily activity, are the kinds of exertions that go with this trip. Almost every day involves loading and unload the truck, packing and unpacking, moving suitcases,bags and boxes. The activity is a different kind, on top of the driving. That takes its toll.

Then there is the emotional stuff which happens regardless of where I am. Yesterday I got word of another young Mom in our ALS group who has passed away. She was in her late 30's, with small children and a husband who will miss her dearly. People die all the time, Young people die often enough to make it sad but not surprising. It's just that ALS is such a terrible way to die, so much harsher for someone who is young, with so much to live for.

I also got my credit card statement yesterday. It wasn't a shock, per se. I expected a big number. The challenge is that I have never been in debt like this in my life, or at least not since I was a very young man, struggling to get life started, with a future in front of me. To be where I am in life, to face what I am facing, and to have this kind of debt scares the hell out of me. I know that fear is irrational. After all, what can happen that is any worse than what is already happening? Nonetheless, it is unsettling.

In fact a number of things, mostly minor, came together last night to compound my emotional distress. Were I at home, I would have helped myself to a full scale melt-down, one with the big, ugly, snotty ALS cry that comes out at those moments. Last night I decided to stay sober, to face my emotions like a man, fully capable of understanding them.

This approach did not stop the melt-down; it just changed it. There were no tears, no histrionics, no emotional catharsis. Instead I talked a bit to Katherine and tried to sleep. That's when the trouble began. It started with uncontrollable shaking, my body twitching in almost every muscle, rattling me ceaselessly for at least an hour. After that, I simply could not sleep. I watched the clock tick past 3:00, 4:00, and even 5 AM. I remember drifting in and out of sleep at around 5:30 AM, and finally thinking to myself at around 7:00 AM that I should just get up.

I couldn't take a sleeping pill; it would leave me too groggy to drive. Little did I know that I wouldn't be driving regardless. So I lay there, hoping. When Katherine woke up, she took one look at me and said "We are staying here today so you can rest." So we did. I went back to sleep. About an hour ago, she came to me and said I had to get up, that if I slept all day I wouldn't sleep tonight. So I am up, sort of, typing my blog entry in bed.

Thursday, 2 April 2015

Boxing The Continent

The day has arrived; we must head north today. It is the only direction left to us, having east, west, and south blockaded by the sea. We are headed from summer towards winter, from palm breezes to icy northern winds, from ocean to prairie. Of course we won't make this trip in one day; each day will be a small change, a difference only noticeable over the course of time. This is something I am used to, the kind of change I've seen a lot of.

With this last few days, I have achieved something a great many road trippers would love to do; I have "boxed" the USA, as well as pretty much boxing the continent. I have driven the whole of the East Coast, from Newfoundland to South Florida; the whole of the southern US, from Miami Beach to California surf, the whole of the west coast, from the start of the Pacific Coast Highway in Lund, BC right down to Tiajuana, Mexico and even further down the Baja Peninsula to Ensenada; and the whole of the northern crossing, both in the US and Canada, from Seattle to New York and from St. John's to Victoria.

My travels have added other markers. My truck has been from the Arctic Ocean, or as close as one can get in a truck, all the way to the Gulf of Mexico. It has been across the continent west to east and back, through remote Labrador and the northern route of Canada. It has seen spring in Yellowknife, summer on the BC coast, winter in the prairies and fall in the Rockies.

I have driven in every state of the USA, including Hawaii and Alaska, with the exception of Vermont and West Virginia, a situation I plan to remedy at least in part on my way back to Calgary. I have driven in every province and territory of Canada with the exception of Nunavut, where roads are merely a suggestion. I've been as far north as possible in Canada and as far south as possible in the USA, as far east as possible in both Canada and the US, and as far west as possible in both as well. unless you count Haida Gwaii in Canada; I have yet to catch the ferry to the Charlotte's.

I've done a bit of road tripping in the last few years. This is a good thing. I love the freedom and flexibility of a road trip. Even as I write this, Katherine and I are contemplating another change to our itinerary. We are discussing the possibility of making our way home through New York City and Quebec City. It would mean some longer days of driving, but it would be a monumental addition to what has already been an epic road trip.

Nonetheless, our direction is homeward, bound by the dual dictates of time and money. I've already exhausted one of those precious resources. I'm working on the second.

Wednesday, 1 April 2015

Sore Arms In Key West

There is a price for everything. As both my daughter, Kate, and my brother, Peter, have pointed out, I can find a cloud for every silver lining. Unfortunately, in this case, the cloud is all to evident. I am finding more and more that my left arm is sore, becoming weaker as the trip goes on. I can still drive, and still drive safely; I can also see the day coming when that is no longer true.

I am seeing a similar pattern in my right arm, only less obvious and less painful. Katherine has suggested that it is the long days behind the wheel. When I get home, it should be better. The problem is that, with ALS, sore arms don't get better. They just get weaker. I am getting the feeling that my road tripping days, at least the ones where I do the driving, are coming to an end. I have just over two weeks to get back to Calgary. After that, I would like to go to Vancouver to see my new grandson when he arrives in June. Then? Who knows?

Right now I have managed to drive myself from Calgary to Key West, a feat which would either frighten or elude a great many healthy people. Those with more sense and less time would fly, either to Miami or directly to Key West. For me, the use of the time was as important as any other component. I could be at home, stuck in my apartment, looking out the window at the rain and snow, watching people come and go freely at the mall across the road. Instead I am looking out my hotel window, watching the cold Atlantic Ocean mix with the warm Caribbean Sea, the waves washing against the white sand, the wind swishing the palm trees next to my room.

Later today we will go into downtown Key West. Katherine will take a photo of me at the "southernmost point" marker. I have other, similar pictures, in different locations, pictures of me where the Indian Ocean meets the Atlantic Ocean, taken in South Africa, pictures of me at the Arctic Circle, pictures with my children in New York at the World Trade Center before 9/11, and of my children and me at Signal Hill in St. Johns, Newfoundland. I've had some great adventures, including this one.

Perhaps there is no cloud for this silver lining. I would be losing my arms anyway, whether here or at home. I would be tired regardless, whether I drive or not. The reality is that, given a tough choice, I feel I chose wisely, living and being active instead of sitting, stuck in my apartment, dying from inactivity. Given that I get a choice, I choose living, even if it hurts my arms a little.