Monday, 30 June 2014

Saddling Up

People often comment on the way I approach my daily life with ALS. I hear words like inspirational, positive, upbeat and even courageous. I don't think I am any of these things. All I am doing is getting on with what life I have while I still have it. All I am doing is moving onwards, notwithstanding the barricades I face in doing so. This isn't a lot different from what everyone else does; I just have ALS to go with it.

I don't feel brave or strong most of the time. I am, by and large, faking it, making the most of what I have, feeling the fear and doing it anyways. I awake each morning fearful of the day, stiff and sore, tired and unwilling. It would be very easy for me to give up, to simply lie in bed and wait for someone to come and take care of me. I don't, simply because I cannot. It is not in my nature.

That great Hollywood icon of bravery and fearlessness, the actor John Wayne, once said "Courage is being scared to death... and saddling up anyway." This is what I do in the mornings, slowly and grudgingly. I saddle up, heading  out into the day, swaggering a bit, pretending to be John Wayne. In reality I am more like Peewee Herman, internally fearful of so many things.

This is not an easy gig; it takes a lot to keep going, to keep moving while parts of me stop working on an almost daily basis. It's hard to check in on my ALS groups online, groups where someone dies almost every day. It's tiring to do so much with weakening arms and dead legs, to eat more slowly and carefully, to watch where my hands are when picking something up, to continually push myself about in my wheelchair. Yet it is what I have, it is what I live with.

My son once said to me I should focus on what I have, not on what I have lost, that I should leave the past behind me; he was trying to tell me to focus on positive things. My internal response was to say, as I do when others say things like this to me, that it's an easy thing to say when you have lost nothing and have much. I have ALS; I am not going to focus on that. I am afraid; I am not going to focus on that. I look at it like an onion. My outer layers show the positive, outgoing person that is the basis of much of what is me. As you go deeper, there are other layers, more complex layers. Those lower layers don't come out often, usually only showing up when I am with people I trust.

Fear is one of them; I don't show my fear all that much. It does little good. Instead, I saddle up anyways. I do not lack for fear; I just do it anyways, I just keep going. It's just hard.

Sunday, 29 June 2014

Worth The Tiredness

It is a late blog entry today; it happens rarely and this is one of the rare days. Yesterday we, my Mom and Ray, myself, and a whole group of friends, drove up to Edmonton to see my brother Jim perform in a presentation by the Edmonton Musical Theatre Guild. It was a great performance with excellent songs and performers.

Instead of driving the three hours to Edmonton, seeing the show and driving back, we all stayed in Edmonton at a hotel downtown. After the show, we got together for drinks and snacks. Mom and Ray, and Cheryl went to bed at around midnight. Then me and the boys got to whooping it up in David's room. My brother Peter had left a bottle of Glenmorangie Scotch when he stayed here a couple of weeks back, so I took that with us. We opened it. We drank it. We stayed up far to late, talking about life, sex, and the whole damned thing.

I finally wobbled my way back to the room I was sharing with Cheryl, sliding into my bed with all the quiet of a drunken reveler, something I was by then. Needless to say, Cheryl woke up. We apparently chatted for a bit before I finally fell asleep. That's when the trouble began.

Lately I have been having trouble with urinating at night. I wake up needing to go, can't go, go back to sleep and wake up again a bit later and try to go again. After several attempts things usually work out. Last night was more challenging; it happened a lot and it got messy. Staying in a hotel room with my jug in my backpack on the back of my wheelchair, with my wheelchair at the foot of my bed meant that getting up was a major activity at night. Once again Cheryl woke up. Once again she got up to help me, again, and then again later.

It was not a restful night. In fact it was a bad night in terms of sleeping. I managed to get about five hours in total, split across about seven hours of the night. We were up at 9:00 AM, or at least I was. Cheryl got up earlier so she could shower and dress. It takes me quite some time to get up, to get dressed, to get going. So it was a bit after 10:00 AM by the time I was ready to go to breakfast with the gang. Then there was the three hour drive back from Edmonton to Calgary. I'm tired.

While my sleeping time may have been short, everything before going to bed was fun. It's worth being tired to have some fun now and again, especially with family and friends. In spite of my nighttime interruptions, I will do this again.

Saturday, 28 June 2014

No More Vertical

One of the more challenging aspects of ALS is the creeping incrementalism of it all. It moves slowly; not so slowly that you cannot see changes, just slow enough that those changes only become obvious over a span of time. This is why I only go to the ALS clinic every few months; less often and the changes will not be really that clear. On the plus side, the changes for me move slowly, so I have longer to adjust to them.

Still, it was with some surprise that I returned home from Europe to discover a change that I had not expected, a change that crept up on me while I was wandering blissfully from hotel to hotel from London to Athens. When I got home, I tried to get vertical, only to find that I could not, even with my new approach. That is only partly true, I could get up; my knees would not lock once I was up there and I am now required to hold up my weight with both hands. In other words, over the last few weeks my legs have gone from load bearing to non-load bearing.

It is not that my legs cannot take the strain, they most certainly could if the muscles worked. The problem is that my knees will no longer lock into place. My knee joint, remaining loose, wobbles about and my upper half is no longer able to maintain the balance. Like a spinning plate slowing down at the top of a stick, my upper body eventually simple falls. This morning it was back into my wheelchair, an expediency planned.

I tried this yesterday too, with the same result. My thought yesterday was tiredness. After all, I had just completed a marathon journey from Athens to Calgary, sitting in a small airline seat all the way. Perhaps I just needed a day of rest for my body to recover. It did not. This morning when I tried it, well rested with a full night of sleep, I could not hold myself up, at least not with one hand.

The purpose of getting vertical is to do things with one hand while holding myself vertical on locked knees with the other hand, using that free hand to pull up pants or fetch things down from a cupboard. It looks like that is done, vertical now being relegated to the past. I could do it before I left; I can't do it now. It must have been close then; it is happening now.

Friday, 27 June 2014

Home, But Not For Long

I arrived home from Athens at 11:00 PM last night after more than 22 hours of travel to get here. I rolled into my apartment and dropped my bags. I did not go to sleep. I sat for a bit, thinking about how odd it felt to be here, displaced in my own place, a feeling of unfamiliar with all the familiar about me. I wondered at the silence after three weeks of traveling with another person. I contemplated the space and ease of things after three weeks of cramming and jamming, struggling with rooms to small, bathrooms that didn't work, taxis with no wheelchair access.

Indeed coming home has a sort of quasi-denial to it, especially on first arrival. It feels unreal, as if the trip was reality and home is the dream. It took me a while to settle in, to adjust to the thoughts. I struggled into bed. Then, sleep, precious and most blessed, came to me slowly. My own bed, with its rail and room, extra pillows and mattress fit to me; it came and took me away from travel shock.

This morning I quickly fell back into my normal routine. I am surprised at how easy it is to adapt to the commonplace of home, how quickly I step into the patterns of my life; a slow, long awakening; a shower that works for me; a bathroom where I am comfortable. These are the things in life that make the routine easier, the advantages of having hearth and home setup, ready, useable.

Yet here I sit, missing Tuscany and the green hillsides, covered in vineyards, olive groves and the emerald of new crops. Here I sit, missing the Duomo in Milan and Risotto in the Galleria, the Natural History Museum in London and the Uffizi in Florence, the balcony overlooking the caldera in Santorini and a glass of wine. If home is so good, why do I miss these things so?

I am the sailor come home, into my own port, ship tied to the dock being readied for the next voyage. I am the wanderer come to the familiar, the traveler at rest. Soon the urge will fall upon me again, the urge to go somewhere, to explore once again. In fact, I think I might look online at something like a cruise in the fall. After all, it's not as if I am saving for my retirement or a rainy day. In spite of the sun outside, today is the rainy day. I am going to travel again, soon.

Thursday, 26 June 2014

An Adventure Back To Ordinary

Yesterday, the Parthenon. Today, Calgary. We are making the headlong dash back to the confines of our every day life. We are leaving the incredibly sublime to return to the daily grind, at least Cheryl is. She will take the long trek home today, and return to work tomorrow. I will have a day of rest, an opportunity to welcome Mom and Ray to Calgary, and then on Saturday I am off to Edmonton to see my brother Jim perform in a stage musical.

It is the usual set of mixed feelings that lives within me today, the want for familiar, the saddness of leaving this wonderful adventure. Over the last few weeks, Cheryl and I have done a pastiche, the buffet approach, the Grand Tour. From London to Paris, from Paris to Milan, from Milan to Florence, from Florence to Santorini, finishing here in Athens. We have traveled by plane, train, automobile, and ferry. We've sat in a sidewalk cafe, had lunch in the Milan Galleria, dined in a remote Greek taverna, and taken High Tea at a five star hotel.

I love this kind of vacation, this kind of exploration. I am, at heart, a wanderer, seeking always that which is just over the horizon. One of my friends once called me a "grass is greener" kind of guy, implying that I was always seeing something better somewhere else. I think he was partly right; I was ambitious and wanted to improve my standing. But there was something else, an innate curiousity which has always driven me. I just want to know what comes next, to see the next mountain, to find the next village, to touch and feel the next treasure, to learn.

Today will be the toughest day of travel. We leave here in Athens soon, a few minutes from now, heading out to the airport. Our flight will take us 10 1/2 hours to Toronto, a layover, and another 4 hours to Calgary. We will be trapped at 35,000 feet in a giant winged cigar tube with a couple of hundred other unhappy travelers, most of them likely as sad to leave Athens as we are. We are both tired already; I expect to sleep on the flight as much as I can, using the 20 hours of transit time to at least try to gain a few hours of needed slumber.

Jet lag will attack tomorrow. At least I have the option of sleeping in; Cheryl has to be at work in the morning. For both of us, it is back to ordinary.

Wednesday, 25 June 2014

The Heart Of Greece

It may be a vacation, I may be in Athens, last night may have been spent sitting on the upper patio of my hotel looking at the Parthenon, but I still have those nights where sleep escapes me; last night was one of them. I don't know if it was over-stimulation, a bed where I could not get comfortable, or just the perversity of ALS. It's most likely a combination of all three. Here I am with one day in a city that I regard as the cradle of modern western civilization, almost too tired to get out of bed.

I will get out of bed. I want to go to the Parthenon. I want to walk, or rather roll, in the Acropolis, to stand on the ground where Sophocles stood, to imagine myself listening to the declaration of democracy by Solon, to think of Pericles and his massive building program that made this city a wonder of the ancient world. It will take a bit of extra effort; I'll get there.

A lot of people don't realize that in many ways, Athens is almost the city that disappeared, as have so many other great cities. This is the city that was savaged by the Persians some 500 years before the birth of Christ. This is the city that was dominated, ruled over, controlled by the Ottoman Turks for hundreds of years, years which saw the destruction of many of its great monuments and the outright theft of so many others. Until the Greek Ware of Liberation ended in Greek victory in 1833, this was a city beaten down.

It was only the combination of victory in war and the philhellenic movement sweeping through intellectualist Europe that brought this city back from the edge of sinking into the mists of time. When chosen as capital after their war for independence, the Greek residents of this city numbered only a few thousand. it was only the granting of the first modern Olympics to Athens in 1896 that Athens once again truly returned to the world stage. Since then the city has recovered much of its stature, if not all of its stolen treasures.

The heart of Athens is the Acropolis. It is not the heart of Greece. This small country still cherishes its history of independent city-states, now seen as provinces. This country cherishes its heritage its wily, crafty, battle scarred climb and recovery from subjugation to freedom. The history of Greece is the stuff of legends, both modern and ancient. A city is not the heart of this nation; it's history is.

Tuesday, 24 June 2014

Santorini Up And Down

The island of Santorini is actually the tip of an ancient volcano, or rather four ancient volcanoes that have formed repeatedly in this location to blow a giant hole in the ocean, leaving the partially complete cirlce at the top, forming five separate islands, the older three being Thira now called Santorini, Thirasia, and Apronisi along with the newer volcanic islands of Palea Kameni, or Old Kameni, and Nea, or New, Kameni.

The first volcano to start this process erupted about 180,000 years ago. The second continued the orogenic work of the first some 70,000 years ago with the third following on some 21,000 years back. In tectonic terms, this is all very recent. The fourth, and apparently most spectacular, was about 3,600 years ago, well within the span of historical memory, and may have inspired the legend associated with Atlantis. The volcanic structures beneath the sea are still active, producing the small Kameni islands within the middle of the caldera, rather like a lava dome builds in any active volcano. This island is living geology at work.

Yesterday we had a tour of the above water portion of this volcano, this caldera in the sea. Our driver, in typical Mediterranean fashion, showed up about an hour late. He arrived, as to be expected, in a vehicle totally unsuited to wheelchair access. He looked at me, we looked at the mini-van, and he went off to get a different car, one into which I could transfer, one where he had to tie the trunk closed in order to contain my folded up wheelchair.

Once thus readied, we headed off, our tour guide wildly driving the narrow, twisting streets of the island, paying little heed to others on the road, to things like traffic signs. Having blown two or three stop signs, I asked him if they were just a suggestion. He said "I know the road. I know the traffic. I can see that nobody is coming. No need to stop." And on we went.

Our tour took us from one end of the crescent shaped island of Thira to the other end, from one side to the other, from the highest point on the mountain edge to the black sand beach at the bottom. I only felt truly at risk when he was chatting on his cell phone, meandering his way up the mountain side on a narrow road, paying little heed to oncoming traffic or where exactly the edge of the road met the cliff that marked our dive to the top.

He dropped us for dinner at a fabulous local taverna specializing in locally caught seafood. I wanted grilled octopus for dinner to which the waiter replied, "I have to warn you, it is frozen. It is not the season for fresh octopus." I ordered their special octopus in tomato sauce instead, good even with frozen octopus. Cheryl had local prawns and we both had main courses of local fresh fish. Ouzo beforehand and wine during completed dinner nicely, along with baklava for dessert.

Once again our driver arrived. Once again he hurtled us along narrow, windy roads. Once again we climbed the side of the caldera to arrive at our small hotel. Once again we spent an evening with a bottle of wine watching the sun set over the Mediterranean Sea.

Today we take leave of this small bit of paradise, heading by ferry to Athens, a four and a half hour ride on the high speed ferry. We like it here. We wish we were not leaving, but leave we must. Tomorrow a new adventure awaits us.

Monday, 23 June 2014

Short Term Sunburn

I have a sunburn. Apparently the deck shade under which I was sitting yesterday does not quite filter out the UV rays of the powerful Mediterranean sun. Apparently my pale white skin simply cannot withstand the sun damage that is common to us northerners in these southern climes. Apparently I should have known better. Of course none of this was apparent to me when I fell asleep by the pool.

What is interesting is my reaction to this sunburn. I am suffering with the discomfort of it, complaining and whining as only I can do with this kind of thing. Yet here I am, complaining about a mere sunburn while saying little about the many pains and struggles of each day thanks to ALS. I whine about the stinging skin with which I now suffer but say little about the pain in my toes as they curl into my shoes. I make little yelps of pain when I lift my legs into bed yet I say nothing to the constant ache and soreness in my arms, shoulders and neck, a forewarning of what is to come into my life soon enough.

It is always the immediate that we as humans see first, always the problem right in front of us that gets our attention. It is the nature of the human experience to consider more about getting to the grocery store in our car than we do about the impact of our drive, and so many other drives, on our planet. We see the short haul, first and foremost. We are a species that deals with the near term, our longest view perhaps being a few months or less.

There are those amongst us who see long term, those who can look at a project or outcome some 100 years hence, or even perhaps 1,000 years hence, and take the first step on that path. There are those who can plan a cathedral or castle or monument that will take many lifetimes to build. This skill lies within all of us, there to be called upon as needed. Yet each and every one of us will complain about a sunburn, short term as it must be. We are just that way.

Sunday, 22 June 2014

My Day Of Rest

Today is a day of rest; how appropriate for a Sunday. Yesterday was a day of hurry, our long drive from Campestri to Fiumicino near Rome followed by a flight to Athens then Santorini. It was one of those endurance days that can happen with travel, where you need to get from one place to another so you pull all your strength and internal resources together, getting it done as best you can.

The drive from Villa Campestri was uneventful although driving itself is stressful for Cheryl, especially so in a foreign country where she is not entirely sure where we are going or what those signs all say. She championed up, took the hit for four hours, getting us to the airport with plenty of time and all in one piece. I slept much of the way, having forced myself to get up early so we could be there on time. I will likely do the same when we fly from Athens to Toronto on Thursday, sleeping the sleep of the exhausted.

The flights themselves were uneventful with the noted exception of our transfer in Athens. When the plain arrived and all the other passengers were duly de-planed, the flight crew came to ask us if we were going to Santorini. We said "yes". The flight crew chief said "So are all of we, and so is this plane. Would you like to just stay on board while we prepare it for the flight, rather than getting off and getting back on again in a half hour? Again, we said "yes". So there was no transfer; there was rest.

Arrival in Santoriini was as expected, only the plain ramp was stairs, not an airport ramp. The were going to use one of those large, mobile lifts used for loading food and supplies as a way to get me down from the plane. It worked wonderfully, as did the very large, very sweaty, very hairy Greek fellow manhandling me out of my seat, into their version of an airplane wheelchair, onto the lift, finally aiding in the move from their chair to mine. Did I mention he was very sweaty? It's warm here.

Our wheelchair cab was as expected, a very old car with no accommodations for a wheelchair whatsoever. I don't know why we even bother anymore. I have learned to transfer from my chair to a passenger seat without the transfer board, and nobody gets it right regardless of what we tell them. This fellow had even planned on an extra fare, having lured another passenger go along with us. Needless to say, the other passenger did not fit once the luggage and my wheelchair were loaded into his ancient, tiny car. With all of us on board, he drove wildly into the night, treating stop signs like suggestions and traffic like a pinball game.

This morning my time of rest is a pleasantly slow awakening, breakfast in bed brought by the hotel, coffee beside me, as I look out the window at the inviting blue waters of the Sea of Crete. Our hotel is perched high atop the caldera, overlooking the half moon bay that makes up what remains of this ancient volcano, the top blown off thousands of years ago in the orogenic violence that formed these many islands. The air is warm, with no humidity and no wind. It is a rare day here on Santorini.

Saturday, 21 June 2014


Life in Italy moves to its own rhythm. It is a country filled with helpful thoughts and people who move to respond in their own time and pace. Take our train ride to Florence yesterday, the one with amply advertised handicapped access, both for the train and the station. Apparently they have a different meaning for these things than we do.

We wanted to go to Firenze, so we headed to the train station. There we found a totally automated station with no human station staff, the notable exception being the woman working hard to keep the platforms and bathrooms clean. The station, in fact, had a handicapped washroom; they keep it locked. If you wish to use it, you must first find the cleaning woman and ask her to unlock the washroom door, and when complete you are politely and profusely requested to find her again so she can lock it up again. I am not sure what they do in those hours when she is not at the station, but she assures me this situation is "normale".

While we could not find a station agent, there was a very helpful conductor for a different train awaiting his time for work, awaiting his own train. We asked him about wheelchair access for the train to Firenze, the train currently in the station getting ready to go. With profuse apologies and much gesticulation, he, via his companion who translated, told us there was no way to get a wheelchair onto the train, notwithstanding the signs and symbols on the station map, on the schedule, on the train itself, even on the automated ticket stand. "I am so sorry; it's not possible."

There was another train in the station, leaving in another hour. Perhaps we could talk to the train crew there to see if they could offer us the "salablu" service, the service that puts wheelchair people on trains, the service that depends on train station agents to operate the lift system. Unfortunately this station was not staffed. It's "normale"

We went to the other train, the one that would leave in an hour, except that the conductor and driver only show up about 20 minutes beforehand. That's when their shift starts; it's "normale". We waited. When they arrived they, with much gesticulation, expressed deep sorrow and frustration at the absence of "salablu" in this station, that they would work very hard to see what they could do, that this situation, unfortunately, was "normale".

You see, there were handicapped ramps designed into these trains. The stickers were there for all to see. The buttons to activate the ramps were in place, still functioning. Unfortunately the ramps, over time, had broken, one does not know how, and would no longer retract once extended. This, of course, meant the train could not go. So they left the ramps un-repaired and implemented the "salablu" service, the one "not possible" in our station as there were no personnel to provide the service.

I know a bit about Italy; I know that all that phone calling and loud talking and hand waving was their way of trying to help, yet I also know that "normale" and "not possible" meant they were not going to get me on to that train. I finally took matters into my own hands and to the horrified stares of the conductor and driver, I simply transferred from my chair to the floor of the train. Cheryl lifted my chair onto the train and she, along with the now thoroughly embarrassed train crew, helped me up and into my chair. This was not "normale".

We went to Firenze where the "salablu" team was there to help me off the train, having been duly warned by the conductor on our train. We spent a wonderful couple of hours at the Uffizi Museum. We went back to the "salablu" office in the train station where they politely informed us that, while "salablu" operated in Firenze, it was "not possible" in Borgo San Lorenzo, our home stop. They could get me on the train, but they could not get me off the train.

Once again, I took matters into my own hands. We got on the train, this one fully accessible right down to a wheelchair washroom on board. It was even at a platform with a level access; I could get on it myself, without the help of the two big, burly men from "salablu" whose job it was to ensure I did not get stuck on the 2 inch gap from platform to train. The train departed with us on board. We went to our station where I slid out of my chair and along the floor to the door. There a very helpful young couple assisted Cheryl in getting me into my chair, now down on the platform.

All of this activity meant the the train doors remained open during the transfer. The conductor got out of the front car to see what was going on. He stared at the situation and seeing it well in hand, simply waited for us to finish the process. He did not come to help. There was no hand waving nor expression of deepest sympathy and frustration. After all, for him this must be "normale"

Friday, 20 June 2014

Cinque Terre

To call the road into Monterossa Al Mare "snakelike" is to do an injustice to snakes, understating the twists and curves by mere comparison to something as natural and mild as a snake. The road to this uppermost of the five seaside villages that make up Cinque Terre is a twisting, winding, switch back of a goat path, laid out by a severely drunken road builder overtop of an old trail once used by pirates to escape into the Ligurian hills after having raided a Roman trading vessel.

This road was never meant for cars yet they built it nonetheless, offering one the car sickness experience of going up one side of the hills, through narrow, ever threatening gorges and passes, then down the other on this ancient trail carved straight into the mountainside, all the while looking down, almost straight down, at the vast Ligurian Sea, spying the roofs of the village from hundreds of feet above.

Monterossa Al Mare, along with the other four of the Cinque Terre villages, is glued to this hillside, stacked up like children's letter blocks, near atop one another on vertical landscape where trees and plants growing upwards brush against the ground on the landward side, the other side falling away so rapidly that fruit from a tree might near achieve vertical free fall if not picked on time. They are beautiful in their coats of colour, vivid enough to have sprung to life only yesterday from a painter's palette.

The seashore is a jewel of brilliant sand pushed up by seas of clear blue, so clear that the rocks of the bottom can be seen from atop the seaside roadway that goes the shortest distance possible to allow a car to go from beach to the village centre. Travel here is mainly by foot or by a small coastal passenger ferry, loaded and unloaded perilously over a narrow gangplank onto the waiting jetty, in some places no more than a large, flat rock.

Yet even amongst this haven for the enabled, there was parking suited for me. With the freewheel attached to my chair I was able to make up up to the path, albeit with ample assistance from Cheryl. We were able to walk the smooth sidewalk and small road from beach to village, able to lunch in a cafe overlooking the ocean, able to explore the tunnel and jetty nearby. Even the washrooms for the cafe, outdoors like a prairie outhouse, were wheelchair friendly.

Don't tell me it can't work. Don't tell me it can't be done. If a place as remote as Monterosso Al Mari can do it, it can be done. Sure, there are limits. Ancient house stapled to rapidly rising cliffs, built long before electricity and elevators, will never have access. Yet here they have worked hard so that as much as can be done will be done. Needless to say, yet say it I must, I liked Monterossa Al Mare.

Thursday, 19 June 2014

Our Villa In The Tuscan Hills

I sit on the patio of an ancient Italian villa set high on the hillside of the Tuscan valley near Florence, the Villa Campestri, the new building having been constructed in the Renaissance, only five hundred years or so back, on the grounds and foundations of an ancient fort, built some 300 years before the new. The air is pleasantly cool here in the shade while sun shines, illuminating the hillsides of green, the scent of the gardens drifting by on the gentle breeze rising up from the valley below. The staff chatters in the musical lilt of Italian, guests speaking English, German, Dutch and who knows what else. It is a scene of international pastorality.

We drove here yesterday, or rather Cheryl drove, I, imprisoned in the passenger seat, trapped with legs that no longer work in a car with no hand controls. It was the first time in as long as I can remember that I did not drive at least some of a road trip, if not all of it. The time in the passenger seat was easy, allowing me to nap, to rest, and to watch the Italian countryside roll by, fields of corn, rows of fig trees, vineyards in every small patch that would hold them.

Our original plan had been to drive from Milan to Cingue Terre, about three hours. I looked the route up on Google Maps, seeing that the Google directions took us from Milan to Genoa and then down the Ligurian coast. We got in the car and punched our destination into the GPS supplied by the rental agency. It had trouble finding our destinations, something we put down to spelling on our part. We eventually found something close, with a route taking us further south, on a winding mountain road splitting the Appenines. It was about an hour along this road when we discovered why Google had a different route. The road was completely closed about 35 KM from our destination, undergoing apparently necessary roadwork.

We started to take an alternate route through narrow mountain roads that became ever narrower as we went along. Sensing a bad end to this detour, we asked a local about the way whereupon he told us that we could get there but it would take many hours and the roads would get much worse. We turned around and headed back the way we came, eventually getting to the highway. At that point we decided to defer our explorations for today, heading instead to our villa for the night.

The drive, once again piercing the low ridges and steep valleys of the Appenines Mountains, took another couple of hours, finally ending once again on a narrow, steep, twisting mountain road. Cheryl had a full day of it, driving twisting mountain roads through rural Italy. Me? I took it easy.

Wednesday, 18 June 2014

Doing Something New

Time is all we have. It is the only constant in our lives, the only resources that diminishes at a steady rate and can never be replaced. Time is the master of all things, the meter and measure of our lives. Each moment that passes leaves us with one moment less. It is neither a harsh master nor a loving mistress, but a monotonon, constant and perpetual.

I made a time based decision this morning. We will not go to Bergamo on this trip. Our time is limited, as is all time. Rather than jam so much into a day as to make it uncomfortable and unhappy, I have decided that my last visit to Bergamo was probably my last visit to Bergamo. I am not unhappy with this; Cheryl asked me what I wanted and left the decision up to me.

I will always have a vision of the castello, a view in my mind of the wide valley of the Po river pushing its way from Milan to the Adriatic Sea, looking across the horizon to the edges of Milan to the west, seeing the airport from on high, watching the planes land and noticing the curvature of the earth as it went from west to east. I have a treasure in my mind, a view across time to a day in the past, a day that will live with me as long as I can have it, as long as time will allow.

Today, instead of attempting to recreate something from the past, I will do something new. Instead of doing something for the last time, I will do something for the first time. Today we will drive to Villa Campestri near Florence, where we will stay for a couple of days. Our drive will take us through the Tuscan hills, although we may wander, perhaps heading over the Cinque Terre and down to Pisa along the way. We will explore, taking time to make the drive casual, leaving us free to stop if we please or go as we please, leaving us time to enjoy our day, our time of doing something new.

Tuesday, 17 June 2014

Duomo Milano

The streets of Milan are much like the streets of any other city in Europe; busy, crowded, noisy, wide sidewalks along their edges dotted with small restaurant tables and large umbrellas, areas hedged off with mobile wrought iron panels or mobile planters. Europe is a sidewalk culture where people meet for coffee, wine, business or pleasure, where talk and conversation rule the air, no loud music blares, waiters watch and wait, knowing that when you want them they will see it.

Yesterday we walked a short distance along those streets, a mere matter of a few blocks, and the tall buildings gave way to the open space of the Milano Piazza Duomo, a massive central square, the living room of the city, sided all round by shops and restaurants, with the massive Duomo at the end, and the Galleria Emmanual Vittorio II calling from the opposite side. The site of the Duomo as you enter the Piazza is stunning, there is no other way to describe it, with its dozens of spires stabbing into the sky like needles on a fakirs table, its massive doors of wood darkened by nearly a thousand years of exposure, a building constantly alive with the faithful, and the faithful tourists who visit it by the millions every year.

The inside of the Duomo is as stunning as the outside, the massive columns rising up as pillars holding up the heavens, the stained glass windows admitting light in through thousands of shards, the dome sweeping upwards and galleries lying outwards. More than seven hundred years have the hands of men and women laboured to make and maintain this immense house of God. Artwork and statuary hang from the walls, reliquaries lie beneath the floor, the benches for prayer filling the centre in rows so long and deep they seem to be endless. It is a place of peace.

The peace within the Duomo is not the only kind of peace to be had in Milan. We left to explore the Galleria, finding ourselves in a small restaurant where we ordered risotto, eating it reverently, loving the wine and bread that made our simple meal complete. This restaurant is the one where I first had Risotto Milanese, as far as I can recall. It is the restaurant that made me desire to learn how to make this wonderful dish, the restaurant where Caprese worked its way into my vernacular, where the peace of wonderful food can be found.

Behind the Galleria, the statue of Leonardo Da Vince, a Milanese hero, stands guard over his own Piazza, staring across at La Scala, the world's most famous opera house. We decided not to go in; there were stairs and a busy street, and the Galleria was calling us to come back. We went back through, ultimately wandering our way down the Via Dei Mercanti, stopping for another glass of wine and watching people once again.

There was so much more of this in our day, drinking wine, eating good food, watching people. It was the kind of day you can have in many European cities. We had ours in Milan.

Monday, 16 June 2014

Train Adventure

Be careful what you wish for; you might just get it. I described this vacation as an adventure at one point. Yesterday adventure arrived, coming to the Gare de Lyon in a way we never expected. It started as most adventures do, quietly, without much of a warning although with portents aplenty. By the time the day was done, adventure had been delivered.

We went to the train station early yesterday; our train was scheduled for 2:41 pm; we went early to advise the train company that I was in a wheelchair and couldn't walk. This is what they advised us to do the day before when we went in and offered the same advance notification of my situation. Both times the answer was that all was good and the train crew would be ready for us.

We had a little sidewalk breakfast where the sparrows and pigeons terrorized Cheryl in scenes reminiscent of The Birds, that famous Alfred Hitchcock movie, swooping by at high speeds, working desperately to steal the brioche right out of her hands. I, of course, in my kind and understanding way, simply encouraged the birds, feeding them crumbs from my hand and tossing bits on the ground outside the restaurant rail. She was not impressed. Once breakfast was complete, we headed for our train, or at least for the platform from which it was to depart, eventually.

On arrival at the platform, we saw a crowd growing steadily. A station agent was yelling loudly, with people in the crowd yelling loudly back at him. These were not shouts of happiness by any stretch of any imagination. The anger was palpable, the crowd was growing into a mob, and they were not happy. The station had arranged to have military personnel with sub-machine guns stationed at the barricades for crowd control. It was a menacing situation, getting worse by the minute.

We sat back, watching and wondering, thinking we would be fine as we had reserved seating for me and they were expecting my wheelchair. Would it were so. Soon I began to see a separate crowd breaking off and I heard the station agent yelling something about the 14:41 train, our train. We dove into the crowd, struggling against the mass to get to the gate where we were quickly waved through past the armed guards, the mass behind us doing the same one or two at a time. It was then that I noticed that once people had emerged from the gate, they ran, almost to a person, to get to the train, as if walking meant trouble.

I managed to get the attention of a station agent. He looked at my wheelchair as if to say "Where the hell did you come from?" Apparently nobody knew there was a wheelchair passenger; it was not on any notification list or advisement to the platform. Nonetheless he took up the challenge and called for a lift. He asked me if I could walk or stand. I said no. He asked where my seats were and we produced our tickets. He looked very concerned, for reasons I was soon to discover. All the while, as we waited for the wheelchair lift, people were running by, scrambling to get to the train, a train that was clearly filling rapidly.

Eventually the lift came. After copious hand waving and discussion, I was loaded into a train car only to discover that the car was wildly overfull and that the passageway to the seats was only about 24 inches. There was no way I was getting into that train car, or at least that is what I thought. In the meantime Cheryl looked at the platform agent, appealing for help. He merely shrugged and walked away, done with us.

After a number struggles and appeals, a woman in a seat right next to the door gave the seat to me, and with some danger and prodigious effort, I transferred into that seat. My wheelchair disappeared into the inter-car storage area, an area also jammed with other luggage and other people. Cheryl had to stand initially but eventually found a place to sit on a mid-car luggage rack. Others were three to a two person seat, sitting on the floor, sitting on bags and luggage, jammed in like refugees fleeing a battle. There were shouting matches and police interventions as fights broke out over seating assignments. Some people were even tossed of the train! It was mayhem galore.

In this state the train then sat for almost an hour, doubly loaded and steaming with frustration. That's when details began to emerge from other passengers. There had been a strike in the morning and the morning train had been cancelled. All passengers from the morning train were transferred to the afternoon train. All reserved seating assignments were waived. It was a free for all. Oh, and by the way, the washrooms were broken. So it was 7 hours on a doubly crowded train with no access to washrooms that were broken anyways.

On the other hand, there are people who arise in moments like this, people with good hearts and a powerful willingness to make things work for the people around them. One young man helped me and others to get settled, dealing with our luggage and organizing as best he could. He went so far as to appeal the the crowd to allow the elderly to have seats, something that happened upon his appeal. Others worked out re-positioning and re-seating, changing and sharing the space as best as possible.

The train finally left the station and people settled in for the long, long, long ride. After a few hours and a couple of stops, there was a bit more space. There were still people in every space imaginable, crying babies and crowded cars, but it was less and less as more and more left at each station. Finally, in the last hour of the ride, Cheryl managed to get a seat with me. She even fought her way through to the dining car to get us a sandwich, an adventure which she described as taking her life in her hands.

We finally arrived at Milan. As we pulled up beside the platform the station crew had a wheelchair lift waiting. They were friendly and helpful, even trying to figure out how to get me over the gap from the seat to my chair. Finally another passenger just lifted me up and moved me to my wheelchair. I was surprised at his strength and insistence. He was just going to get me off the train, and he did. I was grateful.

By this time it was nearly 11:00 PM at night. We hailed a cab; there would be no wheelchair cab at this time of night. I transferred with the transfer board and some help from Cheryl and the cab driver, reversing the process once we got to our hotel. We were, and are, safely in Milan, our train adventure behind us.

Sunday, 15 June 2014

Even In Paris

Not all Paris is bad. In fact there are some pretty great parts about Paris, not the least of which is the Mercure Hotel where we are staying, next door to the Gare de Lyon. Our hotel room has a terrific wheelchair bathroom and very easy access. The staff have done a great job in making our stay a good one.

Yesterday we went to the Orangerie Museum, in the Tulierie Gardens, near the Louvre. Having been to the Louvre a couple of times and the Grand Palace once, I was determined to see the works of Monet, Picasso, and other impressionists on display; the Orangerie was the place to see them. The process of getting there was interesting. The hotel called a "wheelchair cab" for us which completely failed to show up. Fortunately another cab driver, with a wheelchair cab, saw us standing in front of the hotel and asked if we needed a cab. We took up his offer in spades, reserving him for a pickup after our visit to the museum.

He dropped us off at the museum, or at least as close as we could get, and we agreed we would meet him there at 6:00 PM, an agreement he kept. After putting on my "freewheel|", we headed into the park and up the gravel pathway to the Orangerie. There we discovered access was not only free for me, but free for Cheryl as well, plus they put is right at the front of the line, giving us priority access. It was a good counterpoint to some of the transit issues we have been seeing here in Paris.

After a lovely afternoon in the Tulierie and Orangerie, we headed back to our hotel, prepared for an evening of excitement on a tour of the night life of Paris, something which the vendor had assured us had full wheelchair access. We had even gone to the extra effort of having the hotel staff make the booking for us, ensuring that language was not an issue in describing our needs.

We had dinner first, then waited for our driver. He showed up in a beautiful black Jaguar sedan. He looked at us as he got out, walked right past us to the front desk, and then returned to tell us that he could not take me in the chair. Could I stand up and get in the car please? Since that was impossible, the hotel staff arranged with the tour provider for a "wheelchair van". The van duly arrived, except that it had no wheelchair access; it was a standard van. The driver looked at me and said "Sorry. Can you transfer up into the van somehow?"

After this double comedy of error, both Cheryl and I realized that both the tour and the Moulin Rouge were not going to happen. Not only was transport an impossibility but the timing had become so short as to make it untenable. We stayed in, having a glass of wine in the lounge and going to bed early. It may not have been the evening we planned, but the wine was good and we relaxed. I have learned that you must make what you can out of what you get, even, and perhaps especially, in Paris.

Saturday, 14 June 2014

In Paris?

There is something to be said about Paris. Unfortunately not all of it is good. Being in a wheelchair anywhere is difficult; arriving in Paris took it to a whole new level. You would expect a major city like Paris to be reasonably configured for wheelchairs. Alas, in the main it is not. This is not a real surprise; after all, Paris is filled with Parisians, a people known for their general attitude about anything or anyone not quite up to their view of who should be what.

Paris began with our arrival in the Gare du Nord after a terrific trip via the Eurostar from London through the Channel Tunnel, aka the Chunnel. The trip across takes about two hours plus a time zone change. England is on England time; France is on European time. So leaving at noon gets you into Paris at 3:15 local time. The crew in St. Pancras station in London got me and my wheelchair on board efficiently and we had great seats for the ride. There was even a light lunch and some wine, rather like the airline flights of old; not a one of the airlines would deign to serve food to coach class passengers on a two hour trip these days.

When we got to Paris, there appeared to be nobody to unload those of us in wheelchairs; there were three of us in three consecutive cars. The station agent tried to operate the lift that gets wheelchairs on and off in Paris; it was clearly not something he did often. Nonetheless, he tried until about 20 minutes after arrival the person who normally did the job finally showed up. We managed to get off and out to the taxi line.

When I got to the taxi line they put my right in the front of the line and called up a taxi, a standard taxi. I looked at the taxi drive and he looked at my wheelchair, asking me to get up an sit in the car. I said I could not, so this rather nice fellow went down the line of taxis to see if he could find a wheelchair taxi. I asked the taxi stand agent if there was a handicapped taxi to which he replied that there were none like that in Paris.

Of course I knew this to be untrue. The reality was that the taxi stand operator couldn't be bothered to get me a wheelchair taxi; he had a line up full of "normal" people demanding whatever cab they could get. We finally gave up and got out my transfer board from my suitcase; it was a good thing to have with me at this point. I set up the chair and board and, not without some risk and a lot of difficulty, transferred to the back seat of the car. Then, after loading the luggage, it was off to our hotel.

I asked the front desk clerk at the hotel about wheelchair transportation in Paris. She tells me there are wheelchair cabs, but not many. The buses are mostly wheelchair adapted however the Metro has absolutely no wheelchair access. We knew this would happen on the trip, but in Paris?

Friday, 13 June 2014

A Walk Along The Thames

To walk along the banks of the Thames, to feel the light spring breeze and hear it rustle the leaves of a thousand trees, to smell the grass of a hundred parks and hear the chatter of thousands of workers taking lunch out of doors, to listen the the bustle of the city... this is London on a late spring day. We walked yesterday, from our hotel to Parliament Square and then along Whitehall Road. At Horse Guards Road we turned towards the river then followed the twist of the road to the Embankment station. From there we turned up a narrow side street to find a place for lunch.

It was the oddest find, the kind of discovery you an only make in a city so cosmopolitan as London, an Italian restaurant serving buffalo as its specialty. I had an amazing double patty burger served in a pizza dough bun with eggplant and lightly grilled cherry tomatoes. We had Montepulciano red wine along with it. It was wonderful.

Our post lunch perambulation took us from Westminster down to the Millennium Bridge, nicked-named the Wibbly Wobbly Bridge when it started swaying uncontrollably during its grand opening. It took a further two years of construction to eliminate the wobble. We walked across the bridge, from the north side of the Thames to the south, from London to Soutwark, without a wobble, leaving the traffic of the Thames side road in London for the crowds of the Queen's Walkway on the other side.

This is a popular area of London, with a replica of Shakespeare's Globe Theatre, the Tate Modern Gallery and the National Gallery extension, the London Eye, along with a great many pubs and restaurants dotting the walk that goes from the Tower to Westminster. On a sunny day like yesterday, it is crowded with tourists of every colour, shape, size and language. Every accent in the world can be heard on this stroll along the south bank of the Thames.

It was a wonderful walk, or roll in my case, although lengthy. Cheryl pushed me around for much of it, gaining her day's workout in the process, further explaining our decision to forgo dinner and go to bed early. Still, as all good days must end in London, we found a pub for a beer before heading home. Walking is the best way to see London. It is an amazing city.

Thursday, 12 June 2014

Midnight Micturition

I may be on vacation but ALS is not. It is something to learn, that no matter where I go, the rest of me goes along, whether it be physical or mental. There is no getting away from it, ever. Last night was a good example, although I am not sure if it was a night driven by ALS or aging, both of which can make life interesting.

There are nights when I don't sleep well, nights when for some reason or other I am up or wakeful for much of the night. Last night it was midnight micturition, also known as peeing in the middle of the night. The problem is, however, that despite several awakenings to my bodies demand, I was unable to deliver the goods, finding myself sitting, aiming and waiting. It happens some nights, where my bladder insists that it is ready for relief yet the rest of me says "I don't think so".

When it happens this way, I wake up and try to go, wait for a while, then try to go back to sleep. Unfortunately the discomfort of a bladder saying one thing and the rest saying another stays with me, making sleep almost impossible. So I wait a bit and try again, usually with some limited success. Then I try to sleep again, once more with the discomfort though diminished by my level of success in this process. After a while I get up again, try again, gain what success I can and go back to sleep, if I can.

Last night it happened a few times, my waking and waiting process, the last being at around 7:30 AM, a time when most people get up for the day. My night had been sufficiently interrupted that I tried going back to sleep. I awoke again at 9:30 AM but once again drifted back to sleep until 11:00 AM, whereupon I finally awoke to complete success.

Thank goodness that Cheryl is understanding in all this. When I told her I felt bad about wasting our day in London, she reminded me that we were on vacation, and some days on vacation you just rest. After my bout of midnight micturition, I need a rest.

Wednesday, 11 June 2014

Half Day, Half Night

One of the great things about being on vacation is the ease with which the days begin. Of course my days begin with the same ease at home, but there is something about being in a hotel, in a different city, in a different country that makes the slow, gentle start to a day seem all the more sweet. London was a treat to us last night and it will be a treat today too.

After our flight yesterday we made it to our hotel, a terrific Edwardian building constructed in 1902, a building with all the elegance of that final period of classical architecture before builders and designers discovered the use of concrete, glass and steel, building to save money and maximize space usage rather than considering the effect of their designs and constructions on the landscape in which they were set. It is the classic turn of the century brick building, with narrow hallways and lots of angled and cornered corridors, shaped around an interior patio garden with a terrific outdoor restaurant.

Our first order of business was a nap, something planned to take an hour or two. We slept for about four or five hours, finally getting up to see the world at around dinner time. After dining in the garden we talked about what we might do for the evening. I checked with the concierge at the hotel about reservations to Jersey Boys at the Picadilly Theatre. He suggested we just show up and buy tickets at the door; since I was in a wheelchair we would get priority seating.

We took his advice and grabbed a cab to the theatre. Sure enough there were tickets available and special seating for those of us in wheelchairs, excellent seating. Getting to the seats was an interesting diversion. The theatre staff wheeled me back out the front door and down a side alley to a door generally used as a service door, doubling as an emergency exit. They let us in where we were right next to the wheelchair seating.

As is usual in theatres, the wheelchair seating was simply the removal of a couple of standard seats at the end of a row with easy access. Mostly this works out fairly well, and mostly it did in this case. The only challenge was the narrowness of the seat rows, making it impossible for me to stay in my chair without having to watch the show while seated at ninety degrees from the stage. I transferred to a proper seat and settled in.

The show was terrific and I loved the music. Cheryl had seen the show in Calgary already however she enjoyed the London presentation, suggesting it was somewhat better than the Calgary presentation. After the show it was back out into the alley, and back into a cab to return to the hotel. We finished the day off with a pleasant cocktail and snack in the garden-side bar. For a half day, it was a pretty full day.

Tuesday, 10 June 2014

In London

London, a city in springtime filled with verdant green, a light breeze coursing its way down the narrow streets crowded with the vibrancy of life that only Samuel Johnston could adequately capture when he said "A man who is tired of London is tired of life." We are well ensconced in our hotel, a well equipped handicap room with a shower, including a seat, plenty of grab bars and easy reach to the sink.

The flight last night was, somewhat, uneventful. The flight, the plane, the crew, all did well. Alas the ten month old twins in the seats behind us did not do so well, at least not for the first third of the flight. They, in stereo united, were awake and not afraid in the least to let those of us sharing the plane know of it. I suppose the journey from Australia to London via Toronto was as difficult for them as it was for their young and somewhat enthusiastic parents, both children and parents blissfully unaware of what lies ahead.

I, of course, took a self-medicated approach to the problem, beginning first with a double Gin and Tonic, plus wine with dinner. Amidst the pitter patter of tiny feet kicking the back of my seat, I caught the eye of the flight attendant, who, sensing my need for additional sleeping agent, brought me a second double Gin and Tonic. As that one slowly settled in, a third, this time a single, magically appeared before me. With it came success and I managed to sleep for the final two thirds of the flight. I would say that my night was moderately more successful than Cheryl's, however her approach to sleeping assistance was more moderate than mine.

Having left Toronto at 8:30 PM, we, in the complete perversity of eastbound air travel over the Atlantic, arrived at 8:30 AM here in London. The flight crew and gate agents for both Air Canada and Heathrow Airport were terrific, helping us not only de-board but assisting us with luggage pickup and taking us all the way to get a wheelchair accessible cab, driven, as one could only expect in London, by a Cockney who regaled us with chatter and stories all the way to our hotel.

Where we are staying, the St. James Court, is a stately, classic Edwardian hotel, filled with long, twisting corridors and rooms overlooking the central courtyard. While a classic beauty, she is clearly well kept, with a lovely lobby and patio bar, plus three great restaurants covering all of English culture - an English styke restaurant with classic English food, an oddity in London; a European style bistro with lattes and a full English breakfast; and, of course, the obligatory Indian restaurant should we need a spot of curry for dinner.

We are up, we are ready to explore. All London awaits. I hear a latte calling my name. Life is good.

Monday, 9 June 2014

New Destinations

It's a slow start this morning, an hour awake, a coffee consumed, yet I am barely functional. Mornings come early on the road, traveling, with things to do and places to go. I had once lived a life like this, once been consumed with managing schedules, catching flights, making meetings. This now has become my exception, this timetable based life.

We had an amazing day yesterday at Betty's Run. I continue to be surrounded by loving, caring people who are willing to share this journey with me. It is a different kind of journey, where the traveler stays in one place and the voyage goes on around me. Each day is a different scene, a different destination. Each day, without leaving home, I see a new place in my life.

Today is another kind of travel in my life. Today I get to see my daughter graduate with a Masters degree in Public Health Administration. She takes another step in an amazing life and career, a different voyage than her sisters, uniquely hers and hers alone. In a few minutes we will head out to Convocation Hall at the University of Toronto, another destination I never expected in my life, another voyage.

Life is just that, a series of voyages, some where you are the traveler and others where you are simply an observer, some where you go on the voyage, others where the voyage comes to you. For each of these voyages, the agenda, the travel plan, is a constantly moving target, just as we are when we undertake the trip. It is a vast series of places in our life, yesterday at home, today in Toronto, tomorrow in London, yet always with ourselves on our voyage, sometimes staying in one place and other times on the move.

I am enjoying this voyage, both physical and metaphysical. To travel is to live. To see something new, whether at home or on the road, is to learn and grow, whether you travel in your body or in your mind. New destinations await me today. It is a good thing.

Sunday, 8 June 2014

Once More

Once more unto the breach, dear friends, once more... William Shakespeare, Henry V, Act 3, Scene 1

Today  is the day. It is almost like being back at work, rising early with the sun, my radio alarm reminding me that time is nigh for me to be dressed and gone, coffee ready and breakfast beside me. Today will be a long day, a testing day. It will begin with Betty's Run for ALS here in Calgary along the northside banks of the Glenmore Reservoir, surrounded by friends and other PALS. It will end at the Holiday Inn, Bloor and St. George, Toronto, across the street from the university, where, tomorrow, Kate will receive her Masters Degree in Public Health Administration.

I am ready, girded for battle, with my special wheelchair wheel and my water bottle holder, a different kind of athlete, running a different kind of race. Today the sun will shine on my face, the warmth of the day percolating down through me. I will feel the breeze off the water, smell the scent of marsh and meadow. Today people will surround me, the people who have been, and are, my constant support here in Calgary.

Within the crowd at the run there will be others, other People with ALS. I am now an "old timer", a long time member of this club, having three years with this disease. There will be others with longer durations and others with shorter, there will be those lightly touched and those who are near completely locked in. Some whom I met when I was diagnosed will be missing this year. Others will see me and wonder what their future looks like, if it looks like me. Yet we will be a small group, us PALS, members of a club that we are all dying to get out of.

After the run it will be off to Toronto. I am packed, my gear and clothing all set to go. I have my medications and personal grooming supplies ready to put in my carry-on, along with a good deal of my clothing. My larger bag is dedicated to the tools and devices needed to keep me safe and steady in my wheelchair and through my travels. I am hoping the airlines understand my challenges and can at least make some minimal allowances for the challenge of wheelchair travel.

For this battle I am ready. Unto this breach once more I shall climb. It will not be my last charge at life but it will most certainly be full tilt. I don't plan on living it passively.

Saturday, 7 June 2014

Packing A Little Extra

It was, and is, supposed to be my day of peace, my calm before the storm. Tomorrow starts with Betty's Run at 9:00 AM, meaning I have to be up at 8:00 AM in order to get there, something that may not seem much to some but is a real challenge to me. After the run I expect to have a few people over at lunch and then, at 3:00 PM, it's off to pick up Cheryl and then to the airport, headed for Toronto. We will arrive at 10:00 PM and finally get to our hotel at around midnight. Monday will be Kate's convocation followed by a picnic on Toronto Island, and then a night flight to London.

Today was meant to be a day of laundry and packing, sitting in the quiet of my apartment getting ready, girding my loins for the battle of Sunday and Monday. It has, however, not quite turned out that way. I had to pick up the T-shirts and runner tags for Team Terrific today, something I thought would take a few minutes, something that did just take a few minutes. Then I was to have lunch with a good friend, catching up and just visiting. In order to do this I was going to get up early, at least early for me, sometime around 10:00 AM. The last few days decided otherwise and it was almost noon before I got going, rushing first to pick up my wallet from Cheryl, who has been kind enough to copy the contents in case it gets lost in our travels, then heading downtown for t-shirts and a terrific lunch.

All of this has meant the real start to my day of peace is just now, at 3:00 PM. Now I get to sit, to write a bit, to have a coffee and start my laundry, followed by my packing. Packing for most is simply a matter of clothes, toiletries, medications and other accessories. For me it includes a list of things not normally seen.

Transfer board - Having the transfer board with me means I need my biggest suitcase regardless of what is in it. The transfer board is just long enough that it will fit. It will be very helpful in the many transfer from chair to taxi and vice versa.

Spare Wheelchair Cushion - Things break when you travel. Having a punctured wheelchair cushion is about as bad as it can get for someone in a chair fulltime. So I am taking a spare, just in case.

FreeWheel and T-Bar Attachment - You might wonder why I don't just attach these to my wheelchair and allow the airline to stow them when they stow the chair. The answer is that these are two separate, loose pieces of metal and wheel, something that could easily get damaged or go missing in the hold of an aircraft. Given their price and utility, it's just safer to pack them in the same large back with my transfer board.

Wheelchair Gloves - Those who spend time with me know that I almost always wear gloves when wheeling about. My hands are in almost constant contact with the wheels of my chair, and those wheels are always in contact with the dirt, dust, mud, grime and grit that is all over the streets, everywhere. If I want anything resembling clean hands, I need these gloves, at least three pairs of them to make up for the one or two which will almost certainly go astray on the trip.

Wheelchair Toolkit - Need I say more? It goes in the suitcase, since it cannot clear security if taken in my wheelchair backpack.

Sleeve Covers - Wheeling in a wheelchair can be a dirty business, making a mess of a nice jacket. I've bought a couple of "cast covers" that I can use to protect my sleeves from the aforementioned dust, dirt, grime and grit.

Urine Jug - This goes everywhere I go. For this trip I have come up with a discreet soft bag to contain it, so as to save the delicate constitutions of those around me, saving them from having to see this part of my daily reality.

I am sure there are other things, things I will forget. I am ready for that moment, halfway between Calgary and Toronto, when I go "Oh shit". It's bound to happen.

Friday, 6 June 2014

I Love My Life

Last night I went to Name That Tune, one of the weekly events which I now attend weakly. While I still participate, singing with enthusiasm when called upon, guessing tunes as best I can, I don't have the strength to dance like I used to. It doesn't really matter; I still have a ton of fun. In fact last night I stayed to hang out with the owner of the pub, Steve, and the MC for Name That Tune, Curtis. We got to talking and had a few beers.Then, suddenly, it was 2:30 AM. I didn't get home to bed until 3:00 AM.

This morning I had to get up early, at least early for me, at 10:30 AM, so that I could drive my daughter, Kate, to the airport. She is headed to Toronto, where I will be joining her on Monday for her University of Toronto Convocation. Kate is the most educated person in our family as yet, with a Masters Degree in Public Health Administration. I am proud of her, not because of her education but because of her amazing blend of compassion and ambition.

I love being a social creature. I love being a Dad. I love that I get to do these things, to help my children, to spend time with friends. I love my life. It's hard to believe, when faced with that which I must face, that I could say this. It is hard to understand that given this brutal diagnosis, this loss of so much, this daily tedium and dismay, that I could say how much I love, enjoy, find pleasure, in the life that I get to live. My life, in spite of the daily struggles, the pain of dressing, the struggle of cleaning and cooking and shopping and a thousand other daily chores, is a pleasure to live, a wonder to have, a life worth living.

It is not that my life is endless, nor is it that it is short. Each of us must face an end, a time when our clock winds down, when our days meet their number. Each of us will find a time, either suddenly or slowly, when we must leave all that we hold dear in this life. I know this is happening to me, one day, one hour, one moment at at time. Each day I get that message; another of my PALS passes, dying, leaving me and so many others behind to carry the torch of life.

For me, I see that torch as a light to live by, a light to shine in all that I do. It is the glory of living, the light that makes day out of night. I know that I must die; I choose to live until it happens, living in the light of day, not the gloom of coming darkness. I just love being alive. If this is all I have, I will live it until the end; Dad, friend, Person with ALS.

Thursday, 5 June 2014

It's Personal

Before you read on, beware that I am NOT asking for money or contributions. Betty's Run for ALS is in a few days; it happens this coming Sunday morning. This run raises funds for the ALS Society of Alberta. I thought it would be good to share with you some of the things the society does for me, some of the direct and impactful ways they have helped me through this process, with this disease.

It's important to know the challenges of supporting a group of PALS, a group where you lose about a quarter to a third of your constituents every year, a group where presentation differs so dramatically from person to person, a group where nearly 90% die within five years of diagnosis. This is a support society needing very special, very compassionate, very strong people within it. This is a society needing a very special kind of dedication.

For me, this dedication and compassion showed up almost immediately after I was diagnosed. I was fortunate; Alberta Health Services still had a Case Manager for ALS when I was diagnosed. A couple of days after diagnosis, once the tears and shock had passed, Denise, my AHS Case Manager reached out to me, arranging to come and see me. After an initial assessment visit, she came back, loaded with gear, new toys for me, initially a shower transfer bench and a walker.

Soon afterwards Denise arranged the delivery of a manual wheelchair as well as a power wheelchair, all of this not costing me a penny, provided to me by the ALS Society of Alberta. Were I to have been forced to purchase this equipment, it would have cost me nearly $30,000, an expense I could not have afforded. I asked her about the ALS Society and she said "You are going to meet Jane Rivest. She, along with Sue Monroe at the ALS Clinic, will be your two angels." She was right; Jane is amazing and without her and her team I would have long ago given up.

The other day was another great example. I am headed for Europe in a couple of days and wanted a "FreeWheel" attachment for my wheelchair. It's a large front wheel which will make it easier for me to go over the rough ground and cobbled streets that are an intrinsic part of the European experience. I went into the wheelchair store to order the part and the ALS Society representative was there. He said "You don't have to buy that. We will buy it for you", saving me another $1,000.

The really great part about all this equipment is that it will outlive me. Another Person with ALS will get the freewheel attachment after I no longer need it. Another person, new to the struggles of this illness, will have a walker, a transfer board, a power wheelchair, a manual wheelchair, a shower bench and whatever else they need, long after I am gone. The society is a kind of equipment bank, allowing PALS to spend their money on living well, not on the equipment needed to do so.

It's not just the equipment, soon to include a lift sling system in my bedroom and who knows what else. It's the emotional and moral support as well. The kindness and understanding of the ALS Society team, working to help me through the medical and emotional challenges I face, helping me to plan for the inevitable, for they know what it is. They are there to talk, to listen, to advise, and to care; not just for me, but for the next person whose life is forever changed by these three little letters.

This is why I am supporting Betty's Run. It's personal. It's for me; it's for other PALS. It makes a difference on a one-to-one level. It counts.

Wednesday, 4 June 2014

Guest Blogger: Sarah Coglianese - Accepting Help, With Grace

I've met a lot of PALS online over the last couple of years, all of them sharing my journey, some ahead, some behind, some beside. They too are writers, saying things in ways far better than I ever could. Here is one of them, Sarah Coglianese

Sarah was diagnosed with ALS in 2012, after a year of random falls and unexplained muscle weakness. Previously a runner, Sarah now uses a wheelchair to get around, and she still finds the good and the funny in each day, mainly thanks to her hilarious, sweet, and massively feisty 4-year-old daughter. Here is what Sarah has to say about learning to accept help. I could say the same, except she says it so well.

When I was diagnosed with ALS at the age of 33, I was still entirely independent. Sure, my legs and feet were weakening, and didn't *quite* behave the way I wanted them to. I could no longer go for the runs that had always cleared my head. But I could drive, I could dress myself, I could cook, I could stand up.

Now, two years later, I can't drive. I can sometimes dress myself. I can't cook, unless you count heating up food in the microwave (and honestly, even that's sometimes hard.) I can only stand up if I have something very sturdy to hold onto, and if my legs feel like cooperating in that moment.

So I need help, the kind of help I've never needed before. The kind of help I never thought I would need. Everyone needs help at one point or another, and to pretend otherwise is ridiculous. But needing help much of the time is another story, and something I'm not used to yet. I'm not sure I ever will be.

Though I feel grateful to everyone who helps me get through the day, I'm still angry about this loss of independence. I'm working on ways to accept the changes in my life, and trying to focus on how I would respond if someone I loved was in this position. It's hard.

In the morning, my husband sometimes has to pull me out of bed. He has to brush the knots out of our 4-year-old's hair (knots that she didn't create herself, it was monsters in the night who put them there.) He has to help me pull a dress over my head. If he can't be there, this act alone might take me 20 struggling minutes, and part of the time, I might feel like I'm going to suffocate in my cotton blend. Do I feel depressed that it takes that long or validated by my ability to do it alone? I'm not sure. Mostly I just feel relieved to have clothes on.

Later in the day, my assistant comes. She does the housework I can no longer do. Laundry, dishes, sweeping. She heats up food for me sometimes. She drives me to pick up my daughter from school. In the moments that I can be alone with my daughter, I feel whole. This is usually a two-block roll to her martial arts class or down the street to get a cookie afterwards. We don't have much time together, just the two of us, out in the world.

In the evening, my husband returns from a long day at work. He cooks. He cleans. I do what I can to help, by reading to our daughter or watching her dance. This brings about such conflicting emotions. Small things make me happy, like just being with my family. But the guilt, the sadness, the frustration...they are all there, too, right at the surface, and sometimes their angry words slip out using my voice.

My daughter wants to do almost everything by herself. When she was younger, she would scream at us, "SELF!" if we tried to interfere with things like buckling her car seat or dressing her. It's an instinct I now understand better than I ever did before. To be able to do basic things for yourself is a right we all expect. To be able to accept help gracefully is an acquired skill. I'm still working on it.

Tuesday, 3 June 2014

I Got Vertical This Morning!

I learned something new this morning, something good, something exciting. I learned a new way to get myself vertical. You will note I don't call it "standing up" although at the end of the process I am doing something approximating standing. My legs are vertical and they are bearing most of my weight. I still need my arms and hands to take up some of the weight and keep me balanced. But I am up, up there, at 6 feet tall!

It's interesting how we make changes and adapt as this disease progresses; not just me, but those around me and other PALS that I know. We all adjust and make changes. Sometimes as one change happens, I forget to look around at my alternatives, instead just giving in to another loss, another defeat in this terminal battle. I need to remember that there are victories too, like this morning. Right now I am celebrating that victory.

I have slowly been losing my ability to get myself vertical, my arms losing the strength needed to get me up there. The "old way" of doing this for getting dressed needed several steps. First I would move the feet of my wheelchair to the side or underneath the chair. This allowed me to get closer into the corner made by my dresser and the M-rail on my bed. Then I would carefully plant my feet close enough to the dresser that my legs could get vertical without banging into the dresser, as close as you would normally stand, or perhaps a bit closer. Then I would use my arms to lift myself part way. Once halfway up, I would "pop" my hand on the M-rail up and forward, ultimately transferring it to the dresser. With both hands even and on the dresser, holding all my body weight, I would push myself vertical. I was up!

As my arms have weakened I have had greater difficulty moving my hand forward and taking the weight as I transferred it from the M-rail to the dresser. I had pretty much lost it all, saying good bye to getting vertical. Then, this morning, I noticed that with the new low-profile box spring, the M-rail and the dresser were pretty much at the same height. I also noticed that if I got closer into the corner, I would have a near parallel balance across both rail and dresser.

So I tried it. I got in close in the corner, positioned my feet, and did a straight lift using the M-Rail and the dresser. It worked; I got vertical! All I had to do was use the M-rail and the dresser as my balance points instead of just the dresser. I didn't have to move my hands in the process. I carefully edged my pants up, balancing and carrying the weight with one arm and hand at a time.

It is a small victory; it a victory nonetheless. In a battle with mostly losses, I like winning the odd one now and then. It keeps me fighting.

Monday, 2 June 2014


I sit here in front of my keyboard, my eyes bleary, red, damp from the effects of a wakeful night. I didn't get to sleep until after 4:15 AM; that was the last time I remember looking at the clock. Then my phone rang at 8:22 AM. I managed to get back to sleep at around 9, fitfully. I finally gave up, between the pain in my lower back and the light of day streaming into my window, at about noon. I got out of bed and got dressed.

One of my three Home Care workers will arrive shortly. She is due at 1:00 PM however timely arrival is almost impossible in a business where you are dealing with the ever shifting needs of patients like me. Not all Home Care patients are terminally ill. In fact, very few of them are. Most are infirm from illness or suffering from the effects of aging. Of course reality is that we are all terminally ill; it's just that some of us get that label a bit earlier than others.

When she finally arrives to help me with my Range of Motion exercises, it will likely be right in the midst of this pathetic effort at writing. My eyes can barely focus, my fingers tired with the effort of lifting up and down. There is, however, a good thing to be said of this. My exhaustion today is not the exhaustion of ALS. It is a plain and simple tiredness from lack of sleep, a condition I have had before and will likely have again, a condition I share with much of humanity.

My daughter, Mary, had a baby boy a few days back, bringing my grandchild total to three. Quinn is the first grandson. Just yesterday she posted on Facebook how tired she was, how little sleep she was getting. I understand how she feels this morning. Fortunately for me, I will be able to take another shot at sleeping tomorrow; she will still have a baby to wake her up several times a night.

It's an odd kind of reversal if you think about it. I am the one with the passing inconvenience while she has a lifetime commitment. Quinn will be waking her from sleep for many months and years; she will spend many nights and days over the coming months feeling the exhaustion of motherhood. I, one the other hand, will go to bed tonight and sleep, regaining my strength and the ability to face another day.

I have ALS; I will spend my short life committed to living with this disease. I will face other sleepless nights worrying and wondering, awakening to the exhaustion of my illness. She has a child and it is my fervent hope that Quinn grows up a healthy and normal boy. As his childhood passes her work will shift from motherhood to parenthood; she will regain her strength to live a wonderful life with her son, daughter and husband. It is as it should be.

Sunday, 1 June 2014

Leg Weights

Last night I had a party, a bunch of people over to help me bottle wine. We ate, we drank, we visited and laughed. It was a wonderful evening. For dinner I made a Risotto Saffrona with Seafood and a Caprese Salad with Hot Capicollo slices. Others brought wonderful salads, rice pilaf, garlic bread and even appetizer snacks. Several bottles of wine emerged from various bags, and I made Chocolate Martinis for those who asked.

These kinds are parties are great fun for me, with one notable exception. Almost invariably, by the time I finish cooking and preparing and welcoming and mixing, I am no longer hungry. Last night was much same as other nights like this. Dinner was served and all I could manage was a bit of garlic bread and a tomato slice. The Risotto disappeared as if vacuumed from the plate; I didn't even have leftovers when I finally got hungry this morning. Still, I cannot complain. I am eating Rice Pilaf as I write this blog, and it is good. Plus, I have nearly 60 bottles of wine in the cupboard. I can hardly complain about that.

Most of the evening was spent simply being alive; ALS didn't come up at all. We, as a group, just go on living as if nothing was different, except that I am in a wheelchair. It's no big deal in our lives as a group, we get on, we have fun, we laugh, we spend time together. The elephant is clearly in the living room; we are just so used to seeing it that as a group we really don't talk about it all that much anymore. After all, what's left to say?

Still, it comes up, as it did last night towards the end of the evening. Questions were asked, examples were given, explanations came out. One of the challenges was explaining what it is like to live with dead legs while sitting in a wheelchair. I demonstrated how I lift myself with my arms, even though my legs hang there. My friend Dan tried it; I pointed out to him that he was using his legs, although involuntarily. So he lifted them in the air and did an arm lift in the Phoang chair. I thought, yeah, kind of, except he did it once and I do it 80 times a day.

Then, this morning, I thought about something Mike had said a few weeks back. He suggested that if you really want to demonstrate what it is like to have these dead legs, people should strap about 25 pounds of weight to each leg, then put on a pair of rollerskates. Thus encumbered, at that point they should try a lift, a transfer. With that weight and those rollerskates, they should try to force themselves vertical using a counter or dresser as their lifting surface.

Mike is right. It's a lot more complicated, and difficult, than simply not using your legs. These dead legs are more than just hanging there. Trying to use them when they just get in the way makes them an impediment, not just a weight. I wish I had the tools to show this to people; it would make my frustration easier for them to understand. It's a great model of what ALS has done to me.