Sling Days

As I get weaker, things get harder to do. There is just no way around that equation. So I have a lot of devices and tools and helpers to make things easier to do. Some days those tools are more for the helpers than they are for me. This morning was like that.

My HCA, Micheal, had a rough night last night. He got woken up by a call from Nigeria at about 5:00 AM. By the time he got off the phone, it was time for him to go to work, a workday that includes doing a lot of things for me. When he told me about his night, I thought this might be a good moment to show him how to use my sling, something he has never done before.

Most HCA's don't do a lot of sling work; it's more of a hospital function than a home care function. My apartment, with all the health accoutrements, is a lot like a hospital room these days. So I showed Micheal how it worked, how it made it a lot easier for me to move myself when there was no help, and how to get me in and out of both my commode chair and my wheelchair.

His eyes fair lit up when he saw how it worked for me. He was almost animated, something he is not naturally prone to. He smiled when he saw the lift go up, me with it in the sling. He found it very easy to get the wheelchair under me, positioned, and for me to set myself into the chair with virtually no assistance from him. This was, if you may recall, his first time.

There have been two outcomes from Michael's introduction to the sling. First, and foremost, he has realised that it doesn't have to be all grunting, pulling, and pushing with me on the transfer board. There are times when the board works well. There are times when using a sling makes life easier. He is all in favour of easier. The second outcome, nearly as important as the first, is that he now realises how important it is for that sling to be in the right place when he leaves. It is definitely there today. This is a good outcome for me.

Watermelon

I just finished cutting and cubing a watermelon. I am exhausted by the effort, the weight of the melon, the work of the cutting. Yet I really like watermelon, and I really like the process of cutting and cubing it into bite sized pieces I can pick up with a fork. This bowl of watermelon chunks beside me will become my snack, perhaps lunch too.

Given the amount of energy I used in carrying, cutting, and cubing this watermelon, I wonder if it is a net negative food for me? Do I use more energy in producing, eating, and digesting than I gain from the food itself? Probably.

There are no "negative calorie" foods. All foods deliver a calorie content. Digesting any food only consumes about 10% to 20% of its caloric value. So if someone else did all the work, carried the melon, cut the melon, and cubed it for me, then I would have a positive calorie gain. This 1 Kg. bowl of melon has only about 300 calories in it. I think the work effort on my part used a lot more than 300 calories.

I love to prepare food. Given that I am losing muscle mass already, preparing food is something I have to consider in my life. If the work of making and eating exceeds the benefit to my body, I should likely not do it. That will not happen, however, with watermelon. I want to eat it. I want to cut and cube it for myself. If there is nobody here to do it for me, then I will do it for myself. It's worth it. I'll make up for it by eating a big batch of Risotto along with it for lunch. There's your caloric intake!

Going On A Cruise

I know I have been taking advantage of my remaining travel funds, going on road trips, flitting off to Mexico. I all of this fun, however, there is still one kind of travel on my bucket list which I have failed to do. I want to go on a cruise, the one kind of vacation I have not taken.

There are three fundamental challenges with going on a cruise ship holiday, none of them having to do with being in a wheelchair, mostly. That's because the cruise ship industry attracts a lot of older people. Cruise companies know this, so build their ships to accommodate wheelchairs and all kinds of other handicaps suffered mostly by seniors. In fact, if you book a cruise and truly have a wheelchair, the cruise lines, most of them, will relocated a passenger in an existing handicapped cabin if they don't have a handicap.

No, the issues I really have with going on a cruise ship holiday fall down to these three things: where can I reasonably expect to go, how can I get someone to go with me, and how do I pay for that extra person if he or she is simply coming along as a health care aide.

The first issue, the one about where I can reasonably expect to go is a cost item as well as a logistical item. Let's face it, if I leave from Vancouver I can drive there with whatever medical equipment I need, making the whole process a lot simpler. However cruises from Vancouver typically go to Alaska, up and down the West Coast, or Hawaii. I don't want to go to Alaska; been there, partly on my own boat. Don't want to go down the West Coast; been there, everywhere along that coast, by car. Don't want to go to Hawaii; well, maybe. I'm just not sure.

There are some trips that go to Panama through to the Caribbean. These might be interesting although the timeline is rough. Most of them are repositioning cruises that take place in September as the Alaska cruise season comes to an end in Vancouver. My other options with vehicle access are San Francisco, Los Angeles, or San Diego, putting a road trip of about a week on the front and back end of the cruise. In fact, anywhere in North America would work for me from that perspective. However that means more cost, and more time.

That whole time and cost thing is the next issue. I need someone to go with me, to accompany me, to help me with my daily routine, to make sure I get where I can get to. This is not an easy ask. A few people have traveled with me. They can attest to some of the issues presented in even the simplest of situations. Things like access to toilets, high curbs, stairs without ramps or elevators. Add to that my inability to get into a tender, and you have some places I simply cannot go, so the other person would have to be okay with going alone. That person would also have to have the ability to take time off work for the road trip and cruise, or just be retired yet in good enough shape to handle things.

Which brings up the final considerations. Do I simply hire someone to go with me? This would mean minimizing the time on each end of the cruise, making a road trip to a Canadian port an impossibility. It also means I would be expected to cover the whole cost of both myself and my care-giver, along with any compensation paid to that care-giver. Of all things, this is my least favourite option. It's just too expensive.

No matter how I toss it up, if I want to go on a cruise, I will need someone to go with me. At least I think that's how it would work. You never know what might happen, but going along seems a bit risky to me these days. So what do I do? My first step, it would seem, is to find someone who is willing to go and doesn't need to be paid to do it. Then, planning can begin.

It's all soooooo complicated.

Time and Timing

I wish I could know, even approximately, how long something will take me. I mean, roughly, I know it takes me about an hour get up, go to the bathroom, and get dressed. Throw a shower in there an it can become an hour and 15 minutes. This, however, assumes I have home care helping me. If I am doing it on my own, it can take anywhere from one to two hours, depending on what difficulties I encounter.

Difficulties? One of the most most common issues when I dress my self is having to go pee halfway through. With Home Care, they pass my jug and ensure things go well. On my own, it's a hit and miss proposition. Try laying on your back, closing your eyes, and peeing into a small mouth jug. Let me know how it goes. For the women out there, this is impossible. I wonder how they deal with it. For me, it usually means dressing all over again in a second pair of clothes.

So I I have to be up for something at a give time, I have two choices. I can get up when home care is here to help, or I can get up on my own, but I have to allow a couple of hours in the process. Most days, Home Care wins. Dressing with help is easier and faster. Dressing alone is exhausting and tiring. Still, some days, like today, I want to sleep in a bit. Last night was a very bad night for sleep, or a very good night for not sleeping, depending on your point of view. When Micheal arrived at 9:00 AM, I wanted to sleep a couple or three more hours. He agreed, especially after he saw me. I was up-beat, but he could tell right away that I was very tired.

This problem is that I had ribs to get into the oven by noon. So, I slept until 11:00 AM, thinking I could get done a bit before noon and still be close enough. Alas, things did not go this way. I was dressed by the crack of noon; not ready to cook, just dressed. Still, I can do this, right? So, once able, the first thing I did was get the ribs grilling, in preparation for slow cooking. I do them that way, searing the outside then cooking them with beans and BBQ sauce in the slow cooker.

Then, of course, there are the onions and a bell pepper to chop. Thank goodness for my Starfrit Onion Chopper. This little gadget makes things faster and easier for me, for anyone for that matter. So I got the ribs started, chopped the onions and peppers, took the ribs from the oven and put them in the slow cooker, then added baked beans, onions and peppers, and BBQ Sauce over top of it all.

This seems simply enough as I describe it, yet it took me a full hour to do these simple tasks as well. So my noon target became 1:00 PM. Dinner will be a bit late. Now all I have to do is get the Spanish Rice ready at the right time. What time is that?

FRS Report

It's not bad enough that I have this terrible cold, but I've decided to do another Functional Rating Scale, a broad based self-evaluation of my general functionality. The ALS-FRS covers 12 areas of basic health functioning, each area scored from 0 to 4. A score of 48 is full functioning. A score of 0 is dead. You can find a full research report and explanations at the ALS C.A.R.E. Project. My score today is 24, down from 28 in December and 30 last summer.

1. Speech - Here I scored a 3. This diminishment reflects the issues I have on occasion with word formation, my odd bit of stumbling in speech, and a barely perceptible slurring that I see, but that most others don't. It doesn't happen a lot.

2. Salivation - I drool. There is no way around it. However this is not a constancy of drool, nor is it the Homer Simpson donut drool. I have markedly excessive saliva. I need to wipe it away from the corners of my mouth, most times with a napkin or my fingers. It's not bad enough that I need a bib yet, nor constant wiping, nor medication. I score a 2 on this measure.

3. Swallowing - I score a 2 on this measure as well, although some would argue that any swallowing and choking issues I have are of my own making. I eat too fast. I take big bites. However this has been the norm for me my whole life, and now that norm is being forced to change because of ALS. What many don't know, and don't see, is that I am having trouble eating some foods, specifically bread or any particularly dry foods. It's odd in that it would seem having excess saliva would help this. Alas, it does not. Dry foods and sticky foods are becoming difficult for me to eat and swallow.

4. Handwriting - This is an almost impossible measurement for me. My cursive has been non-existent for a great many years. I always print in block capitals. Even so, my printing has always been very messy. So I pay attention to how it feels to print, and write, I pay attention to the sloppiness, the errors, the number of over-writes I must do. There are a lot of them. The most important measure is that I write less and less by hand, simply because the act writing tires me out. So I score a 2 on this.

5. Cutting food and handling utensils - I don't have a feeding tube. I seem to be well able to cut my own food, to handle a knife and fork, to feed myself with minimal spillage. However it is diminished in some ways. For example, I use gadgets for most of my food cutting these days, although I can still easily saw my way through a giant steak. So I score this as normal, with a value of 4.

6. Dressing and hygiene - Score 2. This is an area of some self debate for me. I can still pretty much dress myself, but only by using things like the M-rail to re-position during the process, or by using some tricks in terms of leg placement, or more likely by asking for help. Almost everyone around me has had to help me pull up my pants at some point. Several have had to help me get them off.

Intermittent assistance or substitute methods would give me a score of 3. It goes as follows. "You might not need any help to dress but you are now wearing clothes that are easier to get on and off. You might have changed the way you put on your clothes. This includes the situation where your arms are normal but you have to sit to dress due to leg weakness or poor balance. You might be getting occasional help to dress, especially if you have to hurry."

Need attendant for self-care would give me a score of 2. It is defined thus. "You can still help some when dressing such as moving your arm or leg to put it into position. You could not get dressed by yourself without a struggle." This is most like where I am these days, so 2 I take.

7. Turning in bed and adjusting bed clothes - Alas, here I only score a 1. If you've seen me do this, you will understand what a great difficulty this is. You can see it in my dressing as well. In order to turn over these days, I must rotate my upper body so that I can grab something, hopefully an M-rail but sometimes a human helper. Without these aides, I could not turn over all, except in the rarest and most fortunate of circumstances.

8. Walking - I can't walk. At all. I get a zero here.

9. Climbing stairs - I can't climb stairs. At all. I get another zero here.

10. Dyspnea - This means difficult or laboured breathing. If you have been with me for any length of time at all, you've seen me go through instances where I run out of breath or seem to have trouble breathing. It happens whether I am doing something or just sitting there. It happens in conversation. It happens with the least exertion. For this, I score a 1.

11. Orthopnea - Orthopnea is the same as Dyspnea except it happens when you are laying flat, perhaps sleeping or just resting. Oddly enough, this doesn't seem to affect me at all yet. I seem to breathe just fine when I sleep, so I get a score of 4 on this.

12. Respiratory insufficiency - This is just asking if I need a Bi-PaP or other mechanical device to breathe. I do not, so I get a 4 on this too.

In summary, most of me is affected by ALS. My upper body continues to function, perhaps at about 50%. My breathing is still good, although I do run short of breath at times. My core muscles are substantially diminished, which leaves me unable to sit up without a brace or support. My legs are gone, completely. The biggest problems for me these days are in the weakness of my arms and shoulders. I have lost my ability to lift myself, and I am losing my ability to lift almost any weight above about 10 pounds. I am slowly losing my body to ALS, but I am not dead yet.

Mystery Gas

I know I have written a fair bit about body functions, especially toileting functions, in the last 18 months. I now realize this is because it is that part of my body which is, and has been declining the fastest. My lower core muscles are almost completely gone. I can barely sit upright unless I have a brace such as my M-rail, or a support such as the back of my wheelchair. These days even the slightest forward pitch can tumble me out of my wheelchair, my arms barely able to hold me upright, if at all.

So please forgive another tale of loss of "those muscles". It is the strangest thing of late, having happened twice in the last week. I will have to pee; no problem. Yet in the process I have to pass gas as well, something we all do. Only in my case I can no longer tell if the substance in passage is gaseous or solid matter. Twice in the past week I have panicked, feeling that I was releasing solid waste only to be told by someone helping me deal with what I thought would be a terrible mess that there was nothing there.

Do you know how weird it is to think you are pooping, only to find nothing there? It's like a practical joke being played on me by my own body. This first instance was in Mexico, when my current bladder infection began. I had peed on myself, yet again, thanks to these nasty bacteria in me. At the same time I could have sworn I was soiling my pants. Yet when I was changed, there was nothing there.

Last night was even weirder. I woke up at 4:39 AM having to go pee. Once again, gas attended. Only I could have sworn it was a substantial solid mass. I could feel increasing amounts of release, all the time fretting over the mess I was making in my pants, on my towel, on my bed. I lay there, anxious and holding in what I could until Kathy, my Home Care Aide, arrived at 9:00 AM. I told her I had filled up my underpants. She took a look and declared them to be empty.

My next stop was the toilet. Things did, in fact, take their normal course there. The only thing I noticed, both last Wednesday and this morning, is that I produced a very firm, large, solid stool. So perhaps I was being blocked and my muscles couldn't detect what was happening. Interestingly enough, they told me I would maintain sphincter control. I am. I just can't tell for sure.

Wonderful People

I am up. I am alive. I am partly functional. I am out of bed. I am partly dressed. I have a very nasty cold.

The cold came upon me on Saturday, my last full day in Mexico. It started out in a small way, a bit of a headache followed by a bit of a runny nose. Then came the congestion, then the fever, then the weakness, all of this on top of fighting a renewed bladder infection and living with ALS. Yet I enjoyed myself on Saturday, feeling the sun and warmth.

Sunday was another matter. First of all, I felt like crap right from the start of the day. Then we had to contend with the Cancun airport and their belief that they could safely carry me up the stairs in an aisle chair with no straps or retaining devices. This, after nearly dropping me during the transfer from my wheelchair to the aisle chair. Once again, I refused. Once again there was an argument about availability of a ramp. Once again the Sunwing captain stood by me, this time saying they would not take off without me. Once again a ramp appeared, delaying the flight by about a half an hour this time round.

The flight was painful for me, especially on my sinuses. The headache got worse. Unfortunately my Tylenol was in my suitcase with all my other medications. Add to that the general discomfort within my legs and back, and you have a tough flight. I am so grateful Anne was with me to help with so much of it.

In fact, once again I am reminded of how lucky I am to have these people around me. Anne, taking the risk of traveling with me, making sure I was okay, finding a way to have fun on her own while I sat by the beach reading my 1,000 page history of Canada by Conrad Black. Then, this morning, Bobbi came over, bringing medications and milk for my coffee, bringing grapes and apples so I would eat, bringing helpful and pleasant company, motivating me to get up, get dressed, and get going.

I am such a lucky man, to find so many people in my life who care, and who will care, for me. They almost magically appear; at least it feels that way sometimes. Anne, Bobbi, David, Dion, my daughter Kate. Then there are the people along the way, so helpful and kind, like the bellmen Denis and David, like the fellows in the beach hut who helped me get drinks and lifted my legs onto the bench, like the young men and women who wanted so much to carry me down to the ocean so I could feel the water at my feet.

My life is filled with the richness of others. Mexico reminded me of that. For all of the difficulty, for getting a cold, for the fights with airports and hotels, I would do it again, just to experience the capacity within those people to make my life worth living. It makes me want to live, even with this nasty cold, and with ALS.

Non-Adventurer

I seem to be losing, at least for this trip, my sense of adventure, my willingness to cast caution to the wind, to see what is out there beyond the gates of our luxury resort. When I asked Anne this morning what she wanted to do, she had trouble answering, her mind off on a voyage of its own, somewhere beyond the horizons of breakfast. When she finally did return her focus to our day, it landed firmly on the beach and the sand.

I agreed with her decision. Yet I cannot blame my loss of adventurousness on Anne. I truly did agree, seeing no benefit in wandering far from the sand and surf, no benefit is the discomfort of transfers from chair to car and back again, no benefit in learning more or seeing more of our environs. I am happy to settle into my chair by the beach, happy to read the massive book I have with me, happy to have someone bring me margaritas for the day.

There is one underlying reason for this acquiescence to idleness, perhaps even indolence. My energy level has been very low the last couple of days, a combination of late nights and my body fighting another of this seemingly endless pattern of bladder infections. Put short, I need to rest, to take it easy. Adventure does not make for taking things easy.

This is perhaps the first time in all of my travel adventures where staying put, staying in the hotel, staying by the beach, has seemed the right thing to do. I have ever been the wanderer, forever wondering what is out there. I have forever been the explorer, seeking to find what is beyond the horizon. Perhaps those days are gone for me. Perhaps I have hit the point where travel is so onerous that staying in one place just makes sense. That's the way it seems today.

To the beach, book in hand, ordering a margarita, taking it easy. This is what I have become, for now.

Choices

I am compelled to make a choice today. Do I encourage Anne to get behind the wheel of our rented car and head off exploring Playa Del Carmen, maybe even the ruins at Tulum? Do I sit by the beach, watching the endless waves wash gently against the sand, the sound of the surf a distant swish, the sun warming and humid? It's a tough choice; someone has to make a decision.

The beach is winning right now. I'm sitting inside a shaded cabana, a patio just off of the main bar, beside the sand. There is the gentlest of breezes. The bar is playing some sort of Mexican pop music, maintaining the sound of Mexico while playing to the beat of manufactured music. It's easy to sit here, to watch the hours wend their way, like the sea, relentless and continuing.

Yesterday, especially last night, was tough. I had an emergency toilet requirement, coupled with a bout of incontinence that washed its way through every pair of underwear I have with me. I will have to wash some tonight. I washed my bathing suit and shorts yesterday.

My fear is that my bladder infection has once again returned. Fortunately, these days I travel with a course of antibiotics in my medications. I took the first last night. I will continue on with them for the next 11 days. By the time I am through the medications I will be back in Calgary, going to the bladder clinic, seeing the doctor. I have to find out what is causing this consistent, persistent problem. There has to be a way to make it better, to live without the constant wetness, the catheters, the Depends.

For now, however, I will sit at the beach. It has won, at least for now.

Oops. I Forgot

I forgot to write yesterday. I'm not sure how I feel about that. I remembered at about 11:00 PM, after a very long day of exploring the Yucutan countryside, culminating with a fruitless stop at Chichin Itza. I have a sense of responsibility to write, yet at times I resent that very expectation that I should write. Being busy took care of that yesterday.

It all started in the morning. Anne was resting; she was not feeling well. Yet we had wanted to drive to Chichin Itza for the day. So, she rested a bit while I had some lunch and looked after a couple of minor details around arranging a spa time for Anne. When she did feel better, we finalized her spa, then, late in the day, decided to make what we thought was the two hour drive to Chichen Itza. It was 2:30 PM. We expected to arrive no later than 5:00 PM. We had been told Chichen Itza was open until 8 or 9 PM, with a light show starting at 8:00 PM.

We got directions from one of the local tour companies. Bad idead. Thier idea of the road to Chichen Itza meant wandering far out of our way, through all kinds of little towns with their little shops of knick knacks. There is a direct road, a toll highway; that's the "two hour drive". This meander through Mexico ended up taking us close to four hours to complete, putting us a Chichen Itza just as night was falling.

No worries. The light show, were were told, was terrific, including Mayan art designs and archeological explanations. It was to start at 8:00 PM with an audio guided tour through the park, lights emblazoning the key exhibits. The light show on the side of the main pyramid was to start at 9:00 PM.

The rain started at 8:45 PM. Not just a light rain, but a tropical explosion from the skies, the droplets splashing into quickly formed gigantic puddles, the sidewalks slippery and dangerous. They cancelled the light show.

So, not only did we not see Chichin Itza during the day, we didn't see it at night either. Our frustration complete, we got on the toll highway back to our hotel, arriving about two hours and 15 minutes later, at around 11:30 PM. We got as far as the lobby bar and ordered a drink, mine a Pina Colada.

It was at that moment I realized I had forgotten to write in the morning. This holiday crap is screwing with my schedule. There's so much to do when I am supposed to be doing nothing. So that's what I am doing today; nothing.

On The Beach

I'm sitting in the Chill Out Beach Bar here at the Hotel Grand Sunset Princess. It's a big name, appropriate for a very large hotel and resort complex. This place is big enough that they offer a shuttle from the front of the hotel down to the beach. There are three buffet areas for dining, open for breakfast, lunch and dinner. There are about six other restaurant areas which operated as buffet for breakfast and lunch, while becoming theme restaurants for dinner.

This place is large enough that having a power wheelchair with me would make a lot of sense, except I don't want to bring it on the plane. The reality is that this hotel, and many others in Mexico, don't actually do much of anything for wheelchair access. Even in the handicapped rooms, the toilets are set into individual water closets, narrow, impossible to get into with a wheelchair.

I spent yesterday working withe the hotel Chief Concierge; the equivalent of what many would call a "guest experience manager". It was hard to get them to understand that no room would work if I could not access the toilet. In the end we got a standard room with a couple of useful adjustments, and ordered a commode chair. We have also acquired the services each morning of Denis, the bellman who was so helpful on our arrival. We tip him well; he is there for us almost constantly, until 3:00 PM each day.

Today is my first real "vacation" day, although I will confess to taking full advantage of the all included food and drink, especially drink, right from the moment of arrival. At this moment, it's another Marguerita. I slept in until 11:00 AM, recovering from a big night out at the bar last night. I got to the beach bar at exactly noon. I've been here a couple of hours and am only now considering what to do. Sitting here is nice; it's a good option, maybe the best option.

Recovery Day

It's a recovery day, for all concerned. I am still exhausted from the combination of travel in ineptitude yesterday; so is Anne. The hotel is embarrassed about the screw up with our room yesterday; we've been assigned a handicapped room, available in a couple of hours. Sunwing Holidays is working hard to respond both the hotel failure and the disaster at Cancun Airport. As to the folks at Cancun Airport, I don't think they actually give a shit; it's just another day to them.

While we may headed for a new room, our temporary room has the hotel's standard toilet configuration, with the toiler in a narrow, private water closet. It is physically impossible for me to get to it. So I have to wait until 3:00 PM to go to the toilet. Since I will need help with the toilet transfer, it makes little sense for me to try to use a handicapped toilet in the lobby washrooms. Anne can't come into the men's, and I can't roll into the women's.

Denis, the bell-man who so far has been our saviour for so many of the challenges here at the hotel, would most likely be willing to help me on and off the toilet. The thing is, I want to be sure the hotel management understand what my needs are so that the right person can be assigned to help me. It may be Denis; it may be someone from outside the hotel who comes in for an hour or two each day. We are trying to get that settled this afternoon as well.

The hotel in general is terrific. The staff are very helpful. The food is excellent. The bar is always open. We have yet to go to the beach today, but that will come along soon enough. Right now, it's nice to just sit quietly in my room, letting my body and mind recover.

Cancun, Stupid Cancun

It's late here in the Maya Riviera, the sky dark with only the pathway light to illuminate the near black shapes and shadows of bats flicking by in search of mosquitoes for a midnight meal. The air hangs humid, slung low with the dampness of the Caribbean slumping in over the sea, working its way landward to become the clouds of the morning. We are well away from the beach, perhaps a good thing with this the season of Saragasso, the rotting seaweed drifting on the current from the edge of the Atlantic here to the shore of eastern Mexico.

Today was a rough sort of a day, with patches of calm, long patches of calm, before the storms and struggles of what is inevitable when I travel. I am in a wheelchair. This, by definition, means life becomes a shit show on a regular basis. This, the first day of travel, with cabs and cars and airlines and airports and hotels, is a day rife with the opportunity for failure. It did not disappoint in that regard.

First there was the cab this morning. I had reserved it for 6:30 AM. I got out of bed on time, at 5:30 AM. Anne had stayed the night, so we were ready to go. At 6:37 AM, I called the cab company to see where our cab was at. They responded by saying he would "be here in two minutes". When he arrived a few minutes later, the cabbie let it slip that I was lucky he was nearby, that they managed to get him close and get him to us. I guess there really was no reservation, just an idea in someone's records that a wheelchair cab was needed somewhere, sometime.

Then there was the airport. Not the Calgary Airport. That all went smoothly. The real trouble began when we landed at Cancun. Despite several weeks of notice to all parties, concluded with confirming emails and messages, the Cancun Airport did not understand the concept of wheelchair. When the plane landed, the stair unit arrived to disembark passengers. Their plan was to put me in a skinny, aisle chair and carry me down 24 steps of steep aluminum steps, then transfer me to my wheelchair at ground level. I objected.

They, the ground crew, didn't seem to understand that my objection was not to the skinny chair; they tried suggesting a chair with actual straps and restraints on it, then they tried to put my into my own chair. Both alternatives still involved me having to be carried down a steep set of metal stairs in a barely balanced aisle chair held by four or five members of the airport ground crew. I dug in my heels. When they tried to grab me and go, I shouted "Don't touch me!" I then asked which of them would take responsibility if I fell, which of them would answer the questions should I be injured or killed in this process. Things came to a halt.

After nearly two hours of haggling and wrangling with Sunwing, with the Cancun Airport, with the ground crew; after being told flat out at least twice that there was no ramp available, that my only option was to be carried down, I remained up on the edge of the stairway. Then, suddenly, someone decided that there actually was a wheelchair ramp, that there actually was a safe way to get me down from the plane to the ground, one that did not involve me being carried down a rickety set of stairs on an even scarier aisle chair by a less than concerned group of Cancun ground crew. A ramp magically appeared, and we got off the plane.

By this time I was beat. Yet there was still our luggage to claim, our car to rent, our way to make to our hotel. Of course by the time we got here, our wheelchair accessible room had been given away. We came well after everyone else who might have been on our plane, or other planes. So, once here, we had to negotiate a room. We ended up deciding to stay in a standard room for the night. Tomorrow they will transfer us to a handicapped room.

The real blessing in our day was once again from the people, the staff of this hotel, and in particular Denis. My day had been filled with disaster, broken catheters, leaky Depends, wet pants. Then, this angel of a man shows up to help me. He helps me undress and deal with my wet clothing. He helps me dress and feel clean again. He pushes my wheelchair, me on board, to our dinner. Then, after dinner, he pushes me, while Anne walks along, to the edge of the sand, to the smell of the sea, through the scent of the evening air.

Now, let's see what happens tomorrow.

It's A Good Kind Of Busy

It's been a very busy, successful morning! Already I have gotten up, used the bathroom, brushed my teeth, had a shower, and dressed. The turkey is stuffed and in the oven. My kitchen may be a bit of a mess, but the dishwasher is full and running so we can have clean dishes this evening. And now I am having a cup of coffee, taking the time in what will be a busy day to write, resting before the onslaught.

Meaghan, Lewis, Charlotte, and Orson will be arriving shortly. They left Revelstoke at 9:00 AM MST this morning. The drive time from there to hear is 4 1/2 hours without stopping. I am certain they will stop somewhere along the way; they have two small children in the car. Stopping will be essential at some point. So that puts them here at about 2:00 PM, in another hour or so.

Kate is on her way down; she'll be here in about 90 minutes, all bustle and business. Phil and the boys will be coming later. During the interim, Kate will help with getting dinner ready, as will Meaghan, but first she will spend some time playing with Charlotte. Once Phil gets here with his two boys, the fun will really begin.

One of the things I want to do with the four children today is take the over to Toys 'R Us so they can each get something for themselves. Depending on adult supervision, which clearly excludes me, the Disney store may get attacked too. Then, it's back for a giant turkey dinner with ice cream for dessert.

My one big sadness today is that Mary and her family cannot be here. I would have loved so much to see Rose and Charlotte together again. I can imagine Quinn in the Disney Store or Toys 'R Us. I want to do this with them so much. I need to find a way to get them here. The money I save on hotels and such would be easily redirected into silly Grandpa spending.

After the day winds down, the real business of the day will begin; getting ready for Mexico. I am mostly packed; a few last minute things are always how it goes. I need to reserve our cab for the morning. I need to make sure there are no perishables out which might go bad and stink up my apartment. I need to re-re-re-confirm that I have my passport and cash in my travel pouch.

Then, bed. And tomorrow at 5:30 AM I will get up and go to Mexico. I can do this, right?

The Mask

I have this mask I wear, this falsehood I perpetrate. You can see through it sometimes, especially when I am sick or really tired, completely exhausted. Then the mask grows thin. Every once in a while it falls completely, exposing me for what I really am, for how I really feel. The mask is this facade I put on, driven by my basic personality, a lie of uplift, a lie of happiness, a lie of enjoyment.

Truth be told, mask pulled away, I am completely and utterly destroyed by this disease. I am beyond worn, beyond weak, beyond tired. All that I was is gone, or nearly all of it. All that I could do, I can no longer do. All that I had has been taken from me by ALS. I am a shell, susceptible to even the simplest of attacks, the house made of straw, blown down by the lightest wind.

There are those who will say "focus on what you have, not on what you've lost". I say "trade places, tell me how you do that". I know what I have. It is not that I lack gratitude or cannot gain enjoyment from it. My energy is so low that even those uplifting moments are fleeting, stripped away from me in that simple wind of life's losses. Behind the mask, I bear the sorrows of a thousand cuts. I don't want to hear motivational nonsense from people who haven't even borne a fraction of this disease.

I wear this mask to cover the almost constant feelings of sadness, sorrow, weakness, exhaustion. I wear this mask because I know that the unvarnished truth is too much for even the strongest of people to take. I must be stronger than that. Without this mask, those around me would be unable to withstand the constant onslaught of anguish, the persistent and perpetual pain and suffering. I wear this mask, not for myself directly, but indirectly, so that others can feel comfortable, unaffected by that which affects me so much. If I expose too much, I lose too much.

This mask is getting too heavy. The ever increasing weakness of ALS is affecting even my emotional abilities. My mind is clear, when it is not exhausted. Most of the time, clarity is fleeting, only surviving the first onslaught. Then the mask slips, just a bit. I am compelled by the needs of those around me to put it back on again, to cover the ugly reality, so keep my pain within, keeping them safe from what is really happening back here.

I am tired of it all. Either I put down the mask and things get ugly, or I do less and less and less with those I love, once again sheltering them from the horrid reality of this disease. Want a horrible story? I can tell you one every day. Want a sad song? I can sing one for you every night. I know the truth. Nobody wants the hard part, the horrible story, the sad song. But more and more, I have less and less. What I have, I will try to keep. When it is gone, the mask will fall completely. Then you will know.

Home From Hospital

I am home, freed from hospital, sitting in my wheelchair at my dining table, enjoying a coffee, after another bout with a serious bladder and blood infection. I seem to be prone to this type of infection, more serious than a simple bladder infection. Bladder infections are common, so common that most of us get them and defeat them without ever noticing. Mine go a different route, where I fit what is called the SIRS profile; Systemic Inflammatory Response Syndrome, sepsis, severe sepsis, septic shock, and multiple organ dysfunction syndrome.

In other words, I get really sick when I get sick. None of this pissing around with a couple of aspirin. On the plus side, the Enterococcus fecalis bacteria I grow is susceptible to Ciprofloxin, so it can be treated if responded to in a timely fashion. Nonetheless the roller coaster from well, to dribble, to shakes and shivers is a real heart beater. In fact this time my heart did get a bit of a beating. They added tachycardia to the list, just for the hell of it.

It's kind of odd that when I get a UTI, it spreads almost immediately to my kidneys and blood stream. I know what happens. That bacteria works quietly in the background. I dribble when I pee. I feel bad. But I'm not really sure I'm sick. All men my age dribble a bit. Living with ALS makes me exhausted and tired.  Then the sepsis sets in, and I am on death's door with only a few hours notice. I wonder if this is what will take me one day. It's a good possibility.

ALS is not supposed to cause this. In fact my neurologist is insistent that this is not ALS related. I beg to differ with him. I know that ALS will likely not be the cause of my infections, but I know that I have what is called a neurogenic bladder, an issue arising directly from ALS. You see, my neurologist is only looking at the nerve issues, not my whole body. That's why we have a team approach to my treatment. The neurologist may be right or wrong, it doesn't matter. Someone else will chime in too.

For today the wolf is once again pushed from the door. The chill of night is about to replaced by a warm beach in Mexico. Yes, I was sick. Soon I will be well again, or sick again. There's damn little I can do about it, except keep living until I die.

Sick

I'm back. After a couple of days battling septic shock from a bladder and blood infection, I am now well enough that I can type, a major accomplishment in my books. Each time I get something like this, it takes more away from me, moving me further along this pathway. It's not an easy thing. I've done this enough now that the staff here at Foothills are beginning to recognize me.

I'm not going to say much, or write much, today. I am still extremely weak an exhausted. The drugs are doing their job. I will get better. At least from this. I am not going to die today. Today is NOT a good day to die. I have to go to Mexico on Sunday.

Greasing The Seatbelt

It's a beautiful day on the road. David is at the wheel while I get to type, and play with my GPS. I had a good breakfast while chatting with my son, Rick, in Abbotsford. We had a great visit with Mike while enjoying lunch at the White Spot, and now we are rolling along the Trans Canada in the Shuswap, headed for the low peaked Monashee mountains in front of us. This is the easy part of the drive, with the sun up, the clouds parting, the road bare and dry.

I did drive for the first few hours, so I bear no guilt for letting David take a try. In fact David has done only a bit of the driving on this trip. I've been happy enough to drive, and it's a lot of work getting me across the front seat and into the passenger side. I'm a decent enough passenger, have learned to quell most of my back seat driving habits. It's even better when I am typing like this, instead of watching every turn and twist of the road, silently critiquing every bit of David's driving.

It's a funny thing, going home to Alberta, having lived so much of my life within a hour of the ocean. I was born to a seafaring father, took to the water at an early age, and have, since my earliest memories, forever been in love with the sea and shore. Yet these days I am more than happy to go home to Calgary, to the incredible support system I have there.

This trip has seen my abilities decline further. It is almost impossible for me to move once in my seat. The lift needed to shift my body from wheelchair to truck must now come from someone else. The push and slide from seat to seat must be provided by stronger arms than mine. I can still drive this beast, thanks to power steering and power brakes. I noticed today, though, that the seatbelts seem a bit harder to pull, as if they needed to be greased.

This is how I discover most of my losses, in actions which seem just a bit more difficult than before, with pulls and pushes that seem to need oiling or greasing. It's not like I wake up and think I can no longer do something. It's a little bit each day until it is all gone.

Yesterday we celebrated my Mom's 85th birthday. I am fairly certain that's a celebration which will not be had for me; I'll be long dead by that time. It\s hard to explain. I know that we all must die. I know that I may live longer than expected, although I don't expect to live a lot longer. I know that it's just luck and genetic failure that puts me in this position. Still, I envy my Mom and mourn myself, in this disparity of life. If she lives to 90, I will almost certainly not be at that party. The only way out is if a lot of things get a lot more grease in my life. Somehow I\m not so sure even that will work.

From The Ashes of Disaster, Grow The Roses Of Success

It's been a interesting 24 hours. Anytime I can say that without referencing or imply something about ALS, at least not directly, this is a good thing. The last 24 hours were interesting as a challenge to David and I's logistical abilities, our ability to think creatively, and our ability to have fun regardless of how it came at us. As a traveling pair, I think we did a pretty good job.

Thanks to the weather, the ferries from Victoria to Vancouver were cancelled out from underneath us. It happens a few times every year, where winter winds buffet the coast, making sailings uncomfortable, even downright dangerous. So instead of moaning and groaning, perhaps after a bit of moaning and groaning on my part, we set out to make our alternative plan.

Initially we had a room in Victoria, but then discovered that all ferries out of the Victoria area were fully reserved before we had a chance to get a reservation. It was then that we noticed ferries from Duke Point and Departure Bay, up in Nanaimo, were still open. That's about a 90 minute drive under good conditions, perhaps about 10 minutes longer in the weather we had last night.

We cancelled our hotel in Victoria. The receptionist was great, saying anything could happen tonight thanks to the ferry cancellations. We left Mary and family earlier than planned, hitting the road at 7:00 PM for Nanaimo. I took shotgun, using the passenger time to arrange a hotel in Nanaimo. It would seem everyone was having that same idea; there was no room in the inn, any inn.

I know this coast quite well. So I took that knowledge and put it to good use. We ended up in the Best Western in Chemainus, and new property on the edge of that cute little town with all the murals. About three minutes away there was a terrific new restaurant called the Sawmill. Their menu, typical West Coast fare, was complemented by a host of beers all served in "flights" of 4 ounce glasses. One flight of three glasses allows you to taste three different beers. David loved it!

This morning we got up at 5:45 AM and made the 7:45 ferry out of Duke Point. Now at our hotel, my day is truly beginning. I slept as much as I could on the ferry. I am very tired; I'm going to need a nap this afternoon. Yet here we are, Mother Nature behind us, and our plan ahead of us. This will all work out fine.

The Perfect Plan

It was the perfect plan, well thought out with contingencies for all kinds of things. I went to bed early on Wednesday so we could make the drive to Vancouver in one day. We allowed time for traffic and meal stops. We had a hotel booked by the time we got to Vancouver with two beds and a wheelchair access bathroom, albeit without a roll in shower. That one is really pushing our luck. I even booked the room for three nights, using points for one night so I could save a bit of money. It was the perfect plan, until Mother Nature got involved.

This morning we got up, David and I, secure in the knowledge that we had a place to stay for tonight, and plenty of time to go see Mary, Albert, Rose, and Quinn over in Victoria. We had a plan for both the 11:00 AM ferry and the 1:00 PM ferry, little knowing that there was also a noon ferry, which is the one we ended up taking. We thought we had gotten lucky.
1Unfortunately it was also the last one to make the trip, either too, or from, Victoria, or Nanaimo for today. The weather was lumping up pretty badly as we crossed the Strait of Georgia. Heavy winds and rough water do not a happy voyage make, especially for high sided, flat bottomed vessels like the BC Ferry fleet.

Thus it was that, just as we met up with Mary, we got the message. All ferries returning to the mainland from Vancouver Island have been cancelled for the day. We were, and are, stuck here in Victoria with none of my gear, no clothing for David, no commode chair, no M-rail, no nothing. Fortunately, I am flash of brilliant planning, I brought my suitcase this morning just in case I had a catheter failure or something like that. So at least I have clothing and my medications. Nonetheless, what we didn't have was a place to stay. it wasn't in the plan for Victoria. We were supposed to go back to Vancouver tonight.

Mary and David got on the phones and began the search. We've ended up at a motel in Victoria, not all that bad, one I've stayed in before, but fairly basic. On the other hand, since the ferry was cancelled and everyone trying to get back to Vancouver needs a place to stay, there are no discounts on rooms tonight. I am likely to be paying as much for my motel here on the island as I am paying for my four star hotel in Vancouver; you know, the one I am paying for but not staying in. In Nanaimo.

In the meantime, we have a reservation on a 7:45 AM ferry tomorrow out of Nanaimo, a two hour drive up island. We couldn't get anything from here. So we will skip dinner with Mary, Albert and the kids. We will drive for 2 hours. We will hope to find a hotel within our budget, or any budget at all. Then it's up early tomorrow, breakfast on the ferry, and who care where we sleep tonight, so we can get to my Mom's 85th birthday celebration tomorrow. That assumes, of course, that the weather cooperates tomorrow morning.

Driving The Rockies

I am headed to Vancouver today. Once again I will get into my big steel chariot, heading down the ribbon of pavement which worms its way through the valleys and passes of the majestic Rocky Mountains, through lesser ranges and interior plateaus, until we meet that final valley and follow the raging river to the sea. Of course, I can no longer do this alone. Once again David is giving up part of his life to make a part of mine possible.

There is no way to properly express the gratitude I feel for what David is doing, and for what others are doing. It is they, and they alone, who make my life worth living. I am no longer an independent man, no longer free to do as I wish on a simple whim. I need others, I depend on others, I live through the gifts of time they give to me.

This journey, from the still of the prairie to the icy peaks, through steep-sided canyons, across sharp cut rivers carrying away the silt of winter; this journey reminds me so much of life, and has so long been a part of my life. My first ride through the Rockies took place when I was just 4 years old, and then again 2 years later. My second, my first where I truly could appreciate it, was when I was only 17, hitchhiking my way across the country, then again when I was 18. It seems like every year or two since then I have made my way across these ranges.

Lately it's been more often than that. Living in Calgary while my Mom, Ray, and three of my children live in coastal BC means I make my way out there at least a few times a year. I don't often fly; I prefer the road trip. It's just what I like. So today I will do it once again, headed to Vancouver for my Mom's 85th birthday luncheon on Saturday. Then, on Sunday, David and I will charge out again, headed east, for home. That's twice on this drive in only a few days. It will be beautiful.

Sitting Still

I've been busy this morning already, booking medical appointments. I want to see my own doctor before I go to Mexico, and I need to get into the bladder clinic soon. So I made the calls. Next thing on my list is a call to our hotel in Mexico to attempt to gain some form of certainty around getting a wheelchair accessible room.

All of this activity is after a really bad night last night. I wanted to try an experiment. I wanted to see if I could still transfer onto the toilet from my manual chair, get my pants off, use the toilet, and then use my small transfer board to get back on my wheelchair. I wanted to try this on my own, without help, to see what I could accomplish and to see where I would need help. All of this is in preparation for our trip to Mexico, so I can feel confident in almost any situation if need be. This was not a success or failure experiment as much as it was a qualitative test of what might happen.

First of all, I can get onto the toilet fairly easily, especially with the small transfer board. That took only a moment or two. The second step, getting my jeans off, was significantly more problematic. It took well near an hour of wiggling and rocking sideways to effect the needed disrobing. Unfortunately my bowels did what they like to do when I am sitting on the toilet with my butt cheeks spread open. So I got dirty, messy. So did my jeans, my underwear, a couple of washcloths, and at least one towel. They are in the sink, soaking. I will be doing laundry today.

I did, however, finish the use of the toilet, including using the spray function to clean myself up. While the process of getting my pants off was exhausting, I actually used the toilet as intended. This is a good thing. Now I know that if I can get some help with pants and underwear, I can likely use a normal toilet at our hotel in Mexico. All I have to do is find a volunteer to pull my pants down. It could happen.

Getting off of the toilet was far more difficult than I remember, far too difficult for me to do on a daily basis without assistance. It only took about 30 minutes to effect the transfer, but it was really tough on my arms, and scary as hell. I ended up not being able to get the transfer board out from underneath me, so I left if there and cleaned up the mess, another 30 minute task including rinsing soiled clothing and linens as well as mopping up the floor.

So here is what I know. If we get a non-handicapped room in Mexico, but one where the bathroom door is wide enough for a commode chair and the toilet is well placed, I am good to go regardless. If I am compelled by the shape and logistics of the bathroom to use the toilet like a normal person, I need help with pants and the transfer back to my wheelchair. And no matter what the situation, there will be soiled washcloths.

On the other hand, even with a wheelchair bathroom, I am still going to want a commode chair and, if possible, a home care assistant there in the hotel. The only real advantage of the wheelchair bathroom will be safety bars and, with any luck, a handicapped height toilet. Oh, and a roll-in shower. I know this works; David and I did this for three weeks, with only a few accidents.

I'm just seeing how it might work. It's messy. I don't recommend this process. But, at a minimum, I can still sit on a toilet.

Mas Tequila

I've been dealing with travel and accommodation issues today. My friend, Anne, and I have booked a packaged vacation through a company I will decline to name at this time. I will unleash my full fury only after I have a much clearer idea of how all this will work out. As of now, they are simply being unresponsive and unhelpful when it comes to the wheelchair and transfers. This is no surprise to me; I've seen it before.

One of the things these companies ask you to do is submit what they laughingly call a "Special Services Request Form." This is where they ask that you detail all your failings and inabilities. This is not so they can accommodate you. This is so they know what might be coming at them, and know how to gently tell you, or not gently tell you, "Tough luck, buddy. If you are in a wheelchair, you are on your own. We confirm nothing and accept no responsibility."

Here is their response to my request for a wheelchair accessible room, errors included. "The request for a Wheelchair/Handicap Accessible/Ground Floor room has been expedited to destination and notes will be added to their system.  Please be informed that a request is not a confirmation it is based on availability and will not be confirmed prior to the passengers  arrival and may vary from the category that has been booked.   This is not to say the possibiliy for confirmation is not there, however you must be aware that one may not be received.  Please note that Riu Properties do not provide confirmations." What all of this means is that the tour company has told the hotel I need a wheelchair room. It is not confirmed. If I get there and there is no wheelchair room, "tough luck, buddy."

Then we have the "transfer" to and from the hotel. Again, if you are in a wheelchair, you are on your own. "The type of vehicle that will be used in destination to transfer you from the airport-hotel-airport is subject to change at any time.  More often than not, the vehicle used is a coach bus with a  narrow aisle and steep stairs.  If you are unable to manage onto this vehicle, please let us know.  You may wish to consider a separate transfer.  This is an additional cost to the passenger and must be arranged prior to departure.  If a separate transfer (when required) is not arranged in advance and the passenger is unable to manage onto the transfer provided it will be the responsibility of the passenger to arrange transportation in destination.  An adapted vehicle may not be available unless prior arrangements have been made."

When I asked the tour company about the transfer and the fact that I most likely would have to arrange my own, I was told the transfer was included in my package. If I did not want to use the bus, I would have to pay for my own transfer. I pointed out that I would love to use the bus if it was accessible. I was told, once again, that the transfer is a part of the package, and if I can't use the bus...

So really, the only thing the lengthy Special Services Request For did was to warn them that I am in a wheelchair, especially for the flight. Other than that, I might as well have not bothered.

On the other hand, there is always the possibility that things will work out fine. The flight will be okay, if a bit cramped. I know this ahead of time. It is entirely possible that the hotel will have a perfect room for us. While I am fairly certain the bus will not carry me, it is possible it might. So all I have to do is jump in and hope for the best.

When you travel in a wheelchair, these kinds of additional costs and impediments are part of the deal. I could just stay at home where I am safe, but where's the fun in that? Adventure is adventure. I am certain that Anne and I will work all of it through. It will simply take patience, and "mas tequila".

Road Trip Video

It's Monday, and that means video blog. Today, however, I want to do something different. This video is not one of mine. My friend David put this video together to cover our three week road trip in February. He's put dozens, if not hundreds, of hours into putting together an entertaining, quick moving visual display of pictures and GoPro camera footage.

This is not a short video. How could it be, after three weeks on the road together? It's almost an hour long, so pick a time to watch it, come back with your favourite beverage and some snacks, and set aside some time. An hour is not really all that long; it's about the same as your local evening news, only this hour is probably more interesting than the evening news these days. I promise, not a political word in the whole thing.

Perhaps my favourite part is when David gets a day off from me and goes to the St. Louis City Museum. You can hear, and see, the glee in his face and voice with the many, varied, interactive exhibits. What's even better is that he is doing this without having to worry about me. I stayed at the hotel for the day, resting, doing laundry, losing one of his socks. I needed a rest; he got a terrific break.

If you pay attention, you can see where I had a mouthful of cookie and managed, at that very instant, to spot the "Main Gate" for Los Alamos. The exact replica of this iconic, original Main Gate is in a small park beside the road. I saw it, David didn't. I needed to get his attention. I did.

Of course there is Car Henge and The Cadillac Range, along with a bizarre collection of odd bits and piece of roadside America. There are the traditional things, like The Alamo, and non-traditional things like the Choo Choo Patio in Fredricksburg, TX. There is the ridiculous, such as the welded metal buzzards tearing apart a car, to the sublime, like the world's largest Jackalope.

It's a bit of everything. It's a lot of our road trip. Take some time. Enjoy the show.

Kate's Helping Me Today

I'm shaking, almost vibrating. It's not ALS, not directly. It's anger. I burst out in anger at a chair which had not been put back into place last night. I had a moment of internal rage as Kate easily moved the table and put the chair back to where it belongs. And now that moment of internal, plus a bit of external, anger has left me shaking. ALS is helping a bit too.

It is so frustrating for me these days. I see people doing things I once did easily but now cannot do at all, or can only do slowly, with great effort. Silly things, like filling the Keureg pod holder or moving a chair. Challenging things which I could once do with ease, like rotating my mattress or cleaning the spare bedroom; these things are impossibilities now.

We, my friends and I, had a party here last night. They, especially Anne, cleaned up afterwards, putting most things away, some where they belonged, some not. Anne is really good about this; if she doesn't know where to put it, she asks. Micheal, my Home Care Aide, came in this morning at 10:00 AM. I told him I wasn't getting up. He laughed, knowing full well I was suffering the effects of the night before.

He asked what he could do to help me. I asked him to tidy some more in the living room and kitchen. I plummeted into sleep once again. While I was asleep, he emptied my urine jugs, filled my water jug, and went to work on the living room and kitchen. When I finally got up, hours after Micheal had gone, I saw he had left some things on the counter. Not knowing where they went, he did what he knows I want done; he left them for me to put away. This is a good thing.

Now that Kate is here, she will help me with the last of things. In this I am blessed; rarely am I truly left alone to a task without help. She will help me turn my mattress. She will help me put the Power Wheelchair back where it belongs. She will help me with a few things in the kitchen. Mostly, most importantly, she will be here, understanding what it is for me to deal with my life now, helping me make the most of things.

Late Start

Michael, my Home Care Aide, as over an hour late in arriving this morning. He called me, after an hour had passed, to tell me he was behind schedule and on his way. I was laying in bed, deciding if I should get myself up or wait. I waited. The extra rest is not a bad thing for me. I have nothing happening until dinnertime when a bunch of friends are coming over for a games night.

When he finally arrived, he explained to me that the agency had stuffed an extra person into his schedule this morning. That person needed extra care. Michael would not leave someone without proper care; he's like that. So he made the decision that I would have to wait. He also knew that I like to sleep in some days, that sleep is good for me. So he wasn't too worried.

In fact I agree with his decision. I have no need to be impatient, beyond perhaps an urgent call of nature. I do wish that he had called me sooner, but once he is in with a client he does not like to take or make phone calls. I was waiting. I could wait. Patience is all it takes. So I dozed. Eventually he arrived.

The funny thing is that when he arrived he was all hustle and bustle, just the opposite of his normal, slow style. He was very anxious about being late. I suspect he was concerned that I would be upset. For the first time ever, I asked him to slow down, to take it easy. I assured that I understood not only his situation, but his decision as well.

Now, if I could only get Micheal to make me some food. He hates preparing food. He likes to say that where he comes from, people prepare food for him, not the other way round. It's not that he won't do it. He just doesn't like doing it, and given the choice will gladly escape the task. Today he peeled me an orange and pointed out all the other fruit in my fridge. Yesterday he made me a fried egg on toast. The day before, I had cereal.

It's not like I am starving. Yesterday's breakfast kept me going all day. It was enough to make me not want to bother making any sort of dinner. So I had the Greek Salad which Elizabeth and I made on Wednesday, along with some garlic sausage. If I had pushed him today, he might have made another fried egg sandwich for me. I don't need to. I've got an orange, and that is more than he had for breakfast today, thanks to the pressures of his own early start and extra client. He needs a break.