Life is made up of moments. Here are a couple...
I was making my way in from the underground parking in the apartment we have rented for a couple of months. I was using my cane and struggling a bit as the doors are heavy and cumbersome now. Quick as a flash, a little old lady (and I do mean little and I do mean old) bounded up and said "Here, let me get that for you!" :) I kept a straight face and was thankful but as I carried on the reality of the whole thing hit me. Very weird! Life has sure changed!!!
As I tell Joan though...it won't be too long and these will be the "good old days". Agghhh!
Joan and I made our second excursion down to the library through Portage Place with the wheelchair. She is getting pretty expert at this. I never screamed once this time! LOL
We have a system worked out where I hit the wheel chair door opening buttons with my cane then she wheels us through. I think we are getting faster.
Everyone needs to be in a wheel chair for a day. You sure get a different perspective on what a lot of people have to deal with day by day. Humanity seems to fall into two main categories. Jerks and nice folks. This trip we had the nice ones. The library people actually looked and talked to me as a person. The waitress where we stopped for a beer and a snack did also. I think my faith in the general humanity of people may be on the rise again.
I have been very touched by the number of old friends from across the country who have tracked me down since this started. Many I have not seen for 20 or even 30 years! Yikes!!!
Thank you all so much!
Saturday, May 17, 2008
Monday, May 12, 2008
Joan Here...The Mall Crawl
Well, we finally did it! Put Rick into the wheelchair for our first official trip to the mall. Talk about an eye opener!!! Two of our little grand daughters went along for the trip.
Try getting the wheel chair maneuvered in the elevator plus two kids plus do all that before the door closes...All I can say is poor Rick...he spent his time staring straight ahead at the elevator door with his back to us all. There wasn't enough time or room to turn the chair around before we were ready to get out.
As I pushed the wheelchair down the sidewalk I soon discovered some of the obstacles for a chair that we don't notice when just walking. My first discovery was the crack and unevenness of the sidewalk where I hit it straight on...and yeah...Rick almost went flying out again as I came to a dead stop hitting the raised part of the crack!!! After that I had to keep looking ahead for them. Next was looking for a sloping end of the sidewalk so I could change sidewalks.
When crossing the cross walk all Rick said he could see were the headlights of the cars staring straight at him. Just a bit scary I would think. Once we got to the mall, the gkids wanted to ride the escalator of course. So, I ended up parking grandpa at the end of the stairs and I rode up and down with the girls while he watched the fun.
The mall has three stories so I soon discovered the need for knowing where the elevators were located. Things we just don't usually even think about. At least I never did before. As I pushed Rick around in the chair I began feeling sadder and sadder and more tired as we went. I emotionally tanked as I realized that this is our normal now when we go to the mall not just a trial run here. Rick does not have the strength to walk from our apartment and through the mall any longer even with the help of his cane. Both he and I experienced a real eye opening time again.
The little girls were oblivious to our sadness and emotional time as they ran to and fro enjoying all the wonderful things the mall had to offer. One of the girls was pushing Rick. They squealed with glee as they spotted the custom jewellery shop and asked it they could go and check it out. We agreed wholeheartedly! In a split second off then went running into the shop. Meanwhile leaving poor grandpa sitting in his chair in the middle of the mall outside of the shop abandoned. Rick and I started laughing as they were so excited to shop that they forgot about him. I kept teasing him that it was a good thing I was there to pick up the slack! lol
Another revelation was trying to maneuver the chair in the food court full of people. Then Rick sitting at chair height trying to see the menu etc. He said he felt like a little kid...always looking upwards. And having to reach up to counter height to pay the cashier.
I thought I had our time all figured out and even had left extra time to get back to the apartment for my next appointment. As hard as I tried to move things along I kept meeting new obstacles in the process that I had not even thought about. The little girls were very helpful and trying desperately to help us along.
We ended up coming back with me pushing the chair as fast as I could manage and Rick loaded up like a pack mule with "stuff" on his lap, "stuff" hanging from the handles of the chair. It really looked quite the site that is for sure.
I can say I truly learned things the hard way on Saturday's excursion. By the time I got to my hair appointment, a good half hour late, I sat in the chair and basically had an emotional outburst. My poor hairdresser! I was emotionally and physically exhausted at this point.
All of us did survive and I know this is only one small little bitty episode in many to come. Rick keeps telling me soon this will all be the "good old days"!
Try getting the wheel chair maneuvered in the elevator plus two kids plus do all that before the door closes...All I can say is poor Rick...he spent his time staring straight ahead at the elevator door with his back to us all. There wasn't enough time or room to turn the chair around before we were ready to get out.
As I pushed the wheelchair down the sidewalk I soon discovered some of the obstacles for a chair that we don't notice when just walking. My first discovery was the crack and unevenness of the sidewalk where I hit it straight on...and yeah...Rick almost went flying out again as I came to a dead stop hitting the raised part of the crack!!! After that I had to keep looking ahead for them. Next was looking for a sloping end of the sidewalk so I could change sidewalks.
When crossing the cross walk all Rick said he could see were the headlights of the cars staring straight at him. Just a bit scary I would think. Once we got to the mall, the gkids wanted to ride the escalator of course. So, I ended up parking grandpa at the end of the stairs and I rode up and down with the girls while he watched the fun.
The mall has three stories so I soon discovered the need for knowing where the elevators were located. Things we just don't usually even think about. At least I never did before. As I pushed Rick around in the chair I began feeling sadder and sadder and more tired as we went. I emotionally tanked as I realized that this is our normal now when we go to the mall not just a trial run here. Rick does not have the strength to walk from our apartment and through the mall any longer even with the help of his cane. Both he and I experienced a real eye opening time again.
The little girls were oblivious to our sadness and emotional time as they ran to and fro enjoying all the wonderful things the mall had to offer. One of the girls was pushing Rick. They squealed with glee as they spotted the custom jewellery shop and asked it they could go and check it out. We agreed wholeheartedly! In a split second off then went running into the shop. Meanwhile leaving poor grandpa sitting in his chair in the middle of the mall outside of the shop abandoned. Rick and I started laughing as they were so excited to shop that they forgot about him. I kept teasing him that it was a good thing I was there to pick up the slack! lol
Another revelation was trying to maneuver the chair in the food court full of people. Then Rick sitting at chair height trying to see the menu etc. He said he felt like a little kid...always looking upwards. And having to reach up to counter height to pay the cashier.
I thought I had our time all figured out and even had left extra time to get back to the apartment for my next appointment. As hard as I tried to move things along I kept meeting new obstacles in the process that I had not even thought about. The little girls were very helpful and trying desperately to help us along.
We ended up coming back with me pushing the chair as fast as I could manage and Rick loaded up like a pack mule with "stuff" on his lap, "stuff" hanging from the handles of the chair. It really looked quite the site that is for sure.
I can say I truly learned things the hard way on Saturday's excursion. By the time I got to my hair appointment, a good half hour late, I sat in the chair and basically had an emotional outburst. My poor hairdresser! I was emotionally and physically exhausted at this point.
All of us did survive and I know this is only one small little bitty episode in many to come. Rick keeps telling me soon this will all be the "good old days"!
Friday, May 9, 2008
Rick and Joan here...Check this out!!!
We just saw that our little grand daughter has set up her own ALS website for the May 23rd ALS Whitemouth Walk. All we could do is cry and cry when we read what she has written on her site. You can click on her site on the right hand side under Team Rick, Tatiana Kasowan or click on this link: http://www.als.ca/events/mysite.aspx?fid=2058
Let's put Tia over the top of her goal!
Let's put Tia over the top of her goal!
Tuesday, May 6, 2008
Joan here...Another first
We have had a very busy weekend. Getting settled in our apartment and all. The familiarity of the building has added an element of that "being home" feeling.
We attended our FIRST open house for the Brummitt-Feasby ALS House on Sunday. It is located right here in Winnipeg. It is a home that was donated to the ALS Society by two daughters who's step mother passed away from the disease. The home was extensively remodeled to meet the specific needs of the ALS person. The home has 4 fully serviced bedrooms and full time care staff to accommodate anyone staying there with the disease. They continue to operate this house through the fundraising efforts of everyone. You can check out this home at http://www.alsmb.ca/brummitt_feasby.aspx .
Our MB representative of the ALS Society, Diana Rasmussen, received national recognition and an award for her tireless work and dedication to the ALS Society. It is quite the achievement as she was recommended for the award from various other provinces as well. Diana was also the lady who first came to our home right after the diagnosis in Feb. to tell us what was all available to Rick and I. She gave us her phone numbers... including her cell if we should have any questions about anything. Just knowing that she was available to us at that time made us not feel so alone. It is because of people like Diana that people like us don't feel so lost at first.
As we toured this home, as beautiful as it was, our hearts sank within. Looking at all the power lifts, the beds, the chairs etc it was all a reminder to Rick and I what lies ahead. We almost felt like just tip toeing through the place as we didn't want to get to attached or planted there right now. We dreaded even going through the front doors initially. We were greeted with open arms. Two of my sisters and their husbands came with us for moral support! :) We were all treated graciously and welcomed into this new group of friends.
We met people with various stages of ALS, people who had recently lost loved ones, and people who are caregivers, and people who were there to support the caregivers. ALS does not just change the lives of the people who have it but of their families, friends, neighbours and on and on the list goes. We also heard from a gentleman who recently lost his wife to ALS. You could say I spent most of the time crying through it all. Every once in a while when I allow myself to go to that place in my thinking it just tears my heart. I can't even imagine what these people are going through right now. Their loss....their pain...their grief...their emotions are so tangible when you meet them.
My brother in law, who is a terrific Elvis tribute artist by the way, honoured us all by his impromptu singing for a lady with ALS. Needless to say he was a big hit!
Rick and I have enlargened our circle of friends as we walk this walk. We are meeting people who know about us from Whitemouth School who are coming up to us in various places here in Winnipeg to talk to us. We are beginning to feel like celebrities. :) Over two hundred kids and teachers know us but we may only know two or three of them right now! We look forward to getting to know all of them.
A Whitemouth update....cupboards are in, painting and flooring almost done! It looks great!!!
We attended our FIRST open house for the Brummitt-Feasby ALS House on Sunday. It is located right here in Winnipeg. It is a home that was donated to the ALS Society by two daughters who's step mother passed away from the disease. The home was extensively remodeled to meet the specific needs of the ALS person. The home has 4 fully serviced bedrooms and full time care staff to accommodate anyone staying there with the disease. They continue to operate this house through the fundraising efforts of everyone. You can check out this home at http://www.alsmb.ca/brummitt_feasby.aspx .
Our MB representative of the ALS Society, Diana Rasmussen, received national recognition and an award for her tireless work and dedication to the ALS Society. It is quite the achievement as she was recommended for the award from various other provinces as well. Diana was also the lady who first came to our home right after the diagnosis in Feb. to tell us what was all available to Rick and I. She gave us her phone numbers... including her cell if we should have any questions about anything. Just knowing that she was available to us at that time made us not feel so alone. It is because of people like Diana that people like us don't feel so lost at first.
As we toured this home, as beautiful as it was, our hearts sank within. Looking at all the power lifts, the beds, the chairs etc it was all a reminder to Rick and I what lies ahead. We almost felt like just tip toeing through the place as we didn't want to get to attached or planted there right now. We dreaded even going through the front doors initially. We were greeted with open arms. Two of my sisters and their husbands came with us for moral support! :) We were all treated graciously and welcomed into this new group of friends.
We met people with various stages of ALS, people who had recently lost loved ones, and people who are caregivers, and people who were there to support the caregivers. ALS does not just change the lives of the people who have it but of their families, friends, neighbours and on and on the list goes. We also heard from a gentleman who recently lost his wife to ALS. You could say I spent most of the time crying through it all. Every once in a while when I allow myself to go to that place in my thinking it just tears my heart. I can't even imagine what these people are going through right now. Their loss....their pain...their grief...their emotions are so tangible when you meet them.
My brother in law, who is a terrific Elvis tribute artist by the way, honoured us all by his impromptu singing for a lady with ALS. Needless to say he was a big hit!
Rick and I have enlargened our circle of friends as we walk this walk. We are meeting people who know about us from Whitemouth School who are coming up to us in various places here in Winnipeg to talk to us. We are beginning to feel like celebrities. :) Over two hundred kids and teachers know us but we may only know two or three of them right now! We look forward to getting to know all of them.
A Whitemouth update....cupboards are in, painting and flooring almost done! It looks great!!!
Friday, May 2, 2008
Rick & Joan here..."Kids say the darnest things!"
We did it! Had a great time with all the students and teachers at the Whitemouth School this morning at assembly. Today was the day that the kids rec'd their pledge sheets for the ALS Walk on May 23rd. They asked us to give a brief talk on ALS. It went great!
The kids were attentive and respectful. Many students came up to us afterwards expressing concern, care and thanks for us coming and talking to them. Same with the teachers.
It was a bit intimidating as the school covers grades one to twelve. So we were worried about being able to keep it pertinent to all.
Afterwards, we were invited to tour through some of the classes and hand out more information and take more questions. Got to share this one...in the main session Rick made a point of making sure the kids knew ALS is not a communicable disease. At least he thought he did! lol... Later in an individual class a young student around the age of 8 asked him the following...
"Is ALS a sexually transmitted disease?" I thought I was going to burst out laughing and was looking forward to how Rick was going to answer this one. But, to make it worse, remember Rick suffers from what he calls "farmer's ear". He is pretty deaf on one side. So he asked the student to please repeat the question. Which he did louder and clearer! As the teacher died a thousand deaths!!! Rick proceeded to answer the students question. Rick never missed a beat but boy I could hardly wait till we got out of ear shot. We collapsed in laughter!!! Rick said he could have turned that kid into a priest if he had answered differently. LOL
Anyhow, we did have a wonderful time and look forward to being at the school again. We feel that something very special happened there and that we may have an opportunity to really impact some young lives. Not to mention have a few laughs!!!
The kids were attentive and respectful. Many students came up to us afterwards expressing concern, care and thanks for us coming and talking to them. Same with the teachers.
It was a bit intimidating as the school covers grades one to twelve. So we were worried about being able to keep it pertinent to all.
Afterwards, we were invited to tour through some of the classes and hand out more information and take more questions. Got to share this one...in the main session Rick made a point of making sure the kids knew ALS is not a communicable disease. At least he thought he did! lol... Later in an individual class a young student around the age of 8 asked him the following...
"Is ALS a sexually transmitted disease?" I thought I was going to burst out laughing and was looking forward to how Rick was going to answer this one. But, to make it worse, remember Rick suffers from what he calls "farmer's ear". He is pretty deaf on one side. So he asked the student to please repeat the question. Which he did louder and clearer! As the teacher died a thousand deaths!!! Rick proceeded to answer the students question. Rick never missed a beat but boy I could hardly wait till we got out of ear shot. We collapsed in laughter!!! Rick said he could have turned that kid into a priest if he had answered differently. LOL
Anyhow, we did have a wonderful time and look forward to being at the school again. We feel that something very special happened there and that we may have an opportunity to really impact some young lives. Not to mention have a few laughs!!!
Thursday, May 1, 2008
Joan here...Whew! Too much emotional stuff!!!
As I write this I am sitting in our new apartment. Most of our things are unpacked. We don't have a computer desk yet set up so I am sitting on my knees typing this off of an end table. The sun is shinning and it looks like it will be a beautiful day and it seems like we may have a bit of order to our life for the moment.
The last few days have been an incredible time of emotional highs and lows. We decided to move into the apartment the night before last. They say you get to know who you really are when the pressure is on. Well, I found out pretty quick that I can be not a very nice person when the heat is on!!! Rick and I had just left our house after a bunch of the kids and friends took the rest of the "stuff" away. It was late at night and we had a car load of things to get to the apartment. Rick is at a place where he can't lift anything with weight and I am not a whole lot better.
Our car was parked in the underground parking which meant we had to cross that and head for the elevators with the boxes and bins. One box at a time would have taken us hours so all that we could find to help us was a grocery cart. We filled the grocery cart full of the "stuff" and I started to push it. Poor Rick by this time was so exhausted himself. He could barely walk even with his cane. I looked at him barely walking and my cart full of "stuff" and that is when all the anger....frustration...and whatever you could call it hit! I felt like I was a bag lady with all this"stuff" in the cart and officially no home of our own. Talk about feeling sorry for myself. We were both so exhausted!
We got into the apartment and I slammed the box on a shelf in the storage closet and announced "I have had it and started crying!" So between the anger and the tears we ended up talking almost all night. Just what Rick needed no sleep!
I wish I could say that everything was better in the morning but it wasn't. We still had to head over to the house and pick up our telephone and cable box and return them. We knew this was going to be the last walk through our home with no one around. Our neighbour lady came over to say an official good bye as neighbours. We have become more than neighbours we have become friends! Not having her near is going to be hard!
We began the dreaded walk... we walked through our home room by room. Seeing all the rooms empty seemed so strange. We laughed and cried as we walked through the house and did all the remembering. We stood holding hands at the threshold of the door and prayed for the couple who would be moving in here. We are so happy it is them. Rick and I prayed for years and years of a house full of love, happiness and peace for them as they live in this place. We know how much we were blessed to have had this home together!
Next, was the yard....our hobby...our quiet place...our time of being together...Rick said he had a moment of epiphany one day after working for hours in the back yard with me. He realized he was "the gardener and that I was the garden decorator". He said it made his life so much easier to understand me after that! I was always getting him to move things around. He says big heavy things! when he was just trying to plant. He says we make quite a team.
As we walked around the yard, being true to myself, I began to notice all the things that needed yet to be done. As I rattled off all of the things Rick stopped and looked at me and said "Joan lets just stop and look at all the things that have been done and enjoy these moments!" Felt like a pail of cold water hit my face! I needed the reality check of taking a breath, stop running for a moment, and just breath in this moment forever into our hearts!
We very very slowly walked through the rest of the yard, looked into the now almost empty shed, the second shed that we had made up into a play house for the grand kids, the herb garden, up the side of the house, and closed the now rickety gate, and finally slowly got into the car. Rick slowly backed out of the driveway as we both waved good bye.
I have always heard of the saying "home is where the heart is". Rick and my heart is always in being together. Our home is now officially wherever we are together!
The last few days have been an incredible time of emotional highs and lows. We decided to move into the apartment the night before last. They say you get to know who you really are when the pressure is on. Well, I found out pretty quick that I can be not a very nice person when the heat is on!!! Rick and I had just left our house after a bunch of the kids and friends took the rest of the "stuff" away. It was late at night and we had a car load of things to get to the apartment. Rick is at a place where he can't lift anything with weight and I am not a whole lot better.
Our car was parked in the underground parking which meant we had to cross that and head for the elevators with the boxes and bins. One box at a time would have taken us hours so all that we could find to help us was a grocery cart. We filled the grocery cart full of the "stuff" and I started to push it. Poor Rick by this time was so exhausted himself. He could barely walk even with his cane. I looked at him barely walking and my cart full of "stuff" and that is when all the anger....frustration...and whatever you could call it hit! I felt like I was a bag lady with all this"stuff" in the cart and officially no home of our own. Talk about feeling sorry for myself. We were both so exhausted!
We got into the apartment and I slammed the box on a shelf in the storage closet and announced "I have had it and started crying!" So between the anger and the tears we ended up talking almost all night. Just what Rick needed no sleep!
I wish I could say that everything was better in the morning but it wasn't. We still had to head over to the house and pick up our telephone and cable box and return them. We knew this was going to be the last walk through our home with no one around. Our neighbour lady came over to say an official good bye as neighbours. We have become more than neighbours we have become friends! Not having her near is going to be hard!
We began the dreaded walk... we walked through our home room by room. Seeing all the rooms empty seemed so strange. We laughed and cried as we walked through the house and did all the remembering. We stood holding hands at the threshold of the door and prayed for the couple who would be moving in here. We are so happy it is them. Rick and I prayed for years and years of a house full of love, happiness and peace for them as they live in this place. We know how much we were blessed to have had this home together!
Next, was the yard....our hobby...our quiet place...our time of being together...Rick said he had a moment of epiphany one day after working for hours in the back yard with me. He realized he was "the gardener and that I was the garden decorator". He said it made his life so much easier to understand me after that! I was always getting him to move things around. He says big heavy things! when he was just trying to plant. He says we make quite a team.
As we walked around the yard, being true to myself, I began to notice all the things that needed yet to be done. As I rattled off all of the things Rick stopped and looked at me and said "Joan lets just stop and look at all the things that have been done and enjoy these moments!" Felt like a pail of cold water hit my face! I needed the reality check of taking a breath, stop running for a moment, and just breath in this moment forever into our hearts!
We very very slowly walked through the rest of the yard, looked into the now almost empty shed, the second shed that we had made up into a play house for the grand kids, the herb garden, up the side of the house, and closed the now rickety gate, and finally slowly got into the car. Rick slowly backed out of the driveway as we both waved good bye.
I have always heard of the saying "home is where the heart is". Rick and my heart is always in being together. Our home is now officially wherever we are together!
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