We are so excited to announce that our daughter Jenn and husband Clif are having our 10th Grandchild!!! They are expecting for June!!! hmmmm my birthday, our grand daugther Georgia's birthday, and Clif's dad's birthday on the same day in the middle of the month !!!!!
I never would have thought Jenn of all people would be having 3 children. Growing up she was the baby in the family, the only girl...wow...you just never know in life!
Rick and I are so excited and thrilled...I just wish as a mom that I could be there more for her right now and in the upcoming months.
Today, Rick and I discussed what is happening with him again. Every day is a new day with ALS
He has agreed now that I will shampoo his hair, put on his socks, and towel dry him after a shower. He has realized that this would help him conserve his energy... never mind the side benefits...lol!!!
Thursday, October 23, 2008
Wednesday, October 22, 2008
Rick here...tombstones & cemeteries
Well...Joan and I got our tombstone - or to be politically correct- 'memorial stone' done! We had actually talked about it for a few years and planned on getting it done but never got to it - and that was before we knew I was ill. I am glad we had talked about it back then - makes it a bit easier now. I am desperately trying to get through all of these things so that Joan will not have to be doing it on her own. There will be more than enough for her to deal with later.
I am really pleased with the stone ...I believe it really catches the essence of who we are. We thought about it a lot! Joan and I got a plot at the Sperling Cemetery from Dad 10 years ago...will be in the same family plot as a lot of Fewster's - my Great Grandparents, Grandparents and Dad & Mom (who hopefully they won't be there for a long time yet! )
A big thank you to the folks at Carman Granite for doing it so quickly. They worked a miracle and got it in before winter....told them I really wanted to see it from the top side if I could :)
When we went out to check it out for the first time we wandered around the cemetery for a bit...as we often do..( we go out there for a cold beer with Grandpa and a bunch of the others fairly often)...man...I know so many folks out there- a lot of old friends!
Kind of funny...growing up in a small town..many of my good friends, hunting & fishing partners and people who ' watched out for you as a teenager' , gave you hell if you screwed up, or covered your ass if you got caught doing something stupid, or pulled you out of a ditch and didn't tell your Dad :), etc. were 60 and 70 years old...age and status didn't matter...quality of character did..Growing up in Sperling was a real gift!
Got quite a charge out of seeing that one of my best friends growing up - Kent Cretton - has a stone set up as well...hope he doesn't need it for a loooonggggg time tho! Kind of funny...his is diagonally right across the cemetery from mine...we've got the corners covered Kent - kind of like shooting pool :) You were always good at corner shots! We used to shoot pool by the hour - halfers- a pool game was 25 cents - lose and it costs you 15 cents - win and its 10--if we had 25 cents each we could squeeze in 4 games...then if no one wanted the table we could usually play for free once we were out of money- thanks to some of the old guys who covered us. We walked many a mile collecting beer bottles to pay for our pool playing. I knew Kent's grandparents really well- used to go there for smoked tulibee for lunch with Kent as a kid...and Gib & Jean of course...Xmas wasn't Xmas if they did not stop in for a drink ...Kent was the inspiration and moving force behind 'Team Sperling' at the ALS walk in Whitemouth this past spring...thanks again...we still have a ' crop inspection' tour to do before its too cold! He and I used to ride out to the cemetery on our bikes and sit under the big pine tree by the tool shed....far as I know the pine was planted by Doc Martin ( another story) ....hmmmm...as I remember Kent & I were probably sneaking a pilfered smoke under there ....LOL. Fewster's and Cretton's have a lot of history together (as do all long time Sperling folks of course). I remember when Dad and Gib found poor Mrs Ribordy and Maurice out at their farm when she passed away...another story...and of course there were the bonspiels, hockey( the famous 'snakepit'), the pub, crop inspecting, ...hmmmm...tons of stories!!!!!! Corner Gas could easily have been written about Sperling but it would have been a LOT funnier - and much more touching and real!!!
Anyhow...more cemetery stuff later :)
I am really pleased with the stone ...I believe it really catches the essence of who we are. We thought about it a lot! Joan and I got a plot at the Sperling Cemetery from Dad 10 years ago...will be in the same family plot as a lot of Fewster's - my Great Grandparents, Grandparents and Dad & Mom (who hopefully they won't be there for a long time yet! )
A big thank you to the folks at Carman Granite for doing it so quickly. They worked a miracle and got it in before winter....told them I really wanted to see it from the top side if I could :)
When we went out to check it out for the first time we wandered around the cemetery for a bit...as we often do..( we go out there for a cold beer with Grandpa and a bunch of the others fairly often)...man...I know so many folks out there- a lot of old friends!
Kind of funny...growing up in a small town..many of my good friends, hunting & fishing partners and people who ' watched out for you as a teenager' , gave you hell if you screwed up, or covered your ass if you got caught doing something stupid, or pulled you out of a ditch and didn't tell your Dad :), etc. were 60 and 70 years old...age and status didn't matter...quality of character did..Growing up in Sperling was a real gift!
Got quite a charge out of seeing that one of my best friends growing up - Kent Cretton - has a stone set up as well...hope he doesn't need it for a loooonggggg time tho! Kind of funny...his is diagonally right across the cemetery from mine...we've got the corners covered Kent - kind of like shooting pool :) You were always good at corner shots! We used to shoot pool by the hour - halfers- a pool game was 25 cents - lose and it costs you 15 cents - win and its 10--if we had 25 cents each we could squeeze in 4 games...then if no one wanted the table we could usually play for free once we were out of money- thanks to some of the old guys who covered us. We walked many a mile collecting beer bottles to pay for our pool playing. I knew Kent's grandparents really well- used to go there for smoked tulibee for lunch with Kent as a kid...and Gib & Jean of course...Xmas wasn't Xmas if they did not stop in for a drink ...Kent was the inspiration and moving force behind 'Team Sperling' at the ALS walk in Whitemouth this past spring...thanks again...we still have a ' crop inspection' tour to do before its too cold! He and I used to ride out to the cemetery on our bikes and sit under the big pine tree by the tool shed....far as I know the pine was planted by Doc Martin ( another story) ....hmmmm...as I remember Kent & I were probably sneaking a pilfered smoke under there ....LOL. Fewster's and Cretton's have a lot of history together (as do all long time Sperling folks of course). I remember when Dad and Gib found poor Mrs Ribordy and Maurice out at their farm when she passed away...another story...and of course there were the bonspiels, hockey( the famous 'snakepit'), the pub, crop inspecting, ...hmmmm...tons of stories!!!!!! Corner Gas could easily have been written about Sperling but it would have been a LOT funnier - and much more touching and real!!!
Anyhow...more cemetery stuff later :)
Rick here...Wow....what a woman!
Well...we are here and getting settled...thanks to all for your help! We couldn't have done it without you!!!
My heroic wife has lifted, toted, sorted and hauled stuff to the point of total exhaustion! It breaks my heart to see her have to do all of this by herself! She started the day yesterday by hauling 3 - 50 lb bags of potatoes out of the truck and across the garage and then on to a full day of lifting and sorting boxes. That was always the stuff I did...now I can't carry 5 lbs up a 6inch stair....it is VERY hard on both of us....both physically and emotionally. She has to carry the weight of doing all the physical stuff- and I mean ALL of it...., deal with my daily deterioration and what we know lies ahead very soon and all the horrible pain that brings, help me with the most basic personal tasks, deal with having moved twice in a short time, start to adjust to a new community, and on and on! Those of you that know her understand that Joan is a vivacious woman of indomitable spirit, incredible energy, a tireless worker, fearless determination, generous beyond belief, and , oh yes...did I mention she has a touch of ' Burnell' stubbornness :)
I am so afraid for her though ...she pushes herself so very hard! I feel so very helpless when I watch what she is going through. I wish with all of my heart that I could somehow relieve some the of pain and anguish that all of this brings her.
When we sort through our stuff it is all memories - when Joan and I started out we started with nothing in the way of possessions...bought our first air bed and 2 cups and plates at Army Surplus across from the apartment we had 12 years ago:) Joan has a way of making the very best out of whatever we have.. whether much or little...it is a gift that she has!
As we sort the boxes every single thing...even the 'junk stuff' has memories. Things the kids and grand kids played with, gifts, mementos, etc. To us all of it is important because it is not just 'stuff'...it is memories!
We make 3 piles...the first one to give away...the second one for now ...and the third one for later when I am gone and Joan will have to set up on her own. We cry a lot when we pack the third one:( She often looks up at me, cries and says...you won't be with me when I unpack this..and then I cry too. This disease is so hard! Joan gave up so much when we got out of the house. We are so thankful for the kids opening their home to us cause otherwise I would soon be in a care home....but the horrible downside is that when I go then after a bit Joan will have to try and restart a life. Quite different than carrying on in the same home, neighborhood,etc as so many of our friends have sadly had to do. She willingly makes any sacrifice she can to make things better for me, and to insure that we are able to be together right to the end. She is the most selfless person I have ever met!
We are obviously not doing this cause we want to ....it would be different if we were 75 and downsizing...we wanted to have a home set up for fun with our grand kids ( 9 and still counting) , a place for family gatherings, etc.
This disease was not in the plan.
I love her with all of my heart!!! I think that this disease is harder on the spouse than it is on the person with it! The stress is beyond belief! On top of everything else Joan has been suffering greatly through all of this with a painful case of shingles...no doubt caused by the stress. Please pray for her!
Hopefully now I will be able to be more regular blogging as we are not running quite so hard.
I'll try and do a bit of catch up stuff too.
My heroic wife has lifted, toted, sorted and hauled stuff to the point of total exhaustion! It breaks my heart to see her have to do all of this by herself! She started the day yesterday by hauling 3 - 50 lb bags of potatoes out of the truck and across the garage and then on to a full day of lifting and sorting boxes. That was always the stuff I did...now I can't carry 5 lbs up a 6inch stair....it is VERY hard on both of us....both physically and emotionally. She has to carry the weight of doing all the physical stuff- and I mean ALL of it...., deal with my daily deterioration and what we know lies ahead very soon and all the horrible pain that brings, help me with the most basic personal tasks, deal with having moved twice in a short time, start to adjust to a new community, and on and on! Those of you that know her understand that Joan is a vivacious woman of indomitable spirit, incredible energy, a tireless worker, fearless determination, generous beyond belief, and , oh yes...did I mention she has a touch of ' Burnell' stubbornness :)
I am so afraid for her though ...she pushes herself so very hard! I feel so very helpless when I watch what she is going through. I wish with all of my heart that I could somehow relieve some the of pain and anguish that all of this brings her.
When we sort through our stuff it is all memories - when Joan and I started out we started with nothing in the way of possessions...bought our first air bed and 2 cups and plates at Army Surplus across from the apartment we had 12 years ago:) Joan has a way of making the very best out of whatever we have.. whether much or little...it is a gift that she has!
As we sort the boxes every single thing...even the 'junk stuff' has memories. Things the kids and grand kids played with, gifts, mementos, etc. To us all of it is important because it is not just 'stuff'...it is memories!
We make 3 piles...the first one to give away...the second one for now ...and the third one for later when I am gone and Joan will have to set up on her own. We cry a lot when we pack the third one:( She often looks up at me, cries and says...you won't be with me when I unpack this..and then I cry too. This disease is so hard! Joan gave up so much when we got out of the house. We are so thankful for the kids opening their home to us cause otherwise I would soon be in a care home....but the horrible downside is that when I go then after a bit Joan will have to try and restart a life. Quite different than carrying on in the same home, neighborhood,etc as so many of our friends have sadly had to do. She willingly makes any sacrifice she can to make things better for me, and to insure that we are able to be together right to the end. She is the most selfless person I have ever met!
We are obviously not doing this cause we want to ....it would be different if we were 75 and downsizing...we wanted to have a home set up for fun with our grand kids ( 9 and still counting) , a place for family gatherings, etc.
This disease was not in the plan.
I love her with all of my heart!!! I think that this disease is harder on the spouse than it is on the person with it! The stress is beyond belief! On top of everything else Joan has been suffering greatly through all of this with a painful case of shingles...no doubt caused by the stress. Please pray for her!
Hopefully now I will be able to be more regular blogging as we are not running quite so hard.
I'll try and do a bit of catch up stuff too.
Tuesday, October 21, 2008
Joan here....We're offically here!
Congratulations to Rick's mom who just turned 80 years old!
It is almost exactly a week since I last posted. Since that last post. My sisters, brother in laws and mom came and helped us move out of the apartment. It has been a long week of trying to move boxes around and trying to find a spot for "the stuff". I still have a mountain of boxes piled in the garage that have to be gone through. My body is so sore from lifting! I haven't lifted so much in my life before. It is so strange to have Rick with me but unable to help with anything. I have been busy with the move and also in taking care of my husband. He needs help to get things etc so by the time night rolls around I am pretty tired! It is so discouraging for him also. So we both have been adjusting! We have to keep reminding ourselves that we are on the same team and we are not the enemy here it is the disease!
I found myself so exhausted and at one point when I walked past the wheelchair I just kicked it! Of course Rick wasn't around when I did that! I was just so frustrated at times! I am thankful that we have such an aid of course to make a way for Rick to get around the suite but I don't like what it reminds me of.
I haven't had too much time to think of the actual move right now because of just being plain old tired!
Our friend Dave spent three days here with us getting some things done in the suite. We were so happy to see him again!
Rick is having a very hard time this past week not being able to do things to help with the move. I woke him up again this morning as he was having really bad dreams again. This time he was laying in a hospital bed and the bed was laying on quick sand and slowly sucking him in. We both agreed that we still are in denial and don't even want to think about what is happening. It is just too painful!
On the bright side of things...Rick took his scooter up to the grocery store yesterday with little Kate driving! He had all kinds of people waving and stopping to talk to them. People know who we are but we don't always know who they are yet. Small towns are so much different than city life. You can run but you can't hide! :)
It is almost exactly a week since I last posted. Since that last post. My sisters, brother in laws and mom came and helped us move out of the apartment. It has been a long week of trying to move boxes around and trying to find a spot for "the stuff". I still have a mountain of boxes piled in the garage that have to be gone through. My body is so sore from lifting! I haven't lifted so much in my life before. It is so strange to have Rick with me but unable to help with anything. I have been busy with the move and also in taking care of my husband. He needs help to get things etc so by the time night rolls around I am pretty tired! It is so discouraging for him also. So we both have been adjusting! We have to keep reminding ourselves that we are on the same team and we are not the enemy here it is the disease!
I found myself so exhausted and at one point when I walked past the wheelchair I just kicked it! Of course Rick wasn't around when I did that! I was just so frustrated at times! I am thankful that we have such an aid of course to make a way for Rick to get around the suite but I don't like what it reminds me of.
I haven't had too much time to think of the actual move right now because of just being plain old tired!
Our friend Dave spent three days here with us getting some things done in the suite. We were so happy to see him again!
Rick is having a very hard time this past week not being able to do things to help with the move. I woke him up again this morning as he was having really bad dreams again. This time he was laying in a hospital bed and the bed was laying on quick sand and slowly sucking him in. We both agreed that we still are in denial and don't even want to think about what is happening. It is just too painful!
On the bright side of things...Rick took his scooter up to the grocery store yesterday with little Kate driving! He had all kinds of people waving and stopping to talk to them. People know who we are but we don't always know who they are yet. Small towns are so much different than city life. You can run but you can't hide! :)
We are the proud owner of a 1980's van with an electric chair lift. It is so huge! I call it "the beast" or "the bus". Depending on the mood I am in. I will probably have to take special driving lessons to drive it. You will know what I mean if you ever read the first time out with Rick and his wheelchair. I feel sorry for my husband...he is such a patient man! I thank God for that!
Thursday, October 9, 2008
Rick here...the terror of ALS
Well...a few thoughts on terror. Been doing a ton of thinking and talking with Joan about this. The terror that grips you with this thing has really little to do with death. I have faith and though there is grief to deal with there is really no terror concerning the hereafter.
The terror of AlS lies in the progressive loss of ability and function and the increasing speed at which it is happening. Right now I am only able to go a few feet with the cane alone on level ground...other than that it is the walker and scooter. More than 4 or 5 stairs are impossible without extreme effort. Being measured up for a power wheelchair in the next few days, so that is next. I have actually been able to deal with the loss of legs pretty well tho...I guess cause you see all kinds of folks dealing with that all the time.
The really scary thing for me is that my arms and hands are starting to go. The way it has worked with me is that first I have muscle twitching (fasiculations) in an area..say a leg or arm...followed later by cramping and loss of strength that just goes on and on...not fast but worse every day. Been experiencing that for some time now in my arms and hands,been starting to drop things, knock stuff over,etc. It is weird...your brain thinks you have lifted your hand 6 inches so you swing it over and discover as you knock over the coffee that it only went up 4 inches...makes a mess but so far at least I've missed the keyboard :)
The muscles in my stomach and chest have gone badly...leaves me with quite a little beer belly for the first time in my life :) The stomach muscles are the ones that push your diaphragm for breathing and coughing so it is not good though. When I try and cough now it is very difficult since there is no power behind it...not looking forward to colds that is for sure.
Been having some scary swallowing, choking things going on as well. Creates a gagging session that can go on for a while and leaves me pretty well unable to talk.
Been having the first cramps in my throat which is very weird too...it just kind of paralyses my throat muscles and makes it impossible to swallow or speak till it passes. Joan also noticed the first twitching that we have seen on my face this week....agghhhhh!
It is progressing on all fronts at once- some slower and some faster- but still all at once. And this will sadly soon be the good old days!! That is the terror of this beast.
When I compare how I am now to how I was at diagnosis Feb 1 this year( when I didn't even need a cane) ...and then extrapolate the same progression rate ahead another 8 months it is not a cheery thing:(
The terror of AlS lies in the progressive loss of ability and function and the increasing speed at which it is happening. Right now I am only able to go a few feet with the cane alone on level ground...other than that it is the walker and scooter. More than 4 or 5 stairs are impossible without extreme effort. Being measured up for a power wheelchair in the next few days, so that is next. I have actually been able to deal with the loss of legs pretty well tho...I guess cause you see all kinds of folks dealing with that all the time.
The really scary thing for me is that my arms and hands are starting to go. The way it has worked with me is that first I have muscle twitching (fasiculations) in an area..say a leg or arm...followed later by cramping and loss of strength that just goes on and on...not fast but worse every day. Been experiencing that for some time now in my arms and hands,been starting to drop things, knock stuff over,etc. It is weird...your brain thinks you have lifted your hand 6 inches so you swing it over and discover as you knock over the coffee that it only went up 4 inches...makes a mess but so far at least I've missed the keyboard :)
The muscles in my stomach and chest have gone badly...leaves me with quite a little beer belly for the first time in my life :) The stomach muscles are the ones that push your diaphragm for breathing and coughing so it is not good though. When I try and cough now it is very difficult since there is no power behind it...not looking forward to colds that is for sure.
Been having some scary swallowing, choking things going on as well. Creates a gagging session that can go on for a while and leaves me pretty well unable to talk.
Been having the first cramps in my throat which is very weird too...it just kind of paralyses my throat muscles and makes it impossible to swallow or speak till it passes. Joan also noticed the first twitching that we have seen on my face this week....agghhhhh!
It is progressing on all fronts at once- some slower and some faster- but still all at once. And this will sadly soon be the good old days!! That is the terror of this beast.
When I compare how I am now to how I was at diagnosis Feb 1 this year( when I didn't even need a cane) ...and then extrapolate the same progression rate ahead another 8 months it is not a cheery thing:(
Wednesday, October 8, 2008
Joan here....Thanks Garth, Colleen and Grant & Jenn!
We are so thankful for the wonderful surprise of Rick's bro coming and building a deck so Rick can actually go in the backyard with his wheelchair now. Colleen and Grant supplied the awesome cedar to build it. Garth and Jake ever so carefully lined up the deck to the door threshold so Rick will have a smooth transition for his upcoming power wheel chair. We used to refer to it as an "electric" chair...but got corrected really quickly! lol
Rick is amazed at how wonderful the side arms and toilet extension that we installed around the toilet has helped him. This equipment was donated to us. To the uninitiated, a toilet extender, sits on top the toilet seat...kinda like a 6" thick potty seat. It lifts you up which is great for him....but whoa for me... I feel like I am having a mountain top experience when using it. Sadly, Rick is unable to get up from a regular toilet by himself anymore. He needs something to pull himself up with.
We have been trying to get ourselves moved from our apartment and emptying storage units , warehouse, etc. So we have been out of sight for awhile. We keep taking trips with Chad's van out to Whitemouth full of stuff. A slow process but I think that is what we needed right now. A fast move would have been just to hard emotionally. We are slowly letting go! We have been lingering and enjoying every second where we are at. We know when we move...we will never be back here again together. Jenn has been helping us with her trusty truck in moving a lot of our stuff also. Most of the stuff is just getting rearranged to different storage places as our new home can only take a bit of our belongings.
Last week, Rick and I were asked to speak and share on what we are going through at the 3 rd Annual ALS Conference held in Wpg. They had guest speakers from all over. A Winnipeg scientist who is working on a cure for ALS, a representative from ALS Canada and ALS Manitoba, Health Care providers, Professor from UofM speaking on end of life choices, Physicians, Nurses and some ALS clients. As I sat up front looking at the crowd I just could not believe this was happening to us! Here we were Rick and I sharing about ALS and how it has affected our lives to a group of professionals and etc. We have met so many other people there with so much pain also.
Tuesday 12:00 midnight we are officially out of here. I haven't even begun to pack a stitch of anything here in the suite. I have done everything to put it off! But my time has run out.
Rick is amazed at how wonderful the side arms and toilet extension that we installed around the toilet has helped him. This equipment was donated to us. To the uninitiated, a toilet extender, sits on top the toilet seat...kinda like a 6" thick potty seat. It lifts you up which is great for him....but whoa for me... I feel like I am having a mountain top experience when using it. Sadly, Rick is unable to get up from a regular toilet by himself anymore. He needs something to pull himself up with.
We have been trying to get ourselves moved from our apartment and emptying storage units , warehouse, etc. So we have been out of sight for awhile. We keep taking trips with Chad's van out to Whitemouth full of stuff. A slow process but I think that is what we needed right now. A fast move would have been just to hard emotionally. We are slowly letting go! We have been lingering and enjoying every second where we are at. We know when we move...we will never be back here again together. Jenn has been helping us with her trusty truck in moving a lot of our stuff also. Most of the stuff is just getting rearranged to different storage places as our new home can only take a bit of our belongings.
Last week, Rick and I were asked to speak and share on what we are going through at the 3 rd Annual ALS Conference held in Wpg. They had guest speakers from all over. A Winnipeg scientist who is working on a cure for ALS, a representative from ALS Canada and ALS Manitoba, Health Care providers, Professor from UofM speaking on end of life choices, Physicians, Nurses and some ALS clients. As I sat up front looking at the crowd I just could not believe this was happening to us! Here we were Rick and I sharing about ALS and how it has affected our lives to a group of professionals and etc. We have met so many other people there with so much pain also.
Tuesday 12:00 midnight we are officially out of here. I haven't even begun to pack a stitch of anything here in the suite. I have done everything to put it off! But my time has run out.
Tuesday, October 7, 2008
Rick here- finally
well...I'm baaccckkkk! Kind of!
Been a VERY tough few weeks and I have avoided blogging as it has been pretty grim in terms of trying to put anything down in a meaningful way. For a variety of reasons. I have made notes tho so may be putting a lot of stuff up now to catch up. I determined when I started this to be honest but I find that the honesty I feel that would most help people is set against my predisposition to put a positive spin on things. It creates quite a conflict. I always coped in life by sucking it up, working harder, going faster, doing whatever it took to make it work, sacrificing, etc. Sadly, with ALS, that approach does NOT work. Sooooo..here we go...
I have learned what anticipatory grief is...not pleasant at all....and I am insufferably positive so I can hardly imagine what a person more naturally given to sour thoughts goes thru!!
I am learning the art of receiving as opposed to giving - even very basic things.. Damn humbling to say the least! It is pretty hard to get used to kind little old ladies opening doors for you and your 5 year old grand kid lifting the box cause you can't....agggghhhhhhh! And these are the 'good old days' No one has to wipe my bottom yet but that is in the too near future. Good grief! This is a wicked disease!
Every moment of every day I look the tiger in the eye! The only few moments I can feel normal are in the night if I waken, don't move a muscle (cause if I do I cramp up) am snuggled to my sweetheart Joan and hold her. For a minute or two I can pretend that all is well and that I am not ill. The second I move, shift my weight or wiggle then it is right there again. I can't stand, move, raise a hand or turn over without fighting it. The weakness is pervasive - affecting every movement. The swallowing and choking issues have started as well....mild for now...but there none the less.
Anyhow...this is a start...more later.
Been a VERY tough few weeks and I have avoided blogging as it has been pretty grim in terms of trying to put anything down in a meaningful way. For a variety of reasons. I have made notes tho so may be putting a lot of stuff up now to catch up. I determined when I started this to be honest but I find that the honesty I feel that would most help people is set against my predisposition to put a positive spin on things. It creates quite a conflict. I always coped in life by sucking it up, working harder, going faster, doing whatever it took to make it work, sacrificing, etc. Sadly, with ALS, that approach does NOT work. Sooooo..here we go...
I have learned what anticipatory grief is...not pleasant at all....and I am insufferably positive so I can hardly imagine what a person more naturally given to sour thoughts goes thru!!
I am learning the art of receiving as opposed to giving - even very basic things.. Damn humbling to say the least! It is pretty hard to get used to kind little old ladies opening doors for you and your 5 year old grand kid lifting the box cause you can't....agggghhhhhhh! And these are the 'good old days' No one has to wipe my bottom yet but that is in the too near future. Good grief! This is a wicked disease!
Every moment of every day I look the tiger in the eye! The only few moments I can feel normal are in the night if I waken, don't move a muscle (cause if I do I cramp up) am snuggled to my sweetheart Joan and hold her. For a minute or two I can pretend that all is well and that I am not ill. The second I move, shift my weight or wiggle then it is right there again. I can't stand, move, raise a hand or turn over without fighting it. The weakness is pervasive - affecting every movement. The swallowing and choking issues have started as well....mild for now...but there none the less.
Anyhow...this is a start...more later.
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