G'day all, Mike here guest posting.
I'm here with a general update and Stacy will be back with more from the tear jerking and inspiration collection soon. She gets all the good jobs.
Righto so the matriarch, the big momma, the lady in the red hair, Debi Frey has been in town for the last 4 weeks. It has been very good to have Deb on board helping out around the house and I'd say we are all in fairly good emotional condition. That might be speaking a bit out of line, however I'm going to keep a positive frame of mind on this one.
We are heading over to the states on the 16th of May (two days time) and we think the trip will be both very tiring and also fairly enjoyable. It will be a mixed trip with a visit to Montana to spend some time with family and friends, quickly followed by some time in Reno, Nevada at an alternative medicine clinic.
Many of the doctors and health professionals are quite concerned about us making this trip to the states on the grounds that Stacy's condition is progressing and she is moving into a stage where she will require regular assessment of her breathing and swallowing function. The reality is that if this trip was purely of a social nature we would probably have decided against it as it does pose a risk to Stacy's overall health.
The situation is though that we feel the need to do some further investigation into the treatment of Stacy's condition. As such we are taking the risk of accelerating the progress of Stacy's decline against the potential good news we may find at this clinic in Nevada. Details about the clinic can be found at http://www.sierraintegrative.com/
Stacy's incredible ability to synthesise frightening new information about her own mortality into her world view in order to make major life decisions is astounding. It took her around 26 hours to incorporate the information that a trip to the States for more than a month could be very dangerous to her health into her understanding of the world. She then considered the situation she found herself in, balanced the risks and made her decision. The brilliance of this is that once the decision was made we were back to enjoying our evening and living our life.
Sometimes you make a decision and then continue to remake the same decision in the following days and weeks. This keeps you in a state of flux that inhibits your ability to live your life and enjoy the world. Stacy and I have learned how to make life changing decisions and then leave those decisions made so we can go out and enjoy an iced coffee in all its creamy deliciousness.
"Mike I've worked it out, I can either stay here and die, or I can go over there and try.
Do you know what movies are on tonight?"
So we are coming over to the states and we'll see what comes of it. One thing that we know will come of our trip to the states is a Montana sized fund-raiser: http://stacyneildbenefit.eikonproductions.com/
Team Stacy North America branch have been working overtime and it seems to us that a huge event is the direct result. We aren't really sure what will be involved with this benefit night, however we do know that Tawnya did her TV interview today, and that through the class of 2000 Great Falls High 10 year reunion facebook page the news of the benefit has gone viral - go bison.
Ok, enough out of me. I'm sure Stacy will be back here soon to share some insight about the beauty of life or something. She's sitting next to me reading some Steven King short stories so I'll be interested to see how she works that in with her blog theme of positive thinking and floating in oceans of faith while dreaming about running.
Keep the email love coming, we are both regularly buoyed by the beauty and eloquence of our friends and family.
Love
Mike
Friday, May 14, 2010
Sunday, April 25, 2010
Finding Faith~
Just today I was discussing with Mike how I feel like my faith is wavering. I decided to come home from lunch and google search ALS miracles when I stumbled on this:
"Faith is a state of openness or trust. To have faith is to trust yourself to the water. When you swim you don't grab hold of the water, because if you do you will sink and drown. Instead you relax, and float. And the attitude of faith is the very opposite of clinging to belief, of holding on. In other words, a person who is fanatic in matters of religion, and clings to certain ideas about the nature of God and the universe, becomes a person who has no faith at all. Instead they are holding tight. But the attitude of faith is to let go, and become open to truth, whatever it might turn out to be."
Alan Watts.
Maybe sometimes faith finds you. I thought it was worth sharing.
"Faith is a state of openness or trust. To have faith is to trust yourself to the water. When you swim you don't grab hold of the water, because if you do you will sink and drown. Instead you relax, and float. And the attitude of faith is the very opposite of clinging to belief, of holding on. In other words, a person who is fanatic in matters of religion, and clings to certain ideas about the nature of God and the universe, becomes a person who has no faith at all. Instead they are holding tight. But the attitude of faith is to let go, and become open to truth, whatever it might turn out to be."
Alan Watts.
Maybe sometimes faith finds you. I thought it was worth sharing.
Wednesday, April 14, 2010
I had a dream~
Last night I had a dream, it was the most amazing dream the kind of dream were you know your dreaming but it feels so real. I was in a city somewhere waiting for Mike, in my dream I knew I had MND but when Mike arrived we decided to walk home even though I knew I couldn't.
As we began to walk I noticed that Mike wasn't helping me. I realized I was walking on my own, no limp, no foot drag, no assistance. I couldn't believe it, the sensation of walking was exhilarating, I began to cry, then run, then skip. I spent the rest of my dream walking back and forth on this invisible street in my mind.
It was so real, I half expected to be able to walk when I woke up.
I hope I have this dream again.
As we began to walk I noticed that Mike wasn't helping me. I realized I was walking on my own, no limp, no foot drag, no assistance. I couldn't believe it, the sensation of walking was exhilarating, I began to cry, then run, then skip. I spent the rest of my dream walking back and forth on this invisible street in my mind.
It was so real, I half expected to be able to walk when I woke up.
I hope I have this dream again.
Thursday, March 25, 2010
Update time~
So I realized it has been awhile since my last post, I'll fill you in on what's been happening.
Vanuatu was great however a little sad. I am so used to being active on holidays it was hard for me not to be able to go hiking, snorkeling, cliff jumping ect. I'm still working on catching my brain up on whats happening with my body. Mike and I still enjoyed ourselves it was just different.
After Vanuatu we came home for a few days before heading to Sydney to pick up Liz who flew in from NY for a week. We had a blast with her here, lots of laughs. It makes such a difference to have a 3rd person to help out. It was nice for Mike to have a few breaks.
So what's the plan? Well unfortunately I am still progressing. I have trouble typing so Mike usually scribes for me however at the moment he is sound asleep. My walking is worse, I got my first wheelchair last week, it's red my favorite color, we only use it for big outings. I'm trying to walk for as long as possible. My speech is becoming a little slurry mostly when I'm tired. All in all my body is falling apart however I'm doing pretty good staying sane.
The up side of MND is my mom is coming out in a couple weeks! I can't wait. At the moment Mike and I are looking for a new place to rent, the place we are in now has too many stairs. We also have both decided to no longer work. We are not sure how much time we have left so we want to spend it together.
We have made the decision to stay in Australia indefinitely however, we will head back to Montana for a few months in May. Not looking forward to the trip over but I reckon being with my family for awhile will be worth it.
Emotionally we are doing OK. What Mike and I are going through is crazy something we never even thought to worry about, something most people don't have to deal with until they are old and gray. I'd be lying if I said everyday isn't a constant struggle. But what I've learned is we can withstand more then we ever thought possible. I'm so blessed to have a husband that is my other half, who showers me with unconditional love in situations that would send others running. I've come to the end of my rope countless times in the last few months but thank God I had Mike there to tie little knots and tell me to hang on.
Vanuatu was great however a little sad. I am so used to being active on holidays it was hard for me not to be able to go hiking, snorkeling, cliff jumping ect. I'm still working on catching my brain up on whats happening with my body. Mike and I still enjoyed ourselves it was just different.
After Vanuatu we came home for a few days before heading to Sydney to pick up Liz who flew in from NY for a week. We had a blast with her here, lots of laughs. It makes such a difference to have a 3rd person to help out. It was nice for Mike to have a few breaks.
So what's the plan? Well unfortunately I am still progressing. I have trouble typing so Mike usually scribes for me however at the moment he is sound asleep. My walking is worse, I got my first wheelchair last week, it's red my favorite color, we only use it for big outings. I'm trying to walk for as long as possible. My speech is becoming a little slurry mostly when I'm tired. All in all my body is falling apart however I'm doing pretty good staying sane.
The up side of MND is my mom is coming out in a couple weeks! I can't wait. At the moment Mike and I are looking for a new place to rent, the place we are in now has too many stairs. We also have both decided to no longer work. We are not sure how much time we have left so we want to spend it together.
We have made the decision to stay in Australia indefinitely however, we will head back to Montana for a few months in May. Not looking forward to the trip over but I reckon being with my family for awhile will be worth it.
Emotionally we are doing OK. What Mike and I are going through is crazy something we never even thought to worry about, something most people don't have to deal with until they are old and gray. I'd be lying if I said everyday isn't a constant struggle. But what I've learned is we can withstand more then we ever thought possible. I'm so blessed to have a husband that is my other half, who showers me with unconditional love in situations that would send others running. I've come to the end of my rope countless times in the last few months but thank God I had Mike there to tie little knots and tell me to hang on.
Wednesday, March 10, 2010
Saturday, February 27, 2010
Part 2 - Vanuatu
Hi family and friends
This is some of what has been happening in Vanuatu so far.
This is some of what has been happening in Vanuatu so far.
Stand by for more action soon.
Love Stay and Mike
Wednesday, February 24, 2010
The adventure begins - Part 1. Tasmania
Sorry its been a while since I've blogged. I've had a busy month turning 28 and planning our 6 week adventure. Yeah.
As lots of you may know our original plan was to travel around Australia in a caravan. As it came closer to our planned departure it became clear that this was most definitely not a good idea due to my increased movement challenges.
So plan B. Travel where we want, when we want. First stop Tasmania.
We headed off to Tasmania on February 13th with our good friends Jennine and Harry. Harry is an old frisbee friend of Mikes and as I told Harry when he said his girlfriend Jennine was coming over from Canada "we are going to be best friends", I was right.
Thankfully Harry organised the entire trip for us including car hire, excellent bed and breakfast style accommodation and the occasional tourist activity.
Highlights of the trip included: The delicious meal we had at the Grand Chancellor in Hobart. Sea food extravaganza including "monster crayfish". This was followed shortly after by a wharf side proposal by Harry to Jennine.
We had a nice drive up to Launceston, where we met Harrys uncle Jack, Aunt Becky and family. We had an excellent lunch with the Tasmanian branch of the Birrell family including our first bottle of French Champagne to celebrate Jennine joining the family.
The jewel in Launceston's crown is cataract gorge which sits right on the west side of town.
The next 3 days were spent in a sleepy little town in the middle of Tassie. We stayed at the charming Tin Dragon cottages which featured an outdoor spa bath to watch the milky way go by, a delicious organic BBQ basket and exceptional service. I did however get spit on by a disgruntled alpaca.
We also spent some time at Bicheno on the Bay. The highlight of my trip was the delicious fresh oysters for dinner and the penguin walk night tour which was full of penguin action.
Final stop on the trip was Port Arthur convict settlement. This was a nice look into Australia's brutal history and although we didn't go on the night ghost tour I was on the look out as we toured the grounds.
We spent our final night in a old restored convict era building called Convict Station. This building had an air of the spooky about it which was enhanced by my bed being positioned directly under the man hole to the attic. The convict attic.
All up our trip to Tasmania was an absolute pleasure. I stuffed myself with seafood, had fantastic company, beautiful scenery and a rockin' good time. Thanks to everyone who made this trip possible through their kind contributions.
Next stop Vanuatu, hoot. I'll leave you with a few pictures from the Tassie trip. Enjoy!
As lots of you may know our original plan was to travel around Australia in a caravan. As it came closer to our planned departure it became clear that this was most definitely not a good idea due to my increased movement challenges.
So plan B. Travel where we want, when we want. First stop Tasmania.
We headed off to Tasmania on February 13th with our good friends Jennine and Harry. Harry is an old frisbee friend of Mikes and as I told Harry when he said his girlfriend Jennine was coming over from Canada "we are going to be best friends", I was right.
Thankfully Harry organised the entire trip for us including car hire, excellent bed and breakfast style accommodation and the occasional tourist activity.
Highlights of the trip included: The delicious meal we had at the Grand Chancellor in Hobart. Sea food extravaganza including "monster crayfish". This was followed shortly after by a wharf side proposal by Harry to Jennine.
We had a nice drive up to Launceston, where we met Harrys uncle Jack, Aunt Becky and family. We had an excellent lunch with the Tasmanian branch of the Birrell family including our first bottle of French Champagne to celebrate Jennine joining the family.
The jewel in Launceston's crown is cataract gorge which sits right on the west side of town.
The next 3 days were spent in a sleepy little town in the middle of Tassie. We stayed at the charming Tin Dragon cottages which featured an outdoor spa bath to watch the milky way go by, a delicious organic BBQ basket and exceptional service. I did however get spit on by a disgruntled alpaca.
We also spent some time at Bicheno on the Bay. The highlight of my trip was the delicious fresh oysters for dinner and the penguin walk night tour which was full of penguin action.
Final stop on the trip was Port Arthur convict settlement. This was a nice look into Australia's brutal history and although we didn't go on the night ghost tour I was on the look out as we toured the grounds.
We spent our final night in a old restored convict era building called Convict Station. This building had an air of the spooky about it which was enhanced by my bed being positioned directly under the man hole to the attic. The convict attic.
All up our trip to Tasmania was an absolute pleasure. I stuffed myself with seafood, had fantastic company, beautiful scenery and a rockin' good time. Thanks to everyone who made this trip possible through their kind contributions.
Next stop Vanuatu, hoot. I'll leave you with a few pictures from the Tassie trip. Enjoy!
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