so it's been exactly 4 weeks at this very moment since i was given that drug that put me to sleep and they inserted a tube into my groin whch was then snaked up through my venous system into my jugular vein where they then inflated a balloon to open a blockage that they found there.
the fact is, it all feels as surreal to me right now as it sounds. i sit here on my couch in my basement, having just listened to myself on cbc news ranting about the g20 and the vulgar misuse of $1.2B of public funds when so many people in this country need housng, looking back on the 4 weeks that have passed and i find myself questioning if it all actually happened or if it was just a dream.
but then i get brought back to reality every morning and every night when i inject myself in the stomach with blood thinning medication to help keep the blood flowing through the new openings in my body. (thank God that ends this weekend)
the day of the surgery and the night before were probably, if i were being honest, some of the most terrifying hours of my life. the night before the surgery, i almost bailed, i was so scared. and it didn't help me when i met some people over dinner that night who had some pretty scary complications from having the procedure done. i think i only decided to go through with it as i knew i'd regret it for the rest of my life if i got this close but walked away. and i'm glad i did. i have no regrets.
so what is life like 4 weeks post op? well i continue to feel great. i really can't be sure any more if my renewed energy and stamina are directly related to the surgery or if it is a result of my daily visits to the gym and my new found discipline around my diet and a really great physiotherapist. i suspect the truth is that it's a combination of the two. but i feel a lot more energy, not the same oppressive fatigue that regularly overcame me, far better balance and definitely more endurance. i even did 5 minutes on a treadmill the other morning. i haven't done that in over a year. and i cycled 25km this past sunday morning before we went to church. i was thrilled about that.
i still don't have my feeling in my hands and feet back, and my bladder issues continue to piss me off (pun intended), but overall i feel a lot healthier than i did four weeks and one day ago.
and another cool development is that the doctor in barrie that originally tested me has put a call out to people who have had the procedure to come back in for testing to see if there is any difference. so i am waiting for a call soon from barrie to go back for a follow-up test. i'm thrilled about that as i can't help but wonder if the veins are still open or if they just went back to the way they were. this will tell the tale.
so what am i learning? well much of what i have learned in these past 20 years has come from my friends in the streets. and the same is true yet again. i have been questioning God as to why He has chosen not to give me the instant healing that i have longed for. She answered that question this past saturday night as i went to an open mic night at a local drop-in that my wife erinn works at. the folks there knew all about my journey and had been praying for me and my family all throughout this thing. they also dug deep and even gave us some money for the trip which was so moving to me. i sat with a guy that i've known for more than a decade who is a christian and is also a crack addict and is on and off the street. he heard my confusion as to why God didn't answer my deepest longing in the way i wanted Him to and he related his own story to me. he said that he has cried out to God for many years to be delivered from his addictive tendancies and yet that craving still haunts him. there is nothing more in this life that he wants than to stop craving crack cocaine, but yet he continues to go back to it over and over again. he believes that maybe the purpose of not having the instant fix is so that he would continue to cry out to God in dependance on Her and that if he got cured from his addiction that maybe he would forget God altogether.
i believe that God answered my question in that encounter as i too might very well forget my longing and need for God if i didn't have this affliction in my life. i am a child of God and while i have no real clue as to how God parents me and why She chooses to do certain things in particular ways, i trust the He, the creator and sustainer of all things, knows better than i. most days that gives me great comfort.
(side note: i use 'He' and 'She' interchangeably when referring to God as i dont actually believe that God has any gender but embodies all of the perfectness of what is male and female)
so, as has been my tradition in these notes, i will end with a prayer
Father God, i trust you. while i don't always understand what you're up to, i am yours.
thank-you for the way that my life has improved since i have had this operation.
but if it's all the same to you, i'd really like to be rid of this disease once and for all. and i promise i wouldn't turn my back on you or forget you if you took it from me.
but Mother God, i remain grateful for the many blessings that i have. and i thank you for your love in my life.
i am yours
amen
Thursday, July 22, 2010
Sunday, July 4, 2010
july 4. 11 days post liberation
well this will be my last post from my fave spot at my fave time of day here in costa rica. i'm sitting by the pool with the cool evening costa rican breeze and trying to reflect on the past few weeks. virtually impossible.
yesterday we had a full day adventure to the pacific coast where we spent an hour and a half in a river full of giant crocs. that will go down as my favorite part of the touristy section of my trip. just check out the pics i've just posted for a glimpse at the adventure. then we travelled to a tram that trook us up a mountain over a rainforest. there we saw monkeys, a toucan, 2 macaws, and a sloth. that too was awesome. and then we went to the beach and hung out there before we headed home. the place we went was called jaco (pronounced yack-o) and it was only 100 or so kms away but it felt like we were driving into an oven. if my dad were there he'd have said he was 'rendered out'. it was stinking hot. it's shocking how drastically the temp changes here withing very short distances. if i lived here i could easily manage san jose but not the coast.
anyway, tonight the whole gang ordered a pile of pizzas and had a little party together. it was quite a nice gathering of folks who were leaving to go home and folks who were just arriving. there are some really great people here, all of us convinced that this thing works and all are committed to lobbying the canadian government to get this in place for all people suffering with MS who will benefit from this. the stories here are quite dramatic. more dramatic than mine by a long shot.
as for me, i came here hoping for at least three things back that MS has taken from me. i wanted my feeling back in my hands, i wanted better control over my bladder, and i wanted to walk better. so far there seem to be no noticable changes in the first two and i'd be lying if i said i weren't dissappointed about that. especially when people here are telling stories about instant relief from those two issues. one lady had numb hands for16 years and felt her hands as soon as she woke up. when she told me this i have to be honest and ay that my initial instinct was one of jealousy and i wanted to punch her in the face and ask her if she felt that too:) but instead i hurrayed and congratulated her with as much enthusiasm as i could muster. and most of that was genuine. i truly was happy for her.
as for my walking, i have without question improved but yesterday i was reminded of how far i have to go. once i got in the ocean, the waves were massive and i could not handle the back and forth of the tide and was quickly gassed by the energy i needed to get out of there. once i made it to my towel, i knew i was cooked. now again, that was the end of the day, it was 2000 degrees, we had driven a long time, and i was already tired. but i felt the exact same fatigue i am used to feeling with MS and i was dissappointed by it.
so, for me, once again i need to be patient. so many people are reportring major breakthroughs 3-6 months post-procedure and i will stay hopeful for that.
and if i don't experience those breakthroughs, i will be ok too. i have a family who loves me and who i love back. i have so many dear friends that love and care for me and i love back (which this experience reminded me of in a powerful way). i have the best job on the planet where i get to work alongside so many wonderful, caring people as we march onward towards seeking justice for our friends on the street. and my faith in and dependance on God, the only true MS specialist, has deepened. in fact, about a year ago we began a study of the book of acts with my staff. and in the first few chapters of that book there are stories of many miracles of healing and transformation. my deepest longing when we started that was that i would have an opprtunity to see miracles too. i longed to witness the blind see and the lame to walk, and that was before i ever heard of this treatment. and God has answered my prayer as i have since witnessed first hand the lame walking again. these things aren't ancient stories that are irrelevant to us. these are real and they can and do happen now.
so, is travelling to a foreign country for an invasive experimental surgery the craziest thing i've ever done? by far
was it a successful journey? partially but only as the story unfolds will i truly know.
am i glad we did this? yes, without one iota of a doubt.
so to end this chapter of the story, i will yet again end with a prayer;
"thank-you that through this journey, I drew closer to You -- You are my comfort and strength. I pray that ultimately, whatever happens, You will be glorified through me.
amen.”
yesterday we had a full day adventure to the pacific coast where we spent an hour and a half in a river full of giant crocs. that will go down as my favorite part of the touristy section of my trip. just check out the pics i've just posted for a glimpse at the adventure. then we travelled to a tram that trook us up a mountain over a rainforest. there we saw monkeys, a toucan, 2 macaws, and a sloth. that too was awesome. and then we went to the beach and hung out there before we headed home. the place we went was called jaco (pronounced yack-o) and it was only 100 or so kms away but it felt like we were driving into an oven. if my dad were there he'd have said he was 'rendered out'. it was stinking hot. it's shocking how drastically the temp changes here withing very short distances. if i lived here i could easily manage san jose but not the coast.
anyway, tonight the whole gang ordered a pile of pizzas and had a little party together. it was quite a nice gathering of folks who were leaving to go home and folks who were just arriving. there are some really great people here, all of us convinced that this thing works and all are committed to lobbying the canadian government to get this in place for all people suffering with MS who will benefit from this. the stories here are quite dramatic. more dramatic than mine by a long shot.
as for me, i came here hoping for at least three things back that MS has taken from me. i wanted my feeling back in my hands, i wanted better control over my bladder, and i wanted to walk better. so far there seem to be no noticable changes in the first two and i'd be lying if i said i weren't dissappointed about that. especially when people here are telling stories about instant relief from those two issues. one lady had numb hands for16 years and felt her hands as soon as she woke up. when she told me this i have to be honest and ay that my initial instinct was one of jealousy and i wanted to punch her in the face and ask her if she felt that too:) but instead i hurrayed and congratulated her with as much enthusiasm as i could muster. and most of that was genuine. i truly was happy for her.
as for my walking, i have without question improved but yesterday i was reminded of how far i have to go. once i got in the ocean, the waves were massive and i could not handle the back and forth of the tide and was quickly gassed by the energy i needed to get out of there. once i made it to my towel, i knew i was cooked. now again, that was the end of the day, it was 2000 degrees, we had driven a long time, and i was already tired. but i felt the exact same fatigue i am used to feeling with MS and i was dissappointed by it.
so, for me, once again i need to be patient. so many people are reportring major breakthroughs 3-6 months post-procedure and i will stay hopeful for that.
and if i don't experience those breakthroughs, i will be ok too. i have a family who loves me and who i love back. i have so many dear friends that love and care for me and i love back (which this experience reminded me of in a powerful way). i have the best job on the planet where i get to work alongside so many wonderful, caring people as we march onward towards seeking justice for our friends on the street. and my faith in and dependance on God, the only true MS specialist, has deepened. in fact, about a year ago we began a study of the book of acts with my staff. and in the first few chapters of that book there are stories of many miracles of healing and transformation. my deepest longing when we started that was that i would have an opprtunity to see miracles too. i longed to witness the blind see and the lame to walk, and that was before i ever heard of this treatment. and God has answered my prayer as i have since witnessed first hand the lame walking again. these things aren't ancient stories that are irrelevant to us. these are real and they can and do happen now.
so, is travelling to a foreign country for an invasive experimental surgery the craziest thing i've ever done? by far
was it a successful journey? partially but only as the story unfolds will i truly know.
am i glad we did this? yes, without one iota of a doubt.
so to end this chapter of the story, i will yet again end with a prayer;
"thank-you that through this journey, I drew closer to You -- You are my comfort and strength. I pray that ultimately, whatever happens, You will be glorified through me.
amen.”
Friday, July 2, 2010
july 2. canada day boxing day. 9 days post liberation
well our time here is winding down. tonight we said farewell to a couple from our group by all getting together for cake. it's that phase of our journey now when the people we've befriended are starting to leave to go home. we're three sleeps away from our own departure ourselves and are ready to go home now. but the friendships that have been formed here amongst the folks that have flown here all the way from different parts of canada run deep as we have an understanding of what each other is going through in dealing with this disease. it's bitter sweet to be winding this trip up.
and today i had two physio aqppointments as there will be no physio tomorrow or sunday. i've also befriended the two therapists these past two weeks as they have given us such great care. so i'm feeling very tired right now and am looking forward to crashing for the night. tomorrow will be a very long day as we rise at 7am and will be tourists again. we're heading first to a boat that will take us inland where we will encounter monkeys and tons of crocodiles and watch a guy feed these things up close and personal.
then we head to a canopy ride accross the top of the rainforest for an hour. then we get to hang out at the beach on the pacific ocean for a couple of hours.
then we drive back and tomorrow night a group of us are heading back to the restaurant that is owned by the guy from toronto to watch the ufc fight. so i suspect by tomorrow night i'll be far more exhausted than i currently am. but i really would regret not going to do the things we're going to do tomorrow if we don't do them. life's to short to pass these things up.
i'm still feeling good. no major improvements today but that's ok. time will tell the full tale so we will wait.
so for now i'll end with thomas merton's prayer that on this night is my own;
'MY LORD GOD, I have no idea where I am going.
I do not see the road ahead of me.
I cannot know for certain where it will end.
Nor do I really know myself, and the fact that I think that I am following your will does not mean that I am actually doing so.
But I believe that the desire to please you does in fact please you.
And I hope I have that desire in all that I am doing.
I hope that I will never do anything apart from that desire.
And I know that if I do this you will lead me by the right road though I may know nothing about it.
Therefore will I trust you always though I may seem to be lost and in the shadow of death.
I will not fear, for you are ever with me, and you will never leave me to face my perils alone.'
shalom
and today i had two physio aqppointments as there will be no physio tomorrow or sunday. i've also befriended the two therapists these past two weeks as they have given us such great care. so i'm feeling very tired right now and am looking forward to crashing for the night. tomorrow will be a very long day as we rise at 7am and will be tourists again. we're heading first to a boat that will take us inland where we will encounter monkeys and tons of crocodiles and watch a guy feed these things up close and personal.
then we head to a canopy ride accross the top of the rainforest for an hour. then we get to hang out at the beach on the pacific ocean for a couple of hours.
then we drive back and tomorrow night a group of us are heading back to the restaurant that is owned by the guy from toronto to watch the ufc fight. so i suspect by tomorrow night i'll be far more exhausted than i currently am. but i really would regret not going to do the things we're going to do tomorrow if we don't do them. life's to short to pass these things up.
i'm still feeling good. no major improvements today but that's ok. time will tell the full tale so we will wait.
so for now i'll end with thomas merton's prayer that on this night is my own;
'MY LORD GOD, I have no idea where I am going.
I do not see the road ahead of me.
I cannot know for certain where it will end.
Nor do I really know myself, and the fact that I think that I am following your will does not mean that I am actually doing so.
But I believe that the desire to please you does in fact please you.
And I hope I have that desire in all that I am doing.
I hope that I will never do anything apart from that desire.
And I know that if I do this you will lead me by the right road though I may know nothing about it.
Therefore will I trust you always though I may seem to be lost and in the shadow of death.
I will not fear, for you are ever with me, and you will never leave me to face my perils alone.'
shalom
Thursday, July 1, 2010
july 1. canada day. 8 days post liberation
a funny thing happened on the way home after my time of blogging last night. a mariachi band showed up and they picked the party up a major notch. so i ran and got erinn and we sat and listened to their last couple of tunes. then a funnier thing happened when they were done. me and erinn were walking back to our room and the band were all milling around the place and we got our pic taken with them. good times. i'm currently writing to the sounds of a very good jazz guitarist playing right here beside me. the quality of music has been redeemed since that first band we heard a week or so ago.
today was another great day here. this place in and of itself brings healing just because of the relaxed vibe here. no one actually cares what time it is.
i had physio at 9am today and they've kicked it up a major notch. i only have 2 more sessions left tomorrow and one on monday morning before we leave and so they are kicking butt now. my balance and endurance are continuing to improve in measurable ways. now i need the discipline to keep it going when i get back home.
i also had a follow-up appointment back at the hospital today with the surgeon, dr. fallas. he's a very nice guy and a great surgeon. he did an ultrasound on my neck and it showed that the newly opened veins in my jugular were still open and puming new blood through me. that was a concern i had that was alleviated today. the other awesome, tangible medical result today was that when he checked my reflexes in my arms (i didn't have any reflexes from my elbows down before the procedure) i did indeed have a reflex. that's a very good, measurable, result that is evidence that this thing is working. then the whole medical crew, neurologist, surgeon, MD, and administration came out to watch me walk and they said i looked like a totally different guy. i left the hospital feeling like a million bucks. twas a good day
then we went for dinner at a 50's diner owned and operated by a good friend of a good friend of mine in toronto (hey sam). we ate realy well and enjoyed a really nice dinner with some new friends from newfoundland who are here for the same procedure. their little boy, kyle, is 9 and he and cate have made instant friends. and cate just yesterday said that she wished she had a friend here. God does answer the prayers of little children.
tomorrow i have 2 physio appointments. and we plan to continue our relaxation by the pool, drinking fruity drinks and yes, even coffee.
the passage running through my head today that has brought me great comfort in this land of the origins of the liberation theology movement, just 8 days after my liberation treatement, is from paul's letter to the romans;
"...creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God."
Amen
today was another great day here. this place in and of itself brings healing just because of the relaxed vibe here. no one actually cares what time it is.
i had physio at 9am today and they've kicked it up a major notch. i only have 2 more sessions left tomorrow and one on monday morning before we leave and so they are kicking butt now. my balance and endurance are continuing to improve in measurable ways. now i need the discipline to keep it going when i get back home.
i also had a follow-up appointment back at the hospital today with the surgeon, dr. fallas. he's a very nice guy and a great surgeon. he did an ultrasound on my neck and it showed that the newly opened veins in my jugular were still open and puming new blood through me. that was a concern i had that was alleviated today. the other awesome, tangible medical result today was that when he checked my reflexes in my arms (i didn't have any reflexes from my elbows down before the procedure) i did indeed have a reflex. that's a very good, measurable, result that is evidence that this thing is working. then the whole medical crew, neurologist, surgeon, MD, and administration came out to watch me walk and they said i looked like a totally different guy. i left the hospital feeling like a million bucks. twas a good day
then we went for dinner at a 50's diner owned and operated by a good friend of a good friend of mine in toronto (hey sam). we ate realy well and enjoyed a really nice dinner with some new friends from newfoundland who are here for the same procedure. their little boy, kyle, is 9 and he and cate have made instant friends. and cate just yesterday said that she wished she had a friend here. God does answer the prayers of little children.
tomorrow i have 2 physio appointments. and we plan to continue our relaxation by the pool, drinking fruity drinks and yes, even coffee.
the passage running through my head today that has brought me great comfort in this land of the origins of the liberation theology movement, just 8 days after my liberation treatement, is from paul's letter to the romans;
"...creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God."
Amen
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