well it’s been a bit of a drab and dreary day here in costa rica. it didn’t do the normal sunny, hot morning here and it’s basically been cloudy and raining all day long.
and i myself have been feeling a little like the weather today; drab and dreary. we did decide to head out of the hotel compound today and go downtown san jose. we went to a mall and it was, well, like a mall and sucked the life outta me fairly quickly. malls are just plain wrong. we did, however, eat a nice lunch at the food court and pick up a souvenir or 2.
we’ll do a video of me doing a little jogging tomorrow but we didn’t get around to it today. and there’s been very little progress today with the exception of some marked improvement in my balance. i did get really tired of walking in the mall today and was a little saddened by my lack of endurance. i do think i had more strength than i had previously but not nearly as much as i’d hoped for. but again, we were in a life sucking mall so that didn’t help much.
so, because of the weather and my lack of patience in the progress of this thing and my inability to stop thinking about the events taking place in toronto, my heart is heavy. i think mainly because of toronto, canada, and the world. it’s so heartbreaking to hear of what is happening.
but to be honest, my only surprise is that people are surprised by the violence. in my opinion it was inevitable; i might even suggest all of the ingredients were a recipe for violence.
-tens of thousands of angry people from all over the world with different agendas and messages and felt injustices and no idea how to effectively communicate their rage.
-world leaders who seamingly are untouched by it all and are not apparently listening to the people.
-security people with weapons posted everywhere looking like they want a fight.
-media hounds that are blood thirsty for, well, blood.
-mix together in a bowl.
what else did we expect?
so it’s times like this that we’d all be wise to read the great and successfuol non-violent activists of our past. ghandi. martin luther king junior. mandela. and of course the source of all hope, love, justice, wisdom and peace, jesus. their wisdom is what we need this day.
i do think the extra blood flow in my body may just be making me full of more piss and vinegar. perhaps that’s a good thing (though i’m not sure erinn or my staff or my friends will agree)
i, however, feel better already.
tonight my prayer is not about me for a change. i pray for shalom in toronto, in canada, and in the world.
your kingdom come, on earth as it is in heaven
well i’m back in my usual evening spot by the pool. the weather here is so beautiful. it’s the rainy season so every day it gets real hot and sunny in the morning, then like clockwork at about 1pm it pours down rain for the afternoon, then we get this moment in the evenings of cool breezes and calmness.this is my fave part of the day. i absolutely love it. and while i am extremely interested in the events of the G20 this week in toronto and am following it closely online, and while in my heart i wish i were there joining in protest against the vulger, despicable misuse of $1B in public money for securuty that could be used for those without a home and so many other worthy and important causes in canada, i am eternally grateful for the tranquiltiy and peace i am experiencing here. and it beats being in jail…
but i digress. we had a really nice, relaxing day. swimming all morning (well i had my feet in the pool as i’m not allowed in yet due to the incision and the giant bandage on my groin area) with a 40 minute physio appointment in the middle. there are 2 therapists that work on me each day and i really love them both. they’re very personable and extremely good at what they do. i have a feeling this part of the process might just be one of the most helpful parts of this whole thing. they’re obviously well trained and are also willingto think outside the box. they do not screw around either. they are really giving me the gears and teaching me to balance myself by making me do tons of excercises with my eyes closed. i’m doing stuff i absolutely could not do before this whole thing started.
i definitely feel more stable and confident on my feet. my walking speed has quickened and i don’t stumble around as much. erinn and cate are both convinced that i look stronger, and erinn is telling me my even colour looks better. i even decided to try an experiment of very slow jogging for about 100 feet tonight. which i did!!! i most definitely could not do that last week. maybe tomorrow i’ll post a youtube video of me jogging. next year you marathon friends of mine beware. i might be right there with you kicking butt and taking names.
my hands and feet are still numb, but they seem to want to be waking up. maybe that’s just wishful thinking. and i still have to pee about 20 times per day… i suppose i can live with that but it’d be nice to leave that behind too.
but for now, i’m still taking it slow. i take my surgery bandage off tonight and tomorrow i’ll swim. my physio is at 10am tomorrow and after that we’re gonna get out of the hotel grounds and do something touristy. we’re getting a litle stir crazy and also getting sick of eating the same hotel restaurant food for three meals a day. we also just booked a 2 day, one night tour of a volcano which is supposed to be absolutely spectacular. here’s the link to that if it interests you.
that’ll be next monday and tuesday.
the book i’ve been reading while here is called ‘cry the beloved country’; a book written in the 40’s about racial issues in south africa (thanks jake for loaning it to me) i’ve been reading as much as i can about south africa in preparation for my trip there in october. this book is so beautifully, heartwrenchingly written that it has captured my heart. and today i read a section where an anglican priest was preaching to a group of blind folks. he quoted from isaiah and i read it as though it were a reminder to me today;
‘do you not know, have you not heard
the Lord is the everlasting God
the creator of the ends of the earth
He will not grow tired or weary
and His understanding, no one can fathom
He gives strength to the weary, and increases to power of the weak’
to that reminder i say a joyful hallelujah
that’s all for now. back tomorrow this time.
so, cate, erinn and i are sitting at our dinner table by the pool with the most beautiful breeze and listening to what may be the worst ever spanish band of all time. it’s so bad it’s absolutely hilarious. they’ve been setting up for the past half hour or so and we decided to stay here longer over our meal so that we could hear them. but now that they’ve started, while we are glad we stayed, it’s for completely different reasons than we anticipated. they are simply horrble and we are cracking up laughing. i couldn’t possibly even imagine a more surreal moment. good times.
we’re at the sme table with a half dozen other canadians here for the same reason we are; all of which are feeling relieved to have this thing over with. none of us have any regrets for doing it. and it is therapeutic to be with a group of people who ‘get it’.
as for me, i do feel good right now. everything went as well as we could have hoped for. they sedated me at 5:30pm yesterday and i awoke at 8:30pm; not remembering a thing but knowing it was over. they did find 2 significant blockages; one in my right jugular and the other in my xegos vein. they ballooned them both and there is new blood flow in both those areas. that can only be a good thing.
to be honest, i guess i’ve read too many accounts of this thing where people felt instantly better, and not enough of the majority of the accounts which outline how the recovery takes days, weeks and months to experience change in the MS stuff. so i myself had hoped for the instant fix. but my hands and feet are still numb and all the other stuff seems to be close to the way it was. the only possible changes might be that my hands are slightly different and my walking feels a little better. but it could be wishful thinking. i’m trying to keep it real.
having said all of that, i am content, at peace with the world, in absolutely no pain or even discomfort, and i believe this was the right thing to do. i also believe that somehow, some way, my health will improve over time.
but for now, the music continues on in the background and the laughter is turning to pain and we need to flee this scene before i go and throw those congas in the pool and put this band, and their audience, out of their misery:)
tomorrow i have physio at 10:30 and i will write an update after that.
again, i feel very cared for and loved by so many people and am feeling nothing but gratitude for the way that i/we have been blessed with so many people who genuinely love and care for us.
my prayer to end this day is simply this;
Gateway Linens, a ministry of the Salvation Army, is a job training centre in Toronto that helps homeless men find meaningful work by teaching them the tools of the laundry and linen industry. After the men graduate, they are guaranteed full time work at K-Bro Linen Systems, a local linen company that’s teamed up with the Salvation Army to help fight homelessness.
thoughts on experimental health care, drug companies, MS, hope, diet soda, and God (part 4 of who knows how many)
so i’ve been a little worried, due to some of the stuff that i’ve been writing lately, that our friends think that our entire lives are doom and gloom, nothing but heartache and pain and struggle. while it’s obviously true that we are in a difficult season in our lives with lots of anxiety around health issues, it’s also true that in the midst of all of that, and quite possibly because of it, we are still enjoying life and have lots of day-to-day joy. while these blogs are an attempt to outline the journey i/we are experiencing on the road to costa rica, and that involves articulating some of the harder stuff, i’d hate people to think that the hard stuff is eclipsing how wonderful our lives have been and continue to be. life truly is good for us and we have so many wonderful moments of happiness, love and community that we feel very honestly priviledged to have been given the many gifts that this life has brought us.
so having said all of that, i’ll try and keep this one completely pain free and attempt to articulate a couple of the many moments of pure joy that we have experienced lately. actually, i’ll just focus on today’s events alone.
erinn and i stood up in front of the wonderful folks of our church last week and outlined the two biggest prayer requests on our hearts these days (erinn’s mother elaine who had a very serious and beautifully successful surgery on friday and my upcoming surgery in 10 days time). the church has responded so wonderfully. today yet another 2 members of our church community showed up with meals for us to enjoy at dinner times so that we don’t have the added day to day concerns of making food in the midst of getting through the days.
then again today, something else so incredibly wonderful happened to us that it will be impossible to say how much it really means. most of you know that erinn and i have both committed our lives to journeying alongside people who, for one reason or another, have ended up living lives of dire poverty either on the street or in marginal housing. for me it’s as the director of the salvation army gateway, a 108-bed shelter for men who are currently homeless. for erinn it’s as the managing director of parkdale neighbourhood church (pnc), located in one of toronto’s poorest neighbourhoods. this is a small community where over 90% of the members are experiencing significant mental health issues, many of whom are homeless or living in very poor housing conditions; most do not and cannot work and therefore they have very little money to get by on.
incidentally, our career choices are another case where many people looking in on us from the outside think that our jobs are all about pain and brokenness and that we must therefore be so selflessly sacrificial to be giving of ourselves all the time. but the reality is, we get so much more out of this work than we bring to it. i know i do this out of quite selfish motives in many ways. the things that we’ve learned, the relationships that we’ve formed, the way that our faith has grown, and the joy we receive from having the priviledge of befriending such amazing people that most others have left behind, is a gift that very much brings us joy unspeakable. today was no exception.
you will all know that we needed to raise a lot of money in order to go to costa rica and have the procedure done. well, the folks at pnc love erinn so much that they wanted to contribute financially to this as well. this little group of lovely people who have almost no money, who most people would look at and feel pity and even some loathing for, have for weeks been secretly taking up offerings so that they could give some money to erinn today at church before we leave. in a little plastic baggy full of loose change and some bills (including a ton of pennies that were so obviously all that some of the folks owned but yet were willing to part with out of their love for erinn) was an amazing $157.98. this little baggy of money is more precious than gold to us- it speaks volumes to us about how deeply we really are loved by so many people. now we are faced with the sacred responsibility of spending it well.
so today, one week from the day we leave for costa rica to hopefully be set free of this disease, i feel loved and blessed.
to end this entry today, my prayer to the creator and sustainer of all things is simply this:
we leave one week from tomorrow
so one of the main issues that come along with living with MS is that i don’t actually look sick. in the past year or so since MS has become more front and centre in my life and i have had to tell people that i have the disease, people who have known me for 10 years that didn’t know i had it have inevitably responded with surprise. i just don’t look sick (though some would argue differently but that’s another story for another time…)
last year, for example, when we went to disney for a week, i needed to rent a scooter in order to get through each day. and the disney people took real good care of people with mobility issues. i’d always get loaded on the bus first, and they’d have to strap in the scooter, and then i’d stand up and walk to my seat and sit down with everyone else. this would hold things up about 5 minutes every time we got on or off a bus.
a few times, after i got up and walked to my seat, i’d hear people mutter under their breath that if i could walk then why do i need the scooter. they thought i was likely faking it in order to get to the head of the lines or because i was too lazy to walk. i was so incredibly self conscious of this that i at times even ended up faking a limp from the scooter to the seat in order to prove my worthiness to the people that i was holding up. brutal.
so even though i don’t look sick (again, no comments from the peanut gallery please), i’m sick.
So what exactly are the effects that MS has on my life right now?
1. my hands and feet are numb. i have not really felt my hands for 13 years. and the degree of numbness depends on my level of health which is often dictated by a combination of stress, the weather, and how well i’m eating and exercising.
2. fatigue. some days, especially in the afternoons which is why i like to be working at my desk by 7am on many days so that i can get some good work done, i get swallowed up by fatigue. i simply cannot function. my whole body screams at me to lie down and stop everything.
3. brain fog. whilst i have accomplished a whole lot in the 13 years of living with MS including opening a shelter, starting social purpose businesses, getting married and raising a daughter (well she’s only 7 but so far so good), and finishing a masters degree, i have a brutal struggle with my short term memory. if it weren’t for the wonderful inventions of blackberrys and palm pilots and yes, even the iphone, i wouldn’t know where i was supposed to be next half the time. i forget a lot of stuff. i have very little recollection of my childhood. i forget people that i’ve known for long periods of time in my life. i forget things that me and erinn have done together. i forget stuff. and that scares the crap out of me sometimes.
4. my bladder doesn’t work right. i retain urine. so when my body tells me i need to pee, which is often, i have about 2 minutes before i will pee no matter if i’m at a toilet or not. so, while i ride my bike to work or drive on the highway, more times than i care to remember i have needed to stop and hopefully find an alley or a relatively private place to go. and also more times than i care to remember, i haven’t been able to make it to a private enough place and so i have had an ‘accident’. not that long ago as i was cycling to work, i had to stop in an alley and while i was ‘going’, a self righteous woman came out her door and yelled at me for peeing on her neighbours dumpster. it took everything in me not to punch her in the face. but instead, i just told her i was really desperate and she replied by telling me that i should have gone before i left the house. again, i wanted to punch her in the face but instead i thanked her for the advice and rode away. (and secretly wished that she got struck down with the worst bladder infection of all time)
this whole bladder thing effects me in so many ways. i’m terrified of going on airplanes and dehydrate myself before i get on board. as a public speaker, i often feel the need to tell my audience that i might need to go pee at some point in the middle of my address. sometimes i’ve forgotten to tell them that and have needed to leave and tell the audience that i’d be back in a few minutes. if i go to a theatre i need to sit on the aisle to have easy access to the exit. i’m constantly scouting for where the nearest washroom is. i far too often have been forced to buy a drink somewhere so i could use the ‘customer’ washroom. i’ve made my way to important meetings and have had ‘accidents’ along the way that have forced me to go home and miss these meetings. i have to get up an average of 3 times per night to go to the bathroom (i haven’t slept through the night in 10 years). this one really sucks.
5. my legs are failing me. i can no longer run or even jog. i can no longer walk for more than a kilometer (on a really good day). i can no longer stand up for more than 8-10 minutes without having to sit down.
6. i have the MS hug. it always feels as though i am wearing a girdle around my stomach that is being tightened. that tightening is again dependant on my level of health.
7. spasms. at night i spasm. sometimes my leg will straighten out and i will have no control over it. sometimes that really hurts as every muscle clenches when that happens. sometimes my whole body spasms and i straighten out and every muscle in my whole body clenches. sometimes when i sleep on my side my knees will bend and fly up to my stomach/chest and i cannot do anything about it but wait for it to end. sometimes when i stand up in the middle of the day, i can’t take a step without waiting for my legs to spasm and let me keep going. no fun.
8. MS has only allowed us the one child. cate has been the most amazing and wonderful gift to us. but we both would dearly love to have had a second child. it was simply not to be, due to the disease.
so i’m listing these things because the procedure that i will have done in exactly 2 weeks, known as the liberation treatment which is so perfectly named considering the bondage that MS has had me and my family in, has been known to alleviate every single one of these issues.
and i want it to work so desperately.
just to sleep through the night for once would be such a gift. to play tag with my daughter would be worth more to me than any money. to travel to nyc with erinn and walk all day through manhattan would be a dream come true. (which if this works will be the next thing on our list)
in 2 weeks we’ll know.
So my prayer this day is this:
Lord, while I know that my issues are so infinitesimally small compared to all that is wrong with the world today
i know that you still love and care for me and my family as much as you do for everyone and everything else.
and while my prayer still remains ‘your will be done’, I so desperately want your will to be that I get set free from this disease
thoughts on experimental health care, drug companies, MS, hope, diet soda, and God (part 2 of who knows how many)
So it’s exacty three weeks today, 21 days, from the time I will be in a hospital in Costa Rica, lying on a bed, and having the ‘liberation procedure’ done on me. And the days are going very slowly by. I’m so unable to process all of the thoughts running through my head on a daily basis. Even right now as I write I am nauseous with anxiety and anticipation of the ‘what if’s?’ On one level I have never been more hopeful for something in my entire life. There are so many good things that can come of this. I am working very hard to try and not imagine what life will be like for me and my family if in fact a lot of my MS issues get left behind here. It’s even hard for me to stay away from making deals with God that if I do get liberated, I will re-commit my body and my life in even more ways than I have already. Yet I know that you don’t make deals with God. God is God.
I’ve also ben known to make promises to myself about all kinds of things around diet and exercise. I have the most brutal habits around these things and yet I’m finding it impossible not to commit to starting jogging if I find that I can actually run again. I used to jog 7km per day 15 years ago. I actually miss it but am not really sure if that’s just my head playing games with me because I can’t currently even run a step, or if I actually really miss it. But anyway, if this works I actually think I’m going to get back at it.
But yet on another level I am still trying to keep things in perspective with the full knowledge that I might go and have this done and not be any better off than I am now when it’s all over. And if that happens, it’s going to really suck. I think this is the part I’m most worried about. While I’m pretty sure I’ll get over it and get on with life over time, I’m also pretty sure that now that my hopes are so uncontrollably high for this that if it doesn’t work out I will have an extremely difficult time getting through the dissappointment of it. I’m quite certain that it won’t shake my faith, but it sure will shake me.
But as for today, I feel like an 8-year old boy wiating for Christmas. And the waiting is absolutely brutal. So much so that I think it’s zapping the energy out of me. I’m always exhausted and working really hard just to stay focused on my daily responsibilities.
Thankfully, I have a few things in my life that are still bringing me joy. My wife, my daughter, my very good friends, and my music. My band, Midrash, have a gig this Friday night and we’ve been working hard to prepare for it. One of the songs we are playing always brings me a renewed energy. I’ll quote it here to end today’s blog.
Your name is Peace, Your name is Peace forever
Your name is Hope, Your name is Hope unending
We are Yours, and You are ours,
And all that’s Yours cannot be stolen away
This prayer has infused dome life in me these past few weeks. And I could use all the energy I can get.
so i thought i’d take a little time every few days over the coming weeks to try and journal my thoughts on my (and erinn’s) life for the past 13 years with MS, my joys and pains along the way, my struggles with discipline especially around diet and exercise, my hope for ‘liberation’, and my faith in God.
i won’t go into much detail here in the first of these blogs, but i’ll say that i have several reasons for journaling these thoughts over the next few weeks;
1. i find it therapeutic to write out my thoughts and share them with whomever cares to read them
2. i know that if one of my friends who was very sick and wanted healing told me that he/she was going to costa rica for an experimental surgery that canadian doctors disagree with, i would at the very least likely think to myself that they were filled with false hope and chasing after the impossible. or i might even go as far as tell them they were nuts. so i want to try and articulate here why i think this is worth the try.
3. i want to journal all of the deficiencies that MS has brought my way in hopes of comparing them to what i hope will be the outcome of this procedure.
4. i hope to journal my thoughts on how my life with MS has affected my faith in God.
5. i’m currently feeling pretty low and i’m not much fun to be around these days. it started last week when i fell of my bike and bruised or cracked some ribs, which then led to a pretty significant flare up of MS related issues that have caused me to need to use a cane to walk around these days, numb hands and feet that i can hardly even feel, and fatigue so extreme that i can barely focus. and for some reason, being down motivates me to write.
so, that’s the foundation of my next few weeks of journaling. our whole family boards a plane on june 21 for costa rica, and i have the procedure on june23. as far as my faith in God goes, while i often have no idea what She’s up to much of the time, my faith is unwavering and strangely enough, even being strengthened through all of this. but i must admit, if all of this is to help me grow and mature, i feel like i’ve learned enough lessons now and would be grateful if He would let up a little for a while back in a day or so with more