Yearly Archives: 2010

Life with Multiple Sclerosis

The story of Dion Oxford, father, husband and Executive Director of The Gateway, a men’s shelter in Toronto. Dion talks about his life with Multiple Sclerosis and why news of a medical breakthrough might change his life forever.

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august 16. 54 days post liberation

well i guess it’s time to write another update here as to how i’m doing on the MS front now that i’ve had the procedure done. it’s strange to think that it’s been almost 8 weeks since i had it done in that hospital in san jose costa rica. on one level it seems impossible that so much time has passed but on another level it feels like it happened another lifetime ago.

some good news, hot off the press, is that i will be getting re-tested on aug. 25 in barrie for ccsvi. the reason why this is good is that i’ve been wondering if my right jugular vein that was opened during the angioplasty i received is still open or if it has re-stenosed. the clinic in barrie that did the original test, under the strong and heroic leadership of dr. sandy macdonald, has put out a call to people who have been tested there and have gone abroad for the procedure, to come back in to be re-tested to see if there have been any significant changes. i am so thrilled about this as it will give me information that i am desperate for as to if the procedure has remained successful. (as an aside, if you’re donating to MS this year, i’d ask that you give to doctors like this for their research and not give to the MS society as they clearly are not listening to the pleas of those of us who live with MS.)

as for how i’m doing, well i’m doing quite well over all. i’ll admit that there have been a few discouraging weeks where i have had difficulty not focusing on the things that i didn’t get from the procedure that i desperately wanted. my hands and feet are still as numb as ever and for whatever reason, even though i had long come to grips with the assumption that i’d never get the feeling back in those areas, i found myself deeply lamenting that this did not change for me. i also struggle to walk very far or stand up for very long. i’ve finally figured out how to articulate what happens to me when i walk or stand for long. i feel like i’m getting heavier. i stand or walk and within 10 or 15 minutes i feel like i’m 400 pounds and that the earth’s gravity is sucking me into it like it’s a magnet and i’m a huge chunk of metal until i have no choice but to sit down.

but thankfully despite those things, the discouraged period seems to have passed for me.

i do think that some subtle improvements have happened on the bladder front. i used to have to get up every night like clockwork at 2am, 4am and 6am to pee. i seem to have eliminated the 4am visit. that’s pretty huge for me. now i’m not out of the woods on this front of course, and the 2 visits i made to dumpsters today while cycling were testament to that, but i seem to have made some progress there which i am thrilled about.

the best and most significant improvements remain in my balance, strength, endurance, and fatigue. i’m hitting the gym every day and even added another 90 pounds to my leg presses this morning. i’m walking in a straight line quite regularly without toppling over. i’m cycling like a madman and have done several 40km rides thus far (i have hopes to do 50km on the weekend and am aiming for 100km before the end of the summer) i’m getting through my days at work without feeling like lying down on the floor in my office at 2pm to sleep. i feel strong, awake, and balanced. and the best thing that could have happened today happened when one of the guyswho lives at our shelter looked at me and told me i looked strong and healthy. he went on to say that whatever i’m doing, keep doing it as ‘we need you here for a long time’. how great is that.

last week our family went to a family camp in the muskokas. it was there that i learned something new about my body. we swam every single day in the most beautiful, refreshing, muskoka lake. and i know that the swimming made me stronger. this camp, camp koinonia, is built on a hill and you can’t go anywhere there without either walking up or down hill. for 4 of our 7 days there, i felt incredibly strong and tackled those hills full rip. and usually it was on the days when i pushed it hardest while swimming. so in light of that, i will be starting with a new physiotherapist who works in a place with a pool. i’m hopeful that this will lead to some even newer improvements. we shall see.

one last thing. there is a christian tv show called 100 huntley street that came to our home and filmed our family before we went to costa rica and asked us about our lives with MS and our faith in light of that. they will be airing that story on sept. 10 and i will be in the studio live that day to give an update as to how i’m doing.

back to koinonia to finish this post. during the week, one of my favorite people in the world, david tiessen, did the speaking. each morning, the dozen or so couples that were there gathered for one hour to discuss a christian theme. david chose to speak on the topic of wisdom. so every day, we dug deeper into the topic of the kind of wisdom that was modelled to us by Jesus when He walked amongst us. the kind of wisdom that seems foolish to most. the kind of wisdom that demonstrates leadership by servanthood. the kind of wisdom that demonstrates strength in weakness. the kind of wisdom that gives up your life for your friends. the kind of wisdom that is only found in the bruised, broken, battered body that was strung up on a cross.

so as is my tradition in ending these posts, and in light of what i was reminded of regarding wisdom last week, i will end in a prayer;

Lord Jesus,
i have been pittying myself because of my broken body and have questioned you for letting this happen to me
and you answered my prayer by reminding me of your own battered body and the beauty that is found there
help me to continue to embrace the wisdom that can only be found in weakness
and thank-you for hearing my prayer

amen

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july 21. 4 days post liberation

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

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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.”

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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

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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

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june 30. one week post liberation

well tomorrow is canada day. we feel so far removed from all of that these days. i’m not sure but i don’t think i’ve ever been out of canada on canada day. oh well, we’re surrounded by canadians here so that’s something i guess. and today a newfoundland couple and their little boy showed up for liberation. the dad has had MS for 19 years and he’s ready to be done with some of the issues. so i cranked up the newfy accent this afternoon and chatted with them in hopes of making them feel a little less freaked out then they looked. it’s their first time out of canada and they were still trembling from the crazy traffic they experienced on the way here from the airport. good times.
anyway, today was another slow and low day for us and it was beautiful. we sat by the pool all day and even though we’re in the rainy season, it didn’t rain at all.
i had another great physio day with very obvious improvements in my balance. and i was on my feet a long time today around dinner time to see if my endurance had increased and i was pleasantly surprised to have not felt the usual exhaustion once i finally decided to sit down. so we’re gradually improving for sure. still lots of room to improve but i’m without question in better health than i was a week ago. i feel very good about it all.
i don’t have much else to report on. cate is loving it here. she’s discovered calvin and hobbes and when we read it to her she guffaws with laughter which makes me and erinn keel over laughing ourselves. we’ve laughed so much while we’ve been here. that in and of itself has been as good a therapy as we could ever pay for.
tomorrow i go back to the hospital for a checkup with the doctor. i have no idea what he’ll do but i hope it doesn’t involve any needles. i have to inject blood thinners into my gut twice a day, and when i was in hospital i felt like a pin cushion. but the most pain i’ve had in this whole process was ripping all the bandage tape off of my body. let’s just say i used to be a lot hairy-er than i currently am thanks to the stickiest tape i’ve ever experienced. they couldn’t have welded the bandages on me any better.

ok so i will once again pack it in. it’s not the same tranquil night by the pool as usual. it seems it is party central here tonight. so my usual calmness over my evening blogging session is not quite here tonight. but it’s all good.

my comforting passage of the evening comes from isaiah 40 again tonight;

“Even youths grow tired and weary,
and young men stumble and fall;

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.”

Peace

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june 29. 6 days post liberation

well i’m kinda fried right now from 2 very long days so i’ll write more tomorrow.

but as for how i’m feeling, i’m very certain that my balance and endurance is definitely improving. and erinn reminded me that my fatigue issues seem to have really diminished but that’s hard to tell in light of how wonky our schedule is these days. i’m still numb in my hands and feet and there doesn’t seem to be much improvement on the bladder front. but it’s still early days and patience is a virtue, right?

all of a sudden i have a kings x song from their faith, hope, love album running through my head;
‘patience is a virtue, but she won’t always wait’

anyhoo, we did see a part of creation today that we never dreamed we would ever see (and i wasn’t referring to the costa rican traffic but that too was harrowing and our survival was a slight miracle). for that i/we are grateful.

so my prayer, to the creator of so many wonders, to end this day is again;
thank-you

shalom

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june 27. 4 days post liberation

i’m here at my nightly spot by the pool enjoying the cool evening tropical breeze. life is a gift.
i don’t have much more to report than my status update (facebook) from this morning. i could not walk in a straight line yesterday, one foot in front of the other, without my therapist having to hold on to me to prevent me from falling. today i did it almost effortlessly, without any assistance, and quite a few times. the gang i was with were applauding as it was an obvious breakthrough to everyone. high fives all round. i felt emotional but kept it together. can’t cry in front total strangers…erinn was getting cate ready for the day but had they been there i’d certainly have lost it. what an emotional roller coaster. i think an addition to this whole process might be regular access to a shrink as well as the physio.

it was sunny and warm all day here and we spent the bulk of it in or by the pool. the world cup was on in the background (this place is soccer crazy which makes it very exciting. and the spanish commentators kick the british commentators butts) it was a very good day.

tomorrow after my 7:15am physio session, we board a van with our new canadian friends and head off to arenal volcano for 2 days (one night). we’re really looking forward to this. there are hot springs which are apparently shockingly beautiful. we’ll also spend time on the beach of the pacific ocean, eat traditional costa rican fare, wander through a small village, and our hotel room will apparently overlook an active volcano. we can’t wait.

so i have no idea if there is wifi there, so it’s possible this will be the last from me until tuesday evening. we’ll be sure to post some spectacular pics then, and bring a health progress update as well.

we’ve finished one week here and are missing the comforts of home already. we are looking forward to a long, uneventful, and boring summer once we return but before then, bring on costa rica. we have two other day trips planned before we leave. one will consist of a canopy ride over the rainforest along with a boat ride on a river through the forest where we will see monkeys, tropical birds, and tons of crocs. fun stuff. the other will be a tour of another volvano and 5 falls which are supposed to be mind blowing. then we will visit a butterfly garden with 20 dcfferent species of butterfly. this was for cate but i’m secretly excited about that too.

no social commentary from me tonight (though i’m biting my tongue)
my prayer remains;
‘your kingdom come, on earth as it is in heaven’.

i expect another glimpse of the wonder of that kingdom tomorrow

shalom

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