New developments

This is not the post I wanted to write.

I'm still hanging onto my goal of running a half-marathon in a little under 6 months, but unfortunately it looks like my training won't go nearly as smoothly as I once thought.

I had it all planned out - adding 1 kilometre to my long runs every other week, I'd have lots of time to make it to 21 km.  Two weeks ago I ran 11km on a treadmill at my gym.  The week before last, I could only manage 8.  Last week I decided to get all geared up and outside, but after 1.5km I had to turn around and go home because of sharp pains that rippled through my lower abdomen with every footfall.  I didn't know what it was, exactly, but it was low and up my left side, which meant it was in my colon.  I've been told I have left-sided colitis, which means if I draw a large L on my lower abdomen I'm basically tracing where my disease manifests.

When I was first diagnosed, I thought - oh, well that's crummy, but whatever I'll take medicine and the bleeding will stop and hey back to normal!  I had no idea that 'life-long' meant 'for as long as you're alive', not in any real sense, and I didn't know it could have an effect on how I felt that wasn't centred just to my 'guts'.

Turns out that tired, sick feeling I've been walking around with hasn't been the usual attempts to side-step whatever bug-de-jour is chasing around the school halls - it's the UC.  And it turns out that high-impact exercises like running can cause a whole lot of discomfort.  Full disclosure - I'm pretty sure it was gas on the weekend that caused that pain.  But since when is gas so bad it feels like needles, and wakes you up in the middle of the night so that you can desperately take child's pose close to the toilet in case you fulfill the growing impulse to throw up?

A fair bit of crying has happened in the last couple of days.
That's the bad news.

The good news is, I'm determined.  I'm going to find other ways to get high-cardio exercises, and see if I can't get myself through this rough patch, often called a 'flare' by other UC sufferers.  They don't last forever, I'm not sure how to make it go away but it won't be this bad forever.  I'll try my very best to keep on with my goal to make the half-marathon in May, but at the very least I'm going to do my very best to be good to myself.  Some nights, like this one, it might mean that I stay home and put on my onesie and ride the waves of post-dinner nausea with my dog on one side and my partner on the other.  Others it might be getting on the treadmill (actively NOT comparing myself to the woman beside me who has been on it for 45 minutes with no walk-breaks) before I head over to the testosterone pit aka weight-lifting area of the gym.  Maybe I should just write a post about how much fun that is.

Anyway - to those of you who keep reading, thank you, and to those of you who would like to know more about ulcerative colitis, there are a myriad of great websites online - but here are a couple I've read through so far:

http://believeucan.ca/
www.ccfc.ca/

It's hard to ask for prayers or even well-wishes, though they are appreciated, because although it might be a small thing, it can feel like a lot to receive.  I am, however, going to ask for them.  I have many, many blessings in my life, but I'm a little scared.  So, in advance, thank you for any kind thoughts or good energy you have to spare.

- Kate

The great monster dash of 2013!

So it's been awhile!  Honestly, longer than I intended.  As you can see I've now put a link to a PayPal account and fundraising thermometer on the right side of my blog here, but please - wait before you donate!  The reason why I delayed this post is related to why, so please read on (or skip to the bottom, whatever).

Mah gear.

Last weekend I ran a 10 kilometer 'race' (in quotation marks because it wasn't about speed) with one of my closest friends in Toronto: the Monster Dash!  It was my 2nd time running a full 10k, and I felt ready for it, if not a little nervous.  My running buddy does that distance on a regular basis, and I was only just worked up to it. 

I'd been feeling some pain in my lower right calf, and after looking it up realized it was likely related to my achilles tendon.  My friend had found a product called Kinesiology Tape, so we both tried it out.  Worked like a charm!  I picked up a simple brace for a knee that was complaining as well, and I think it helped provide some good support too.

We were 'Team Doin' It!' and boy did we.  Click for larger!

We traveled to the Holland Bloorview Kids Rehab Hospital that hosted the event and took in the sights of various characters - it was a Halloween event!  There was a kids' "Spooky Mile" and a 5k, and most of the really serious costumes were seen on those runners.  Those of us doing 10 didn't want too much going on!  We opted for bacon and eggs - simple and runnable, and surprisingly popular?  We got a lot of "Hey bacon and eggs!" calls.  Yeah, we were surprised too.

Just before we started.

Crossing the finish line!

The race mostly took place in the dark, and after the sun was down for a while, the temperature really dropped.  I struggled to finish up a rather steep hill that for some crazy reason was left towards the end - specifically I started to experience some pretty sharp pain in my right hip.  This is where I reveal the not-so-great news: last year I was diagnosed with ulcerative colitis, and while I knew it affected my 'guts', I didn't know that it can also have other symptoms.  I'm not 100% sure yet, but I think one of them might have shown up in me, and it can cause pain in the joints.  I'm going to see my specialist this week, but in the meantime running is painful.  I ran another 10k today and was fighting not to limp up any sort of small incline.  For this reason I was waited to write this entry, in case I get bad news from the doctor, but I finally figured I might as well share the experience and just hope for the best! 

Reveling in our victory.

It was tough to get through the end of the Monster Dash, but thanks to my stubborn streak and my friend's amazing cheerleading, we did it!  Our time didn't even stink that much, considering I was pretty slow!  It came out to about 1:08, if I recall.  And we got awesome medals, which double as beer bottle openers, for the record! 

I was really proud to finish another race, and to push through my discomfort.  My hope is that with help from experts, I'll be able to find ways to work with my condition and still finish the half-marathon in May.  I'm hesitant to ask for donations yet though, until I know if it is still a goal I can keep.  I will definitely keep all of you posted!

Thank you so much for reading, again, and wish me luck!

The wonder of the ordinary

 “It’s a gift to joyfully recognize and accept our own smallness and ordinariness. Then you are free with nothing to live up to, nothing to prove, and nothing to protect. Such freedom is my best description of Christian maturity, because once you know that your “I” is great and one with God, you can ironically be quite content with a small and ordinary “I.” No grandstanding is necessary. Any question of your own importance or dignity has already been resolved once and for all and forever.” 
― Richard Rohr

I mentioned in my last entry that Richard Rohr is one of my favourite authors - not just religious authors but authors period - and that I would come back to him.  When I was grieving the most intensely, mostly after Megan died but sometimes before, I found comfort in the moments when I would turn to his writings and in those few minutes, deliberately to God.

I'm a Christian, and a follower and member of the United Church of Canada in particular.  I haven't been to church in a little while, specifically after a minister I had connected with retired, and I won't lie - sometimes it's hard to feel that need for community when I'm surrounded by so much love in my everyday as it is.  Where my faith has done the best by me, however, was when my sister first died.  I remember feeling the immense sadness one would expect, but not anger - and for that I'm so grateful.  I can be quick to anger as a person, I think it's part of my disposition, but at that time I didn't.  I was so sad that she was gone, perhaps more sad that she'd had to endure a debilitating condition before-had, but I felt no anger towards God.  If anything, I felt thankful that she passed in a peaceful way.  Her stroke could have come on the subway, or at a friend's house - anywhere other than in her bed, in her sleep.  That in itself felt like a tremendous blessing, and perhaps more than we'd been expecting.

I would never want to say that we received this blessing because my family is somehow 'special', or because 'we prayed' for it to happen - not only would that reduce the mystery of God down to some strange give and take relationship, but also insult the millions of people who suffer each day or seemingly no good reason.  I think people sometimes struggle with God because they think of their lives as either being deserving of good things or not - but if bad things happen, what did they do to 'deserve' it?  I firmly believe the answer, either way good or bad, is: nothing.  We live, we try, and by the grace of God we take what comes our way as best we can.

With this in mind, I have been running without any ideas of 'specialness'.  I feel very ordinary, in fact.  A year ago I remember hearing a radio commercial for a local DJ asking people to sponsor her when she would run the Toronto half marathon, and she said, "20K, wow," at the thought of the task ahead.  At the time I remember thinking 'wow' along with her, and that it was quite the feat.  Now that I've made this my own goal however, and started to plan out my training, it doesn't feel so special.  It just feels like a thing I've committed to doing, and by my own hard work and the grace of God, I'll do.


I've been trying to run 3 times a week (two short runs and one long) with 2 gym visits somewhere in between, and things were going great!  But then I got promoted.  Hurray! 
Wait, where did my time go?  It was pinched before, but these days, it seems to be slipping through my fingers even more.  I'm going to do my very best to keep up with that commitment, but sometimes it's just so much easier to sit home with some tea and cookies - not to mention a very warm boyfriend and snuggly puppy-dog. 

Sometimes that lack of 'specialness' means sometimes it's hard to find the drive necessary to get out there and put in a workout.  'Who cares, it's just me!', after all.  Well, what if 'just me' is a good enough reason to feel great?  

I ran 9k yesterday - my longest ever.  I made it through a lot of self-coaching and texted-cheerleading from one of my best friends.  I'm proud of myself, but I'm left with sore knees that are reminding me I still have a long way to go.  I had a feeling early on that this would be a great physical challenge, but perhaps even greater will be the mental challenge.  The challenge will be in finding a balance between my own ordinariness and my own ability to do something special.  Perhaps if I protect neither, but work on finding harmony between them both, I'll find the mental energy to persuade my physical body to keep going. 

In two weeks I'm going to be running in the Monster Dash with my same cheerleading bestie, 10k in the dark!  I'll update with pictures, I promise, and perhaps less philosophical waxing-on. 

Thanks for reading, and of course for all of the demonstrations of support!  People tend to downplay what a kind word or two can do, but they can have amazing effects.  A small, ordinary gesture - truly made beautiful as even a small reflection of our divine belonging to true love.  For this I have so much gratitude, and with this in mind, I'll keep lacing up my shoes.

Reasons For

I think I've been able to isolate why I've taken on the challenge of a half marathon and decided to do it - my 'reason for doing'.  It's really about a reason for being.  I know that this might make it sound like fitness is my main 'raison d'etre', and my primary focus in my life: which is not the case.  What I mean is that for me, working out has become a way to be - in the moment; connected to my own body; and sometimes, connected to my sister.

Sometimes it can be very energizing to remind myself 'why' I'm doing the training I'm doing, but sometimes it has the opposite effect.  When my sister passed, in the months to follow my parents and I got into the habit of starting conversations with 'how did you sleep?'  My mum was the first to notice and remarked how obviously, for all of us, our sleep had changed.  Grief drains you, it takes every part of you and tries its best to suck energy from wherever it can - but with time, it begins to ease off.  Unfortunately it can also create a quick and powerful feeling of exhaustion when it hits at a particular moment, and I've found myself struggling more than once on a run when a memory suddenly brings with it a feeling of sadness that latches onto my ankles and tries to get me to slow down, or stop.

I went for a 6km run on Sunday this week, and a song came up on a new playlist I'd downloaded and was trying out for the first time that immediately tried to weigh me down.  My sister was a devoted fan of the long-running series 'Charmed', and although it wasn't necessarily my cup of tea, we sat and watched every single episode (she had the DVD collection) together over the span of a couple years.  The opening song was 'How Soon is Now?' by The Smiths, and I'd randomly downloaded a remix of the original version.  As soon as I heard the lyrics, months of sitting on my parents' couch in their basement came back to me, and I had to smile.  My sister and I didn't have a lot of things in common, we didn't get the chance to grow into our own women and get over childhood disagreements through adult friendship as most siblings do - but we watched a whole lot of television together in that basement.

I was happy to have a reason to remember those bonding experiences with her, but of course along with it came the sadness.  My first impulse was to try and push it away so I could keep going, but instead I remembered the value of confronting that feeling and letting it flow through me.  I did, and I might have slowed down a little, but I kept going.  I tried to tell myself that this - this feeling, these memories, her tribute - is a big reason for my being in that moment.  I was kinda tired, very sweaty, but I had put myself in that moment for a good reason.

That day my mental coach was assisted by the words of Louis C.K. (comedian and increasingly, smart fellow) who explained on a segment with Conan O'Brien why he wouldn't give his kids smartphones: he wanted them to have moments of feeling alone or sad, and learn how to just deal with them, instead of letting themselves be distracted.  Not only did his delivery make me laugh, but it hit home as well, and reminded me of Richard Rohr, whose book "Everything Belongs" was massively helpful when I was grieving the mostly deeply.  I'll mention him again in the future, I'm sure.

Sometimes, when all I can think about it how long until I can take a short walking break again or how many more frigging burpees I have to get through or how many more pushups I have left, I get a bit more energy when I think to myself: you have good reason to be doing this.  What I'm learning, and why I keep sweating and aching and pushing, is that in those moments I like how it feels just to be.

Raising Awareness

I always struggle with turns of phrases that have become cliche.  They've transformed from clever spin for a reason - they're overused because they're constructed just right and it's hard to think of anything better.  When these things are first written, they catch attention and can even motivate people - curiosity, questions, maybe even into action.  They have force, but every time it's repeated some of that force is left behind.

"Raising awareness" is one of those phrases, for me.  I worry that throwing it out there might mean that my attempts to do so will be overlooked - or more likely, scrolled past.  And maybe so, but it's still a good phrase.

Almost nobody that I've every spoken to in a bit more depth about my sister's illness has known what mitochondrial disease is, and I think only one or two doctors have ever recognized 'MELAS' by name.  I find these interactions difficult, not only because I find the full acronym hard to remember (still memorizing it!), but because even going so far as to explain it a little feels a bit like unbuttoning my shirt and revealing the scar over my heart.  In early days it was too red and angry for me to trust anyone but the closest friend to see and talk about, but as time passes it fades.  Sometimes, and I'm almost ashamed to admit this, I forget it's there. 

So it's difficult, when I decide to answer an honest question with an honest reply, and I'm only met with blank stares.  I don't blame anyone, certainly, but this is part of the reason why I'd like to give the curious a chance to learn a little bit more about what I'll be running to support. 

The UMDF is an awesome resource and great place to start.  There is a Canadian version of the site called MitoCanada, and although I've found they have a slightly less extensive variety of materials, they work to support Canadians who are living with mitochondrial disease.  I would like to support both organizations on my run, although each is funding important research projects that can make exciting differences.
 
To give a brief summary, from the UMDF page:

      "Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."

As I understand it, at least with MELAS, wherever you have a higher concentration of affected cells, you have the greatest number of symptoms (I am open to being corrected on this).  If like me you have affected cells, but there seems to be no great concentration or effect on a particular body system, you can go through life totally unaware that you technically 'have' this condition.  One of the reasons why mitochondrial research is so needed is that there's not that much of it out there, yet.  There is still so much about it that is not understood.

My 21-ish kilometers, and this blog, may end up being a pebble dropping into an ocean, and I'm not going to lie this thought has stopped me from trying anything like this before.  That, and the scar was still too red.  But thanks to the inspiring actions of those around me I've realized that though I may not be able to do much, it's still something.  Even if I can only 'raise' this awareness about as high as my own two arms can reach or my meager number of facebook friends can potentially read, it's at least a little higher than it was before I started. 

First times

I went for a 5km run today for the first time.

                To amend that – I’ve been on a lot of 5km runs, but always alone and in an effort to finish about as quickly as possible.  To get in a cardiovascular workout and burn a few hundred calories, that’s always been my aim.

                Today I went on a ‘run’ that was 10 minutes slower than my average 5km time, and I immediately went out and ate a big breakfast at a greasy spoon, but it was one of the best fitness experiences I’ve ever had, because it taught me something.  I enjoyed running with others, learned that, and it felt good to show up in support of an important cause (Toronto Sick Kids Hospital, in this case).  I learned I like the feeling of crossing a finish line – and I learned that a dream I’ve had for a little while now is something I am ready to make into a goal. 

                I want to devote some time and energy in my life towards raising awareness about Mitochondrial disease, and fundraising to help support research into a field that is beginning to increase in medical importance.  My sister died of MELAS (Mitochondrial Encephalopathy, Lactic Acid & Stroke-like episodes) in 2010, and not long after I learned that I too am carrying around a percentage of mutated mitochondria in my body.  The difference between her and I comes down only to symptoms – I seem to have none, and she had many.  As a result I feel that I have been given a chance to take action, and use this body to do so.  I have the potential to be strong, grow in endurance, and live a long life, all of which are things she was physically incapable of being thanks to the condition with which we were born and which developed in her. 

                With all this potential resting inside me, I’ve known for a little while that I wanted to follow in wake of friends who have devoted time and energy towards using their own physical potential to raise awareness and money for causes close to them.  One friend mountain-climbed in Peru with sponsors behind her, in order to commemorate her mother who had passed away from cancer.  Another learned her husband had caught the signs of Leukemia just in time to start his life-saving treatment and began fundraising for blood cancers so quickly it made my head spin a little.  As a new mother she committed to running a half-marathon and sold self-designed t-shirts, and the first time she did this I remember thinking, “I don’t think I could handle a half-marathon, that’s just amazing.”  The second time she announced she would be running I had been working on my own fitness for some time and thought, “That is so impressive...I wonder if I could train for it successfully like she did.” 

                When I crossed the finish line today I realised that I wanted to keep going, and that I want to put a deadline on this dream to transform it from potential into reality.  I want to run a half-marathon on May 4^th 2014 as my first public step on what will be a life-long journey of dealing with MELAS, and hopefully raise both awareness and money that I can give to the UMDF (the United Mitochondrial Disease Foundation), who support research and families dealing with Mitochodrial-related illness. 

                I read an article today that rang some hard truths about (the general unhappiness of) Generation Y, and I hate to admit that in the checklist at the beginning I was able to tick off about half of the criteria.  In my defense, every other blog I’ve ever started was abandoned within a year (if not much, much sooner) when that earlier excitement over potentially having my ‘specialness’ recognized gave way to the realization that this was not only unlikely but pretty unnecessary.  I know this is yet another blog, but this time I’m doing this to try and stay committed, accountable, and reflective in my journey.  When my sister’s health was really deteriorating, and after she first died, I used my tumblr account to help process my feelings in short journal entries.  They helped more than I realised at the time, and unsurprisingly, as my grief has become less intense and I’ve been blessed with some astounding good fortune in recent years, the need for that reflection petered off.  That being said, I’ve been starting to feel that while the sharp and powerful need for an opportnity to reflect and express myself (grief, uncertainty, anger) has dulled, I should still try not to ignore these feelings and thoughts, or pretend they are all in the past.  I’ve also been feeling that taking time to chronicle good things in my life should be done as well, to help ensure they are never taken for granted and so I can reflect on those memories with a bit more clarity in times of future need. 

                So that’s what this blog will hopefully be: a project on tackling challenges as they come (as I’m sure they will as I train for this athletic event), self-reflection, and realising potential.  I’ve set the goal.

First written on: Saturday, September 14th.  Committed to publishing & my goal on: September 18th (slightly cold feet, okay?!)