Don't forget to breathe . . .

“In the quiet of the shadow

In the corner of a room

Darkness moves upon you

Like a cloud across the moon

You’re aware in all the silence

Of a constant that will turn

Like the windmill left deserted

Or the sun forever burn

So don't forget to breathe

Don't forget to breathe

We're all lifers here

No eleventh hour reprieve

So don't forget to breathe

Keep your head above water

But don't forget to breathe

Now all the suffering that you've witnessed

And the hand prints on the wall

They remind you how it's endless

How endlessly you fall

And the answer that you're seeking

For the question that you found

Drives you further to confusion

As you lose your sense of ground

So don't forget to breathe

Don't forget to breathe

We're all lifers here

No eleventh hour reprieve

So don't forget to breathe

Keep your head above water

But don't forget to breathe

Breathe....

Don't forget to breathe

Don't forget to breathe

You know you are here

But you'll find you want to leave

So don't forget to... breathe

Just breathe

Just breathe

Just breathe...

Just breathe..."

                                                   -Alexi Murdoch

            The lyrics are up for a bit of debate (mainly due to two lines) but either way this song has been playing in my head for the last few weeks, or if I'm truly honest with myself since I first heard the song on SGU (or Stargate Universe for those not of the sci-fi persuasion).

The reason for my obsession, especially of late is that this song in it's beautiful simplicity calls to me in a way I can't fully explain. I think though, in the end, one of it's largest draws is because of short one line which amidst the chaos which is life speaks to me in a way little else seems able  of late "Don't forget to breathe".

            Christmas has always been a hard time of the year for me. While I realize no family can live up to the glossed over holiday ideal I still find myself rudely shocked as years of training slip into place and I find myself living these weeks in survival mode. This year sadly enouugh was no different with my EDS acting up and my aunts, uncles, and grandmothers on the warpath, my holidays become a blur of failed expectations and desperate attempts to keep the peace. There were highlights (good ones) and some memories I will hold close and laugh over but once again looking back I am struck at how sin and pain have affected my family to the point where using that word to describe us almost seems laughable.

             Usually these aftereffects keep me down and out for weeks as I lick my wounds and attempt to heal but this year I find myself pondering Murdoch's call "don't forget to breathe". Every year I fight so hard to get through the holidays that it takes weeks for me to let my guard down again, I forget how to breathe. I can't change the past, I can't change my family but this year I will remember to breathe.

EDS and Airports

2 posts in 2 days I'm on a roll :)

After spending the day fighting off severe bouts of vertigo
(seriously vertigo is far better as a U2 song than as a symptom) I have decided it is time for some positive reflection and what better to reflect on than airports and EDS. Now don't get me wrong I have as much to dislike about airports as the next EDSer. I have yet to get through a landing without dislocating a shoulder, and the actual process of travel itself drains me for days afterwards and yet yesterdays flight served as a great reminder on how sometimes EDS can hold hidden blessings if we are willing to look for them.

If I am honest with myself I am a driven person, there is no feeling like actually accomplishing something, anything, I love to acutally see things done (even if my EDS limits that to the getting up and dressed marathon :D)
Yesterday I came to the realization that EDS has given me the gift of slowing down and seeing the world around me in ways many don't get to experience. Over the years I have learned that when my EDS flares all I can do is wait it out but while waiting why not watch the world around me. So much can be learned from observation and people are full of fascinating stories if we only take the time to listen to them amids the noise of or lives. This brings us back to the airport.

The airport closest to my school is international but the designation is a stretch. We have one lounge where everyone waits and only once in 5 years of flying out have I ever seen it full. As such I often forget some of the finer rules of flying such as no boots with metal. Once again I found myself taking of my boots with three security guards watching me. Only this time I realised that once again my ankle had decided to go out without me. Apologizing to the guards I asked for a minute to put it back which brought out a host of questions. All of a sudden I found myself presented with the opportunity to tell three guards and 2 pilots (who happened to be flying my plane, always cool to meet those guys) all about this debelitating condition and the ways it affects life. I was amazed at the intrest and sensitivity wth which they asked their questions (and I was good not to laugh when they asked if they had caused my injury by making metake off my boot, I assured them it had aready been off I just hadn't noticed). What a cool opportunity to spread some EDS awareness.

Reflecting back though I realize this isn't the first time ED has given me the chance to interact with people who, embarassed as I am to admit it, I would have walked by had I been "normal". Over the years I have laughed with children, reminisced with retirees, celebrated with fellow travellers, made new friends, learned and taught, laughed and cried with people I would never have met had I not been forced to sit and pace myself.

Would life be easier without EDS? Yes! But since I have may as well look for the little gifts it has left in its wake, the blessings which make life interestng, and the stories which are worth retelling.

New Year Resolutions

Merry Christmas one and all!

(Warning I'm still a kid at heart when it comes to this season, Christmas is so hopeful and seriously who couldn't use a bit more peace and hope in their lives)

I am back after a disasterous month health wise. If you have dislocating anything on your things you wish to experience before you die list cross it off. As someone who lives there I can firmly say it's overrated but I'm happy to report that all ribs, hips, knees, etc . . . have stabilized enough that I can start reclaiming my life again (I've given up on expecting my shoulder to stay put I'm guessing it's just too free spitited to listen :D ) and with this reclaiming and reflecting over the past few weeks (when your stuck in bed for days at a time all you can really do is homework, think, and watch tv I'm quite enjoying Stargate universe, Castle, and NCIS right now) I'm thining it's time for  change.

I have decided to turn over a new leaf and to beat the New Year's rush I shall resolve to start now. Looking back this page has contanined some good things, growth and struggle but has also contained a lot of ranting which I promptly feel bad about and then refuse to post for weeks on end. What I want is not a collection of rants, but a journey of, yes the unavoidable lows that come with this life, but also the breathtaking highs in all their forms which make this journey worth continuing. That doesn't mean there won't be some ranting (I am only human and some days I swear a good rant is better than any painkiller a doctor could perscribe) but hopefully this blog will reflect my life in that it will be more balanced.

I am currently vsiting the family for the holidays and, as usual, am feeling rather mixed about the whole endeavour oo much history and hurt for the Christmas magic to totally erase but tonight i choose to remember an event which has become a recent favourite. Before heading out for the holidays, a friend and I went to say goodby to a family we have become close too over our college years. Truthfully even going away for a few weeks is hard as these kids bring so much joy into my life and we've all become attached (I love bein an adopted Aunt!)
As such I was concerned regarding how the event would unfolded. I was surprised. Not only did all the children accept our going away and made the most of the time we had a surpirse in and of itself given their ages and developmental stages, yet in the end it was the middle boy who surprised me beyond words.

Always the rambunctious one, I have not been able to get to know him as well as his siblings, breaking as easily as I do our natures just don't mesh :)
However, on this cool winter afternoon, after they realized we were soon to dissappear, this little boy curled up in a blanket, sat on my lap, rested his head on my shoulder and together we spent some time watching tv and just being there spending time, for the first time without interruption content. The memory of that little boy sitting curled up with his sister on my other shoulder still makes me smile, and in that moment, for a moment all was right with the world.

Looking back at last week, will I remember the pain,injuries, sleepless nights? In all honesty most likely. There have been too few days of being pain free for me to not remember. But when I think back on it I'll remember laughing with friends, reading One Wintry Night to my girls in dorm, and a little boy who curled up and met me where I was so we could say goodbye.

River

It's been awhile . . .

But yes I'm still alive. Although these days it feels like just barely. That's the thing about having a chronic illness every once in awhile it decides to make itself known and you're left hanging on for the ride, such has become my life.

Lately nothing, and it certainly does feel like nothing, has been staying in place joint wise and as a result my life as of the last few weeks has revolved around pain. Today my ribs are loudly reminding me that they too are affected by this collegen defficency known as Ehlers-danlos. So what's a gal to do. Personally I would love to curl up and sleep but lately that's been an elusive dream as pain flares have been waking me up pretty much like clockwork, in other words i'm sleeping like a baby : D (whoever came up with the termsleeping like a baby I hope they realise just how often those kids wake up through the night who would seriously wish that as a sleeping arangment).
Not only that but in some ways it seems like curling up and giving in is another way of saying giving up and I just can't do that yet. Instead I wake up pop some over-the counter pain meds and head to my classes, do my assignments, interact with people and do my best to smile. Truthfully the alternative to living with EDS is not living with it and that simply isn't an option. So time for  smile and off to face the world again

Storms of life

Hurrah for a working computer and Internet connection!

Life is finally returning to some semblance of normalcy as yet another school year has begun. The last month has not been what I would consider easy but still I survive and grow so perhaps it was good.

I am very grateful to be done camp. What a disaster that adventure was and it left me far more drained than I thought was possible. I mean I knew I was supposed to be there I saw God working through the people there and yet nothing went right and my days were an never-ending blur of solitude and impossible demands that just left me wanting to scream. The thing was no one noticed that I was drowning in my own pain and the overwhelming pressure of trying to be some freaking miracle worker. I can't remember ever feeling so unhealthily alone ( and I am a proud introvert who NEEDS alone time) or so completely forgotten as the majority of people at camp made me feel. There were a few bright stars amid the storm but for the most part I would love nothing better than to forget that part of my life ever occurred. Not the best way to reflect on one's summer.

at the same time I'm mourning the loss of my time at my internship. The kids there were inspiring not because of any great talent or skill but because of there passion for life and their willingness to accept anyone where they were rather than demanding the perfection that seems so common in every other avenue of this life.

So this marks the attitude of entering school torn between the good and the bad unsure of where I live. Oddly enough I've been told already that I look more peaceful than I have in the past and how much more grounded and mature I seem. This to be honest makes me mad. I feel so confused and unsure and yet people see that as peace? I feel like I'm surrounded by expectations I can never meet so why bother trying? I know that for me the failure would be in the never trying and yet I feel defeated before I begin. My old habits are sitting in front of me like a long lost security blanket, a wall to protect me from the forces which surround me and yet I hold back out of some unexplainable desire to be whole and "normal"

I went to a dance show last night and there was this duet (?) done to the song Refusing by Stereotrap (a great song go YouTube it!) but as I watched the dancer's character go between the chains of her past and the freedom in Christ I was torn cause that's where I am. I have danced with my God and felt the freedom of his mercy and grace but the chains of my past call to me. When I watch the pain in the dancers face as those chains nailed him to the cross I see my chains doing the same thing causing the same pain as I witnessed in his face and yet I still feel like the girl in the dance devastated over the pain her choices are causing her creator and yet still unable to let go.

How do I let go.
How do I become normal or better yet whole. I'd rather be whole than normal.
When will I stop hurting the ones who are closest in my inability to explain the thoughts that come more easily in type? Do I even have anyone left strong enough to weather the storm that surrounds me?

Back Again

My Computer has been fixed and so I have returned.

Life marches on and this week has been full of revelations. In 2 days I will have reached the 4 month mark since my last cut and for the first time in 10 years I realise just how much my decisions and addictions have truly cost me. I look at my damaged body slowly breaking under the strain of my EDS which can't be changed but when I look at the injury and marks I willingly inflicted in an effort to feel, to cope, in honesty to survive I wonder at the worth and I grieve over what my choices have cost me. I will never be "normal" in my family or community. I must constantly work and choose to base my appearance in such a manner that my past remains just that but nothing drives the point home more clearly than this week.

This week I'm serving as a day camp counsellor, happily spending my morning watching over 12 1st graders who are some of the most amazing people I've had the pleasure of encountering this summer while watching my junior high youth group grow beyond my wildest dreams through serving as our L.I.T.'s. These kids (campers and L.I.T.'s alike) are creative, funny, intelligent and really just a joy to be around even if I do end up crashing on the couch for an hour once everyone is gone. It should be one of the best week's of my summer I'm having a blast and yet I wonder what would these parents do if they knew my story? These people know my passions and goals from working with their children but no one here knows me. After all this time it's still to dangerous to open up not that it;s an easy discussion explaining away the scars with honesty rather than evasion or my favourite sarcasm. Even though it's been almost 4 months I know I'm still affected. Dreams and random associations, guilt make sure that I am unable to forget my old ways.

One would think at my age, a college student and all opinions wouldn't count so much and truth be told if you knew me in real life if I believe in something watch out I will fight for it. I'm terrified of losing the ability to speak into these kids lives and have the blessing of watching these kids develop into the amazing teens and adults they are rapidly becoming (seriously do kids grow up over night these days or what?)

So here I stand at the crossroads happy but scared of a past that should no longer be given reign over my life. When did life become more complicated than scrapped knees and jump rope and does anyone know how to get back?

It's a long road this thing called life

Some saying are cliche but there is a reason for that, they are unusually applicable to life's encounters and the saying "When it rains it pours" is no exception to this rule.
Seriously how many things can go wrong in a week!
On the lower end of my week of disaster my computer died, the work computer died, I got sick again, and it actually literally rained (have to have some irony to make it a well balanced week). On the more frightening end my grades are screwed up with a clerical error potentially failing me in an important class, and although my work hours have been slashed I actually have more work to do this summer at my job (which everyone thinks is fine cause apparently "I'm a genius" you know I wish I had been notified about that change in status or at least my EDS could have been alerted so my joints could keep up with these genius demands)

The hardest part of my week by far has been learning to live at work with my shame. It's odd at my internship I'm a junior high leader working with, in my humble opinion, some of the most awesome junior highers period. I have authority and influence. Yet at my paying camp job where I'm not leadership but merely the A/V tech I'm terrified of being revealed as a former self-injurer. I mean you would think the internship holds a larger portion of terror factor and yet I find myself uncaring if they know. Maybe it's because I've seen the judgment of my camp co-workers for far less.

Thing is and don't crucify me for this, I am not generally ashamed of my scars ( gasp :D).
I know the practice is unhealthy and addictive. It cost me relationships, experiences, and in truth 10 years of my life which cannot be reclaimed. I know that because of the insidious and consuming nature of this addiction I am still vulnerable to the behaviours and thought processes which accompany this addiction. It is a path I chose and I accept that. I also know if any of my junior highs told me they were considering this route I would do everything I could to help them find healthier alternatives and avoid the hell which an addiction to self-injury becomes.

At the same time I realise that although my life is being restored and renewed through my faith and the relationships I have both with my creator and his church, those ten years cannot be relived I must live with the effects and reminders of that period of my life which isn't a bad thing. I know that many of the strongest positive qualities pointed out in my life by my friends were nurtured by watching the opposite occur during those years. This is why I can live with my scars. Just try and follow my random ramblings for a few more seconds. Scars are the physical remains of a prior event and for me although ugly my scars show that I have survived. They also serve as a reminder of why I wish to work with youth and be that positive influence that was so sadly lacking in my own times of need.

Am I a nut for not condemning myself for my scars. I don't think so, honestly I think there's to much unhealthy guilt anyway floating around and not enough honest remorse so why should I add to the problem. Will I take flak for my stand, unfortunately. In the end this is just another thread being woven through my life and as one thread it's okay if I don't fully grasp the impact on this one string in the greater tapestry. But now that I have cleared my brain perhaps I can now get some rest.

Peace