Pain and voices

I really don’t seem to be posting much of late – whether it’s here or one of the many other sites I frequent.

I haven’t disappeared. I have just become a silent lurking searching for their lost voice.

Perhaps you have seen it?

If you have, would you mind sending it home? It’s rather lonely here searching for expression to the confusion inside when your voice has failed.

I remember having a voice.

Sometimes it whinged like no other about my health or life in general. Other days, my voice railed against the injustices that I encountered, each one breaking my heart until it had to come out lest I went crazy. On occasion my voice sang with the beauty of the day, unable to be silent in the face of so much goodness. Those were good days.

These days, I think, it has become lost in the chaos and I have yet to hear its whisper amid the winds.

Pain has a way of silencing the best of us and sometimes that silence isn’t chosen, regardless of those who claim that we should just move on with life. In fact, these people do a disservice because they disqualify the place and purpose of pain. Pain can teach us, so long as we don’t demand it follow our lesson plan. That is not pain’s purpose.  I could write pages on the many views on pain but today that is not my purpose.

Someone once said  that “Pain is not something that needs to be justified, In order to heal, pain must simply be understood.” For some, pain’s purpose is complete when it is understood and incorporated into their story. Rather than a raw wound, the pain becomes part of the character, its lessons shaping the life it has now been incorporated into. For others, understanding the pain gives voice to action. Rather than an acceptance, pain becomes a vehicle to change.

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I’m tired.

Really tired. It’s been a long few months and this week just got a lot longer.

I’m taking a class, it’s a valuable class full of material that will be useful to know in the future. The problem – our class is on abuse. You ever want to kill a conversation quickly tell people that you’re studying abuse. It’s understandable really, abuse is disconcerting. Stories make us run the gambit of emotion from sorrow to anger with random threads of hope and, in some cases depending on where a person lies in their recovery journey moments of laughter. Laughter can be good depending on how it’s used. Even the idea of taking a class discussing these subjects is enough to put people off. All week my classmates and I have encountered enthusiastic people inquiring of our class, only to watch them walk away fumbling for words when they learn of our subject matter.

I don’t blame them, the church has a lousy record when it comes to supporting survivors of abuse, regardless of the form it manifested in. For people in an educational setting, honestly wanting to learn how to better work in the word, the confrontation of  such overwhelming inadequacy is enough to make us step back.

For me it’s been hard.

One of the things to come out of this week is that we never fully deal with abuse. To “deal with” assumes that the effect is over and while abuse doesn’t define the survivor (necessarily) it certainly has an effect. It’s frustrating to realize that some of the issues from the past may not be quite as “past” as I thought.

While I was never physically abused, there are instances where I was assaulted, sexual abuse is a part of my story, and emotional abuse can be thrown in too. It’s driving me nuts to watch as nightmares come back, as I instinctively monitor my surroundings for threats, and have to fight the instinct to flinch when people get too close unannounced.

It’s interesting, in a sad way, abuse takes away your control, so control can become ever so precious to a survivor, and yet this class shows, once again, just how little control I actually have.

I actually find it harder to sit in class, with my peers, and hear stories of abuse, wondering what they would think if they knew my story, worrying that they’d look on with disdain if they knew my story, affirm my worst fear of being too sensitive and needing to grow up. Another part of me fears that that isn’t actually my fear at all but that, if they knew, I’d been looked on with pity.

This class has been accurately described as a roller coaster as we learn theory, hear cases studies, watched Georgia Rule (interesting movie but hard to watch). To be honest I’ve laughed in this class over a funny comment, I’ve fought back tears as stories bring back memories, I’ve faced down anger at the injustice, and been fascinated at the theories (again, I’m a nerd). It’s a lot to take in.

So, where does that leave me?

I’m not sure. My professor encouraged us to self-care tonight and some chocolate and loud music hasn’t quite cut it yet so I write, whether it makes sense or not, to write makes it real. To see the words is validating and hopefully for tonight that will be enough.

“How will you know . . .”

*How will you know if I am hurting if you can’t see my pain? To wear it on my body tells what words can’t explain*

C. Blount

Self-injury has seen a lot of changes over the past years. From virtual unknown, to “hot topic”, to almost blase – self-injury has entered the public stage but is it really understood?

C. Blount’s words describing self-injury have become among some of the best known for their simple elegance regarding the complex topic of self-injury. In my own studies, I have encountered this particular quote time and time again. I’m actually amazed at the number of quotes used within studies on self-injury but then again maybe I shouldn’t be. Quotes are used to express what we cannot find the words to say on our own and few people can find the words to describe self-injury.

Self-injury flies in the face of self-preservation to those who have not walked that road. To cause intentional harm to our bodies, to risk our own safety whether in slight or severe ways goes against instincts that are ingrained in us from birth. So to come face-to-face with those who would purposely seek out pain, who are able to overcome this instinct creates confusion and fear. It’s understandable.

At least, it’s understandable until you broaden your horizon.

I’ve yet to encounter a self-injurer who has the same story. All have similarities but self-injury is an addiction that refuses to play favourites, anyone can fall to its lure and it is alluring at first. In a nut shell, self-injurers typically want to feel less or more, depending on their story  they may have sought both at different times during their journey. Because self-injury begins as a tool as a coping mechanism, before endorphins enter the picture, before the brain forgets to turn to other methods and the individual who desires to walk away finds themselves re-learning behaviours that used to be natural.

I know because this is the path I walk everyday.

I found self-injury in a desperate plea to keep fighting to wake up in the morning. I was so far within my pain self-injury wasn’t an action in contrast with my self-preservation but a lifeline I clung too.

Even eleven months after my last incident I still feel the urge. So I learn to help others who have fallen into this road and to teach those who haven’t.

Because, as painful as it is to admit it, the people I love and the faith I hold to have been some of the most harmful players in my recovery, not because of spite but ignorance.

The church can be a wonderful place of healing and was commissioned to be not only the “hands and feet” but the body, a community that supports, instructs, and corrects. Sadly most self-injurers encounter unhelpful correction or outright dismissal when they take those initial steps to recovery.

It’s funny a lot of people try and protect themselves from their inadequacy by presenting as “religious” telling those who are hurting to pray more or, in the case of people who should really just stay silent, question someone’s faith because they are struggling.

Others hold to what they know, reminding people of the consequences of their actions – the scars, the shame, the regrets, the isolation. Which makes sense, we tell people right from wrong and they should choose right. Right?

Well, I know I like to choose rightly but when you’re overwhelmed, often right, seems more self-righteous, or even more frustrating- so simple that you cannot understand why you feel the temptation in the first place.

Tonight’s one of those nights where it’s hard. I know I could talk to my fiancee but life doesn’t stop and midterms and jobs require sleep. I could talk to my friends but the fact is even now talking is shameful because people still don’t understand why I’m tempted or why I can’t just see how much “easier” life is without my addiction.

So what can we do?

The fact is most people don’t have the training to deal with the root causes that lead a person to self-injury, that’s what trained professionals are for but that doesn’t excuse us either.

What anyone who is hurting needs is simple, love. Funny, I think that may also be scriptural.

I’m not talking a sappy Valentine’s type of love either. This is a love that is hard, a love that knows when to be silent and grieve with a person but also knows when to speak hard truths. I love this quote by Henri Nouwen.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”

It’s not an easy path to walk, but seriously when are the goods paths ever that easy?

Beautifully Broken

I originally had this on another blog but as I’ve deleted it, decided to move this over here, one day I’ll go through and make it more coherent 🙂

 

Beautifully broken.

 

Those aren’t words we generally put together.

 

Society pushes to train us to see beauty in perfection, driving us on a lifelong quest to achieve an ideal which is typically not possible through natural means.

 

I’ll admit I’ve fallen victim to this mentality.

There is allure within the commonly unattainable standard. There is a longing for a visible mark of achievement, for a tangible sign of worth in a world which revels in pointing out our imperfections and shortcomings. Because, no matter how deeply we attempt to deny it, almost all of us have, at some point, connect perfection with worth, be it a visible beauty, an intelligent mind, a perfected craft, or some other ability or quality whether it is a natural quality, earned through time, sweat, and tears, or purchased with a price.

 

It’s not surprising that this shattered world has given birth to such sorrow.
My studies have introduced me to heartbreak but you don’t need to look far or formally to see the sorrow permeating our world. People are suffering.
Just look at the crises facing today’s youth – male and female – and it becomes even more clear the effects these twisted understandings have had on how we live.

 

So what do we do?

 

What a question.
So many answers seem trite in light of the magnitude of the world’s problems and the church has been equally guilty in this regard. Part of the issue is we want easy answers. We live in an instant world. If something takes too long we complain and someone invents a solution.

Have we, as a people, lost the art and beauty of wrestling through life?

Are we so far within our self-absorbed society that we no longer see the beauty and art of walking through a longer journey?

Again, not simple questions, but as I grow, I’m coming to the conclusion we don’t have the time to ignore the big questions, the deep questions, the hard questions. At least, we don’t have the time to ignore them if we truly want to live.

 

Back to brokenness, back to beauty.

 

When we reach a place where we’re no longer comfortable with minimizing or brushing aside, when we come to the realization that a life lived well and a life lived truth includes joy and sorrow, accepting a lack of knowledge and the presence of “imperfections”, and a wrestling with truth that may sometimes leave us confused, exhausted, and feeling alone but in the end  leaves us stronger. That is the place where we can begin to start see the problem as a whole.

A large portion of our society’s quest for perfection, for beauty, is found within its insistence of equating perfection to a set of human standards. This confuses me.
How can humanity, a group which has never reached perfection, determine the standard of something they don’t understand? Doesn’t that seem just a little wonky?

So, I got to thinking, what does the Bible have to say about things such as beauty, perfection, and worth?
Actually, quite a lot it turns out. Here are some highlights

When it comes to worth, the world tells us we’ll never measure up to the standards presented by media and social pressures. God says that we are fearfully and wonderfully made(Psalms 139). That’s a startling truth in light of the world’s messages. I know it’s one I wrestle with as I try to place the meaning of a life lived with a genetic illness. To be fearfully and wonderfully made means that, not only is there value, but there is worth that we have not done anything to deserve or earn. We, contrary to popular belief, do not make ourselves. We are made, and the Bible says we are made in God’s image. Interesting, how society’s urging of beauty, more to follow, often encourage us to distort that image both visually and internally.

In Romans 8, Scripture tells us that creation’s redemption (and that includes humanity) was so important that the Son was allowed to die for that redemption. The Trinity is a whole other issue but, even at a cursory glance, the idea that a Triune God would allow a third of himself to be separated a die a criminal’s death speaks volumes as to the value ascribed to a redeemed creation.

When it comes to physical beauty there is an equally contrasting view. Now, that is not to say that the Bible doesn’t talk about beauty or God doesn’t care about such things.
I can’t quite reconcile the idea that a God who would take the time to fashion the glory that is a night sky dancing and swirling with the wonder that is the Northern Lights doesn’t at least notice those things. But the concept of what counts for beauty in people is far different than the unhealthy, plastic that is pushed on us by runways and film.

Rather than showing us how quickly we can “correct” our “flaws”, we our told that God looks to the beauty of one’s heart.
Now, I’ll admit, this is a very overused sentiment and looking back at my own teenage experiences this is one that I can remember being a sign I could tune out of the conversation because all that would follow was half-hearted cliche and catch phrases, probably followed by a “God is my boyfriend” song. Oh, memories.

The problem  is that many aren’t willing to go beyond words or, maybe, the problem runs deeper and generations of being spoon-fed our world-views have left us in need of reminders regarding what it means to live beyond our words, to live with our deeds and our actions.
The way I see it, in order to truly understand where this statement has power we must live a life that cultivates a beautiful spirit.

 

As I learn what it means to live out this truth, I’m beginning to understand how true beauty is often mess,y because beauty and character often develop most clearly in times of crisis. Beauty is not something you can buy or create with enough material possessions and beauty products. We are humans not barbies (or is it bratz now? Either way, they’re both kind of scary.)

We are created beings, we are fearfully and wonderfully made and when I reflect upon the most beautiful people I’ve encountered it’s not the Hollywood star or the runway model (in all honesty, the runway model usually triggers red flags from my youth crisis lecture on eating disorders). I think of a woman who, for years, has cared for literally hundreds of young women who have been entrusted to her care as they journey in adulthood as college students. The work is hard and I’ve seen her heart break as girls reject, make mistakes, and self-destruct yet she has a grace and peace about her that draws people in and she patiently waits for these girls to return from their journeys of pain. While Hollywood may never rate her among their top ten (and she’d probably laugh if they did) I know she is beautiful.

I think of so many of my friends and dorm mates over the years who grab life fearlessly, who love deeply, who serve graciously, and learn humbly. These women are different shapes and sizes, some thrive on standing out with their physical appearance through attaining societal standards of beauty, some through their complete defiance of their standards. It doesn’t matter, it’s their heart and character which shines beauty wherever they go.

 

I think I’ll talk about perfection another day. It’s getting rather late and I get the impression it could be a tangent on its own.

 

Life is not meant to be a shallow reflection. Media has allowed us entrance into a world which can inform and delight but it has also left us vulnerable to a world where nothing needs to be any deeper than smoke and mirrors or a distant wi-fi connection.

 

If we actually want to find meaning in existence, if we want to find an identity, a purpose, a reality that can stand amid a world that is morphing and reacting by the second, we need to be willing to take a stand, wrestle through the clutter, and be willing to seek truth.

 

Life is messy but is anything less truly life?

YouTube highlights :D

Well, the weather outside is beyond frightful.

(Thank you Canada. Seriously what country has 90% of their map red with weather warnings at the same time! Especially cold related warnings, brrr.)

 

In honour of this cold snap, this little chicky is staying indoors catching up on blogging, writing, and baking.

 

Okay, okay, there should be some homework and cleaning in there too. I’ll get right on that

 

. . .

 

promise.

 

Anywho, while I’m off cleaning and working why don’t you warm up your day by watching this YouTube video of a former classmate of mine.  She’s a wonderful girl and a talented musician to boot.

 

You know you want too.

 

 

Don’t forget to hit like when you’re finished watching 😀

And Jesus left them crippled . . .

Whether you love Christianity or abhor it, the title of today’s post might just cause you to sit back and go “huh?”

Let’s face it, most faith’s like to promote all that their God can do and Christianity is no different.

The Gospels, four books focusing on the life, death, and resurrection of Christ, are filled with stories of the lame walking, the blind given sight, and the dead rising from their graves.
The narrative is full of teaching and correction but underneath those lessons rises an unrelenting hope of which these miracles give a taste.

However, even as early as the first chapter of Mark, Jesus is revealed as moving onward to other cities while people who were sick and in need remained in their brokenness while he moved forward.

In other words, sometimes, Jesus left them crippled.

But why?

How do you reconcile a God who is proclaimed to be just, who is proclaimed to be loving, who is proclaimed under so many attributes that we equate with pure “goodness” with a God who would leave people in their brokenness?

A lot of it comes down to perspective.

In today’s society we are used to instant gratification. The idea that with a push of button, the dialing of a number, or the sending of a text things will get down. With our instant rewards and results it has become easy to forget that not every event, every desire, and every process can or should be instantaneous.

Instant gratification is wonderful when you’re making coffee but with some things our bodies, hearts, and minds were not designed to take the stress and trauma of instant reward or change. With areas as difficult as change, growth, or in some cases healing, the time it takes for these journeys to unfold is often a necessary part of the process and rushing through steps or even looking for ways to jump ahead can result in devastating effects.

Sometimes, we are left in circumstances due to the consequences of either our own or another’s actions. These situations tend to make people frustrated as words like “personal rights” and “injustice” tend to come into play. All to often, we compliment our lament over these situations by crying out accusations or wounded cries to a God that doesn’t seem present but, again, perspective.

Like children, we often wish to be left alone in our actions, without rules or structure in place that would limit our freedom or threaten our individual control. We fight for our rights. Yet, when things go wrong, we use it as proof that God doesn’t care or exist because how could a loving God let such things happen? Sadly, like children, we haven’t grasped that it can’t be both ways. God is not a toy to control or a machine whose instructions can be modified or inputted whenver our desires change, He is omnipotent and omniscient. It is in his grace that he allows us to reap the consequences of our actions, no matter how painful, for the benefit.

What kind of world would we live in if consequences no longer existed? If death was the only irrevocable outcome would anyone respect one another, would anyone strive to change? Would it be more likely that individuals would be overcome by personal pleasure and that greater injustice would actually exist. Without consequences there is no motive to change, grow, or improve like it or not, humanity simply hasn’t reached a place where we can overcome the defaults to our behaviour without the help of something greater than ourselves.

Another, even less popular aspect to consider, is that sometimes the stories we’ve been given. It also grates upon human sensibilities that, perhaps, we were called to lives which were not free of challenge and pain. Pain is either repulsive or something to be mastered, the idea that it could have purpose in our life’s narratives is foreign to our clean worlds. But, does that discredit the notion? Are health and wellness religions with their cries to have more faith and you shall be healed correct or is there perhaps another way?

. . . and Jesus left them crippled . . .

In some ways, I wish that sentence was actually in scripture. The idea of remaining “less than” is galling in our society. Perfection is our goal, productivity is our mantra.

What if having a disability didn’t mean less than? What if disability was actually a part of the human narrative?

Let’s see if I can make this coherent.

In the older days of less political correctness it was perfectly acceptable to refer to an individual as an invalid.

Look at that word in valid. The very word belies society’s view that to have a disability: emotional, mental , or physical is to be less than, to be lacking in some fundamental human way, to be invalidated in your existence and/or identity as a normal, human being.

Disability, on the other hand, implies a lack of ability, which when we consider in more detail, is something every single human being can admit to possessing.

Yep, I said it, we’re all disabled.

No one is completely self-sufficient in every, single thing. there are always areas in which we need assistance and the support of our communities. It’s how we’re wired, it’s what makes us human.

My disability is physical.

However, I believe, it’s just as much of a disability to be unable to listen to those speaking, not due to deafness of the ears but of the heart.

Yes, formal disabilities may require more help and I applaud the procedures and aids which have been put in place to help those who struggle to find space within a society that strives for average. Don’t get me wrong, I will be equally grateful when the day comes where I don’t have to plan my to-do list around accessible buildings.

But, what would a paradigm shift like this do to those who were suffering?

What would it mean to recognize our innate humanness not as a weakness but as a difference to be embraced?

What would it do to our understanding of God, if disabilities weren’t viewed as God uncaring distance but as a carefully orchestrated plan which we can’t fully comprehend?

How would we change? How would we respond?

The year that was

It’s another year and we’re still here.

Personally, I’m in favour of the theory that the Mayans simply ran out of room, I mean, as my friend says the world can’t end in 2012 the Hobbit premieres in December 😛

Just kidding . . .  well actually I do have a friend who says that.

I have strange friends which is why I love them so dearly.

2011 was an amazing year overall but in order to end on a positive let’s start with the negatives.

Drivers license = no

Yep, at almost 26 still no license. Between provincial standards in a new province, dizzy spells, and other random life events I still lack the ability to drive. It’s actually frustrating. I can’t really afford to learn how, I don’t have a car to learn or test in, but you can’t get a job without one. Your automatically less of a person without one of these baby’s in the eyes of the world and it sucks.

Health = pain in the . . .

Yeah, the EDS hasn’t been great this year, not to mention December’s weekly ER trips for infections of every colour. I think it’s time to admit I fall into the majority of EDSers and am showing signs of worsening as I grow older. I’ve always know it was a possibility but somehow the reality hits harder than I imagined. I love independence and to watch even little bits fade away is painful.

 

On the flip side

 

School = I finished College (for good this time) and started my Masters

Okay, Masters studies are so much more invigorating. Yes, the idea of loans are scary but I know this is where I’m supposed to be and I can’t remember the last time learning was this much fun. Minus a certain class which I’m pretty sure I slept through for the entire week.

Relationships = Anyone else hear bells?

That’s right, In one year I finally started dating my long time friend and he proposed just before Christmas! 2012 is coming up weddings, oh the planning. On the odd chance an EDSer drops by who’s been through this any EDS friendly tips you can send my way?

Housing = On the road again.

In May I moved out of dorms after 6 long years into my first apartment. I’ll admit the quiet is nice, as is doors with locks and my own kitchen. However, I do occasionally miss the dorm and the adventures it threw into your lap. As to where I’ll be next year, well same town but another move perhaps in July?

 

So there’s a brief breakdown.

My hope is to be more regular on this site as my old blog has been hit by spammers and is annoying me.   To all who are awake and able to look at the screen today Happy New Year.

Laying an Isaac down

Pain sucks . . . Literally.

No, really, pain is one of those forces that can suck your life dry if you let it.
Whether it is your energy, your capabilities, or something else — pain is an unrelenting force.

Living with chronic pain, therefore, is understandably frustrating.
It’s hard to chase after your dreams when the act of getting out of bed seems a monumental task.
Even more insidious, however, is pain’s ability to begin sapping joy itself out of your life.

Now , to be clear, I fully believe joy and happiness as two different things. Happiness is an emotion, and a fleeting one at that. Happiness is reliant on situations.
Joy on the other hand, is more of a deep abiding peace, it’s not based on feelings (you can experience joy and sorrow at the same time not happiness though) but on a deep abiding knowledge of peace.

So, what does this have to do with me?

This week I’ve been in class studying the Pentateuch. Not to overstate things but it has been amazing!
Seriously, I can’t remember the last time I’ve had a more relevant class. That said, it’s hard to be relevant without posing a challenge or two. Passive acceptance of life doesn’t generally lead to a passionate existence it leads to status quo.
Take a class on the Pentateuch you’ll find a challenge or two.

This week, aside from the awesome connections my prof has postulated to us, one challenge which was issued stems out of the story of Abraham and Isaac. I’ve known about this account since childhood, but have you ever experienced one of those times where the familiar feels brand new? Yeah, that’s where we are.

For those who don’t know, in the story Abraham is asked to sacrifice his beloved son Isaac. Now, here’s some more background. It clearly says that Abraham was being tested. This is key. God’s not into child sacrifice. This is good, it’s nice to agree on things.

Secondly, Isaac was the child of promise. Breaking this down. Abraham was old, Sarah was old. We aren’t talking middle age couple trying for a family. These two were done. Menopause was well settled in, Abraham wasn’t exactly offering much himself either. The arrival of Isaac was not only miraculous but the beginning of God’s fulfilling of His promise to His people. On the flip side, this means that if Isaac were to perish, the long awaited promise that had driven Abraham’s entire life, the promise on which the world’s redemption rested, would be over. We could live and die and that would be it.
Now, into that God asked Abraham in a test to give Isaac in sacrifice.

So, fast forward to the future. Class has challenged us to find our Isaac’s and lay them down. This makes sense to me. Isaac’s are good but because of their value they can easily take the space intended for God. To lay these down, is a good process but not exactly a pleasant one.

I’ve been doing a lot of wondering, as a result, about what Isaac’s are in my life. You should have felt my heart lurch when my prof mentioned good health as a potential Isaac. This semester has been hard. Between health problems and feeling like I’m falling behind my peer group it’s easy to see how, for me, good health is starting to become an Isaac. This idea that if only I could get reach this imperceptible level then things would be fine. But that’s not living by faith. Ouch.

I really want to be independent and healthy. My reasons for doing so aren’t exactly pure though. I don’t want to have to wrestle through old fears of being a burden. I like controlling my own life. Living in community is messy and I’m a little OCD (this isn’t literal, kind of). None of these are good reasons to seek societal ideals of health. Even as I process, and yes this is rough thoughts, it makes sense to me that striving towards the best I can within my situation and for God’s glory is the goal I should be striving for, even if it means setting aside selfish ambitions.

It’s fascinating to me that most instances of laying down an Isaac actually increase our dependence upon this God we can not control. It’s so counter intuitive but even as I think about it I can see the shadows of my consciousness beginning to make sense of how these acts could be beneficial. That which is good for us isn’t always immediately apparent. It’s like my friends children. They often don’t understand why giving up the things the truly desire, like a day of only candy, is actually better for them in the long run. Hmmm, being compared to a child isn’t any less painful than it is true, ouch again.

Some favourite YouTube Finds

So, to balance out the last post here are two of my favourite late night YouTube finds 🙂

 

My first offering is a wonderful fanvid from one of my favourite television shows Joss Whedon’s Firefly. It seemed slightly appropriate in light of earlier comments tonight.


 

My second offering is a far more light hearted affair. Yes, these are professional musicians having a blast and goofing off together. It always makes me smile 😀

 

Isn’t it ironic

Well, I think it is anyway.

I start a blog about life with a chronic illness: good and bad, weird and fun, only to  be incapacitated for the next week due to my chronic illness.

Tonight was a bad night.

Ehlers-Danlos is an interesting enemy to fight and one day I’ll explain it better. Tonight I just don’t have the heart to do so.

I was sitting on my couch trying to focus when my shoulder and two ribs went out. I’m still not sure what it was that I did to end up in such a state but here I sit 8 hours later finally in enough control to function slightly again.

After getting my diagnosis, I realized that nights like this would become a part of my reality. EDS has no cure and I count myself blessed that nights like this are still few. However, one thing I doubt I’ll ever get used to is the crushing feeling of letting people down and becoming a burden to those I care about.

I’m sorry to start this blog off with such a sour note and perhaps I’ll post a fun youtube video or something later to make up for it (and cheer myself up). The fact is I had four friends over when this happened and all I can see is the trouble my injuries caused.

My one friend wasn’t sure what to do and I don’t blame him. I knew he was having a rough night and that was why he was over.

My boyfriend was sweet and reminded me he wasn’t going anywhere but to see the pain in his eyes, knowing there was nothing he could do to change my fate tugs at my heart too. Not to mention that some part of my brain always whispers the fear that one day he may become tired of my limitations. I wonder how many chronically ill daters struggle with this fear?

My third friend was helpful. She’s known me long enough to check my joints to see if they’re aligned and let me know when they still need realignment. I don’t always like what she says but I know she’s right.

The problem was my fourth friend. I know he was concerned about his wife and the time but to see the impatience and hear it in his voice made me cringe as I felt my presence was creating the need for sacrifice. That my being was the reasoning for extra effort and care. In essence, I felt like a burden in my own home. It’s not the first time I’ve felt this way but I wonder if it will ever lessen or if it should get easier?

I know on one hand it could get easier. My worth is not determined by my illness but by my being. I am not disqualified because of a faulty gene. Sometimes, however, it can be hard to believe this in light of the contradictory messages society loves to throw.

At the same time, I don’t think those moments of feeling a burden should get easier. Hear me out. The fact is, it’s only going to get easier to deal with these struggles, whether you’re disabled or not, as you become more secure in yourself, like I mentioned earlier. For these feelings to become easier while still wrestling through these feelings runs the risk of allowing oneself to accept the label of burden into one’s identity. That’s something I can’t accept for another person seeing their intrinsic worth and hopefully one day I’ll be able to say the same thing about myself.

Hmm, think I’m going to go pay YouTube a visit after all