Having an Unseen Disability

Greetings, Loved Ones!

I threw my back out on the day after my last post. I'm in pain and have been generally unable to walk for about the past two weeks. I am writing this article from the floor of our apartment where I've had some time to develop my thinking on having an unseen disability. I wanted to share it with someone before I drive myself nuts, so here goes...

As some of you know, I have pretty severe scoliosis. My spine is malformed to the shape of an "S", containing two abnormal, 3D curves that offset the rest of my body. My left leg is longer than my right, my right shoulder is set higher than my left, my rib cage bulges visibly on one side and my hips aren't even; all this gives my body an overall thrawn and off-kilter feel. Now, keep in mind that up to 90% of diagnosed cases of scoliosis are minor enough to avoid both bracing and surgery; unfortunately, I represent part of the other 10%. For this 10%, I dare say, scoliosis can be quite the affliction. (If you'd like to read more on scoliosis, this is a great article (if clicking doesn't work - go to www.scoliosis-australia.org/scoliosis/about_scoliosis.html).

As a matter of fact, I'm going in for X-rays this weekend to have my scoliosis re-evaluated due to how horrible these last two weeks have been. If you wouldn't mind praying for me, I would be so grateful - the doctors will decide whether spinal fusion surgery should be performed. It's a high risk/high reward surgery and I'm hoping it won't be dubbed as the only option for my particular case, especially considering everything that ensued after my last, much more minor surgery here in Australia. So, if you think to, please pray for me.

So now that you know where I'm coming from, here's what I want to say...

My disability is relatively unseen; no one looks at me and thinks "oh - she's disabled, she needs help." In some ways I'm thankful for that because it means I don't have to endure the painful side of attention people with more visible disabilities are stuck with. The down side is that, in truth, I do need help. I have severe chronic pain at the best of times and at the worst (like in these past 6 days), I end up having to lay flat on the floor for up to two weeks. People often say to me "oh yeah, I have a bad back too - I totally feel ya." Now, I love when people try to relate to me as much as the next gal, but someone with the classic "bad back" telling me they know exactly where I'm at seems to me a bit like a person with a broken toe ranking themselves on the same level as a person with a broken femur. Maybe they both can't walk quite right, but the toe guy still doesn't fully "get it."

In the past weeks, I've had several conversations that have exasperated me for precisely that reason. Typically they go something like "Hey, want to go shopping with me tomorrow?" "Actually, my back is out and I'm in a lot of pain. I won't be able to make it." "Oh... Want to go in two days, then? Surely it's not THAT bad." I view conversations like this as the epitome of the blatant disconnectedness between seeing me as someone with a disability and seeing me as someone who just needs a pep talk. And I've wondered if this would be helped by actually wearing my brace again. When I was walking around in a moon boot for my broken leg, everyone was understanding to the point of me having to convince them that "no, really, it's okay, I can walk to the other side of the street on my own" and "that's okay, I'll be fine to stand for ten minutes, but thanks!" Now, granted, that level of incessant consideration can become exasperating, but it still beats the pep talk approach by a long shot.

So all that to say, when we come across disabilities and especially those that are unseen, perhaps we should alter our standard social interaction template and try something like this instead:

1. Let the disabled person decide how disabled they are or aren't -that's not our territory to encroach upon.
2. Seek to understand their experience rather than to relate with your own.
3. Accept the uncomfortable feelings that often come with talking to a person with a permanent physical problem.
4. Resist, at all costs, trying to solve the problem with a pep talk.
5. If you're at a loss for words, try something like: Wow - that must be so difficult. I'd love to understand better if you'd be willing to share more.

That's all I have for now -- or at least, that's all that's safe to permanently immortalise on the internet. Thank you to all of you who have supported me in my wavering health and who continue to do so. You are all so encouraging to me! I will keep you posted after I know what our next steps are.

God bless you all.

Much love,

Anna Click Here to Read More..

Finally at Home

Greetings, Loved Ones!

Well, here we are again: me, sitting in the seat of "I've taken too long to update my blog"; you, sitting in the seat of "yes, you have."

The problem is that I find blogs so dreadfully impersonal. I can articulate whatever nonsense I'm convicted about at the moment and you have to listen. The truth is that I am just so much better at communicating one-on-one through emails and letters. Regardless, I can't write one thousand and some personalized emails however much I would like to and I am against mass emailing, so here we are.

I thought I would open up the windows of our life and give an update to let everyone have a peek inside!

So. We bought a car and it has manual transmission which means I am learning how do drive in the right of the car on the left of the street with my left hand and both feet. How's that for a task! Luckily for me, Australia takes Americans at their word for knowing how to drive and thus I have already procured an open driver's license for myself. Might I add: it takes Australians about three years of training to get an open license and I, with proof of my US license, got it immediately. It took me only six months to get my US license -- all this goes to say, for better or worse, I got to skip out on about 2.5 years of training.

In other news, in the past months I've had some more medical woes and 6 weeks ago I was diagnosed with Poly Cystic Ovarian Syndrome (without the testosterone imbalance) and a severe iron deficiency. I wish I could have told more of you about it while it was happening but the truth is the possibility of being pregnant had me a bit "non compos mentis," if you get my meaning. Anyway, I'm on medication for the iron deficiency - all who are keen to tell me to start eating meat again, feel no need as it wouldn't help my particular case - and I'm at peace about my cyst filled insides. So, that's where we stand now! For those few who knew before, thank you for your support. For all who know now, thank you for your support! I will say this: it has been very hard on me to feel as though I'm degenerating already and at an alarming rate. So, thank you for your prayers.

As it's mid-Winter here, every day is warm and balmy; 75F is the average temperature. I try to spend at least three to four hours daily enjoying the outdoors whether it's for exercise, exploring, time with myself or with Jesus, or otherwise. I love every moment of it. I've spotted sea turtles, I've seen many a giant manta ray leap from the sea as if trying to fly, I've pet many a puppy on the boardwalk. I'm meeting new people all the time and though my preferred milieu doesn't normally align with that of the Antipodean bourgeoisie, I can normally find at least some common ground with everyone. Most times, that common ground is laughing at my wan and out of place complexion that I've somehow managed to maintain even living in North Queensland -- but it's common ground nonetheless and I'm happy to laugh at myself. Plus, like my grandmother always says, I'll be happy when we're 70 and everyone else looks like bacon. Ha!

Just yesterday I met two more of the lifeguards who fearlessly and selflessly patrol the beaches here in town. Their names were Scott and Jeremy, I think, though Jeremy slurred his name a bit and I'm not sure I got it right. Moving on. They told me about how they had to sting themselves with Box Jellies in their lifeguard training, much for the same reasons that police officers in training get tasered. They need to know how it feels and "what a real bugger of a sting looks like." I was in awe at that and said that, as far as lifeguarding around the world went, Australian guards seemed to me to be in a league of their own.

Lastly, I want to tell you all of a particular blessing I have encountered in my time here! Her name is Celia K. When we first moved here last August, I began to feel a decided lack of quality relationships and a decided surplus of vapidity in those I did have. As some of you will remember, I was lonely and sad and altogether unenthused over the prospect of living my life in a country where deep, non-casual, stimulating relationships were not the norm and indeed were seen as awkward (as were those who sought them out) more often than treasured. Ceal, I am delighted to tell you, has completely revolutionized my initial impression of Australians and their preferred method of casually keeping everyone at arm's length. She is hilarious, kind, warmhearted, exceptionally mature, relatable and everything I could ever ask for in a friend. And more importantly than all those other attributes, she laughs at my jokes. At the severe risk of sounding clingy and desperate, I offer this analogy: I felt quite a bit like a diver who had been stuck below the surface for too long and was just offered a delightfully fresh breath of air from an oxygen tank. Seriously, this girl is the friend that I was praying for. Thank you for those of you who have been praying that I would make a strong and quality friendship down here - it has helped SO much in my endeavor to ground myself here. Finding a close friend and kindred spirit has shot me forward in my venture to send my roots into the ground in this country and, I must tell you: I've finally started to feel at home.

Thank you for caring about me and, as always, please email me here if you'd like to chat! God bless and thank you for your support.

Much love, Anna (and Aaron!) Click Here to Read More..