A Chronic Pain in the Ass – Part II

migraine

It’s been a couple of months since I wrote about my battle with chronic migraine, so I thought it time for a wee update…and the news is good!! At the beginning of August I started a two-month free trial for a brand new drug called Aimovig. It’s the only FDA approved drug available that was developed specifically for migraine. Apparently people who suffer from chronic migraine have too much of an amino acid called CGRP (Calcitonin Gene Related Peptide). I stick myself in the stomach with two auto-injectors each month and by some crazy magic, the drug finds it way to my brain and binds to the receptors in the brain that receive CGRP. This means that the peptide cannot land on my brain and it has meant that life has become a whole lot more pleasant!

The first month gave me approximately two week-long stretches of a clear head, but with a couple of MEGA migraines in-between. The second month I have had only one hideous migraine, and a few rough days, but more clear days than the month before. It builds up in your system, kind of like a vaccine, so that over time it should become more effective. It starts wearing off about 5-6 days before my next shot, which is funnily enough quite difficult to handle, both emotionally and physically. I think having a taste of freedom has raised my baseline of what is normal and the return of pain is more unwelcome than I could have guessed.

This drug costs like a million dollars (or $700 per month), and I’m currently having to appeal my insurance company for coverage, but thankfully the company that developed the medicine are giving it away for free for up to 12-months while the insurance process takes place.

Lots of people have asked me if I’m super excited about being so much better – and to be honest, I think I’m working through a bit of PTSD from the past couple of years, so it doesn’t feel safe to get excited. I thought the migraines would end once I got out of the first trimester of my pregnancy, and then once Macie was born, and then when I stopped feeding, and then there have been the four other preventatives that I have tried and been disappointed with. So, I’m wary. Getting my hopes up has proved dangerous in the past, and my battered soul is only just now daring to poke its wee head up above the trenches and check for the all clear. But oh, I am grateful, and so so relieved. I remember being plagued by pain, watching people walking by casually on the street, takeaway coffee in hand, and screaming on the inside, “DO YOU HAVE ANY IDEA HOW LUCKY YOU ARE???!!” Now I have a taste of how wonderful it is to commit to an event and have a fairly good chance of actually making it; of going on holiday with the family and not having to say ‘no’ to half of the activities because I have to lie in a dark room with an icepack on my head. And it’s so wonderful.

Something else I’m realising is that now life is returning to more of a normal state, my thinking requires attention. I have gotten in the mindset of a sick person, and while I still need to be mindful of resting and being careful as I recover, I also need to remind myself on a daily basis that I am becoming healthy. In fact, in order to re-train my brain I’ve become on of those irritating people that keeps a mantra on the lockscreen of their phone: ‘I am healthy, I have energy, I am patient, I am kind.” (Those last two are mainly in aid of rectifying the grumpy-mum situ that my poor kiddos have had to endure for the past couple of years).

So there you go! All-in-all very, very hopeful! I could not be more grateful for the amazing scientists and researchers that have devoted their God-given smarts to developing this drug – it is making a world of difference to sufferers and their families all over the States. Here’s to many, many more pain-free days ahead!

Love you friends,

Deb xx

The Tree of Life

the-tree-of-life-hd_

I have been aware of a nagging sense of discontent in my soul of late. I think it’s probably been there for ages, but as the fog of chronic illness lifts, I am better able to see it. It’s a longing for my life to be different; more full, more productive, more exciting, more fun. I miss my old life when I was younger, was firmly entrenched in a solid crew of friends, and had more invites to events than I cared to attend. Yet, if I am honest with myself, I remember that there was a nagging (sometimes raging) discontent in those times also; I wanted to be married, to own a house and live in America(!). In fact, if I am even more honest with myself, I will come to the conclusion that what I think I need is the free time, energy, health and social status of my younger years, coupled with the current blessings of marriage, family, our own home and a decent education. I want the very best bits of each stage of my life to converge into the present. I want these things because my heart, mind, soul and brain has been tricked into thinking that that is what they need to be content.

When I am in a grotty patch of migraines, I feel strangely more content; resigned to the fact that I can only just barely keep my head above water trying to live and keep two little dudes alive. When my treatment kicks in, the discontent starts squirming and making its presence known. I know that I won’t just be stumbling from day-to-day, waiting until I can stumble into a dark room with an ice-pack on my head. I am aware that I could attend events, I could work a productive job, I could get fitter, I could become more social, and attractive, and popular, and successful. My health would allow me the chance to chase after the things that I so regularly pursue to provide what I think I need for joy and contentment.

Fill in the blank, my life would be more complete/joyous/full if only __________ (I was married/married to someone else/single, I owned a home/boat/car/full head of hair, I was skinnier/stronger/healthier/smarter/prettier/funnier/more popular, I was understood/appreciated/valued, I had a best friend/10,000 followers on Instagram/naturally long and full eyelashes/the magical ability to eat hot chips without gaining weight, I had kids/did not have kids, I had more responsibility/more adventure and less responsibility…).

Unfortunately, when we chase after any of the above and more to fulfil our lives, it’s like sitting down to a meal of lollipops…immediately gratifying and very appealing, but ultimately leaves you with an emptiness within and a longing for something more. The world around us is endlessly whispering to us and enticing us to find life in a million different ways. We get addicted to the sweetness and instant gratification of receiving life from anything other than God, but we end up chasing the proverbial dangling carrot.

I recently listened to an excellent sermon by Tim Keller on the wounded spirit (you can find it on YouTube). In it, he parallels the Tree of Life in the Garden of Eden with the Cross on which Jesus died. He suggests that the Tree of Life, which is cut off to us by deciding to live life on our own terms, becomes fully accessible to us through the sacrifice of Jesus. That is SUCH good news!! Do you know what this meant to me? On the one hand, it is clear that I am going to have to do some work diverting my thoughts away from the ways I habitually seek contentment, but on the other hand, it gives me GREAT joy!! Because it means that the longings I have within do not need to remain going unmet, my discontent can be fulfilled, I can eat from the Tree of Life. Jesus can, and wants to be, my everything. I can give up the exhausting, relentless and ultimately fruitless pursuit of the intangible. Now, that is great hope indeed!

 

Bless you friends,

Deb xx

Parenthood

Rant

My sweet little chilled out Macie has, overnight it seems, turned into a scratching, biting, dirt-eating, roaring, running, scaler-of-all-things-high-and-dangerous. This turn of events, coupled with the sassy-pants attitude of Mr. Four, has pushed stay at home parenthood to a whole. new. level. So here goes my requisite ‘parenting is so hard’ whinge. I figure I’m probably due for one…once a year seems about right.

Before I get into it, I feel the need for a disclaimer. This isn’t going to be one of those ‘find the gold in the hard moments’ posts. Not that we don’t need those, of course, we do. BUT, I read a lot of articles that talk about the trials of parenting and then finish up by talking about how precious our kids are, how cherished this time is, and how fleeting it really is. I read these and initially feel comforted, but somehow end up feeling worse…guilty somehow that in the midst of the chaos I’m not appreciating these years enough. SO…please rest assured, I love my kids to the moon and back, I’m trying to milk the loveliness out of these years, and I understand that one blessed day I shall look back with nostalgia and annoy some harrowed mum by commenting that, “I miss those days!” But today is a vent. Hopefully my venting will let you know that you are not alone in your messy house.

I think the thing that causes me to feel like the breath is being strangled out of me some days is the sheer relentlessness of raising kiddos. On a semi-regular basis, my own version of the Hillsong United song flashes through my head, “This kid is relentless.” Having battled ill-health for a couple of years surely can’t be helping, but I sometimes get to the point where I feel like I’ll explode or just disintegrate if I get asked for one more snack. I have, I kid you not, started sneaking around the house at times, hoping that no-one will notice my presence, quietly going about my business, because I know if I get spotted, Thing 1 or Thing 2 will be inevitably uncontrollably compelled to ask me to do something, or hang on my pants until they start to fall down. I swear they think, ‘Oh look, it’s the lady that does stuff. I must ask her to do more stuff.’

I think one of my main problems is that most days I hunt like a starving stray cat for morsels of the life I used to have. I try and trap moments of time that are uninterrupted and whimsical. I dream of the airy freedom of going about life without having my radar out for a small mountaineer attempting a first ascent. I long for the indulgence of having a grumpy day where I can just shut myself in a dark room and watch Netflix all day. Instead, I am the only introvert in a family of extroverts, and I get approximately 3.5 seconds in the loo before it becomes a shared experience.

Another thing that works against me, is that I am so driven by productivity. There’s nothing that I love more than putting my hand to a worthwhile task, and while I KNOW in my rational self that there could be nothing more worthwhile than raising tiny humans, the productive part of me dismisses the mundanity of daily childrearing as a box I cannot tick at the end of each day. I want to finish a tangible project, email it off to the appropriate parties, and receive constructive feedback and praise on what I have accomplished. Instead I get to scrub the floor, only to have Thing 2 post his newly dismantled banana over the side of his highchair.

I have become scarily adept at spotting the sound of Caleb’s truck arriving home from 14 miles away. Macie runs to the door to greet his D when the workday is done, and I’m about one step behind him. I get almost giddy to have my teammate back at my side. I read an article from a Psychologist recently who mentioned that parents of young children always feel overworked and underappreciated. Never a truer word. But at least the two of us are both clinging on to the same flogged horse together!

So there you go friends, rant over! (For this year). I pray that in this time of our lives God will grant us grace and strength. I also pray that through the continuous squeezing, our characters and personalities become more patient, loving, kind, peaceful, good, gentle, and self-controlled. You are not alone dear parent…and you are doing a great job.

 

Much love,

Deb xx

The Coolest Nun You’ll Ever Meet

Vintage-Holland-Mold-Praying-Singing-Nun-Figurines

I was thinking about writing the third part in ‘The Journey of Freedom,’ but as I thought about what I wanted to write, so much of it came back to one person. A nun. Her name is not Sister Mary Clarence unfortunately (I used to pull Judah’s onesies ‘til they stopped over his wee head and say, “Sister Mary Clarence, is that you?” It was the BEST game), but her name is Sister Marie (pronounced Ma-rie). I met her in 2012 when she became my counselling supervisor in Christchurch. She was roughly 70, always wore a woolly cardy, and was one of the most remarkable people I have ever met.

I don’t know about you, but I have always found nuns absolutely fascinating. I feel like I have so many questions about the monastic life, especially regarding habits…like, are they super uncomfy?!. I never really got to ask Sister Marie these questions, not because I think she would’ve minded, but because she was such a consummate professional, and we were there to talk about me, not her.

The order she belongs to is one that is specifically devoted to serving the poor in the local community. She started her professional career as a teacher, and then re-trained as a counsellor in transactional analysis. She worked out of the Salvation Army in the lowest socio-economic suburb in the city and would ask between $5-$20 an hour as a donation. One of the things that I loved about her, is that in order to preserve people’s dignity, she would hand her clients a plain brown envelope to put their donation in; no-one ever need feel embarrassed if they could only afford $5.

It was Sister Marie that helped me get a handle on anxiety. I had experienced several episodes that were like constant mild panic attacks that would last for sometimes weeks at a stretch. My breathing was shallow, I felt dizzy, and unable to come down off the edge. It was horrible. Sister Marie helped me to understand that anxiety was the culmination of years of feelings that I had not allowed to be felt; left to their own devices, they banded together and took my attention by force. She taught me that if I stopped pushing anxiety away, and instead, stopped and listened to what it was trying to say, it would no longer need to arrest my daily life.

Sister Marie also taught me that in order to face the terrifying abyss of inner pain, I only needed to tip-toe up to the therapeutic window, take a peek, and tiptoe away again. With a trusted guide, the trips to the therapeutic window became less scary, and eventually, the carnage I witnessed became less and less alarming, and I could begin to make peace with it.

One of the biggest lessons I learnt from Sister Marie was one of her favourite mantras, “The only way through the pain, is through the pain.” It carried weight when she said it; the weight of someone who is qualified to say such a thing because they speak from experience. She told me that when she started her counselling training, she committed thoroughly to working through her own issues, aware that she could only lead people as far as she herself was willing to go.

But more than what she taught me, it was who she was that left such an impression. Up until that time, any notable moments on my healing journey were reasonably dramatic…punctuated by loads of emotion and quite instant tangible results. The journey I took with Sister Marie wasn’t like that. It was slow, and steady, and peaceful. Much like Sister Marie herself. I have never met anyone more grounded, secure and unflappable. She was very kind, but I also got the impression that she could be faced with the scariest, meanest person in the world, and not back down an inch. It was as if through a lifetime of silence, liturgy, devotion and surrender, she had discovered who she was and what she was called to do. There were no qualms, no ‘what ifs’, and no striving to climb the ladders of success, self-promotion or chasing ‘something out there’. She was completely settled within herself.

Those many mornings spent in her sparse, yet cosy, office were a game-changer for me. Sister Marie, in her humility, groundedness, kindness, and honesty, allowed me to see that the while the flash-bang of emotional healing is wonderful and a such a gift, the long-game of quiet, consistent plodding in a healthy direction is just as necessary. I want to be like Sister Marie when I grow up.

 

Much love,

Deb xx

A Fish out of Water

Fish

I realise that it’s been some time since I’ve blogged…which is a whole ‘nother blog in itself, but in short, I’m still clawing my way slowly back to health after being unwell for the better part of two years. Thankfully, things are looking up thanks to a big diet adjustment, and hormone and migraine preventative medications.

I also realise that I’m still due to do Part III in my Journey to Freedom series, and fret not, it’s still coming, I just felt like I had something else pressing on my mind.

It’s been two and half years since we gathered our five suitcases, one guitar, and 19-month-old J-Dog, and headed off to the Big Smoke. In some ways it feels like forever, and in others, just yesterday. In many ways, Oregon has become home to me. There was always a part of my heart and personality that felt a bit ‘too much’ for New Zealand, and as soon as I arrived here, I no longer felt that way. Additionally, almost as soon as we touched down, I felt settled in my heart in a way that I hadn’t for the longest time. We have met lovely people, enjoyed the beauty of our mountain town, and just so appreciate our centrally-heated miracle home. And I can’t forget the bargains, it does a Dutch-Kiwi’s heart so glad to get real, honest to goodness coupons for the groceries each week. Heck, I got to double two coupons a few weeks ago and got $27 off my weekly shop! (Cue Caleb rolling his eyes, and my sister peeing her pants in disbelief).

But despite all this, I’m facing something for which I had not been prepared. I feel different. A bit off-centre. A little misunderstood. Weird-ish. The way I think of it is this – if you think about sonar, (my knowledge of which comes from Octonauts and the two submarine movies I’ve watched), a boat sends out sound waves to ping off surrounding objects to get an idea of their location. In life, we are constantly sending out pings to get our bearings and locate ourselves socially, culturally, spiritually. When I left New Zealand, I felt very sure of where I was at. The pings I was sending out were returning from where I thought they would and I felt very centred, accepted, confident and understood.

In some ways, it would be easier to move to a country that was so obviously different in its culture to my own (and in other ways, hideously harder). But, at least, you’d expect things to be really different. Moving here feels like I’ve moved to a parallel universe, that is almost the same, but just a little bit different. It’s enough to lull me into a sense of sameness, until I miss a social cue, or get a response that I’m not quite expecting, or get a blank look when I tell a joke (there’s nothing quite so soul-destroying as having to explain a joke). Then I feel just a touch off-balance. The pings are coming back in a way that is just different enough to make me feel unsure socially and culturally. (This is probably a good place to mention that this has nothing to do with people I’ve met – not at all, like I said, they are some of the loveliest people I’ve encountered).

A good example would be Kiwi humour – the type of humour that uses sarcasm and mockery as a form of affection. I remember at youth group there was a period of about a year where we gave each other the fingers just because. I have encountered scenarios here where I use my Kiwi mockery to let people know how much I like them, only to have them look at me like I’m the biggest meanie there ever was. Neat. (The good news is that there is a fellow kiwi on the worship team, we call him Kiwi-Colin, and when we’re on the team together we basically spend the whole time mocking each other.)

It’s kind of a lonely feeling. I don’t really like it. But I feel God all over it. He’s giving me the tiniest insight into what it’s like to be an outsider – how life must feel to the foreigner, the unpopular, the social misfit. I think this is really important. Because what I’m also learning, is that I am no less loved because of it. I feel like my world has shrunk in many ways, but somehow in this place I’m learning all that really matters is the gaze of my Father, and walking hand-in-hand with Jesus to live out his Kingdom in really small ways. In feeding my kiddos and rocking them back to sleep, in praying for people every day, in dropping a meal to friends in need, in taking the time to ask about a cashier’s day, in giving some cash to a person without a roof over their head.

Much love, from your slightly-off-centre friend,

Deb xx

A Journey of Freedom – Part II; Gollum

Gollum

I have to smirk; a few people commented on my tricky trickery in leaving you all hanging at the end of my last post. I have a confession to make: it wasn’t intentional. I’m not that clever. I just didn’t want to bore you all to tears, so I decided to stop writing. However, for those of you waiting with bated breath, here is part two. (Those of you waiting with bad breath? I can’t help you there…).

Gollum.

As mentioned in my first post, the voice of ‘the dread’ finally got so intrusive that I could no longer ignore it. Whether it became that way because my life was increasingly contrasted with my deep longing to be free, or because it was yelling louder and louder, I do not know. Or possibly because I had started to make some concerted efforts on a journey of freedom, the lid of the can had started to give way and the proverbial clat of worms started emerging. (On a side note, did you know that there are four possible collective nouns for worms? Bed, bunch, clat, and clew. Drop that into the convo next time you want to impress someone. You’re welcome).

The beginning of this journey mainly consisted of spending a lot of time lying on my bedroom floor, arms splayed, listening to Christian music of some variety and bawling my eyes out. It wasn’t sophisticated or cognitive. There was something about opening my soul to that of the Spirit of God that I think allowed a lot of unidentified grief to be aired. I cried and cried. And then I cried some more. For years, actually. I cried in my room, in church services, on altar calls, in prayer times…you name it, there I was, knee deep in tissues, and with the worst panda-eyes you ever did see. (One would think if I was going to cry for half my life, I would have at least worked out my mascara game). It was deep, painful, and therapeutic. It was also unquantifiable. I’ll never be able to measure what those times did in my heart, but I know for sure that they were essential to my journey of freedom, and that I would never have been able to move forward if they hadn’t have happened.

These encounters created a fog-clearing effect; it was necessary for the smoke to lift so I could see in sharper focus what was behind it. And what lay behind it terrified me; a Gollum-like creature that had the power to torment me. It was so hideous, yet it was hiding inside me. It seemed almost demonic, yet, much like Gollum, once I got to know it, I realised it wasn’t what I initially thought. In fact, given some vitamin D and a good hearty breakfast, it could even be called cute. It wasn’t scary, it was scared. It was a fractured part of my personality, a small Deb, that having experienced a frightening childhood experience, had hidden in a cave, and stayed in there, scared stiff, yelling to big Deb until she finally got my attention.

I was well into the 20-year journey of freedom before ‘the dread’ could finally carry another name. Nowadays I think of her as ‘little Deb’, and far from being my tormentor, she is someone I have come to care for. As you can well imagine, it wasn’t an easy, fun or straight road to get to that place. In fact, it was one of those things that if I knew what it was going to be like at the outset? I’m not sure I would have had the guts to take the journey. But I really, really needed to. And I’m really, really glad I did.

If you’re still reading by Part III, I’ll share a little of how I managed to make friends with my captor.

Much love,

Deb x

A Journey of Freedom – Part I; The Beginning

Bird

For those that know me, emotional wholeness is something I am extremely passionate about. It’s what led me to study counselling, and something that I could discuss ad nauseum – even at 11pm when exhausted from a long day. Just ask Caleb. He loves it. One would think that I would for sure have blogged about it by now…but I haven’t. It may seem surprising, but it’s a topic so dear to my heart that I couldn’t do it justice in one pithy blog, and no-one wants to read an 11-page diatribe on the subject, so I’ve demurred until now. I’ve decided to write a wee mini-series about the subject. I want to share a bit of my story, in the hopes that may be of some help or encouragement to some of you.

In the Beginning

By most standards, I had a pretty good childhood. There was no significant trauma, my parents loved us and each other, there was always a roof over our head and healthy food (read, not nearly enough treats), I had a good education, friends, and a church family. But I was always plagued by what I guess I can only describe as a feeling of unease; ‘the dread’. It’s like there was this cavern deep within me that sent unsettling and frightening echoes into the atmosphere of my life from time to time; a small, very scared, dark voice. From a really young age I can remember thinking, “I want to be free”. I just didn’t know what from.

‘The dread’ impacted more than I realised at the time. Probably the most obvious impact, was that I found it intolerable to experience solitude. I loved my alone time, but I always had to be reading, listening to music, watching something, playing a computer game or sleeping. I slept a lot. If I allowed myself to be undistracted, ‘the dread’ would start to beg for my attention, and it was way too freaky to focus on, so I had to stay busy. I remember my dad once saying that I was too future driven. I now know that it was because the present was too painful, and my constant hope was that the next conference, camp, holiday, project, outing, opportunity or potential relationship might hold the key to freedom.

I say ‘potential’ relationship, because ‘the dread’ impacted that area of my life too. I always had a crush on some poor probably not-so unsuspecting guy. I cringe now to think about how intense I was with those crushes, my wee heart was right out there on my sleeve, and deep down I was looking for something to soothe the disquiet within. The cruel irony, is that the odd time that someone began to return the interest in any way, I ran for the hills, freaked out of my tree. ‘The dread’ badly wanted attention and affection, but it couldn’t handle either.

My life was far from a social failure, but even though I had what many would consider an enviable circle of genuinely amazing friends, I was plagued by the feeling that I was never really ‘in’. On top of this, I would experience these super unfortunate bouts of blushing. Not the rosy, sweet, feminine, pinch-your-cheeks sort of glow. Oh no. This was the ugly sort of mottled scarlet that started somewhere at the base of the neck and spread with horrifying rapidness to my whole head. The sort of fire-engine red that has people asking if you’re okay and getting ready to seek medical attention on your behalf. I hated it. So. Much. I knew deep-down that I was a confident person, and it killed me that I had to leave conversations, or stop speaking out loud in class when I felt it happening.

I really wasn’t sure how to get free from this stuff. I just knew that my life was not peaceful, and that somewhere in the recesses of my soul, was a small, caged girl. She felt powerless, unlovely, alone and invisible. She was trying to get my attention, but it was too unbearable to listen, so I ignored her, until she got so distressed that I could no longer avoid it.

I’ll continue the story soon.

Deb xx