Tag: healing

To smell the flowers

IMG_4230

It’s been a funny few months. I say ‘funny’, but I don’t mean ‘haha’ funny. More like a peculiar, confusing funny. The ‘I’ll laugh otherwise I’d cry’ kind of funny, although I’ve still admittedly shed quite the volume of tears over the past few months (though some that know me would say this isn’t necessarily unusual for me). The point is, I’ve run the gamut of emotions in a condensed amount of time, and it’s left me feeling really weird lately. An emotion I can’t quite pinpoint. How annoying. 

It’s been understandably difficult dealing with my husband’s evolving medical issues, though I can say after more than 6 years of relentless, terrifying situations, I genuinely feel like we face these issues with much more pragmatic attitudes than ever before. It never stops being terrifying and emotional, but I’m immensely proud of the way we’ve faced recent events and pushed ahead with logic. Though we’d give anything (literally anything!) not to have to deal with this crap, in a twisted way, I’m grateful that we, as individuals and as a pair, have become better versions of ourselves off the back of what we’ve experienced. Just the fact that I can type this now shows that I’ve grown a lot as a person – that I can take a step back from the chaos and analyse it logically. And better yet, that I can admit that there’s any glimmer of a silver lining in the shitty cards we’ve been dealt in life shows how far I’ve come. Every cloud, eh?

As a quick update for those following this insane medical journey: we’ve found a private neurologist in the last few months who my husband describes as ‘the best doctor’ he’s ever had. And considering his medical history, you can be damn sure he’s seen plenty, so this judgment points to good things. The doctor treats us like human beings (gasp!), has a sensible approach to health backed by science (not always a guarantee these days) and genuinely seems to want to help. This is the first time we’ve not felt like lepers in a doctor’s office. It’s still early days in my husband’s current treatment, but we’ve got a course of action… and then several other courses of action planned should the first one not pan out. So in short: we’re happy and optimistic – something we weren’t feeling at the start of the year. Fingers crossed the trajectory continues this way.

Whilst all this was going on in the background, as is usual fashion for me, a tornado was wreaking havoc in other parts of my life too. I’m still waiting for the reality TV crew to jump out from their hiding spots, but until then…

The company I work for went through some major internal structural changes recently that left my entire team facing redundancy. It happened very quickly – we were told our roles were being made redundant, proposed new positions were explained, those who wanted to stay had to interview for these very few new open roles, then we were told if we were successful or if we were out the door. All within 30 days. As you can imagine, this was incredibly stressful and emotional. I went through every stage of grief, no lie, and I for sure had severe moments of ‘why now, why me?!’. Nevertheless, I pushed through the best I could, and I attribute that both to the strength I’ve found in past life experiences, as well as to the people who helped prop me up and cheer me on throughout the process. Though I’m grateful I landed a new role at the company I love so much, I’m simultaneously grieving the loss of many fabulous colleagues and friends. It’s a complicated time, gang.

I went on a much-needed holiday, then came home and immediately fell very ill for a very long time. I faced conflicts with people I love. I made distant future plans knowing life could change by then. I went to the doctor for myself – twice! I’ve been let down. I’ve been surprised. I’ve been socially awkward and shockingly social.

These last few months have forced me to think about my own wants and needs much more critically, and to make very hard decisions quickly. I’m not a fan of making quick decisions on a normal day, so it’s been particularly difficult of late. I’ve had way too many anxiety attacks to count, but whilst they’ve been frequent, they’ve been brief. I’m slowly learning how to regularly claw my way out of these moments (with obvious external help from those around during an episode – thank you!), and so I say again: every cloud.

I’ve made regular use of the ‘block’, ‘unfriend’ and ‘hide’ functions on social media platforms, protecting myself from toxic people who trigger me. I thought this would be hard to do – I don’t like the aggressive feeling of doing this – but I can honestly say that it’s helped me so much more than I could’ve expected. I’ve also made use of the word ‘no’. Little miss ‘too-afraid-to-disappoint-people’ and ‘gives-everyone-10-billion-second-chances’ has given firm nos to negative influences who’ve tried to reach out. Who am I?! I won’t say this was easy to do in the moment, but after doing it once and realising I was better off for it, I find myself becoming much more comfortable looking after myself and not feeling guilty for doing it. Guess this is growing up, ya’ll!

I don’t think I’m feeling optimistic or particularly positive, but the main thing is that I’m trying to. It’s taken me many, many years, but I now feel like it’s okay to put myself first. This doesn’t mean that I care less about anyone else, but rather I care so much that I want to ensure I’m putting the best version of myself forward first. Not the tired, broken down version I previously offered. I’m not saying I’m killing the game over here – I still have bad days where I just can’t get a grip on my anxiety and collapse into a ball of erratic, irrational emotions. But I can say I don’t feel like a failure on these days anymore. I am allowed to feel broken. I am allowed to be angry and resentful about the cards I’ve been dealt. I’m allowed to have ‘woe is me’ days. But above all this, I know I’m allowed to be happy and continue to seek happiness. I’m allowed to change my mind and my mood. I’m allowed to be! It’s crazy that I’m only just now coming to this realisation, but I’m very glad I did.

And now, I think I’ll take some time to stop and smell the flowers. It’s a crazy life, folks. But there’s always a little beauty to see. You just gotta know where to look for it.

We all march on…

img_1876.jpg

I’m just going to slide into this blog post acting as if it’s only been a blip in time since I’ve last posted. It’s okay to start this one out on a lie, yeah? Great, glad we’re in agreement there. Moving swiftly along…

Hi buds! Can you believe it’s 2019 already? I can’t! OK, great. Chit chat – done!

Life sucks. Pardon the melodrama here, but honestly it’s become such a drag lately I genuinely feel like all I ever do is whine and complain and I hate it. I’ve wanted to write about it for so long, but I felt like if I did, I’m just painting myself as this world-class complainer who can never see the good side in life. I don’t want to be that person in the slightest, so instead, I just shut up. But that doesn’t help me emotionally, and it certainly doesn’t help anyone else who cares about me and wants to help. So despite still having reservations about writing this post, here I am. Doing it anyway! *insert awkward grimacing face here*

The last you heard from me, I was talking about my husband’s vitamin deficiency. Plot twist! Turns out, that was never the problem. Also turns out, nobody knows what is the problem. Sound familiar? We’ve done this song and dance so many times, it’s almost weirdly expected now. We’ve been in and out of the hospital the last six months – the emergency department a few times – test after test, waiting for someone to find a lead and bring us closer to an answer to the problem. I’ve been having flashbacks to the time we had to do all this before his CRPS diagnosis, and it is honestly heart-wrenching (and unbearable) remembering it took years of suffering before a doctor diagnosed him. Can I handle that again? Can he? And even now, not all doctors agree that he does, in fact, have CRPS. Every doctor seems to have a differing opinion, but I guess that’s just the nature of a syndrome, eh? In any case, this was never a place I expected us to be back in… ever, let alone this soon after having just rode this crazy train to CRPS land. I want off the damn train.

Every day at work, someone asks me how I’m doing. It’s a natural, casual question, not intended to be loaded in any way. For the last six months, my answer has literally been the same no matter who asks: I’m tired. I keep joking that exhaustion is now just a part of my overall personality, but in my head I do kind of feel like it has overcome me as a person and I’m incapable of being or acting any other way. It’s exhausting being this exhausted! I find myself digging back through my photo archives, reminiscing about years before, wishing I hadn’t taken such a carefree life for granted now that I’ve learned how overwhelming it’d all become. Then the guilt strikes, hard, in waves, and I’m chastising myself for being so negative. My thought patterns are wildly unpredictable, and I can’t even keep up with myself most days. So, I keep it simple when people ask. I’m just tired, and leave it at that.

I’ve mentioned before that I often approach a new year by reflecting on the one that’s just gone, to shed myself of those feelings to begin anew each year. Most of 2018 wasn’t all too bad. Health-wise, my husband wasn’t great the majority of the year, but it had become our new normal and we were just living with it. I felt lonely and isolated a lot, but lacked the motivation to do anything about it. But toward the end of the year, the feelings of pride I had for handling the difficult life the universe crafted for me with grace were quickly replaced with intense fear, uncertainty and crippling anxiety. As his health degraded and new symptoms were emerging, we were absolutely gripped by what was happening. I more or less blacked out from September onward, unable to think of much else apart from his health and what I could or should do to help fix it. Every moment of my time was spent worrying about him, whether he was around me or not. Not only did the new symptoms present more problems going about our ‘normal’ lives, but they seemingly made previous, regular symptoms worse.

But when Christmas finally rolled around, he was starting to feel a little better, and since medical tests hadn’t found anything still, we thought maybe we were in the clear. A fluke, surely. He got back to feeling more positive, laced up his running shoes and stared his pain condition directly in its non-existent face; running each weekend brought him pain, but also joy. The thing that he loved most before the nerve condition turned up uninvited. He was doing it again (!!), slowly and very carefully, but I could see his pure joy and god, how fulfilling that is to witness. Short lived, of course. Isn’t it always?

A few months later, the symptoms were back: extreme dizziness, blurry and/or double vision, intensified pain, localised unintentional muscle contractions, insomnia. A change in diet had improved his gastro symptoms, but nothing else. Blood tests still revealed no abnormalities. I think I took it hardest at first. I felt foolish and naive – how dare I think the issue resolved itself overnight? Haven’t I learned anything in this journey so far? How could I let him down by not being the pragmatic one? I was livid. At myself, at this mystery illness, at the universe. Why couldn’t I help him? It all feels so unfair and I can’t understand why we don’t deserve a break. It’s hard. Every day I’m fighting my own emotions, it’s no wonder I’m this exhausted.

My resolution this year was to be more sociable and make more friends. One thing that makes dealing with my life so difficult lately is that I genuinely do not have friends to help me escape – my mind, the situation, my life (sometimes). Especially in my new country. I don’t mean that to be cruel or dramatic or insensitive to the people who are in my life, but to be completely honest, I do not have anyone who regularly checks in on me without me having to prompt it first. Maybe this is my fault. I can be very closed off and I’ve often backed out of plans with others (because, this life), so I can totally see how I’ve made myself unapproachable in general. Nevertheless, it is hard seeing my husband’s phone light up with messages from friends and colleagues simply checking in, asking if he wants to grab a drink, shoot the breeze – all because they want to. He’s got friends fairly regularly asking him to do things and he’s the one with the disability, but I’ve often been sat at home alone waiting for him to return (and worrying if he’s okay). Don’t get me wrong, I’m thrilled my husband has people in his life like this. It relieves some of the burden and guilt I feel when I think I’m not being or doing enough for him. But still, I’m jealous. I wish I had people who wanted to take my mind off the things troubling me most! And boy, is it hard to make friends as an adult. In any case, I decided I didn’t like feeling so lonely and pathetic, so that’s why I endeavoured to put myself out there more often – social anxiety be damned!

It’s slow going, I’ll admit. I’m still resentful that I’ve seemingly been unable to pick people to stay in my life of their own volition. I can’t help but feel like there must be something wrong with me for people to forget about me so easily or treat me unkindly. I still struggle to shake this ‘woe is me’ feeling I have so often. But! I’ve started to make new friends. People who have so far been kind enough to reach out on their own accord and invite me to do things, ask me how things are, assure me they’re there to talk or not talk – whatever I want or need at any time. I am apprehensive, at best. I want to trust that opening up to new people will bring in new friendships I crave, but I’m also afraid I’ll lose them just as quickly. My life is so unique to the average 20-something, and I’m hyper aware that none of these people may understand the life of a caregiver. Because that’s what I am, really. But I am still trying and being more social and slowly opening up to new people. It is likely I’ll get hurt. I know this – such is life. But if there’s even a small chance that one of these wonderful new people in my life will stick around, then it makes it all worth it. We need people. And I need people to help remind me that I’m still young and have a whole, exciting life ahead of me. To remind me that I am more than this situation. That my personality isn’t ‘tired’. That I’m someone who needs care and attention too, sometimes. I very often forget this down in the muck that is this medical nightmare. So to those of you reading this who’ve been so kind and understanding toward me – even without knowing my whole story yet – I thank you. You have no idea how huge of an impact you’ve already had on my life, and moreover, I hope you stay.

This isn’t an easy life. I’ve never foolishly believed it would be, but I never could’ve guessed I would experience such trauma in such a short span of time. Word on the street is that I’m strong and resilient, but I almost never feel this way. I’m proud of myself for sticking my neck out when I’ve been in need, though. This is something I’ve never been known to do or particularly good at, but I’m finding life a little easier to handle knowing I’ve got a bit of extra help on the outside. Even if that help simply comes in the form of a smiling face willing to take me away from my own thoughts for a bit. Every little bit helps.

So I end this post with one request: always be kind. And when you’re feeling least like wanting to be kind, be even kinder. You never know who is so desperately relying on your kindness just to get through the day.

Go as long as you can, and then take another step.

Keep rolling under the stars

DCIM100GOPROGOPR0065.JPG

Hi buds! This sure has become a pattern for me, huh? Dripping life updates at a glacial pace. I always apologise or throw up an excuse for why it’s taken me so long to post something new, but really I’m not all that sorry and I don’t have an ‘excuse’. I post when I feel ready to a) share and b) delve into the emotional complexities of the situations I’ve been going through. And at the end of the day, this blog is for me, mostly, and you just get the pleasure of coming along for the ride. So I say: you’re welcome. And also thanks for taking the journey with me. Coming to a cinema near you! Not really, but wouldn’t it sell!?

Truth be told, I’ve been plodding along rather contentedly the last few months. But today is World Mental Health Day, and I’ve been inspired by my colleagues who’ve taken time out of their days to share personal stories of struggle, with tips on how they’ve overcome them. I’ve been exceptionally reserved and introverted at work, keeping all personal details about my life to myself for various reasons. Mainly, I found it incredibly difficult dealing with the day-to-day once my colleagues at my previous job knew about the struggles I was facing. Though they all meant well and logically I was fully aware of this (even in the moment), it became far too painful enduring very personal questions, often uninvited. Once I opened up, it’s like I couldn’t keep anything to myself anymore. My story and my struggle were no longer mine alone, and everyone always wanted to know what was happening. When I left and began my new job, I vowed not to let this happen again, and reasoned the best way to avoid personal discomfort was to shut up and keep to myself. I think I’ve done quite well, though I’m not sure it’s really been as beneficial as I thought. I work with amazing people (hi colleagues!), and I do feel guilty quite often for not letting any of them in.

I genuinely believe talking about things out loud helps make even the scariest of scenarios seem a little bit less daunting. But I’ll tell ya from experience – it sure isn’t easy to start. A constant ripping-off-the-bandage feeling, most often accompanied by unwanted tears. We’re always embarrassed by our tears… why is that?

Anyway. Life. What’s happening? How am I? Well, as I said, I’ve been relatively fine considering most things. I want to attribute this to growth: learning how to better cope, how to respond to my own reactions, talking to people when I need guidance. I realise that I’ve not actually been better, but the improvement in my response and recognition hasn’t gone unnoticed. For example, just the other night I had a panic attack. These are not uncommon for me, and they’re really horrific to experience. I liken it to feeling as if you’re drowning, in quicksand, being fully lucid yet paralysed, in -100 degree chill. It’s awful. But this time, I felt the panic attack coming on, was able to tell my husband just before and he helped me get through it; talking to me, insisting I try drinking water, rubbing my back. Within minutes, I had regained control and was out of the panic attack. It’s the quickest I’ve ever done it, and to me that feels like progress. I’m still the same person, but maybe a better version of myself. It’s taken awhile to get here, though, and a whole lotta courage.

And it’s never really done.

Things have been especially tough for, gosh, an entire year now. My husband’s seemingly ever-evolving medical issues have more or less called the shots on the daily. However he feels is how the day goes. On bad pain days, which are most days now, all responsibilities fall on me. I know he absolutely does not mean for it to burden me and I know it kills him to ask me to do something like get him a glass of water because he simply can’t bear to stand up, and I hate he subsequently experiences two kinds of pain from these situations, but it has been hard for me. I’ve had to literally learn how to cook edible meals or force us both to starve on days he can’t cook. I’ve had to run across the city at the last minute because he needed me for emotional support during a flare up. I had to paint almost the entire flat by myself because he couldn’t muster more than near 10 minutes on his feet. I’ve had to abandon family events to get him home and back in a comfortable space. I’ve become a human WebMD. I’ve been forced to become physically stronger so I’m able to push a man twice my size in a wheelchair. If I’m ill, but he needs me, he comes first without hesitation. I’ve had to watch the love of my life continually suffer, unable to take away his pain. Still. I’m honestly still so exhausted every minute of my life, but I do all of this and more because I want to. Because that’s what love is about: being partners, and helping each other when needed. I do not resent him or blame him for any of this, and he knows that, but he also knows it weighs on me. We do what we can for each other, when we can.

Recently, we’ve learned he’s vitamin deficient, which has caused severe bouts of dizziness and too-many-to-count near-collapses. This deficiency has appeared to cause even more problems with his nerve condition, though doctors haven’t medically linked the two yet. We’ve become so astute to his symptoms, we can’t help but notice the parallels of pain flares and dizzy spells. We wonder how long he’s been so deficient? Was he always? Is this something we missed that could’ve prevented further damage had we realised sooner? Is this why the spinal cord stimulator hasn’t been helping? It’s impossible not to wonder these things, but completely fruitless at the same time. We know this. Yet we still wonder. It keeps me up at night now, despite already having issues with insomnia.

Dealing with this has never gotten any easier. I’ve just gotten better at it. I’ve stopped allowing myself to feel like I’m missing out on something by staying home with him because I want to stay home with him. I don’t get upset when he has to tap out of an activity quickly and asks me to step in because I expect this now. Well, I’ll be honest, some days I do still get upset because it gets hard ya know? But I’m so much better now.  We didn’t choose this life. We didn’t ask for it. We don’t want it. But it’s the life we have. We’re doing our best to make it work for us.

I can say today, with the utmost pride, that my husband has actually been an inspiration to me, despite what he may think sometimes. One day not too long ago, he announced to me that he was done feeling sorry for himself and letting his nerve condition determine his life. And that was it. Though it very obviously still does make most of our decisions for us, he no longer gives CRPS power over him. It’s amazing. He’s gotten so much better at acknowledging the pain, adjusting his actions, and getting on with things. He still wants to go for walks with me even though I know it causes him a great deal of pain. He doesn’t want to miss out on things he genuinely wants to do, and though it took us more than 5 years to get to where we are now mentally and emotionally, I am constantly in awe we’re managing it. He’s excelling at work and still makes it into the office every single day, even though he has to get a cab to and from. He’ll text me in the middle of the work day saying he’s in so much pain he wants to throw up, then after a quick pep talk gets right back to work and never gives up. If you want to know strength, you should meet my husband. He doesn’t make it look easy, but he makes it look achievable in impossible situations. I admire him more than he realises. I aspire to be this strong.

My biggest struggle of late is not being as honest as I can be about my issues with people who care about me. I don’t let anyone in because I find it hard to make them understand what I’m going through. They don’t understand how severe it is. They don’t see it. And as a result, I get angry and incredulous and stubbornly decide I’m done sharing with everybody because they just don’t get it so what’s the point? And when anyone seriously asks me about my husband and how he’s doing, I get emotional every single time. I can’t help it, and I hate it so much that that also prevents me from sharing. But the catharsis can help. I endeavour to try to be more open for my own sake. It won’t happen over night, but if I can claw my way out of a panic attack, then there’s hope for me yet.

There’s hope for all of us, really. We’ve just gotta believe it ourselves.

When you recognise that you will thrive not in spite of your losses and sorrows, but because of them, that you would not have chosen the things that happened in your life, but you are grateful for them, that you will hold the empty bowls eternally in your hands, but you also have the capacity to fill them? The word for that is healing.

Thicker than water

IMG_5030

Some people survive and talk about it. Some people survive and go silent. Some people survive and create. Everyone deals with unimaginable pain in their own way, and everyone is entitled to that – without judgement. So the next time you look at someone’s life covetously, remember: you may not want to endure what they are enduring right now, at this moment, whilst they sit so quietly before you looking like a calm ocean on a sunny day. Remember how vast the ocean’s boundaries are. Whilst somewhere the water is calm, in another place in the very same ocean, there is a colossal storm.

This year has been simultaneously remarkable and harrowing. I always refer to my life as a rollercoaster because that’s how it’s often felt with the ups and downs and the loopty-loops. It still really does. And now as I sit here halfway through 2017, I’m quite thunderstruck just absorbing the fact that half of this year has already passed. Time is slipping through my fingertips at a rather alarming rate. Some days, it’s unsettling. Others, I’m grateful for it. Life is a balance, isn’t it?

I recently made a surprise trip stateside to see my family. Namely, I went back to see my grandparents who’ve not been in good health lately, as I’ve previously mentioned. When I was initially planning to go, I wanted to write about my week when I returned to London because I thought it’d be cathartic in some way. I’ve been back a week now, and my opinion has changed slightly. Part of me wants to spill every little detail about my week and commit it to ink, but the other part of me wants to keep it close, to myself and those closest to me. As a writer, the latter bit stresses me out a little. I’ve been relatively open about massive issues I’ve faced in my life, especially recently, and I do genuinely find catharsis when I put my feelings into writing. But my week in Cleveland was special, emotional and one I’ll forever hold dear. Because it feels cruel to write a blog and mention something as dramatic as a surprise trip 4,000 miles away and not say a peep about it, I will say this:

My week home was heart-warming, exhausting, happy, sad and very, very fulfilling. My grandparents and aunt were so incredibly surprised and thrilled to see me and spend time with me, and that’s all I ever wanted from the trip: to make them happy and aware that I was willing to drop everything in a heartbeat to be there for them. And I was. I was there. And I will be again if and when they want or need me to be.

It was not a holiday. It was not time off. I woke up every morning at 5am because that was 10am UK time and I worked a full day. Every day that week. Then by 1pm, the UK workday was over so I’d get ready for the afternoon and spend it with family. In the evenings, I’d squeeze in a few hours to see friends. I’d fall into bed every night absolutely shattered, mostly running on adrenaline, which seems to be my only fuel source this year. I rolled back into London on a Sunday morning and rocked right back to work that Monday. It was very hard, but I don’t regret doing it. It was the right time for me to show up, and I’m so, so glad I did. However, I have no idea how I’ll ever top that kind of gift! Think I set the bar too high for myself…

I still don’t know what’s next in this long saga of continuous chaos. Some days I’m optimistic and strong and cheery, other days I’m a moody, grumpy lump on a log for no discernible reason. Some days I’ll talk my friends’ ears off about what’s bugging me or what I’m excited for, and other times I force them into an awkward exchange with lots of one-word answers and uncomfortable silences. I don’t know how people are meant to handle the things I’ve been going through this year, and I don’t know that there’s really a guidebook for any of it either. Day by day I take things as they come, and meet them with whatever mood happens to me. I never have proof of my strength and I often feel like a wimpy, whiny baby, but I’ve been told that I’ve been doing okay so I take that as a success and keep moving forward.

My life isn’t better or worse than anyone else’s. While it’s hard not to feel like the world owes me something, I want to believe that everything happens for a reason. Maybe this year is a year for hard-earned lessons that will prep me for whatever 2018 has coming my way. I don’t know. I can’t know for sure. But what I do have now that I didn’t have before is experience. I’ve learned way more in these last few months – about myself, life, humanity – more than I ever could’ve imagined I would.

This life is precious. Although it’s cliché, you never know what tomorrow may bring. I do what I can in a day, and then I’m done with it. I make time for what I want and need, and do my best now to strike a better balance between work and my personal life. Work still seeps into my personal life, but it is a choice and not a requirement. I am grateful to have friends both here and in my hometown, all of whom show their support for me when I need it. Life isn’t about merely surviving – it’s about living, right? That’s what they say.

So I guess this post is my thank you to everyone who’s been following my life thus far, offering tid bits of ‘you’re doing great!’ and ‘thinking of you’ comments here and there. I imagine from the outside looking in it’s been pretty dramatic and entertaining, so I can’t blame you for wanting to know how I am and how things are going. Thank you for caring. Thank you for striking up conversations even if I look unapproachable. Thank you for spending time with me even on the days I’m not very communicative. Thank you for being constant beacons of light when I’ve not even realised I was in the dark. I am so very grateful that even on days I feel like I’m dealing with this life alone, I’ve never actually been alone. It’s been quite the adventure so far, hasn’t it? Here’s hoping for tomorrow…

The edge

d6bb7b3cc3ea456e1dbea19e27876237

The day doctors confirmed my grandfather had cancer, I cried in the bathroom at work, finished off the following hour in the office, then left early, unable to truly focus. I went straight home to buy him tea. A few weeks prior, my mom mentioned my grandpa really enjoyed tea I had given he and my grandmother, which I purchased here in London, but I couldn’t remember what type of tea it was to save my life. So I did what any sensible person would do: I spent $100 on different varieties of tea and shipped it to them. That’s right, my first instinct upon hearing my grandfather’s diagnosis was to send him tea.

Even thinking about it now, a few weeks on, I can’t help but think how strange of a reaction that was. But in my head, it was an action. It was something I could do to help from afar, albeit a very small action with seemingly little impact. All I could think was ‘what will make my grandparents smile during such a traumatic time?’. Hundreds of tea bags would do the trick, I thought. I think it did… but it still doesn’t feel like enough. Which begs the question – what would be enough?

For those of you following the snippets of my life that I serve up via blog post, you’ll know I’ve been dealt a number of awful cards in my time on this earth. Just in the last year alone, I’ve faced a slew of horrific ordeals and hovering unknowns. I thought I was closing the book on the majority of these issues when my husband had life-changing surgery about 8 weeks ago. It’s been a slow recovery, but he’s on the mend and his quality of life has sky-rocketed into positivity. I know now, however, that I was not closing the book, but simply a chapter, as I face another seriously stressful and scary situation happening to yet another person I love.

I’ve been in this situation before: far away from someone I care about dealing with a scary health problem. It doesn’t get any easier. But whether I’m there or here, it still impacts me the same. I’m scared and I want to help, but I’m hyper aware that there really isn’t much I can do. So here I am, continuing on with life as if I don’t have something else heavily weighing down my conscience, feeling helpless and isolated.

I’ve kept this subject quiet for quite some time. My grandfather fell ill a few months ago, and that’s when the subject of cancer came up. But cancer is horrifying. I refused to believe it was even a possibility until I received categoric confirmation. I couldn’t let it impact my work life because my situation with my husband had already interfered heavily. I couldn’t bear having to admit to my superiors or colleagues that, yes, here I was again dealing with yet another medical nightmare. But more importantly, I didn’t want anyone to pity me. I know I don’t give myself much credit, but I know I’m strong. I’ve handled terrible situations with a level of grace I’m still not sure is my own, so surely I could put my brave face back on to get through another workday.

My grandfather is the toughest guy I know. I’ve always said he’s too stubborn to die, and I still very much believe it (hope you’re reading this, Papa!). I’m so glad he’s got my grandmother to help him through this journey, despite the scary health issues she’s enduring herself. I fully believe in the power of love, and how this magic ingredient helps so many of us pull through each and every day. I only wish I could be there, in person, to help them both. They’re such an integral part of my life, and I feel like I’m doing them a disservice being thousands of miles away. But here I am.

I don’t want pity and I don’t particularly want to discuss this subject with anyone because it’s still raw… so why the heck am I writing about it, you ask? Well, it’s simple: I want people to understand that we’re all dealing with things behind closed doors. That not everything is as it appears. I beg you to please be kind to people, always, no matter your own circumstance. I can’t count the number of times I’d return home from a rather rough day at work, shouldering the weight of others’ roles plus the mental anguish I was already juggling, collapse into tears and wonder if maybe had I expressed what was happening in my personal life, I’d earn some compassion from others. But I didn’t want to talk about it. I still don’t want to talk about it. I shouldn’t feel like I have to pour my heart out just so people will be nice to me. I was taught to be kind, so why can’t I be granted the same courtesy?

Look, I’m not here to complain. Life has a tendency of kicking you in the teeth, but you still have to get back up to finish the day. I’m the poster child of this! But I’m also not too proud to admit that I’m tired. I’ve not had time to bounce back from my husband’s ordeal, who still has a number of months of recovery ahead of him. Yet here I am, still trucking along, dealing with every little thing the universe throws my way. Not always in the best way perhaps, but I’m getting through the mess the only way I know how.

I don’t know what the future holds. If I’ve learned anything in the last few years, it’s certainly that life has a way of keeping you on your toes. I like to think I’ve navigated the obstacles well, but it’s hard to say. The only thing I seem to have any control over is how I deal with all of this – and how I choose to allow it to affect my life and the people around me. And most importantly, I’ve learned to keep going. I’ve wanted to throw in the towel so, so many times and just crawl into bed and never leave. But I haven’t. And I haven’t stopped laughing or spending time with friends, I haven’t neglected work or failed to help out my husband. I haven’t given up. I won’t give up. My grandparents haven’t, so I think I’ll follow their lead.

Anyone can slay a dragon. Try waking up every morning and loving the whole world again. That’s what takes a real hero.

All forward motion counts

img_2419

On my last day of CBT, I spent the full session sitting in my chair sobbing uncontrollably, muttering ‘I’m sorry’ in between gasps for air, ‘I don’t know why this is happening’.

A few weeks before Christmas, I self-referred to a local mental health clinic in an attempt to gain control over my thoughts and to learn coping strategies when things felt like they were spiralling out of control. It was something I’d always thought I should do, but never felt I was ‘bad enough’ to require outside guidance. I’m fiercely independent, and I always want to be able to take care of myself without anyone’s help or input. But as my husband’s condition was worsening and the future was quickly filling up with more and more unknowns, I realised now was the time to admit that I needed help. I genuinely felt like I couldn’t face whatever came next for his treatment unless I was properly prepared. So I signed up for a 6-week CBT one-to-one course (cognitive behavioural therapy), intended to analyse the way I reacted to situations, then work to implement changes to disrupt the negative pattern I had fallen into. It sounded like the perfect thing for me to do: it would be work, but it would come with noticeable results.

I kept it quiet from most everyone. I didn’t want anyone to know that I was working on myself because I didn’t want to admit that 1) there was anything that needed fixing and 2) that it was affecting anything more than myself. To be completely honest, I was so stressed and so panicked and so overwhelmed that it was affecting a lot in my life. My anxiety had gotten so extreme that I wasn’t leaving the house except to go to work, and even there I wasn’t myself. I needed help, but I didn’t need to broadcast it to everyone. I wasn’t ready for that.

So I went home to America for the holidays and tried my best to relax during my time off knowing that when I returned, it was time to get to work. And I did. Every week, I went in for my appointment and talked about how I react to situations and how they’re affecting me and how I thought I could change that. I’m not a therapist, but CBT itself is pretty straight forward. It’s goal-oriented and something you can track progress on paper. Each session I’d walk in with my homework in hand ready to discuss it, and each week I was transparently told how well I was doing. I felt pretty proud of myself, and received the positive affirmations I needed each week to keep me working toward a better me. I was slowly breaking the pattern that I knew played a major role in my recent demise. I was clawing my way back up to the surface each week, and for the most part, it felt pretty damn productive.

On my last day of therapy, I had recently gotten incredibly stressful news about my husband. He was due to get DRG surgery in the coming months, but we hadn’t yet been given a date for the surgery (a type of spinal cord stimulation targeting your dorsal root ganglion nerve bodies at the base of the spinal cord). We were just anxiously awaiting a phone call from the hospital that could’ve literally come any day, which meant most of our life plans were on hold or tentative until we knew what was going on with his surgery. A very tense way to live your life, let me tell you. Anyway, we got that call, suddenly, when we weren’t expecting it in the slightest. But it wasn’t the call that threw me – it was that the hospital called to ask if he could come in for surgery three days later. It’s one thing to know you’re waiting for life-changing surgery, but it’s something completely different when you’re asked to get it done in mere days! However, I thought I handled that experience with ease: I was calm, strategic and gave my husband logical advice. When we finally determined it wasn’t the right time to drop everything for the surgery and we’d rather wait for a later date in which we could plan properly, I hung up the phone feeling proud of myself for handling it like a mature adult. Pre-therapy Tanya would’ve completely crumbled from the stress of the situation, over the need to give the hospital an answer within the hour. Panic would’ve taken over and I would’ve been crying in the bathroom desperately trying to compose myself before getting back to work. But not this time! This time I handled it like a pro, and although I still felt a little jittery from the whole ordeal, I survived and I was able to get back to work comfortably. Or so I thought.

When I eventually had my final therapy appointment, I walked in prepped and ready to tell my therapist how I dealt with a scary, overwhelming scenario like a boss. A ‘look how much I’ve learned already’ show of achievement. I walked in smiling, sat down and started explaining how the situation came up and how I responded to it, and the minute my therapist asked what I would’ve done if my husband had taken the early surgery date… I burst into tears. And they didn’t stop. The entire session. I kept apologising and muttering that I didn’t know why this was happening and I was fine the whole time until I walked in that door and how it didn’t make sense and that I was sorry, sorry, sorry. She told me it was a completely normal, emotional reaction and it just showed how much I cared about my husband, and how that type of worry is and will still be normal. She explained the stress of his medical situation is unique and how I need to stop viewing my tears as weakness. I don’t remember every detail of that appointment mostly because I was utterly embarrassed and surprised at my own reaction. I mostly remember her telling me I was strong and proactive, but that maybe I needed something a little more than CBT and gently suggested I pursue treatment elsewhere. I know she meant well, and I know she’s probably right – I need treatment catered specifically to me and my situation because it’s too, uh, complex, for generic therapy plans. But I couldn’t help feeling like I had failed therapy. I was doing so, so well only to completely lose it on my last day with an emotional reaction I didn’t even know was in me. I thanked her for everything she had taught me along the way, asked her to send me info for further treatment and took my sobbing self to the bathroom to cry in peace. My husband eventually had to meet me on the walk home since it became evident I wasn’t going to compose myself any time soon.

At the end of all this, we did get an appointment date through for his surgery. It’s in a few weeks time, actually. We were able to go away on holiday beforehand to get some sun and proper relaxation before life as we knew it will change. I haven’t yet signed up for new therapy. I still don’t know if I will, and I imagine it hinges on whether or not this surgery goes well. But for now, I’m applying what I have learned so far: I don’t know what will happen after this surgery. I don’t know if it will be the saving grace we’re after or if it’ll send us back to square one. But I do know that these ‘what ifs’ are not helpful, and we’ll tackle the outcome when that day arrives. And I’m still trying to remind myself that I am strong and despite feeling weak more often than not, I have every right to be proud of how far I’ve come so far. This stuff is absolutely terrifying. I wouldn’t wish any of this on my worst enemy. I know I’m going to be emotional when his surgery date arrives, but I know I’ve got some tools to help myself this time around. And if I find myself falling short – I have options. That, in itself, is empowering. There’s no reason I should ever feel I’m going this alone. And it’s about damn time I realised that.

You’re looking for the explanation, the loophole, the bright twist in the dark tale that reverses your story’s course. But it won’t reverse – for me or for you or for anyone who has ever been wronged, which is everyone. Allow your acceptance of the universality of suffering to be a transformative experience. You do that by simply looking at what pains you squarely in the face and then moving on. You don’t have to move fast or far. You can go just an inch. You can mark your progress breath by breath.

What hurts

Pain: The physical feeling caused by disease, injury or something that hurts the body.

We have all experienced pain in some form or another in our lifetimes. If the world is kind, we hope that it is only a temporary and brief experience. And even if we don’t get a say in how long the pain lasts, at least we get to cling to the hope that it will eventually lapse so that we can then switch gears to healing instead of hurting. But what happens when the pain not only has no end date, but also has an imminent promise of getting worse? Then what?

I mentioned last year the medical issues that were overwhelming my husband and me (yep, we got married!). We didn’t have concrete answers in regards to his nerve condition back then, so we were still able to see a glimmer of hope for improvement. The possibility of pain relief was still at least obtainable in our hopeful minds because questions weren’t yet answered. Unfortunately and fortunately (it’s a mixed-bag of emotions, here), we now have that definitive diagnosis of Complex Regional Pain Syndrome. After yet another foot surgery in an attempt to improve his walking situation, James came out of it with seemingly more chronic, daily pain. So here’s what we’ve learned in the last few months that we didn’t know or weren’t told before:

1.) CRPS is not only incurable, but has a 90% chance of worsening and spreading to other parts of the body after time.
2.) There is no medicine on the market as of yet that successfully manages CRPS pain or guarantees any long-term relief. The medicines that doctors typically go for are prescribed on a strictly trial-and-error basis. Some possible treatments can also be super risky.
3.) Forcing yourself to push through the pain is the only way to try and mitigate or slow down the risks of the condition spreading (they think), but the minute you allow yourself to rest is when the pain can get its most excruciating.
4.) Doctors won’t let you just cut your foot off and call it a day if the idea of living your life in constant pain doesn’t appeal to you.
5.) The experts and specialists don’t really have good answers for you because they don’t understand it either.
6.) BUT James doesn’t NEED to use crutches or a foot cast anymore… if he can stand the pain.

So now what? My husband has an invisible disease that nobody fully understands and it has not only become the focal topic of our lives, but it also determines the majority of our actions and choices. We don’t realize how important and integral walking and standing are until the act of doing either incurs unbearable pain. Or participating in a conversation and suddenly being wracked with disorienting and distracting pain, unable to pay enough attention to really “be” where you are. I would never wish this condition on my worst enemy, yet I have to sit idly by watching the person I love the most living with it. That’s a type of pain I never expected I’d have to live with for myself either. For the rest of our lives.

I love my husband. I fully recognize that this awful situation is not something he brought on himself, and I have never and will never blame him for it. But it is certainly something I never could’ve prepared for, mentally or emotionally. I have moments of agonizing helplessness and guilt when I find that I have no offers of advice or suggestions to give James in order to alleviate the pain. I often find myself at a loss for words simply because I know nothing I say can stop him from hurting. That is a type of emotional pain I didn’t even know existed. There are so many different facets of pain, and I’m uncovering a whole slew of them lately. Whether we’re together or apart,  I’m constantly worried about his comfort level, wanting to protect him from any possible dangers that could increase his pain, but also trying to take care of myself as well. I morphed into caretaker mode because nobody wants to watch their loved ones suffer – we want to help. But I found that as I desperately tried to find ways to help, usually without success, I was letting the worry consume me so much that I stopped caring about my own well being. Even still, I struggle to find a balance between looking after my husband and looking after myself. I wonder, is this how first-time mothers feel as well – scared and unsure? Although, at least they can learn how to fix and/or improve things to encourage better quality of life for their children, right? Or they can ask professionals who can help too. I feel like this situation is so unique that there isn’t any one thing or person I can turn to for help, and it’s not something that sits well with me. Especially with the thought of the pain spreading. What happens if the pain becomes so intense down the road that he can no longer move, work, live a joyful life? How do I deal with that then? Then I remember that speculating what could happen later doesn’t help the now, so I try and drop it. But as with most things, that’s easier said than done.

I have gained a whole new respect and admiration for individuals with disabilities (seen or unseen). For those of you fighting off illnesses, caring for loved ones who are unable to care for themselves, living with pain – I salute you. You are far stronger people than I am, and I aspire to achieve the same strength. You don’t receive enough credit for the effort you put into creating and living a good life despite any real or imagined shortcomings you’ve been dealt. You face obstacles not with fear or defeat, but with determination. We are only given one life in this wicked world, so no matter what, we have to learn how to love it. Even if it hurts.

I’m learning as I go, and despite the agony we both feel sometimes, I’m so happy James and I have each other for support. And I will do whatever I can to help raise awareness and fund research projects so that debilitating, inhibiting, invisible medical conditions like CRPS can be eradicated. I can’t do everything.. but I can do something.

That’s the thing about pain. It demands to be felt.