Tag: love

We all march on…

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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

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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

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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 eye of a tornado

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I’ve found myself relating to this excerpt from The Bell Jar by Sylvia Plath lately:

“I felt very still and very empty, the way the eye of a tornado must feel, moving dully along in the middle of the surrounding hullabaloo”.

A few times a day I have to drag myself out of a haze, as if forcing myself to remember that there’s a whole life happening outside my current perspective. It’s hard to give anything else even a smidge of priority because, at this moment in time, it all seems like… well, it all seems like a waste of time. What could possibly matter more than what’s happening right this instant? Why should I care? 

Three weeks ago, my husband elected to trial the spinal cord stimulator, which is the device implanted at the base of his spinal column intended to intercept pain signals from his brain to his leg. We were dancing around the subject for some time, not confident that another surgery was the best route for us. But after having spent time in my hometown in the US and consulting another specialist there, we quickly realised this was our only option. We weren’t going to sit around and wait until it got progressively worse. As horrified as we were, and as unsure that I still was about the whole concept, we went ahead. We knew, logically, there wasn’t another option.

Let’s talk about how that surgery day went for me:

I spent the night before having panic attacks and crying fits, absolutely petrified when faced with the risks and the unknowns, and how we wouldn’t know if this was a good idea until the procedure was done. I don’t like not knowing. When the morning came, we left for the hospital in a fog of exhaustion and apprehension. We got a hospital room to ourselves, which I viewed as a luxury when compared to previous experiences we’ve had with the NHS. His nurse was nice and clearly knowledgeable, and the doctor answered all my inane questions and quashed my initial concerns with facts. Then we waited. My husband fell asleep, while I sat there rocking in my chair, holding in tears and desperately trying to distract myself with books and my phone. When they finally came to take him for the operation, I hugged and kissed him, told him I loved him and that I would see him soon. The minute the door closed, the flood gates and panic were released. I can’t remember the last time I’ve felt that worried or scared. My dear friends consoled me and tried to bring me back to reality as I waited in that room, alone, for four hours. When they finally brought him back to the room, he looked uncomfortable but in good spirits, all things considered. I cried some more, this time happy to have him back, and we waited to be discharged the same day. His whole back was bandaged up and he was in a good amount of pain, but by the time we got home, he said he felt like the device may already be helping. I clung to that positive aspect with all my might.

For two weeks, he tried to live as normal of a life as possible to truly test the device’s power and its effect on his foot pain. We had a few scares – a few days after the initial surgery, we spent 7 hours at the hospital thinking something was wrong. Toward the end of the 2-week trial, he somehow managed to accidentally power the device off, which meant all the foot pain came flooding back full force. Some days were exciting and positive, others were terrifying and hard. The emotional rollercoaster was insane, and I was struggling to keep up with my own well-being.

My days began and ended with my husband. We woke up, I helped him wash, I dressed him, I fed him, I looked after him in nearly every way possible. There are so many limitations with this procedure post-surgery that it’s almost laughable that the doctors advised us to ‘return to normal life’. This is not normal. I can only imagine he feels like he’s lost his personhood entirely. Meanwhile, it burnt me out. I’m still burnt out.

Despite all the chaos, we still went to work. I honestly don’t remember much of the last three weeks, though. I was there… but I wasn’t there. The stress of my personal life and the stress of my work life melded into one and I was just sat in the middle watching it whirl around me. This is my life. I couldn’t believe it was real sometimes. It was all a bit too much.

Well, those three weeks have come and gone and James felt the pain relief was high enough to go ahead with the full implant. So there we went again, back to the same hospital to get all the wires and the battery pack that had all been hanging outside of his body the last few weeks shoved inside and sewn back up. Gross, right? Did I mention that I do not do well with blood and guts and gore and especially hospitals? Adrenalin is a powerful thing folks – it’s kept me from passing out/vomiting this entire time! Anyway, we repeated the same process all over again, but this time I went armed with actual things to do like work, brought my own lunch so I didn’t have to deal with the anxiety of leaving the hospital, brought my own coffee and set up shop at the desk in the hospital room. I can’t say time went by any faster or that I was freaking out any less than the first time, but it helped to have things to do that had deadlines. It forced me to focus on work instead of speculating. It forced me to forget, albeit temporarily, that the last nugget of information the doctor gave us before taking my husband to surgery was that they may have to take the entire device out if there’s any sign of internal infection, let it heal for a month or so, then start all over again from the beginning – but they wouldn’t know that until they opened him up on the table. Gee, thanks! I know to these doctors, surgical procedures and risks are all in a day’s work, but sometimes I wish someone would remind them that patients are still real people who have worries and fears. While facts are important and appreciated, there’s a time and a place to drop those bombs.

Regardless, he went and I waited as impatient as ever. Praying to the god that I don’t actually believe in, but wish I did in moments of distress. This time when he came back, my breath caught in my throat. He looked horrible. He looked like he was in a serious amount of distress, pale and really very unhappy. It scared me. I must’ve asked him a thousand times if he was okay.

We learned later that he had been given ‘quite a great deal of morphine’ this time around, which is likely why he was feeling so awful. But despite this, he was chipper! He excitedly told me he could tell the device was definitely working, how the first thing he asked the nurse was when could he run again? His positivity inspired and shocked me, but still, he was in a noticeably great deal of pain.

We, again, went home the same day. A 90-year-old could’ve lapped us at the speed we were moving, but we eventually made it back and up the stairs to our flat. The pain this time around was horrendous. It makes logical sense – he has a foreign object wedged in his lower back, causing a bump nearly an inch out from the rest of his body. Pain meds have been his crutch and impatience has been his greatest weakness. There’s no bouncing back from this… it’s a gruelling, slow, immensely painful healing process. We’re both freaked out by this unnatural bulge in his back, and struggling to accept that this is ‘normal’ for the foreseeable future. Twenty-somethings faced with a hardcore, fairly unique medical obstacle. Yeah, it hurts. Figuratively and literally. C’est la vie.

But we’re here now. He’s still in pain from the procedure and I still cry every day from the stress and fear of it all. But the device is helping. The device is helping. Sometimes I feel like I need to scream it to myself to remember, but this is why we did it. This is exactly why we thought it was worth the risk. The end game is important. There will be healing. The surgical pain will subside. He will gain his independence back and we’ll have our lives back. This is what we’ve been dreaming of for years. YEARS. This condition marred our entire relationship and for the first time, we see the light at the end of the tunnel. You guys. Do you understand how unbelievable this is? Do you understand how life-changing this whole thing will be? Some days I can. Other days it’s effort just to remember to put the leftovers in the fridge, which I’ve forgotten to do twice in a row in the last week.

Boy, I can’t wait to have balance restored. In the meantime, to those trying to interact with me on a daily basis: I’m sorry. I’m sorry because I’m not ‘all there’ yet. My head and my heart are still wrapped up in this aftermath, if you will. I know the storm will pass and winds will calm, but time is on its own path. So I’ll just sit here in the chaos until then, but I promise I won’t get too comfortable here.

My days still start and end looking after my husband. I’m still exhausted. I’m still burnt out. I’m still questioning if anything else matters other than this. But despite it all, I still get up and go to work. So maybe I’m a bit stronger than I’ve been giving myself credit – despite the alarming volume of tears I’ve shed recently.

Tomorrow will be better.

P.S. Our hospital room had a partial view of the London Eye. Just try and tell me that smidge of London beauty on a monumental day like that wasn’t a metaphor.

Cheers, 2016!

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So 2016, now’s the time to say our farewells. I like to try and take the time to reflect on the whole year that’s passed before I allow myself to start planning for the arrival of the new year, so here I am – at it again!

This past year has been a rather difficult one, to say the least. I’ve moaned and griped for quite some time now, but I’ll be happy to put that to bed and start fresh… after this last post!

2016 began slow for me. I had just moved to London and was still struggling to find a new job in line with the new career path I was pursuing. I was noticeably despondent – feeling sorry for myself and feeling like I was never going to find my place in my new city. But by March, I had happily accepted a new gig in the travel-writing sphere and threw myself into work full-force. Although I was happy to work, I still found it tough to transition into an atmosphere that was totally new (and vastly unconventional) to jobs I’ve held previously. The environment was bubbly and relaxed, and everyone seemed to be best friends with each other. A huge contrast to the news industry, from my experience. I felt awkward for many, many months, fearful that all the times I turned down tea from my coworkers would make it seem like I was rejecting British culture! But it didn’t take long for me to chill out and find my place in the office, although I’m still partial to coffee over tea. I got a promotion within 6 months on the job, which certainly helped me feel valued. But most importantly, I made friends I hope will last forever. My colleagues may not know this, but they’ve helped London feel like home – something I had been missing the first 6 months post-moving abroad. I can’t imagine working anywhere else. I truly struck it rich.

My new job has also helped me survive my personal life this year. As many know, it’s been a tough year in my marriage. My husband’s nerve condition spread to his hand, and it had been so painful for him that it had an immediate effect on both of our lives. He was hurting, angry and scared, and in turn, I was the same – just in my own way. With the sudden changes in his health, we found we were asking questions we never thought we’d have to ask before: are we running out of time to have kids before his condition is too bad that he can’t help me in raising them? Will he be able to continue working? Can I be the help he needs? Who can help me deal with this? I was working to escape the stress of my personal life. The office became my sanctuary and my breathing space. I found focusing on my work a happy distraction from all the fear and worry swirling around in my head on any given day. My colleagues were supportive and nice and understanding, but also gave me the space I craved and needed at times. They helped give advice and suggestions when I needed them, or offered ideas I wouldn’t have thought of on my own. I don’t think I would’ve dealt with this year’s drama as well as I had if it weren’t for my incredibly supportive colleagues.

I relied heavily on family this year too. Though I’m sure they already know it, I think it’s worth mentioning my gratitude: Thank you to all my family members – kin and non – who’ve been there for us when we’ve needed it most. We’ve got a global support system, and we can’t thank you enough!

The stress of the medical issues in our lives was enough to crumble our marriage. But it didn’t. We got through some incredibly horrendous moments and became even closer and more enamoured with each other at the end of it all. We left London toward the end of December feeling hopeless about finding relief for my husband. Our doctors in the UK led us to believe that my husband didn’t have any other options available to him. That pain relief was impossible, and the best they could do was continue to prescribe drug after drug in an attempt to manage the pain. But we didn’t take this as a final answer – we couldn’t. We made an appointment at the Cleveland Clinic for a second opinion, feeling like there must be some other medical professional in the world who could offer us new information. It would be expensive, but how could we ever put a price tag on quality of life?

Turns out, that one appointment was all it took to regain the hope we had lost throughout 2016. We met doctors who very clearly understood his nerve condition on a level our previous specialists did not. They gave us new ideas to pursue in finding ways to relieve the constant pain he’s in, and even trialled a new medication we had never heard of before. We feel like we can now return to London armed with new knowledge – plus a team of US experts ready and prepared to help us should Europe be unable.

And me? Well, 2016 tried to suck all the hope and happiness from me… and nearly succeeded. It hasn’t been easy to keep my head above water, but despite everything, I’m proud to say it taught me a lot. I’ve gained tools and a support system that I didn’t have before that are helping me be strong and positive and goal-oriented. I feel more prepared than ever as 2017 rounds the bend, and that is a pretty great feeling!

So good-bye, 2016! It’s been a weird and arduous year, but I’m leaving with a new outlook and newfound hope for a successful and positive 2017. The best gift the year could’ve given me.

When you start to feel like things should have been better this year, remember the mountains and valleys that got you here. They are not accidents, and those moments weren’t in vain. You are not the same. You have grown and you are growing. You are breathing, you are living. You are wrapped in endless, boundless grace. And things will get better. There’s more to you than yesterday.

Life now

13880394_10154406098136350_5826270149240278047_nLet me tell you about chaos.
Explain how it does not tear you apart, but seethes and simmers within, building in strength with each passing day, growing in intensity like water to boil.
And when the heat reaches your skin, all you want is to peel it off and run, frantic, panicked – because you thought that was your only option when you only had seconds to decide.
And oh, how you wish you hadn’t.
Let me tell you about chaos and how it destroys every shred of hope you once held, but selectively.
Bit by bit, they evaporate into thin air and all you have left is the thought that you really needed that.
But too late now.
There is no screaming, there is no sound.
You remember the silence most, as the whole world around you spins wildly out of control.
As your body betrays you and breaks down, slowly, and then suddenly.
You close your eyes to rest, and wake up to do it all over again.
Let me tell you about chaos.

This is now the sixth time I’ve started writing this blog. The last times I gave up after writing a few sentences, unable to put my thoughts into words. Not sure how much information I wanted to put out to the world, or if I was ready to even accept any of it myself. Then one day, as I was struggling to keep myself together, I found I needed to write what my feelings were as they were coming out. And so another of my many poems was borne, and here I am again trying to talk about the chaos that I call this life.

I’m familiar with struggle and I’m friendly with perseverance. I’ve grown used to my pathway being paved with difficulties to overcome, and my track record of success is thankfully greater than my failures. I work hard, I work tirelessly and I hope it pays off in the end. But that’s the thing – I expect there to be an end of some sort. No matter how tough things become, I’m able to keep moving forward because I feel that at some point, the difficult times will pass and I’ll get through it. That’s how we survive, isn’t it? On the faith that those times will pass. We hope to live.

But how do you keep forging ahead when that isn’t a possibility? How do you pick yourself up and keep going when you know, for a fact, that the odds of improvement, of a better life even, aren’t in the cards? Then what?

Most people are aware that my husband is disabled. Most people don’t, however, fully grasp the severity of it. And let me be clear: I do not seek pity. I do not want anyone to feel sorry for me or for my husband, but on some level, I wish they could understand better so they know how to act around us.

His condition is rare. And even as I type that, I want to stress how genuinely rare it is. Only a handful of doctors in the entire world are qualified to properly treat it, and even those doctors all have varying levels of comprehension and understanding. I’ve lost count of the number of occasions where we completely stumped a doctor. Imagine that frustration.

The nervous system is incredibly complex and intricate, so the medical world only understands a small percentage of it with any level of expertise. And CRPS happens to be one of those lovely conditions that manifests differently in people, and is only diagnosed after every other possible medical problem in history is first ruled out. A diagnosis of elimination instantly tells you how little anyone understands it. And the pain my husband experiences because of this disease is intense. It’s akin to the sensation of breaking a bone… many, many times during the day and then never having it heal. One doctor compared it to child birth pain. Now, I’ve never had a kid myself, but I’ve certainly heard plenty about the experience to appreciate the level of strength my husband must have for dealing with constant, chronic pain of this level on a regular, frequent basis.

After many surgical attempts, including killing nerve endings, embedding nerves to trick the brain into thinking it was no longer there, bone surgeries, injections, tests, trials and a million other last-ditch efforts to give him relief, we wound up with one last option left on the table. The treatment is called spinal cord stimulation (SCS). Sounds pretty intense, doesn’t it? Well, that’s because it kind of is. Essentially, it’s one of the only treatments for CRPS sufferers known to improve quality of life, even if some cases turn out to be temporary relief. Much like a pace maker, it’s an implant that goes right into your back with wires connecting to your spinal tissue. The pack sends electrical messages to your brain to dampen pain signals. Neuromodulation manages pain signals, but does not cure the condition. It is not a cure. There is no cure. But if SCS lowers someone’s pain by even 50%, they view that as a success. But with all things related to CRPS, there is no way of knowing if 1) SCS will help someone or 2) how long it could help someone if it proves a success. We thought, however, a 60-70% success rate among other CRPS sufferers was a high enough number for us to give it a go. Even now, we haven’t allowed ourselves to speculate how it would affect us if he doesn’t respond to SCS. We simply can’t consider that at this point.

Since starting the trial programme in which an army of medical professionals work together as a team to determine whether or not my husband is mentally, physically and emotionally stable enough to continue with such a serious procedure, more problems have come to light. Of course, right? Because it’s not enough that he has an incurable disease that will likely only worsen in time. It has to be even more complex.

Although no one seems to understand why exactly, CRPS is known to spread from one limb to another, or all, after time. There’s no rhyme or reason to where it spreads, it just can. My husband has it in his left foot, and in the last month, it’s seemingly spreading to his left hand now. Except! Get this – it appears to be another form of CRPS. DIFFERENT to the type he has already. He’s only had an official diagnosis on his foot for a few years, and to now be starting the process all over again for a different body part is… exhausting, to say the least. And horrifying. It’s still early stages, we think, but we’ve already begun ruling out any and all other possibilities with weekly tests and hospital visits. So the hope of SCS putting an end to the incessant misery his foot was causing was quickly replaced with fear and worry that this new development would not only affect his candidacy for SCS, but also progress to the level of pain he experiences in his foot already. This was our worst case scenario coming to life. Again, you take away the hope of a better life, what does that leave you?

I know he’s struggling, but I can’t speak for him. I’m not him. I don’t feel the same things he feels. But I do my best to show support and strength even though I absolutely do not feel I’m doing it well. I watch him hurt, I watch him panic, I watch him sink deeper into a depression that I’ll never be able to fully understand because whilst I can empathise, I don’t feel what he feels. I never worry about my being able to walk, or whether or not I can pick up a glass of water. But I watch my husband do it every day now. I have to stand by, helpless, watching him hurt and watching him stress about how to go about a “normal” life when he’s nowhere near the level of an able-bodied person. Taking the stairs is a challenge. Today, I watched him get emotional because he couldn’t pick up his burger. And all I can do is remind him that I love him and that we’ll get through this… even when I’m not so sure we can. I worry that I sound selfish when I talk about his condition, but I’m the only person who can talk about how this whole situation affects me. And he’s the only person who can talk about how it affects him. I’m scared. I’m scared for him, I’m scared for me and I’m scared for our future. We still have so many questions that will likely never be answered. Take a moment and imagine how that could possibly feel. Having a doctor tell you, “this likely won’t get better. This will probably spread to other parts of your body. This treatment may not help you.” There are no definites in any of this. And for two people who like to know all the answers, it certainly hasn’t been an easy pill to swallow.

There are moments when I’m so consumed by emotion that I simply cannot function. I get up and walk out of my office several times a day when I feel tears well up. I am constantly bombarded by friends, family and colleagues who genuinely mean well when they ask how things are going, but are actually forcing me to revisit a subject that is physically painful for me to discuss. When I met my husband, he wasn’t disabled yet. He didn’t have CRPS. And since we’ve been together, I’ve been forced to watch it degrade and become worse and worse and not being able to do a damn thing to help. And at this point in life, when we were at the brink of hopefully having relief with SCS, we’ve been ripped back down to earth to face an ugly new reality. And we weren’t ready for that. I’m still not ready for it. But this life doesn’t wait for you to be ready. And I’m angry. Scared. Wishing I could fix everything to give my husband the life, and physically-capable body, I feel he deserves. We’ve been dealt so many awful cards in the four years we’ve been together, that at this point, it all feels like a cruel joke.

I want you to understand that we are suffering. We are mourning the life we had planned for ourselves and trying to accept the one we were given instead. It is not an easy task, especially when it feels like nobody understands. Don’t tell us things will get better. We aren’t foolish enough to cling to such a dangerous hope. Tell us we’re strong. Tell us we’re capable of making the most out of a horrible situation. Tell us we’re handling it well even if you catch us having a breakdown (which we do, frequently). I don’t need you to feel sorry for me, either. Yes, I’m struggling and I’ll never deny that. But as much as I’ve wanted to all throughout this journey, I will not give up. I simply can’t. We are stronger than this pain, and I aim to prove that until my last breath.

“Be kind. For everyone you meet is fighting a battle you know nothing about.”

Reflections

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Now that it’s 2016, I feel obliged to reevaluate my life’s trajectory and try to find some meaning in the chaos thus far. Granted, that wasn’t my initial thought process. The inspiration actually sparked when I saw all those New Year’s Eve Facebook posts from all my virtual friends, updating the cyber world on their proud moments of 2015 and how they all hoped 2016 would bring even more. Apart from being slightly annoyed by all of those posts because, let’s face it, not all of them were all too impressive (SORRY), I sincerely wanted to share a post of my own. But no matter how much I sat and thought about how I could sum up the whole of 2015 in one relatively brief Facebook status, I simply couldn’t do it. Why? Well, to put it frankly, 2015 was littered with more painful, stressful, heartbreaking and overall difficult moments than anything else. But I don’t want to be so cynical this young, so in an effort to brighten up my mindset, I’m going to review my year and pat myself on the back a little.

2015 started out on a rough route, beginning with wedding dress stress that could really only happen to me. I fought with the owner of the bridal salon where I purchased my dress over moral and ethical values days before my wedding. It was incredibly hard and emotionally draining because I felt I was robbed of my “perfect wedding dress moment.” In the end of this months-long battle, I came out of it victorious, sort of, receiving monetary compensation for the trouble I had to go through. Even when I look back at this drama now, more than a year later, it still really upsets me. I hate that this woman acted so unprofessionally and made an already stressful time period even worse. But with further contemplation, I can admit that I’m also a little proud of myself for how I handled the situation. It was truly a, “holy crap, I’ve sure grown up!” kind of moment! For the most part, I kept my cool, I did my research to make sure I understood the law and that I wasn’t doing or saying anything that could hurt me. I asked friends and family for advice on how to proceed, and found I had a whopping amount of support on the matter. I made my point and I walked away with my dress in the end. I need to try and remember this part more than the emotional distress.

My wedding. My goodness. I’ve never cried so many happy tears in my entire life. It was truly the highlight and best moment of 2015, without a shadow of a doubt.

Shortly after the wedding, however, James had his final foot surgery. It’s amazing how quickly we can forget about the happy times when we’re faced with adversity, but this moment in 2015 was definitely top 3 of the worst. We dealt with a surgeon who was not only unkind, but also seriously and verbally doubtful of a positive outcome post-op. We fought with the NHS, and James suffered a great deal of pain. I, as his caretaker, found out how fiercely I cared for my husband and to what lengths I was willing to go to ensure his full recovery (insane lengths). For once, I had to be the rock in the relationship, and although I’d go home every night after visiting him at the hospital and cried myself to sleep, wracked with worry, I did my best to only show him strength because I knew how important it was to help him get better. But you know what? He recovered from the surgery and life improved. He will always have pain every day of his life, but now he can walk without an air cast, an accessory we both grew to hate. Small victories are still victories. One day at a time, right? Until then, we still hope for a cure.

My career was also going significantly well in 2015, having begun my second year as a news photographer in Cleveland. My coworkers seemed to like me well enough, and if they didn’t, they did a fantastic job at hiding it. I was given more responsibilities and trusted with higher caliber stories during a pretty interesting time in Cleveland history. I worked long days and often strange hours, sometimes tallying 9-10 days of work in a row. Some days were really tough, but others were amazingly fun. I made some pretty great friends at that gig, and the experiences I had taught me so much about the industry as well as myself. Let’s just say.. you never know how emotionally strong you are until you’re the first media responder at an incredibly grisly emergency scene. I left that job a better person, and as ready as I was to leave and start my life in the UK, I really do miss that place and the people who pushed me to excellence.

In late summer of 2015, my husband and I were finally able to apply for my UK visa. I have never put so much thought, energy and emotion into something before in my life. All of the necessary elements of our life finally fell perfectly into place and we were ready! And by early September, my visa had arrived. Apart from marrying my best friend, being told we can finally live in the same country together was the next best moment of 2015. I put my two weeks in at work the same day my visa arrived and began packing my life into a few suitcases. But before I could leave, my grandfather had a serious accident days before my flight departed. I dropped everything to be by his side, terrified for his well-being and questioning whether or not I should leave at all. Add this to the list of the most terrifying things that occurred in 2015 for me. But with my family’s blessing and promise to keep me updated on his progress and health, I made the journey to begin my new life. And I’m glad I made that decision because seeing my grandfather’s improvement over the holidays eased so much of the guilt I felt for leaving. Sometimes we have to make tough decisions. Or in my case.. often.

Now, these are just a few massively huge growth experiences that I had in 2015. There’s SO much more that it’s actually quite alarming, but hey, I fit a lot of life experiences into short amounts of time all the time! I look back and think how in the world I survived that roller coaster – or better yet – how in the world I made it to where I am now. I want to say I’m lucky. That the world was just nice enough to keep pushing me in the right direction. But in reality, I know that I am where I am today because I was determined (or as my mother would say, stubborn) enough to succeed. 2015 gave me a million reasons to want to throw in the towel, huddle in the corner in the fetal position and give up entirely. I still firmly believe that one single person shouldn’t ever have to deal with the amount of tragedy and strife I dealt with in 12 short months. BUT in some weird, twisted way, I’m glad it was me. It pushed me into adulthood faster than anything else, but it was necessary to experience so that I could see for myself that I can handle the world on my own. That I’m strong and a force to be reckoned with when faced with an obstacle. And when the clock struck midnight on the morning of January 1, 2016, I truly felt ready for what the new year would bring. Because in my mind, I’ve already dealt with so much in my short life that what’s one more bump in the road? I’m where I always wanted to be in life. And that, my friends, is both amazing and terrifying. Bring it on, 2016. I’m ready!

This adventure

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Well, things have changed a bit in the last few months. Is that the understatement of the year? Hello, my name is Tanya and I’m officially an American expatriate living in London. It seemed like a far off dream that may never come to fruition, and now I wake up next to my husband every morning and find myself using words like “telly”and “crisps”and being genuinely awed by the constant beauty I stumble upon in this city. It’s strange when I’m the one with an accent and having to spell words with an extra ‘u’ or exchanging a ‘z’ with an ‘s,’ but I’m managing!

People talk about starting over all the time, as if it’s this imaginary opportunity that is too far from reach but still appears occasionally in our daydreams when days are rough – a wonderful possibility, but unlikely to happen. Yet here I am, living proof that it can happen.

The day I found out I was moving abroad and began telling friends and family, I was met with a chorus of “good for yous” and “well dones,” commending me for never giving up on my goal and finally achieving it, years later. Naysayers were shocked at my success, and supporters popped out of every nook and cranny on social media, suddenly donning team Tanya cheerleading outfits. I felt accomplished and excited and ready for this new chapter in my life, but more importantly, I felt fear. I was legitimately starting over. How the hell can you prepare for that?

By nature, I’m a planner. I make lists, I plan ahead and I like to think I’m usually prepared for almost any eventuality. But in this instance, I had no idea what I was doing or what to expect. I played it cool, calm and collected for the most part, but I was harboring a deep panic on the inside. Sure, I had previously lived abroad multiple times. But those instances were always temporary and for short periods of time. Was I ready for the long term? Could I hack it?

Even still, I don’t have answers to those questions. The reality of my fear grows each day. Some days I even struggle to leave the flat, afraid someone will tease me for my American accent or I’ll get hopelessly lost and be unable to find my way home. All of the stress and pains of finding a new job in my field that I once thought I had finally hurdled when I landed my last position have returned with a vengeance. Yes, I’m finally living in the city I’ve been aching to be in with my better half by my side, but I’d be lying if I said every day was a breeze. Even if you tried to imagine what it may be like to pack a chunk of your belongings into a few suitcases, say good-bye to all your friends and family, quit your job, leave behind all sense of familiarity and move 4,000 miles to a different country that operates far differently to what you’re used to… it still doesn’t scrape the surface of how it really feels. Hell, when I first got here, I didn’t know how to operate any of the appliances or even open my front door without getting help first. In a lot of ways, I feel like a child figuring out the world for the first time. And at the ripe old age of 25, it’s easy to see how that can be a major blow to your confidence.

The day-to-day stuff is hard. I don’t know anyone in this city, I’m alone and left to my own devices the majority of each day and I’m now 5 hours ahead from those I did know back home. I thought I could still seek support from the friends I left behind, but within days of moving, I quickly realized that my moving abroad symbolically served as the death of all friendships I once held. I thought it’d be hard keeping up friendships when I never got to see them anymore, but I thought I could make it work. What I didn’t think was that most (if not all) of those friends would choose to write me off and stop speaking to me entirely. That was something I wasn’t ready for. I’m not angry about it because I understand the difficulties of maintaining long distance relationships of any kind (um, hello!), but I guess I didn’t expect to be so on my own so soon.

And while it’s easy to get down and out about the things I’ve lost and the changes I’ve been forced to go through, I try my hardest to see the best in my situation. This is my blank slate. This is my chance to rewrite my future, and for once in my life, there’s no question of whether or not these plans would permanently include my best friend, my partner in life, my soulmate. I’m here now and for as long as we choose to stay here. There’s no more wondering what may come because I’ve finally got the power to make those decisions myself. And as terrifying as that feels sometimes, I also know how powerful it is too. Not many people get an opportunity in life like this, and despite whatever reservations seep into my thoughts, I know I’m lucky and I know of all people, I’m strong enough to prevail and come out of this experience a better person. I may have a mixed bag of emotions, but at the end of the day, I know I’m right where I belong.

It feels good to be lost in the right direction

Carry on.

This blog has quickly turned into a place where I pour out complicated details of my life, but I suppose that’s healthy and if people want to read it – cool.

My job gives me an opportunity to meet a lot of people under many different circumstances. They tell me intimate details about their lives, and some are heartbreaking and hard to hear. But as with any situation, I try to walk away having learned something new about life.. as well as myself.

In the news industry, you’ve really got to have a thick skin because you see, hear and experience a lot of traumatizing things. So one thing I’ve learned about myself is that if I can classify something as “all in a day’s work,” no matter how traumatically emotional it may be, I can shelve it and go on with my regular day-to-day as if it hasn’t affected me at all. For example, I’ve been to so many emergency scenes that I’ve lost count where people have been seriously injured or even died, but it doesn’t phase me. Mentally, I see experiences like this as simply the nature of my job, and it’s my duty to capture the experience in order to share it and teach others. But if something happens in my personal life, not even on par with some of the things I experience on the job, it has the power to cripple me for days at a time.

As most of you know, my husband and I have been working our butts off to finally get to live in the same city together. Visas and paperwork complicate the process quite a bit, but we take it day by day. Most recently, we had finally found an apartment in London that checked all of our boxes, and we quickly put down a deposit to make it ours. It’s been years in the making, and finding an apartment eliminated one of the final obstacles keeping us apart. We were thrilled! We started talking about how we’d decorate the place, what furniture we needed to buy, how we’d spruce up the back garden to make use of it during the warm months. We were having so much fun making plans because it finally felt like our future together – in the same place – was here. Well, in true “just our luck” fashion, this dream came to a grinding halt. The current tenant decided to stay last minute, so we lost our dream flat. All of our plans went up in smoke just like that. Back to square one. I wasn’t just devastated, I was angry. After everything we’ve been through, how dare the world do this to us?! The end was in sight! I allowed myself to get excited only to have the rug ripped right out from under me?! That’s not fair! That’s not right!

As soon as I heard the news, my entire demeanor changed. My entire outlook on my future became bleak. “I’ll never get to London,” I thought. “It’s just not meant to be.” Neither of us had even moved into the place yet, but it still felt like someone took something of ours away. I cried. I punched pillows. I threw a mini fit in the privacy of my room. I yelled at my husband even though he had nothing to do with the tenant deciding to stay put. I just couldn’t handle it.

And then I gave myself time to think. A few days ago, I had a conversation with a coworker about personal battles we all fight in our private lives, and how we must then put on a brave face in public and act like nothing is bothering us. And I thought how easy it is for us to completely ignore our feelings like that for the sake of saving face. Unless it’s your job to remain unbiased, you’re allowed to let things affect you. But then I ask: how do you decide what is allowed to affect you and what’s not? On the job, I’m completely numb to emotion. But off the clock, it doesn’t take much to get to tantrum town. So how do I find a healthy balance?

Talking to people helps. It’s a blessing to have level-headed people weigh in on your situation and give you perspective. On the job, sometimes I’m that person for victims’ families. And it doesn’t take a rocket scientist to know that their situations are much more dire than the ones I’m facing right now, which brings me back down to earth. If someone whose grandson was shot and killed at close range by a police officer still has faith in the power of positivity and future change, who am I to let something like a silly apartment damn my future?

So here’s what I’ve learned: It’s okay to be sad, mad, hurt. To quote my favorite movie, Elizabethtown, “you have five minutes to wallow in the delicious misery. Enjoy it, embrace it, discard it …and proceed.” We are human. We have emotions and we shouldn’t feel embarrassed or ashamed of them. We NEED to feel what we feel, but once we have, we cannot wallow in it. Life is too short to fixate on one problem, especially if it’s a problem we have no control over. In my case, I do have control. I can find a new apartment. The world isn’t ending and my future isn’t doomed. For a hot second, it sure felt like it. But now that I’ve dealt with the appropriate emotions, I can move on to finding a solution to the problem. I remain stoic at work because I have to, but I need to face the experiences I’ve had even if it means returning back to the moment mentally and in private. If we ignore how we feel, the smallest problems can seem like nightmares and we’ll burst. Empathy is healthy and helpful. And it’s okay to admit that life is hard sometimes for everyone, but we can’t stop living.

We are intrepid. We carry on.

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.