Tag: normal

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.

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.

(From) Whence I came.

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As time ticks along, I find myself constantly thinking what I may be doing if I weren’t where I am now. And mostly, I guess I’m just trying to figure out if I miss my American life. Not to say I’m not happy with the choices I’ve made to lead me to this day, but I think it may be human nature to simply wonder “what if?”

As news kicks up in Cleveland, putting my beloved city back in the spotlight for positive reasons, I can’t help but wish I were still around to experience some of it first-hand. Maybe not so much the upcoming RNC, as it certainly poses a lot of logistical obstacles downtown that I’m quite happy to be away from, but I wish I could be in the thick of the atmosphere in general. I desperately miss watching Cavs games, especially now that they’re in the finals and I can’t follow along at 2am on work nights. I also miss having people around to talk about the games because, annoyingly, the NBA isn’t a hot topic over here! I miss wandering the streets downtown, going out with the masses on the weekends and I miss the greenery in the surrounding suburbs. And the lake. Boy do I miss seeing that beaut. Don’t get me wrong – I love London and all it has to offer, but it’s lacking that familiarity and comfort I think I had in Ohio. Perhaps that’s something that will come to me in time.

In work, I surprisingly find myself jealous of my ex-co-workers back at the TV station. When I first left, I was happy to dive into a new industry and try something else out. The depressing side of news photography was heavily weighing on me, and I didn’t want a jaded worldview so young. But now that I’m on the outside looking in, I actually wish I had that seriously heavy camera and tripod to carry around with me every day again. I loved being the first to learn about things, and I got to meet some really awesome people in my short time in news. I can’t help but wonder if I had stuck with it, what else could I have experienced? But such is life, right?

My new job is equally fun, but in different ways. I’ve been given my creativity back in this job. I get to come up with fun story ideas circulating around a topic I’m passionate about: travel. And while some days I wish I weren’t desk-bound, I remind myself on crappy weather days how I used to hate having to work outside in the elements. No more wearing 7 layers of clothing to prevent frostbite and struggling to hit the buttons on the camera with my semi-frozen hands. Or walking around in torrential downpours, frantically trying to keep my camera equipment dry. I’ve got a desk to call my own, which is strangely empowering considering how inconsequential it may seem to others. And with everything I may miss about my old job, there’s an equally long list of aspects I certainly do not. So I try to remind myself that I chose to redirect my career trajectory on purpose, and that that choice was the correct one. Will that change again? Possibly. And I think it’s my prerogative to do so as often as I want!

I’m happy here, more so now that I’ve had time to settle in, meet new people and have a routine. But I also think now that I’m finding London ‘home,’ it makes me feel nostalgic about what I’ve left behind. I’m sure all of this is normal, but for me, it’s the first time I’ve ever actually missed my hometown, so it’s a new emotion to face. And maybe, eventually, some of my friends from back home will be able to visit and bring a taste of the CLE with them. Until then, know I’m thinking about you all and miss you dearly! And London is still fabulous and exciting, but hasn’t changed my Northeast Ohio soul one bit. Cleveland strong, baby!

Size stigmas

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Women obsess over size. Weight, height – what have you – it’s like we’ve been conditioned to demand this unobtainable idea of size perfection the split second we’re born. And while there appears to be this gung-ho feminist/girl power movement cropping up all over the world with cheers of acceptance to those who don’t “meet” society’s idea of “attractive size,” I’m sitting over here thinking.. well, wait a minute. This is all fine and dandy, but what about girls like me? Dove’s “Love Your Body” campaign sounds inspirational and empowering, but it seems hyper-focused on the idea that there is such a thing as too skinny, and if you fall under that category, there’s something wrong with you. Real women have curves, right? Actress Sophia Bush struck up a campaign declaring that “zero is not a size” a few years ago too. And while I sit here, staring at a pile of jeans with tags that read “0,” I’m feeling rather insulted. Women are encouraged to accept their curves and rejoice over them because being rail thin is unhealthy. While in some cases, I can fully stand behind this idea (thinness caused or brought on by eating disorders or self-inflicted harm is obviously not good), those of us healthy women who are naturally petite shouldn’t feel so scrutinized! Why are “plus sized” women getting high fives while petite women are getting concerned looks?

I have always been petite. My family jokes that I was the runt of the litter, but it’s quite honestly accurate. I stand 5’2″ and hover between 90 and 100 pounds. My entire life, I’ve always had people make jokes about my size, pick me up against my will just to see how light I was, analyze my meals, hold things up high so I couldn’t reach them.. childish things that they may have thought were funny, but 20 some years later, the jokes get old. I’d even argue that I am made fun of for my size more often than someone who may be overweight. Why? Because it’s less likely for someone to feel brave enough to pick on an adult because they are overweight than to pick on someone who’s tiny. It can’t be insulting if you’re not calling them fat, right? Wrong. And it’s not only peers who chime in. I avoid seeing doctors as often as possible partly because I know they’ll accuse me of having an eating disorder. I do not have a disorder, but when people point out my perceived deficiencies, I’ll admit that it’s hard not to dwell on them. I recently started a new job that requires lifting and traveling with fairly heavy camera equipment. It never fails that on any given day, someone, whether it be a coworker or stranger who sees me on the street, makes a comment about how it looks like I’m struggling and laughs. Usually, I’m not struggling in the slightest because I’ve learned how to adjust with my small body. I believe, for my size, that I’m strong. But if you compare me to an average woman my age, you’re setting me up to fail. I am not average, and on most days, I’m happy about that. But not always.

Certain things in life are harder to handle when you’re “abnormally” small. For instance, shopping instantly becomes a nightmare. Trying on clothes that overwhelm my small figure is a blow to my ego. There are certain articles of clothing that I’ve simply had to give up on because there’s no way I can ever wear something like that unless I get it custom made. Wearing heels draws attention to my very thin legs. Wearing short sleeves exposes my scarily thin arms. Midriff-bearing tops direct all eyes to my very profound ribcage. My every outfit decision is based around the question, “do I look like an adult?” because I am so often teased for looking much younger than I am and I want it to stop. Bathing suits are a topic I can’t even delve into. I’m paranoid when I go out drinking with friends because I worry that I’ll be accused of underage drinking even with two forms of ID. I avoid eating in front of other people as much as possible because I worry they are judging not only what I’m eating, but how much I wind up eating. This makes going out to eat with friends much more stressful than it should be. I can’t reach a lot of things that most average-sized women can reach. I’ve walked away from many things that I wanted simply because I couldn’t reach it on my own and I was too embarrassed to ask for help. And while many things are merely inconveniences, a fair portion of the problems associated with my size are the mental blows to my psyche thanks to the negative stigma attached to small size.

Recently, I’ve been trying to shop for a wedding dress. While most girls get over-the-moon excited for this process, I was honestly dreading it. Most wedding dress designers don’t make gowns that would comfortably fit my frame. It’s a fair estimate to say that the smallest available size tends to be a size 2. You slip that on my body, and I’ll be swimming in it! And while I understand the fact that every gown is altered to fit the bride, tailoring costs extra the more you need done. And I’d need a lot of work! But I told myself to ignore the fact that every dress I try on will be gigantic and to envision how the final product will look. Now, if you’ve never tried to do this, let me tell you one thing: it’s really freaking hard to do. Especially when the majority of the gown is smushed up and pulled back and completely distorted from its original silhouette. It’s not easy to convince yourself that you look beautiful when you feel like your body is corrupting the whole image.

So my point is this: although I’m all for empowering women, I think we need to focus more on individuality rather than targeting certain groups and trying to lift them up over others. Acceptance, above all else, should be the focus. Plus sized women shouldn’t be cheered on if it means stomping on thin girls in the process. We need to support one another to encourage mentally and physically healthy women. And we also need to learn to accept ourselves. I have good days and I also have days where I could use encouragement. I’ve learned to put the perks of being petite above the pitfalls. And overall, I wouldn’t change who I am or how I am, but it’d be nice to feel like my size doesn’t immediately stigmatize me in society. That would be a movement I can get behind.

Once you accept your “flaws,” no one can use them against you.