Tag: inspire

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…

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.