When I took a break from my blog back in February to focus on my book, I said that I would still write a post from time to time. But I didn’t mean for it to take four months!
Well, I’m back. I hope you are all doing well and find yourselves returning to pre-COVID activities. This world is in desperate need of more in-person connections and conversations. Social media is its own form of isolation and is not an accurate representation of the real world. There’s nothing quite like talking to someone in-person and pretending to listen.
I am just completing a two-week vacation. It was a staycation, but relaxing nonetheless. I live five minutes from the ocean, and there is nothing as relaxing as seeing the waves rolling onto the beach and feeling the warm breeze off the water.
This vacation was well-timed. I needed a mental break. (I’ll get into why in a minute.) The number one goal of this time off was to relax, although I am someone who enjoys staying busy, so naturally I filled my schedule with activities. I did compromise and sleep in, however. I did a lot of reading, and as evidenced by this blog post, writing. I also cleaned up a lot of papers that had accumulated on my desk, including a dozen half-completed crossword puzzles. Don’t ask.
As for the book, it’s still a work in progress, but I must admit that I absolutely dread editing. It’s like pulling teeth some days. Which is to say, it’s coming along slowly. Very slowly. But it’s coming along. Any progress is still progress, even if it’s just opening and closing the word document.
I miss writing blog posts. I have connected with so many people because of this site, and miss the sense of community. I won’t make any promises about a future writing cadence, but I do aim to post a little more frequently on here. At minimum, I need to strike a better balance. Right now I will aim for once a month, and see how that goes.
(As an aside – someone mentioned recently that I should upload videos if I don’t want to write a blog post. I might give that a try sometime! If you have any topics you’d like me to talk about, let me know in the comments.)
So, what have I been up to the last four months? I actually had to take a moment and think about it. Life feels like a blur, especially since I don’t really go out much anymore and it’s hard to mark the passage of time without any external events or plans to act as guideposts. I have to remind myself sometimes that I used to live by myself, in Boston, where I left my apartment every single day to go to work or class. I used to go for walks (or towards the end, scooter rides) in my neighborhood, just to explore my surroundings. It feels like a lifetime ago.
Nostalgic longings aside, I’m happy the weather is warmer and the days are longer. Sunshine and warmth put me in a much more positive mood, and when I am positive, I am productive, and I do things like write this post you are reading. I’m currently looking out my window at the woods behind our house. The trees are swaying gently in the breeze and casting lengthy shadows on the sunlit back lawn, making for a beautiful scene. (My phone is on the other side of the room and I am too lazy to go over and get it, otherwise I’d take a picture.)
But life, unfortunately, hasn’t been all sunshine these last few months. As I alluded to before, the grind of life has necessitated a break. The grind is a grind with many layers. At the foundation are existential struggles that have been with me for as long as I’ve had symptoms. As my condition has worsened, hastened by the isolation of COVID and all the attendant craziness, I find myself contemplating the weighty questions of life more and more. It’s not so much why are these things happening to me – I firmly believe they are for a reason – but more so the what and the how. What am I supposed to be doing with my life? And how am I supposed to accomplish my goals in this state of extreme weakness that continues to get worse? There is so much I want to do – write, speak, make a difference in the world. But the logistics of my everyday existence is tiring. It is tiring for me. It is tiring for my parents. Neuromuscular disease provides no days off. It is the program always running in the background, draining my mental battery. Hence the need for a break.
But there’s more.
Every time I feel like I finally have a routine down, and have accepted my current circumstances, something always seems to happen that upends my sense of peace. Last month, I had a pretty nasty fall while taking baby steps during a transfer from one chair to another. My left leg, without warning, gave out, and down I went. The room it happened in was too small for a Hoyer Lift, so all transfers had to be manual.
Dad broke my fall but I still went down into a crumpled, contorted heap on my knees. My body then immediately bent back like a rocker banging out a guitar solo. I bent until my back was parallel to the ground, with my legs stuck underneath me. I felt sharp pains behind both my kneecaps and in other leg muscles I didn’t even know I had. I was convinced I had broken something or had torn a ligament. In that moment, all I could think of was the future, how I would need to be hospitalized, and after that, put in a rehab facility indefinitely. When would I be home again?
The pain jolted me back into the moment. Because I was in the middle of the floor without much room to maneuver to pick me up, we called an ambulance. A few minutes later two EMTs arrived who, along with my dad, were able to lift me and place me back into the wheelchair. Once I was in the chair, I was able to determine that I didn’t break or tear anything, but had pulled the muscles behind my kneecaps. My right ankle was also very sore. I wouldn’t be able to bear weight on my legs until I had recovered.
Well, a month has passed and I haven’t been able to take any steps since. My legs have more or less healed but are still stiff and sore on some days. I can get into a standing position but sit back down after a few seconds. The time off my feet weakened me further, and at this point there is no point trying to take any more steps. I no longer go in that cramped room.
From first symptom onset in 2008 to today, it took fourteen years to fully lose the ability to walk. Early on, I obsessed over when it would happen. How it would happen. I couldn’t picture myself reliant on a wheelchair to get around 100% of the time. Now, I don’t have to picture it anymore. The day has come.
Even though the fall didn’t really have a material impact on my day-to-day life – I was barely taking any steps by the end – it made me realize that I needed to take time off and regroup. This vacation was the outgrowth of that fall. In addition to thinking about logistics, I really needed some time to evaluate what is happening in my life, what is working and not working. I needed to take stock of my goals and see if I was achieving them, and whether or not they were still the goals I wanted to achieve. I also needed to catch up on sleep.
Life is a grind, but none of this is new. I’ve had no choice but to get used to the notion that my life is constantly changing. This ordeal of the last fourteen years has forced me to acquire mental tips and tricks to deal with the change. If I am going to become weaker physically, I realized, I must become stronger mentally. I must trust God that there is a reason this is happening. And I must live in the moment, focusing on the circumstances right before me. I don’t know if you are this way, but I worry about so many things sometimes that I often forget what is real and what is a figment of my imagination.
There is a saying – you may have seen some version of it on social media: “Fate whispers to the warrior: you cannot withstand the storm. The warrior whispers back, ‘I am the storm.‘”
Yeah, ok, it’s a little corny, but the broader message resonates with me. The storms of life will come, whether or not we are ready. Just look around us. The world is a chaotic, sad, infuriating place. But rather than try to deny the storm exists, or let it consume us entirely, which is a recipe for further destruction and misery, we must face the storm head on. We must name our fears and confront what keeps us up at night. Even if circumstances are beyond our control, just knowing what we can and cannot control is an important start. There is still much we can do to better our lives and the lives of others. We can fight against the storm winds and survive. The more we see that we can handle the storm, the more we become the storm.
If you become the storm, you know the challenges ahead. You are clear-eyed. You are not defeated, you are undeterred. It is not being a Pollyanna and putting a positive spin on things (although positivity doesn’t hurt), but it also isn’t thinking the sky is falling after every setback. At least that’s how I interpret the saying.
To belabor the point even further with another metaphor, as the great philosopher Rocky Balboa once said, “It isn’t how hard you hit, but how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward.”
Every time I think I can’t take any more, something more always happens. In it’s own weird way, that is a comfort.
14 thoughts on “The Storm”
You are in so many prayers. You are a gift of hope to so many especially during this time of hopelessness. Thank you for your continued writing and helping.
Thank you for sharing your heart out. Hold on to hope really tight even if it’s just one thing you can hold.
Describing neuromuscular disease as the program always running in the background provides the perfect metaphor—it’s always on, always using energy, and even if it isn’t the primary focus of the moment, it still makes demands on one’s ability to focus elsewhere completely. That will stick with me. Your optimism is one reason I’m happy to hear that you’ve set a blogging goal. You write with purpose and with at least one eye (though almost always both eyes) toward the sunny side of street. I’m happy your vacay came at a time contemplation and rest were needed.
Chris – I had no idea you had fallen!! Sending lots of prayers as you continue to persevere!! You are an inspiration daily!!
My uncle David had MD. He was first diagnosed in the early 1940s when he was only 8. The doctors told my grandparents he wouldn’t live to be 20. Well, not only did he live, but he also became the person to write the very first computer reservation program for Hilton Hotels, then he went on to American Airlines and did the same thing for them. He married, adopted 2 children and raised them to adults. He lost the ability to walk altogether when he was about 50 and just recently passed away at the age of 75. He told me he was excited about stem cell therapy and hoped that one day it would be the cure to MD.
Thank you for your comment Helen. Really appreciate it. Your uncle sounded like a wonderful guy.
Hi Chris! What a wonderful piece……lots to think about….beautifully voiced. As you said, things happen that you were not expecting…It’s how you handle them and what you do with them that count. So far you excel!
Thanks Marianne! Been thinking about you recently. Wishing you the best!
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A friend I met through blogging, Rose Wolfe taught me that our disability should be thought of as living a repurposed life. We make plans but sometimes God interject in a dramatic way and repurposes us.