Thursday, January 19, 2017

4 Lessons I Learned from My Brush with Chronic Illness

This blog was first published on Kveller last week. I like to make sure to share here as well.

If you don’t suffer from a vast, almost never-ending list of psychological and physical ailments, then you simply don’t get it. You can’t possibly know how it feels to awaken each morning battling the same problems you fought as you struggled to go to sleep; you can’t imagine the debilitating feeling of helplessness and angst that come with such issues.

And that makes you lucky.

While I’ve considered myself part of this lucky group for my first 44 years, I have recently had an unusual glimpse into how the other group feels.

Since April, I’ve been coping with vertigo. And I don’t mean the type of vertigo where the room spins for a few minutes and then all is fine. I mean the seemingly never-ending feeling of being off-balance; the type of off-balance where you can’t drive because the road in front of you keeps moving, the type where talking to someone makes you nauseous because people move too much as they gab.

As my symptoms have ebbed and flowed, been unexplainably exacerbated and mercifully diminished, I’ve come to appreciate and recognize for the first time what it must be like to struggle with a chronic condition. What I’ve experienced doesn’t even come close to what some people endure, of course, and I couldn’t possibly understand everything they tackle.

But I have become more sensitive to certain things that I believe are worth sharing:

1. The spoon theory is alive and well, and boy is it true. I’ve heard about the Spoon Theory by Christine Miserandino for years, but I had never lived it until this year. The theory is that people dealing with chronic illness feel like they get only so many spoons each day—and they don’t know when the spoons will run out. And once they’ve run out for the day, they are finished, usually with no warning.

On days when I’m not feeling well, I wake up wondering just how much energy I will have that day and how much I will be able to accomplish. By the time I get the kids out of the house and do my job, I’m often totally spent. And that means that the grocery shopping isn’t getting done after work; the errands aren’t getting accomplished; the dinners aren’t getting made, and more.

Prior to my illness, I often thought, “Oh please. Just dig into yourself and find a bit more energy and then you’ll be able to get things done.” But when you’re grappling with illness, you hit a wall and there is literally no way to continue. Period. What I’ve learned from this is that I have to listen to my body and be gentle with it. And I have certainly learned to let go of my judgements about how others manage their days and how much they accomplish.

2. Feeling sick is incredibly isolating. It doesn’t matter if you’re sickness is a physical or psychological issue; it makes you feel very alone. While people want to be helpful and they try to be patient, they can only understand what you’re going through a little bit. And this creates a feeling of isolation. Similarly, if you look fine on the outside, people really can’t understand what you’re struggling with, and they don’t always know how to interact with you.

This reminds me that we absolutely never know what other people are going through—and that comparing ourselves to others and assuming that others have things easier is fruitless. And misguided.

3. I’ve learned to reach far and wide for the help I need and not to settle for good enough. I’ve been to just about every specialist imaginable and some of them have made me feel like my issues are all in the head and I’m crazy. But I know when I’m seeing double and when I can’t get out of bed because the room is spinning. And I know there must be a way to help me. So I’ve continued looking for answers, sometimes traditional ones and sometimes less traditional ones.

My continued pursuit sends out a message to my heart that I’m not giving up on myself. And hopefully other sufferers aren’t giving up on themselves either. There are answers to be found for many ailments; and where there aren’t answers there are coping mechanisms. We are worth it and worthy enough to pursue these.

4. The most important take away that I think I’ve learned from this challenge is to understand just how heroic so many people are. When you’re sick and you share this about yourself, people come out of the woodwork. They share their suffering, their sister’s suffering, their cousin’s vertigo, etc. I’ve come to see this past year that there are so many people who battle with physical illnesses and handicaps, emotional issues, and psychological ones. On the days when I’m feeling well, this makes me incredibly grateful to be me. It reminds me of how sacred our bodies and minds are and of how much we have to respect them. On the days when I’m not feeling well, it reminds me that I’m not alone. And that counts for a lot as well. I’ve also learned to be a better listener and I’ve gained so much respect for people and what they endure and accomplish.

Someone with a chronic illness can probably write a book listing and explaining the daily battles they experience, the lessons they’ve learned, and those they wish they didn’t have to. In comparison, this is but a small list of the things I’ve learned so far on this journey of sickness and health. Perhaps, and hopefully, this journey is making me a better person to myself and others.

Monday, January 16, 2017

The Echo After the Flash

People often say that life is in the details. They said that it’s the little things that matter. While these statements make sense, it’s not always easy to illustrate them or to understand what type of impact they could have on our lives.

Last week, while at a wedding of our friends’ son, I was privy to witness a moment in time that illustrated this point so beautifully. The wedding ceremony ended and everyone yelled “Mazal Tov!” Most people had turned to their partner to share a moment, or they had turned away to find their table, or maybe they were going to greet a friend they hadn’t seen during the cocktail hour.

But I, well I’ve learned with time, and I had my eyes glued to the chuppah and the bride and groom. As they finished embracing, and before all of their eager family and friends could get to them for hugs and congratulations, the groom’s younger brother shot up onto the podium. And without a word, he tilted his head in front of his brother. The groom, stopping everything else that he could have been doing, put his hands over his younger brother’s head, closed his eyes and offered up the most heart-felt bracha (prayer) for his brother’s well-being.

The entire room melted away and they were the only people there. Just the brothers for a moment. The scene was so endearing, so tender and glorious, that I stood there with tears streaming down my face.

My husband, witnessing the moment as well and knowing me to the core, turned to me and said, “Wow. The bracha got you, right? You’re going to need a few minutes to collect yourself, aren’t you?”

I asked many people that evening and the next day if they had seen that brief moment, and no one had. 

They all explained that they had turned away from the chuppah, or they had started walking towards it to dance the bride and groom off the podium, or that they were heading to the bathroom. Whatever it was, they had watched the big event (which was beautiful) but had missed the little one that came so quickly after and that held so much meaning, so much love.

As I have reflected on this moment over the last few days, I’ve been brought back to another moment. This one was, ironically, at the conclusion of another wedding ceremony a few years ago. Our neighbors married off the last of their three boys. The wedding ceremony ended and most of the guests were singing and clapping for the bride and groom as they walked away from the chuppah.

I remained, however, standing near the chuppah and watched one of the sweetest moments. The music was still playing, and the groom’s father took hold of the groom’s mother, under the night stars and the crisp, white canopy. They were the only people still standing on the platform, and the two of them began a dance; it was a dance of love, hope, joy, renewal and promise and they appeared to be in a universe all their own. Under the inky night sky, they danced to their accomplishment as parents, to the ending of one chapter and the starting of another, and to the mysteries that their future together would now hold. It felt like the dance of their lives, and I was honored to witness it and to watch their love.
Sometimes life is lived best in the big, flashy moments. But often, the true gems are the hidden glances; the times that shadow those dramatic, flashy circumstances and that hide just inside the echo after the flash. Those, those are the moments that we get to enjoy when we are quiet and still, and observing life unfold around us.

And those, truly, are the most special moments of our lives.