I cannot say whether things will get better if we change; what I can say is they must change if they are to get better.

George C. Lichtenberg

“Wouldn’t you like to get away?
Sometimes you want to go
Where everybody knows your name,
And they’re always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name…”


I recently took a brief trip back to my hometown in the Black Hills of South Dakota. The visit was a welcome respite from my current life and, if only for that short time, allowed me to escape back to a time and place that I’ve always considered the “good ol’ days.” In those days, in my early twenties, I was finishing up college and still unconcerned about what I would do with my life. I had an internship with a large international beer company, served cocktails at the local comedy club on the weekends, and waited tables in the adjoining restaurant when I had the time. So, I guess that’s one reason I love the Cheers theme song (aside from my love of nearly ALL things 80’s). The local bars and pubs where I worked and hung out with friends most days of the week, were the places I felt the most comfortable – surrounded by people and activity and music. Whether I needed to dance away my frustrations, engage in thoughtful conversations or merely blend in and people-watch, I loved being a part of it.

During my recent visit, I caught up with long-time friends at one of my old favorite hangouts. Simply spending time around people and places that feature so prominently in my cherished memories of the time BEFORE any hints of illness existed was good for my soul.

And, it also served as a stark reminder of how very much my life has changed in the 11 years since I lived there.Sometimes it feels as if I’ve lived two very separate lives. The differences between the life before any illness, and the one after, are remarkable – if only for their complete contradictory nature.

For example, there was a time when I knew every road, side street and shortcut in town like the back of my own hand. On this trip, I needed my GPS every time I got in the car. Sure, the buildings and landscape had changed somewhat, but even more than that was the issue of my unreliable memory, coupled with the type of brain fog that now plagues me when I’m out of my normal, familiar element, courtesy of my old friend, autoimmune encephalitis.

mirror-1548409There were other changes too. Back then a headache or bout of dizziness meant I’d had a little too much fun the night prior. These days, headaches are the norm and dizziness is usually just another “fun” side effect of one of my many medications.

Previously, I stayed up until all hours of the night because…well, why not? I couldn’t stand the thought of missing out. In my present state, I also stay up all hours of the night – fighting medication or brain injury-induced insomnia. And, for the record, it’s only fun to stay up late when you WANT to do so.

In my young and agile twenties, it was easy to kick the extra 5 or 10 pounds that appeared occasionally with only a few minor adjustments to diet or exercise. And now, thanks to prednisone sugar cravings, constant fatigue and sustenance needed to balance out the litany of drugs in my system, my body is no longer recognizable to me.

If I think about it too much for too long, it just doesn’t seem fair, so I try not to dwell on the “should – could – or would-haves” of my life. Still, I miss the days when my local stomping ground was a nearby bar where “everybody knew my name.” These days, my frequent haunt is the local Walgreens – where everybody ALSO knows my name… and my date of birth, medical history and allergies. So, you know… NOT the same. At all.

Just to clarify, I’m well aware that no one’s life stays the same. Change is inevitable. But I never thought I’d have so little in common with the self I thought I was all those years.

So, when well-meaning friends and strangers, alike, hear my story and inevitably say, “Wow…but, you’re better now…right?” I spare them the behind-the-scenes view of multitudes of medications, side effects, flare-ups, constant fatigue, and a life of constant health-related paranoia. I hesitate only for a moment before I give them the answer they are looking for – because in their world, stories still nearly always have a happy ending – (sigh) ”…yeah…I’m better.” Because “better” is another relative term in the medical realm. Am I ALL better? No, and I never will be, but I have accepted that. Am I better than I WAS? Absolutely. Besides, it seems unnecessarily cruel to explicitly detail what it feels like to grow old as a young adult to those who have the freedom of taking their time.

It would be a lie for me to say I don’t sometimes struggle with the heaviness of my “new” reality (I say “new” because no matter how long it’s been, I don’t feel as if I’ll ever get completely used to Erica 2.0). But, I am ever so thankful for the memories and experiences of the “good ol days” that played an integral part in giving me a reason to fight…and for the shenanigans of my younger years that made me feisty, the awkward situations that gave me a sense of humor and, most especially, for good friends that remind me that who I am is a reflection of who I used to be. I am a woman who is more than her afflictions, who has chosen to accept all versions of herself with grace, while looking to the future with optimism. A woman who is changed, but not defined by life’s adversity.

A woman who, despite the things she’s lost, has HOPE.


1 Comment

  1. Nesrin Shaheen

    Love, love, love !!! <3


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