When I first became disabled, I was often caught in a state of total identity confusion. All of the sudden all of the things that I thought made me me were changing. “Remember who you are,” people always told me. They meant that even though I had been diagnosed with a chronic progressive illness and was getting sicker and sicker at an alarming rate, I was still the same person I’d always been.

The dynamic of becoming disabled later in life, being diagnosed when I was 45 for example, meant that I was changing for other reasons as well. What used to be critically important to me in my younger days just wasn’t that important anymore.

For example, being out and about socializing, seeing and being seen, no longer appealed to me. I was happy with my weekly happy hour with my best friend Sandy. We’d arrive at the bar around 4:30PM – a bar I used to refer to as the old people bar because Sandy and I were likely two of the younger people at the bar and we were both in our fifties or late forties. We’d grab our favorite barstools in front of the trivia video game and order up while we played one of our favorite games while rehashing the week’s shenanigans in the office, shared stories about our various kitties, talked about everything and nothing. It was my favorite day of the week. Top it off by being home by 7:30PM and it was near perfection.

Even after I got sick, we still did Happy Time. Until I could no longer walk well enough to drive. That’s when things really started to change.

But “remember who you are, Bethy.”

Staying in my cozy house with my giant TV and my kitties had me feeling pretty content, sure, but my home was full of steps and hazards for an increasingly disabled woman that made home suddenly dangerous and often stressful. Would I make it to the bathroom in time when I had an urgent need? Would I be able to stand up from my very low sitting Joybird chair-and-a-half or my beloved leopard print sofa? Would I make it out of bed when my legs just refused to operate as legs should? Living alone in my 150-year-old home was suddenly fraught with issues. My car, my precious convertible, sat in my driveway like a beautiful sleek ornament and not my magical freedom machine where I could fly through the roads wind in my hair, radio at high volume leaving my troubles behind.

But “remember who you are, Bethy.”

Even my cats had become a source of stress. They were getting older and having more health issues. Carrying large boxes of kitty litter and cat food in and out of the house became something that required a phone call for help. The maintenance of water fountains and litter boxes became an enormous source of stress. Yes. I was that extra when it came to my cats and I’d have it no other way but all of that extra cat mom business came with a price. When my last cat died at the age of 18, I decided no more cats.

But “remember who you are, Bethy.”

I had an entire room full of clothes and shoes that were my obsession. I never left the house without just the right combination of clothing and accessories. I changed my handbag daily to match my ensemble for that day. Even when MS legs meant I could no longer wear my beloved 4” wedge shoes I became a sneakerhead with a collection of sneakers that would make any 14-year-old boy jealous. Then bigger problems reared their ugly heads. I could no longer feel my feet when in shoes so I gave up on shoes all together. This meant I rarely left the house.

But “remember who you are, Bethy.”

Then I lost the ability to stand up on my own. For a woman who lived happily alone for more than twenty years I was forced to accept that living alone would no longer be possible. People called “caregivers” became a part of my life. They did everything for me from helping me dress myself each day to helping me on and off of the toilet to doing my laundry and making me food. This didn’t sit well with me, as you can imagine and yet I had to be grateful that such people existed in the world. The helpers. The fixers. The humans who dedicated their lives to helping people who were no longer able to help themselves. Imagine that for a moment. Imagine going from being the helper, the fixer, the leader of teams of people in the corporate world to needing help wiping my own ass.

But “remember who you are, Bethy.”

The flat-out truth of my situation meant becoming someone entirely new. Evolving. Changing. Turning into someone I barely recognized. This new person was similar to “old Bethy” for sure just enough that her limitations were a constant source of frustration. I remember the things I used to love. The trappings of fashion. The trappings of being a high-level executive in a global advertising enterprise. The trappings of relative wealth. The trappings of being the It Girl who had it all together. This new me is afraid much of the time. Pain is my new companion. A new home with accommodations that allow me to exist in my new form – a full-time power wheelchair user who requires a device called a sit-to-stand lift to transfer from chair to chair. A roommate who is also my primary caregiver and closest friend.

But “remember who you are, Bethy.”

I don’t sleep in a glorious fluffy bed anymore. My new body is more comfy sleeping in a sleeping recliner chair. I don’t really wear real clothes anymore mainly for reasons of convenience and comfort. I wear a rotating array of soft cotton shorts that I buy on Amazon of all things. The oversized t-shirts that coordinate are mostly a slub cotton style, Kirkland Signature brand to be specific. The shirts are color-coded – all black outfits for the daytime and soft pastels for the nights. This makes perfect sense to me even though even I realize the only difference between my daytime clothes and my nighttime clothes is their color. Old me shudders at the very thought of wearing brands of clothing that are made and sold by Costco and Amazon.  I mean, imagine! From designer labels to Amazon Basics and Kirkland Signature.

But “remember who you are, Bethy.”

I still have a multi-step skincare routine but I’ve simplified that a ton, too, mainly because I need to be a bit more careful with my money now that I no longer have the big important job that came with a big extravagant paycheck. I make do with some reliable basics. Make up is not part of my new life – words I never thought I’d type. Me! The Instagram posts of the #makeupoftheday looks taken in just the right lighting. These days I get by with some moisture on my lips, an eyelash curler (one tool I can’t live without) and the the occasional self-performed eyebrow wax and tint. The sky-high hair is still my trademark, sure, but it gets cut at home now often by my roommate who is also my primary caregiver. Daily selfies are most definitely a thing of the past. The selfie I posted above is my first in over a year. It took everything I had in me not to try taking 20 more to try getting a good shot but that takes energy I no longer have.

But “remember who you are, Bethy.”

I’ve decided that remembering who I am is no longer a productive or positive effort for my sick body and mind to relinquish precious energy toward. My new focus is on becoming. What will I become? I thought I’d become a frequent full-time writer but it turns out that even writing is hard now. I used to be able to pound out a post for this blog in a few hours. This post? This post has been weeks in the making. You see, for me writing comes from my brain through my hands and fingers – not from my mouth even though I know full well that dictation would hurt a whole lot less. Maybe someday during this becoming phase I will master dictation. I’m not ruling anything out.

I’m trying to let new me emerge instead of forcing her to be born before she’s ready. This might be the hardest thing I’ve ever had to do.