un/becoming

It has been quite some time since I wrote. A lot has happened and it’s time to catch you up to speed. As a reminder, I took time off to heal my body and mind, reinvigorate my spirit, and figure out a new path.

At the beginning of the year, I was diagnosed with systemic and cutaneous lupus, dystonia, and dysautonomia. I won’t go into what those are since you can Google them, but each diagnosis came just a few weeks apart in the months leading up to my 50th birthday. As you can imagine, it was a lot to take in, hence my brief departure.

Medical opinion is that I had a predisposition to those illnesses and that they were triggered by a 2020 COVID-19 infection that turned into long-COVID. Post-viral illness is not new, nor is the a chance that it might trigger an underlying disease.

During my recent downtime, I forced myself not to do work, listened to my body, and quieted the voices in my head. I leaned heavily on my mindfulness and breath work training, and my mantra became, “BE HERE NOW.”

From my little corner of the world, I listened to crickets chirp at odd hours, the breeze through trees at night, and birds greeting each other every morning. I endlessly played with our dog. I went for short walks. I annoyed my adult children more than necessary. I went out more with my honey. I took time to rest when the old me would have pushed through.

I opened my heart and allowed it to guide me as I relearned to use a body that has developed a mind of its own. While I’m not as bad as I was two years ago, I now experience debilitating pain exacerbated by the use of my arms or neck. I’ve developed a tremor. My legs get weak. I can’t walk more than a block without falling or needing to stop for a breather. I use a cane sometimes.

Migraines and nerve pain tend to knock me down 10-15 times a month. I get nauseated from light; sometimes it’s daylight, sometimes streetlights, sometimes computer screens. I walk around with a throw-up bag in my purse just in case.

These things make it challenging to push through like I used to.

In my last newsletter, I mentioned feeling like the old mold no longer fits. It's not just physically, my old hobbies and pastimes don’t hold much interest for me now either. Some of that is just me getting older, and some of it is a direct result of my life over the last few years. I have PTSD and increased anxiety from my COVID experience. That makes social situations tough.

The greatest shift has been with my career goals, some by desire, some by sheer necessity. For example, the tremor and joint pain affect my ability to perform reliably. I have spent the majority of my life performing on stages and screens. Now, I must find a new role in them, or at least an altered one.

As an online marketer, I willingly worked odd hours and burnt the candle at both ends. Now, the idea of a product launch sends me into cold sweats and sheer panic. My physical limitations notwithstanding, I just don’t want to do it anymore.

The biggest disappointment is my inability to cook and bake like I once did. You may have noticed a lack of recipes in your inbox lately. Sadly, that’s not by choice. The nerve damage in my hand makes it hard for me to hold pots and pans, and to feel pain. Misjudging my proximity to heat has given me more 3rd degree burns in the last year than in my entire life, and I’ve worked in several restaurant kitchens.

While washing wine glasses after Thanksgiving last year, I sliced my pinky open with a shard of broken glass and didn’t feel a thing. The spurting blood gave it away, eventually. I probably needed stitches but was too paranoid about getting COVID-19 to go sit in an ED waiting room for hours.

Luckily, my care team at Northwestern Medicine is experienced in all of this, and has been vigilant in their care. They aren't giving up on my recovery and neither am I.

On top of my illnesses, I feel the massive shift in the world and the need to respond. I am, much like many of you, tired and struggling to make sense of current events. I am unsure of what to do. I want to make a difference but there are so many holes in the dam that I don’t know which one to plug first.

I don’t normally shy away from conflict. I have always been an activist. For example, while on a Catholic high school trip to Washington D.C. in 1989, I snuck away from the group to march on the Supreme Court steps for women’s rights. It was an easy decision. I knew exactly what I was there to do. I was angry, I had something to say, and I was going to make people listen.

(Little did I know, the Washington Post was also there, and they snapped a picture of me along with other women that ended up on the front page of the newspaper the next morning. Back home, people saw the picture long before I did. It didn’t go over well.)

Things are different now, however. It feels like a firehose of issues hitting us in the face all at once. I'm not sure where to focus. There are so many injustices and worthy causes in this world that I cannot possibly pay attention to all of them, although I know I should.

I spent some of my downtime dealing with my feelings around those so I can move past reacting, and into a place of decisive action. Ultimately, I decided to whittle the list down to one or two causes and fight tirelessly for them. I recommend you do something similar if you find yourself in a state of inaction due to overwhelm. I will share mine with you in upcoming issues.

All of this is to say that the old me can’t pick up the phone right now because she no longer exists.

The new me is still taking shape. I don’t know who I am becoming, but I know I am not alone. As I speak with many of you, I hear similar stories. I see similar scenarios play out among people I follow on social media. Many of us have experienced loss and trauma over the last few years and see things differently as a result.

I know the shift is larger than me, and the outcome is more important now than ever before. I have great hope for myself and humanity and continue to put one foot in front of the other.

What all this means for our time together, I’m not exactly sure. I’m giving myself grace to figure it out as I go along, and space to heal further. I hope you will continue to stick with me and be a part of how it unfolds.

The good news is that getting rid of some of the noise in my head allowed some exciting ideas in. Over the next few months, I will share a few of those with you. In the meantime, I invite you to leave a question or comment if you would like to take the conversation further. I’m an open book.

P. S. If you’ve read this far, you’re a ride or die and I salute you. 🫡