The Town of Used To: Chronic Illness & What “I Used to Be Able to…’

A rare day filled with energy, touring Chicago with my love. Photo by Tom Buttaccio, XO Films

Portions of this article were originally published on TheMighty.com

A friend recently asked me what my “spirit animal” would be. When I raised my Bert-like eyebrow, she added, “I’m serious, everyone has one!” I laughed, as a sloth immediately came to mind; like these creatures, I love to sleep, swimming is my favorite pastime and for the most part, I am a loner. But even with all of these similarities, I quickly answered, “Most likely a cat; it seems I have nine lives. “

It’s a fact — I am a death cheater. There was the time in my 20s when I almost died after being run over by a pickup truck traveling 50 mph as I walked to my car. And then there was the lupus diagnosis and subsequent blood clots, mini-strokes, brain aneurysm and other medical absurdities that seem to come along with this chronic illness. Through the grace of God, an incredible support system and a feisty personality (what can I say, I’m Italian), it seems I’ve been able to make a comeback again and again and again. If you have a chronic illness, have you ever noticed you are also able to make it through challenges others may see as impossible?

Tenacity is a trait I have noticed in many people who are dealing with a chronic illness. As I get older and meet more people, I am always intrigued by the situations and traumatic experiences people can overcome, standing stronger once the storm has passed. I’ve also noticed that for many of us who have encountered these earth-shattering events, life seems to separate into the time “before” the incident and life “after” the incident.

85 pounds and near death because of a horrific Lupus flare. It took time, but I kicked that flare’s ass!

In 2007, several years after my diagnosis and tango with the bumper of a Ford Ranger, I married an incredible man. For the first few years after our wedding, I experienced lupus flares that can only be described as a crap-storm of ridiculous incidences. It was so bad at one point the hospital literally sent me home because nothing else could be done. My life involved mostly sleeping and having a nurse come to our home to help me eat and bathe.

I was frustrated and angry, but when you are ill you do not have a lot of extra energy and resources to handle much. I wanted to enjoy life with my husband. And so began a season where much of my spoken word involved the following phrase: “But I used to be able to (insert activity, lifestyle, passion, etc.).” And with this, the mental damage began. Through the help of my super smart (and quite handsome husband), I came to the realization that I had never fully grieved and mourned the loss of my old life.

Have you ever felt like you were in a hopeless situation because of a chronic illness? Were you angry and maybe resentful of the loss of your health, the ability to be independent? Have you ever felt angry at your own body because you feel like it turned on you for no apparent reason? I felt all of this and I knew not confronting it and dealing with it was going to ruin me. 

The loss of health can interrupt so many parts of life — career, finances, intimacy, hopes, and self-esteem. We can feel frustration, guilt (because we have to rely on others) and depression. Add a little pride to the mix, and refusal to reach out for any help, and you have a disaster slowly unfolding.

My lovebug, and creator of The Town of Used To

Eventually, my husband coined a term in our house, “The Town of Used To.” Anytime I would compare my present day with old life, he would roll his eyes and say with a laugh) “Oh crap, we are going back there again?” We can actually joke about it now. I couldn’t see it then, but visiting this “town” was anything but a vacation. 

Have you ever traveled to “The Town of Used To?” I noticed the more time I spent in this hellhole, the more discontentment and pain I felt for the things that were involuntarily taken away from me. One dictionary I researched describes discontentment as a “restless desire or craving for something one does not have.” My craving for my old health and freedom was leaving me feeling bitter and discouraged.

Living with a chronic illness is hard enough. Eventually, I made a commitment to myself to not bring in any additional despair and dismay into the mix. For lack of a better phrase, I had to give myself a swift kick in the ass and made a calculated and intentional effort to be grateful and cognizant of the positive things that were happening. It wasn’t easy. I failed a million times, but I felt if I didn’t make this change, I’d end up living in a state of constant dissatisfaction, one foot in my present world and the other in a time that will never be again.

Chauffeuring hot tuna breath to the vet – this one is a real princess!

It has taken me years, but I can see the fruits of my intentional efforts and a shift in my way of thinking. Today I am so grateful to be alive, to have an incredible career, and to be surrounded by a great support system. I’m lucky to have an adoring mom, a patient husband and a rescue dog, who for some reason thinks I am the next best thing to Snausages.

Starting a gratitude journal was a life-changer for me. Yours doesn’t have to be fancy, just a notepad will do. You can even download an app for your phone. Jot down at least two things you are grateful for each day. It could be something as simple as “I had a little extra time today and took a 20-minute nap,” or something more profound such as, “I woke up today — I was given another chance to change the world!”

My journal, prayer and support helped me retrain my brain and put a permanent restriction on visits to The Town of Used To. If your mental passport is almost maxed out with visits to this dump, I’d love for us to both commit to each other to not travel there anymore. There is a great big world out there with much better destinations to explore!

As for the spirit animal shenanigans, I eventually had to research the concept — which seemed completely absurd to me at the time. Turns out, the cat is believed to represent patience, a spirit of courage, a desire for adventure and healing oneself from the inside out. Sounds like the majority of chronic illness warriors I meet on a regular basis! They are some of most courageous people I’ve ever seen.

And so, here’s to my next adventure, one far away from the hospital and most definitely not in The Town of Used To.

I hope I will see you there…