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

October 11, 2016

Marisa Zeppieri

Image of Mickey and Marisa Chicago
Image of Mickey and Marisa Chicago

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.

Image of Lupus Flare Up Marisa

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.

Image of Making Silly Faces

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.

Image of Bogey and Marisa

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…

Image of Marisa Zeppieri Signature

Here at Lupus Chick, our mission is to help you live a thriving Autoimmune Life

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  1. Trish Jankowski says:

    Your ability to illustrate your own obvious grace in the face of “crap storms” amazes me. That’s a rather zenith level compliment. Given my life and professional experiences, I am seldom amazed. You are flawless.

    • Marisa Zeppieri says:

      Thank you so much, Trish, for visiting/reading/commenting. Trust me, I am still a hot flippin mess most of the time. I do know finally however realize how much I would compare. It was almost a daily habit, and it was killing me mentally and emotionally. And most likely causing physical symptoms when I would get really upset and actually cry. Life becomes so much more enjoyable when we realize how special we are and that is okay that we aren’t on the same journey as everyone else! Hope you will come back and visit XOXO Marisa

  2. Teri Edwards says:

    I cried through most of this. I’ve been visiting “that place” way too often. I guess I’ve also been giving myself a bit of a pity party there too. I really want to break free of this mindset. I used to be so positive. Well, there you go. haha
    Thank you for sharing so much of yourself. It truly reminds me I’m not alone in this and I have someone and somewhere I can turn to for some much needed support.

    • Marisa Zeppieri says:

      Nope. You are never alone. I will always be here, that I promise you. And just know, I still have my moments where I go back “there.” I think it is normal to do on occasions, but too much prevents us from moving forward. We just get stuck. Just know there are people who understand. Hope you will come back and visit soon XOXO Marisa

  3. Pamm says:

    You are phenomenal!! More people need to hear your “story” as surviving the leave from “The Town of Us To”!

  4. […] why not check out some of our newest blog posts and recipes. Like this Berry Almond Tart or a post on comparing your new life to your old life before chronic illness. You are bound to find something […]

  5. Heidi Geyer says:

    As I read the above I felt like you crawled into my head and my soul, I was diagnosed with SLE and Discoid Lupus in 2010 and still feel the anger and the discontent and the Town of “When I used to”, over the last yearI think It has gotten worse because I Discoid Lupus has effected my face to the point that I don’t even want to look in the mirror anymore because all I see is an ugly person, nothing that the dermatologist and RA doctors have given me seem to help so I just start feeling lost and lonely however, after reading this I do have to say thank you because I don’t feel as alone as I was and feel like there actually may be someone out there that knows how I feel

    • Marisa Zeppieri says:

      Hello Heidi! I am so sorry to hear that you are feeling like this. I know how awful it is. And you have been hit with a double whammy with Lupus, which would be tough for anyone. Please know you are never alone. Thank you for reading the post – I wrote it so other LupusChick’s would know there are people going through the exact same thing, sometimes we just dont all publicly discuss it. This disease is hard on so many levels. And I know how it can test our spirit especially when it is attacking not just the inside of our body, but also the outside which the whole world can see. I’m always here if you need to talk! XOXO Marisa

  6. Christine M Sanders says:

    I find your love and reflection empowering. I did not know I had Lupus in my twenties. I was 49 when i was diagnosed. THEN my whole life made more sense. I wasn’t weird, a freak, lazy or strange; I WAS LUPUS.
    I had no serious organ failure, so my various ailments were viewed as that: various ailments.
    So, I don’t know if being diagnosed would have been better or would I have lamented over what could have been….
    I know there are days now when the Lupus (brain fog, fatigue and all the other flares and symptoms) gets “old”. It is a bus I’d like to get off.
    Thanks for being such strong people…all of you.
    hugs, CMS

    • Marisa Zeppieri says:

      Thank you for reading, Christine! I totally agree with you how finally being diagnosed makes everything actually make sense…finally! I get brain fog as well and sometimes get so distracted. It is awful! But I love to write and hopefully inspire someone. And, I get inspired anytime someone leaves a comment. So, thank you so much! So glad you visited the site <3 Marisa

  7. Refugio says:

    Thank you, nice read.

  8. Laura says:

    Thank you!

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