“Celebrating Chapter 52 the Only Way I Know How…Through Transparency.”

If you think about life’s different occasions, food is most likely at the center of each one. We use food to mark special occasions, such as birthdays, anniversaries, baby showers, graduations and weddings. Food is used to offer comfort to people who are mourning the loss of a loved one. It is prepared for the special family members and friends in our lives who need a little extra help while recovering from an illness or even after having a baby. Food also plays a significant role in our daily lives: having breakfast with the kids before school, a lunch meeting with co-workers, or dinner with our spouse.

No matter what our cultural background is, the preparation and eating of food is something we all have in common with one another. But food is much more than nourishment; it is the vehicle through which we communicate sentiments, express our creativity and create memories. At least I know this to be true in my own life. And it is in the sharing of food with others that keeps us connected.

They say that the kitchen may be known as “the heart of the home,” but I feel that the table is equally important. In our busy, plugged-in and over-scheduled lives, eating meals at the table together is often neglected for meals “on the go.” The table is where we gather, not just to eat, but to talk, share, and connect. Food gets people talking; it facilitates conversation and debates, prompts people to ask each other questions and acts as the medium by which we strengthen and nurture our relationships. Gathering around the table is also a way we can show others hospitality, teach children manners, preserve traditions, and create memories; it is one of life’s greatest joys.

Recently diagnosed with Gastroparesis and currently navigating though an onslaught of complex unsolved GI issues, I’ve been on my own emotional and confusing medical journey. It’s been a journey that has thrown the idea of comfortably “breaking bread together” out the window (at least for me.) Gastroparesis has also kept me from doing many of the things that I once loved. Nearing a year now, my GI issues have kept me laid up in bed in much discomfort and unable to reliably commit my time to others. Goodness, even my own primary doctor has labeled me as “an experiment”.  Yeah, an experiment. Sigh. Nonetheless, she’s absolutely right. I feel as though I’ve been dropped into the preverbal ocean without a life jacket. As someone who doesn’t know how to swim; it’s been scary to say the least. 

Within the past year, life has been both physically and mentally challenging; 24/7. Why? Because food IS the center of our lives. Up until my diagnosis, I had taken great pride in using the “heart of our home” to provide the space needed for our blended family to connect at the table. The dynamics have now changed. No longer do I sit at the table with others and partake. Instead, I try to focus solely on my creative culinary skills and watch from afar as the happiness it brings others makes me smile. On some level, I suppose that has been my own personal way to connect through food. Yet there’s no question that it’s become a relatively semi-distorted concept. I’m doing the best I can, given the hand I’ve been dealt. 

The reality is that oftentimes I feel sad. Oftentimes, I feel out of place. Oftentimes, I feel lost because my life post-diagnosis surrounding food has not been like most others around me. Honestly, I don’t know exactly where I fit into the food experience equation. Looking from the outside, the world sees me as a positive woman whose outer shell looks generally pleasant and whose life is a shining example of perfection. At least this is what I believe is perceived by others. Yet we all know that no one’s life is perfect. Additionally, I’ve been called the “skinny bitch” more times than I care to count. Whether it’s comments typed on my social media page(s) or face to face backhanded compliments/comments; from what I have experienced, no one really likes the “skinny bitch” … 

…regardless of how you happened to become one. But hey, I’ve been working on it.

Think about it. You’ve been invited out to dinner. It’s probably not too mentally difficult to navigate through your decision. Odds are, you excitedly accept the invitation, right? Imagine attending an event where food is a primary component in the event and affair. Perhaps it’s a business luncheon or wedding. Pretty normal occasions, yes? Of course it is! The happiness. The joy. The laughter and connection. Everyone is building connections all surrounding and revolving around “the table” and the food upon it. 

Now, imagine knowing that you cannot partake in this “joy” the same way others do because your body does not process food the way other bodies do. Yours is…well, paralyzed. Literally…paralyzed. The issue could rest in your stomach, colon or esophagus. It could be a combination of issues within one area or all three…a paralysis which prohibits food to make its way through your body. The stress on both your body and mind feels debilitating, making a simple decision to attend social events a conundrum.

Somehow though you find the courage to accept the invitation, smile and think optimistically. Yet at every one of these social affairs others begin to apologize for eating in front of you. They know that you cannot necessarily eat like them, but they don’t really understand why. They feel overwhelmingly apologetic. Immediately YOU begin to feel awkward because you’re now convinced that YOU are beginning to make others feel awkward simply by not being able to eat. You’re beginning to regret accepting the invitation. The continuously relayed verbal apologies alone are enough for you to want to casually and quietly slip out the back door and into a place all by yourself. Your mind races and you wish you could immediately run far and fast away from any and all of these uncomfortable situations. You believe that it would be easier for everyone if you had just declined the invitation. 

You sit inside your head. Amidst the awkwardness you mentally scold yourself and think, “just suck it up and deal with it already!” While internally you’re reprimanding yourself, externally you continue to smile. I mean, there’s no reason to make everyone feel more uncomfortable than they already do, right?

It’s a damn vicious cycle. It makes the decision to decline events and invitations easy, yet at the same time so very difficult. Eventually, this cycle leads to self isolation. I suppose in some way that’s exactly where I believe that I’m sitting right now. The daily mental, physical and social battle with myself is excruciating and exhausting. I can attest that my fiancé (Don) has truly earned the title of “Saint” with his patience, love and support throughout this crazy medical journey. For that alone… I’m blessed.

I’ll divulge. I have not eaten a full sit down meal in a social setting since the latter part of summer, 2021. Interestingly enough I can vividly recall the day of the week and restaurant. Don and I squeezed in a late Sunday afternoon dinner in Milwaukee with friends at a Brazilian Steakhouse. I had just finished 7 hours of coaching and still had two more hours to go after dinner. I had felt miserable all day. Oddly, stomach pain and discomfort along with continued nausea became my norm. Clearly the Gastroparesis symptoms were getting worse, yet I had not actually been diagnosed. I wouldn’t officially be diagnosed until December 2021 and it was July 26, 2021. That afternoon I tried very little of the fare. If not mistaken, I grazed the salad bar with my girlfriend, while the men were indulging in the “experience” of it all. It didn’t take long before I became increasingly more nauseous and developed abdominal pain. The two hour ride home after dinner and my last client session of the evening left me with my head resting against the passenger side window. My knees were pulled in the fetal position; stomach cramping. I recall the two hour drive home feeling like a much longer drive. I was simply counting each mile marker until I could lay down and rest in my own bed. And I did. For days.

This was the start of the change in my eating habits. I was never hungry. Literally. Yet, how could I be? Food truly made me ill. The same food and experiences that once brought me connection and joy, now brought physical pain. Now when necessary and feeling weak, I’d privately sip on broth, cranberry juice and indulged in every type of popsicle/freeze pop known to man! Actually, I still do. But every once in a while I felt brave. Maybe it was temptation more than anything. I’d gamble on a few oysters periodically. Oysters are my FAVORITE! But even I knew that the gamble NEVER paid off. The GI pain I’d ultimately experience solidly led to days resting in bed and “recovering.”

As days come and go, my journey has truly been a never ending cycle of confusion. Questions and then even more questions after that. Google searches and connections within online Gastroparesis communities have given me comfort knowing that I’m not alone. I’ve found others across the country who are much like me. Some…much worse. Some are on feeding tubes while others have made their way to specialists, opting for surgical procedures with no real guarantee of improvement. So many that are suffering with Gastroparesis, who (like me) continue to search for answers.

There has been no real reason as to what caused my Gastroparesis, so I move forward in this personal game of chess. I can only hope that in my own journey that I gain a better quality of life. Some days I feel that I’m winning, while other days I feel as though I am losing the match. On a positive note, I’m holding on to the fact that slow progress IS being made. The most difficult part of the statement above is the word “SLOW.”  Nonetheless, I try to focus on the word…“PROGRESS.” 

In order to better pinpoint exactly where and why this paralysis is happening, I’ve finally been able to connect with a knowledgeable and highly qualified motility specialist. This was an appointment that was made over 6 months ago. Yes, the wait time and approval to see these specialists has been another added stress in general. More tests, bloodwork, a SIBO test, visits to the nutritionist and even a food psychologist will stretch far into 2022. Thankfully, a skillful team is being assembled to personally assist me throughout this difficult and confusing time. 

In closing, you’ll find that my posts and blogs will always remain genuine; truthful, connective and transparent. I’ve learned that I’m not alone in this journey. By way of my own transparency, I’ve built a following and a connection with others much like me. It’s something that’s very much needed. After all, we each lead incredibly unique lives with unique personal stories and experiences. When we finally become confident in sharing our own story, we ultimately are helping others along the way.

In addition, my intent has always been to educate. Lets face it, it’s certainly not easy to share insight into our own personal lives. We fear others judgement, ridicule and we are forced to show our vulnerability. In a world where the perception of the above is typically labeled as a “negative,” I intend to build a stronger community through honest dialogue. This dialogue begins with transparency. 

Lastly, (on a personal level) I’ve found that sharing my own health and mental health experiences revolving around Gastroparesis has been cathartic and therapeutic; a necessary and positive progression in the right direction. Every single day brings its ups and downs. The reality is that today is not a great day for me. Like I said, there are ups and downs. This really is no different for anyone. In the end, honesty truly IS the best policy. I believe that honesty leads to a greater understanding and a more compassionate, inclusive and accepting world…regardless of the topic of discussion. 

My hope; someday to be a part of discussions where I too can be seated at the table, breaking bread…comfortably.