‘I woke up with a tube down my throat. I couldn’t talk. On a piece of paper, I wrote, ‘I want my mom.’: Chronic illness warrior says ‘faith can do wonders’

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“My story begins at birth. I was born on July 24th, 1995, 11 weeks premature and weighing 2 pounds, 14 ounces. My mom tells me my head was the size of her palm and I could basically fit into barbie doll clothes. To this day, I have family members who still say I was the tiniest baby they had ever seen. During my childhood, I was constantly taken out of school to go to different doctor appointments. There was this one time my mom remembers a doctor saying to her, ‘She’s just a runny nose kid.’

When I was 5 years old, an allergist diagnosed me with chronic sinusitis and an allergy to milk products and bananas. So basically, what this meant to me as a child was at all the birthday parties where they had pizza and ice cream cake… Yeah, I couldn’t have any. I eventually grew out of this allergy in my teenage years.

New mom holding up newborn, premature baby daughter
Courtesy of Justine DiPasquale

In my teenage years, we were just continuing to manage my chronic sinusitis, which would require me to go on antibiotics whenever I had a sinus infection, which was a few times a year. I then developed asthma and would get pneumonia once a year. I remember one time, I must have been about 8 years old, and I was in competitive gymnastics. I was performing my floor routine and at the end of my routine I ran off the floor and threw up, to then later go to the doctor and find out I had pneumonia. From my experiences and growing up this way, I have developed a high tolerance for pain or just even sickness in general. If I wasn’t feeling great, I would just keep pushing myself, which in hindsight wasn’t the smartest decision.

Newborn premature baby girl lying in incubator hooked up to machines
Courtesy of Justine DiPasquale

Before I went off to college, my mom and I wanted to make sure we did all we could to get to some kind of answer and see what we could do to give me the best quality of life. I repeated an allergy test and did immunology and genetic testing as well. They came to the conclusion I have a genetic mutation, which then puts me at higher risk for infection. You would think I would be satisfied now because we had some answers, but it didn’t answer anything. I still had to continue living and managing my symptoms. My beginning college years were great health-wise, besides having ankle reconstruction surgery because I destroyed my ankle while tumbling during nationals for cheerleading. It wasn’t until my senior year of college I really went through a major life-changing event.

Mom riding amusement park ride with baby daughter
Courtesy of Justine DiPasquale

On May 26, 2017, my life took a turn. I went from finishing up my last semester of college, being involved in extracurricular activities, training and planning to compete in my second bodybuilding competition, working full time as a patient care tech in a hospital, to then being on the other side—lying in a hospital bed, hopeless and fearing the unknown.

On that day, about halfway through my 12-hour shift at the hospital, I began to feel very sick. The nurse I had been working alongside told me to sit down. My vital signs showed I had a fever and my oxygen level was low. I was brought right down to the emergency room and from that point, much of the next few weeks were a blur. I am beyond grateful for my family, friends, and coworkers during this time. They sent countless prayers and many visited me in the hospital and supported me through this very scary time.

Mom with arms around two daughters standing outside and smiling
Courtesy of Justine DiPasquale

My mom relocated from Long Island to Albany to be with me for the weeks to come. I really don’t think I could have made it through all of this without her. She birthed me into this world where I was then in a fragile state on a ventilator fighting for my life. Now here I was, going into surgery where I knew I would be in an induced coma for 4 days after. Also, I did not know if they would cut directly down my chest or if they would make smaller cuts on my side and back. I remember feeling fear right before going into the operating room. My mom was next to me and they said they would have to put a central IV line in my neck, I started panicking. This is the last thing I remember before waking up with a tube down my nose and throat. I couldn’t talk. It was terrifying. Here I was, in my most vulnerable state, and I felt so helpless. The nurses and aides, who did not expect me to wake up yet, had me write on paper. The first thing I wrote was, ‘I want my mom.’

Woman on ventilator taking selfie after lung surgery
Courtesy of Justine DiPasquale

Then I asked a bunch of questions: ‘Where did they cut me? When can I get this tube out? My throat hurts.’ The nurse called my mom and told her I was awake and asking for her, this was not even 24 hours since surgery. My mom and sister went up to the hospital, I opened my eyes, smiled, and then went back to sleep, the nurse had given me something to relax. I did not end up on the ventilator for the full 4 days. I was off of it after about 2 and a half days. This was just the start of my recovery process in the hospital. I had fewer tubes, which made things easier. I then learned to walk again, of course with assistance, because I had oxygen, chest tubes, and was very weak. Things started to progress over the weeks to follow.

Woman posing with flowers and arms over chest to show off lung surgery scars
Courtesy of Justine DiPasquale

I was able to get out of the hospital in time to make up my final exams and be able to graduate with my class. I received my Bachelor’s of Science in Human Biology with minors in Education and Neuroscience. I remember how nervous I was I wouldn’t be able to make the walk across the stage. Everything in my senior year of college happened so fast I don’t think I got a chance to really process it all. Once I was released from the hospital, my next goal was graduating, then moving into a house upstate, returning back to work, all while recovering, then competing in a bodybuilding competition. A month after my surgery I was cleared to work out again, and I started off slowly with the help of my online coach. 4 months after my lung surgery, I stepped on stage to compete in a bikini bodybuilding competition. This was an incredible accomplishment and experience overall. I was surrounded by my family and friends who supported me in my lowest of times and then now.

Woman standing on rocks by the water with hand on head
Courtesy of Justine DiPasquale

As for my health, I followed up with my lung surgeon during those 4 months and he told me he was surprised with how well I recovered and part of that could be due to working out and pushing myself because my lungs needed to relearn how to breathe.

Following my competition was a rocky road. Mentally I was not in the best place. Everything I had gone through in the past 6 months sunk in. I was very good at hiding I was struggling. I was so meticulous about what I was consuming food-wise and working out, I had developed an obsession in an unhealthy way. My relationship with my body and food was distorted. I put my identity in working out and looking a certain way. Then I was robbed of doing this again as I got pneumonia a few times that year. I fell into a very deep depression. I remember the day I called my mom, I was sitting on the couch alone hysterically crying, she said, ‘Come home, whether you are feeling sick physically or mentally, you don’t feel good.’

Photoset of woman in bikini bodybuilding competition
Courtesy of Justine DiPasquale

Over the next few weeks, my dad and I commuted to upstate twice a week so I could finish a class I was taking and we moved my stuff home. A few weeks later I got my wisdom teeth out, and then a week after I got pneumonia and ended up in the hospital. I learned I have bronchiectasis, which is damage to my lungs. When I got discharged from the hospital was when I hit my lowest of lows. I refused to take my antibiotics when I got home and had my parents trying to help me. I was not responding to them, there was a point where they really thought they had to call an ambulance because I was not myself. I ended up leaving my parents’ house and disconnecting from the world. Then the next morning, my friend who was helping my mom look for me found me at the beach. After this incident, I sought out help from a therapist and then a psychiatrist, which was far from easy.

Woman flexing standing on a rock with back to camera in front of pine tree forest
Courtesy of Justine DiPasquale

I remember in the weeks to come I felt just so disconnected from myself. There was a point where I looked in the mirror and did not recognize myself. This was really when I took my mental health journey seriously. I know a lot is rooted in when I was younger, having a chronic illness, and going through a traumatizing life event. Anyone who looks at me wouldn’t really have a clue of what I have been through.

I live with anxiety.

I live with depression.

I live with an eating disorder.

I live with a chronic lung condition.

I live with a chronic sinus condition.

I live with a gene mutation that makes me more susceptible to infection.

None of these define me. They just add to me being more resilient and having vulnerabilities to share with others. Something that has gotten me through many trying times is telling myself God does not give me anything I can’t handle. Faith and a positive mindset can do wonders.”

Woman sitting in basket chair with head resting on hand
Courtesy of Justine DiPasquale

This story was submitted to Love What Matters by Justine DiPasquale of Long Island, New York. You can follow her journey on Instagram, here and here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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