“我醒来管了我的喉咙。我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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“我的故事始于出生。我出生于1995年7月24日,11周早产和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肺炎。从我的经验和以这种方式成长的情况下,我对疼痛甚至一般的疾病产生了很高的宽容。如果我感觉不好,我会继续推动自己,事后看来,这并不是最明智的决定。

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 agenetic mutation,这使我面临着更高的感染风险。您会认为我现在会感到满意,因为我们有一些答案,但没有回答任何答案。我仍然必须继续生活和管理症状。我开始大学的年龄在健康状态下,除了进行脚踝重建手术外,因为我在国民啦啦队演奏期间摔倒时摧毁了脚踝。直到我大学一年级,我才真正参加了一次重大的改变生活的活动。

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

2017年5月26日,我的生活转弯了。我从完成大学的最后一个学期,参与课外活动,培训和计划参加我的第二次健美比赛,在医院全职担任患者护理技术,然后在另一端工作 -医院的病床,绝望,担心未知。


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.

Courtesy of Justine DiPasquale


Woman standing on rocks by the water with hand on head
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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.

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久病,经历一场创伤的生活事件。任何看着我的人都不会真正了解我经历的事情。

I live with anxiety.

I live with depression.

I live with an eating disorder.


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

这个故事提交给 beplay网络一直不畅 by Justine DiPasquale of Long Island, New York. You can follow her journey on Instagram,herehere。Submit your own story here,和be sure to 订阅to our free email newsletter for our best stories, and YouTube为了我们最好的视频。

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