It’s a Very Beautiful Storm
Gastric Motility and My Experiences as a Medically Complex Patient
Being sick is what you make of it. And I want you to know that no matter what life throws at me, I’m still going to do something amazing. Chronic illness doesn’t define me, and it shouldn’t define you. I’m not going to live my life in survival mode. I want to take good care of myself, so that I can live with my illness and with my passions.
I first confronted my illness in 2007. I was a high achiever. I’ve always been known for my drive. I was in high school and I was captain of the soccer team. I played varsity. I was in constant motion. But all of a sudden, I stopped being able to stand up without being in constant pain. My illness was initially misdiagnosed at a hospital in Rhode Island. Misdiagnosis hurts you, the patient. It doesn’t hurt the care team. Eventually, though, I connected with my current doctor, Dr. Flores. The other doctors had initially told me that I was just stressed out, or that my condition was connected to IBS—Irritable Bowel Syndrome. They just fed me laxatives and made the problem worse.
Dr. Flores could tell that it wasn’t IBS, especially after he did a colonic motility study. That’s where they track 8 segments of your colon with sensors, and they watch your colon. I’ll never forget the day that he walked into my room holding a doll in his hand. The doll had a tube in its stomach. “We have two options,” he said. “We take out your entire colon, or we do a test trial with a cecostomy.” I opted for a button, not the tube. I remember telling him: “I’m too young to have my whole colon taken out.”
Dr. Flores worked with a smaller local hospital at the time. This was before he had begun working at Boston Children’s and I transferred my care. At that hospital, there were so many complications that arose even before I received the button, like when I contracted MRSA from one of my sutures. I remember the day that I initially went into surgery, and feeling that God was with me. I remember praying and praying to just wake up alive.
Dr. Flores has always listened to me, but I’ve been in medical situations where I felt like my voice as a patient just didn’t matter at all—like no one listened. My voice only mattered to my mom. Since I’ve been here, at Boston Children’s, my voice matters. And now that I finally have the test results and the data to back up my voice, it drives my point home.
My care team at Boston Children’s knows me. Some of my doctors and nurses can read me so well, I don’t even have to say a thing for them to see that I’m in pain—they’re just another layer of my support system. Dr. Flores, Kate, Jenny the nurse…they all know me so deeply at this point, and they can anticipate my needs. Jenny uses the expression “daughter-mama”, and she really treats me like family. Some days she’ll come in, and she’ll say something like: “We’re gonna sit together, and we’re gonna cry together.” She can tell when I’m in pain, and I’m in pain right now. It’s a very beautiful storm. And sometimes the storm gets worse before it gets better. So you have to adapt, you have to reframe and shift the way that you think about it. I don’t lie to myself. I know pain, and pain demands to be felt. Pain isn’t made to last forever. You either tolerate it, or it’ll go away.
Honestly, some days are hard. One of the things that’s been hardest about the process is the grief I’ve felt around my identity—some of the things and people I’ve lost, even when the loss was ultimately a good thing. The ways that my identity has had to shift over time. I remember the first time that diagnosis really hit me hard, and how just thinking forward was so difficult. I remember wondering what’s my life going to look like, and I’m living with this for the rest of my life. I also remember thinking about how no one else in my family had ever dealt with anything even close to this before. My mom was always my rock, my support, but she had to cry—and she would. She’d let go, because she had to. I have something like 14 different diagnoses at this point, and when I’d get every single one of those diagnoses, my mom would be the one to start bawling. I’d let myself bawl after, but her tears had to come first.
At the end of the day, you have to be your own hero. My parents have been there for me a lot throughout the hospitalization experience. But I’ve had a lot of nights when I’ve slept here, alone, with no parents. Even back when I was a young child, my mom came here as much as she possibly could, but she couldn’t reasonably be expected to be here all of the time. When you’re a chronic and medically complex patient in the hospital, don’t expect someone to constantly be there for you—because they do have to care for themselves too. I have to let myself accept that it’s okay to not be okay, with or without my support system. Sometimes, I’d literally get down and depressed and I’d think: “I’m weak, I’m not as strong as I could be,” but my life isn’t as bad as all that.
One thing I’d want other chronic patients to know is that, really, it’s okay to not be okay. You have to grieve, you deserve to grieve, you have to move through some of the toughest emotions in order to get to some of the better, even the best, emotions. I got to a place where I thought I was so much better. After 12 years of treatment, I thought everything was over, and I thought I was better, when in fact I was worse than ever before. At the time, I just couldn’t look at it that way. I’ve experienced the feeling of needing to be around more people to not feel quite so alone, or the feeling of needing to always do something to keep busy. In the end, though, I really do think that we have to be our own heroes, especially in this situation. It doesn’t matter how many times you fall, you just have to keep getting back up. You need yourself more than anyone else. My physical scars ultimately motivate me, because they give others hope. In the end, I’m not a survivor, I’m a fighter.
If I hadn’t gotten sick, I don’t think I’d know my own passion. There was a period when it seemed like I was getting better, and I went into the business world. I built an entire business in New York, and then I took it out to California and moved on to San Diego, and then eventually to Los Angeles. I had such ambition and such drive—within my work, I’d first partnered up with a broker. But when I saw the value that I had at work, and how seriously others took me, I knew I wanted to be in business without a broker, and that I could fend for myself—that my work was valued. In late summer of the year that my business ventures were really taking off, but my health began to decline, and I was in denial. I didn’t want to believe that I was sick, and didn’t want to come all the way back to the east coast, but something in me knew that I really needed to check in with Dr. Flores. Once I returned to the east coast, and once I left the business world, things just kept on coming up that wouldn’t let me return to California. Then, Dr. Flores officially recommended that I not go back to the west coast. That was in August of 2018. I’ve been here at Boston Children’s, ever since, for weeks at a time. In the time that’s passed, I’ve found out that there’s no cure for my condition. It’s something that resides in your muscles.
I fought so hard not to be sick again, not to succumb to this, but I still feel like I lost everything. I feel like the same person, at heart, but there’s that identity that I lost in the process: the businesswoman. For me, honestly, business was never about money itself. It was about setting attainable goals. Like getting my mom into a good, comfortable and beautiful home. Before I fell into getting sick again, I never once wore sweatpants. I always wore heels, a suit, professional attire—I was interviewed by the news, out in California, to speak about my role within the business world. The thing is, in the end, I let appearance and wealth come before my health. I had been pushing and pushing myself, striving so hard to reclaim all of the time that I’d lost back when I was in-patient, within the hospital setting. All of it came around, full circle. And being sick again has taught me so much. It’s a genuinely humbling experience. I don’t eat by mouth any more; I live off of a small plastic bag, 20 hours a day. I went from being a Lady Boss in my power suit to being a person who has trouble just putting clothes on in the morning, every morning. The thing that you have to understand is that just because I was doing well during that period of my life, when I was a business woman? That doesn’t mean that I was healthy. My mom literally turned to me, this past fall, and she said: “Do you know, there’s a chance you won’t make it.”
My journey is literally a beautiful disaster of a journey. Did it piss me off, at 23, that my mom finally admitted that I might not make it? I’m just learning now. I don’t know. Sometimes, I get exhausted pretending to be stronger than I actually am—but then, I realize that it’s okay if I have to stop sometimes to pick myself back up. Ultimately, you have to realize that you can never do anything without your health, or without hope. But being weak doesn’t define you, and illness doesn’t define you. Sometimes, I forget the value and the purpose that I have for others. But I can’t. I have to be the one whose voice lifts up others. Can I know that I’m going to get out of bed in the morning? Can I really know that I’m going to be able to hold myself together mentally or physically—no matter what I might look like to others? Honestly, if you’re sick, you’re sick—and you can’t change it or control it, and certainly can’t blame yourself for being sick, which I was doing for so long. In my diary, I once wrote about that whole To Kill a Mockingbird thing…and how that, unless you walk an inch in someone else’s shoes, you just can’t possibly expect that they’ll understand or appreciate your perspective. Sometimes, I break down, and I have to break down, for 5 minutes, 10 minutes, 15 minutes. But I don’t stay down. It’s all part of grief and grieving. The thing that you have to remember, you always have to remember, is that the identity you once lost isn’t nearly as big—or as meaningful—as the one that’s coming for you.
I first began thinking about how to give back when I was younger. For awhile, I wanted to be a doctor—to give mental and spiritual help, and hope, to others. When I thought about other children and young adults with complex medical conditions, I wanted to be the person I’d needed back when I was 10, 11, 12 years old…the person who was so scared inside. My path shifted, and I’ve been in the business world for some time, but I’m still striving to find a way to change the culture of childhood illness. I’ve started a nonprofit to support children with complex and chronic illnesses, because kids need to understand that illness doesn’t define you. It doesn’t define me. It doesn’t change my character, and none of it is my fault somehow. I’m still me. I’m still Angelina. I’m still a person, and I don’t want sympathy or to be left out. Sometimes I have to take it easy, but so what? I want for other kids to know that sometimes, the battle doesn’t end, but you can still be victorious through your fight—and just because you need to cry, it doesn’t mean you’re weak. You’re brave; you just have to keep pushing. It’s not easy being sick, and it’s not a path that you chose—but it’s beyond your control.
I know that my scars give hope to others. I once asked my nurse, Jenny, what makes her believe in me the way that she does. She said: “You never quit. You always take on challenges, even in the face of pain.” During the toughest hours, the most difficult days, I can push through…armed with the knowledge that I can be a voice for someone who doesn’t have one, that I can throw light on a dark situation. I know I’m going to change the world. One day at a time, one person at a time.