Crossing the finish line at the Boston Marathon is a momentous occasion for any runner, 而是奥利维亚·科伦坡, it marked the end of a journey much longer than 26.2英里.
科伦坡, a student in Boston’s College Lynch School of Education and Human Development, has struggled with a variety of rare and undiagnosed medical conditions for most of her adult life. 今年2月，她跌至谷底, when the pain in her ribs and abdomen became excruciating, and her weight and blood pressure dipped dangerously low. Her medical team was unsure if she would live to graduate from college, 诊断她为成人成长失败.
在这一点上, 科伦坡 was a regular at both Massachusetts General Hospital and Boston Children’s Hospital, where she’d sought opinions from 33 doctors and endured 12 overnight stays her junior year. She’d been diagnosed with a variety of chronic conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), 复杂局部疼痛综合征(CRPS), 肥大细胞活化综合征(MCAS), but no medication or treatment had been successful in controlling her symptoms. 无法找到解决方案, some doctors dismissed her condition as either psychosomatic or the result of disordered eating.
“I had doctors from the best hospitals in the world tell me that the pain was in my head, 我得了厌食症——这些都是大错特错的,她回忆道。. “I felt very much lost in the middle and like I wasn’t being listened to.”
科伦坡很大程度上依赖于她在英国广播公司的支持网络, which included friends who would drive her to the emergency room and Dr. Amy 科斯塔 of University Health Services, whom she met with several times a week.
“She was the linchpin between all the medical teams,” 科伦坡 said of Dr. 科斯塔. “When it was really rough, she said, ‘Don’t worry, I’m not going to give up on you. I’m not going to give up until we figure this out.’”
寻求答案
特别是, many doctors were dismissive of 科伦坡’s growing suspicion that she had Median Arcuate Ligament Syndrome, 称为肌萎缩侧索硬化症, a compression syndrome of the celiac artery and surrounding nerves. The symptoms seemed to mirror her own: intense gastrointestinal pain (patients often describe MALS pain as being on-par with end-stage pancreatic cancer) that doesn’t respond to GI medicine or show up during scopes and tests.
作为奇迹里程团队的一员, 科伦坡筹集了超过8美元,为波士顿儿童医院捐了一万美元.
科伦坡多次要求接受肌萎缩侧索硬化症检测, but was told the condition was “too rare” to justify the procedure. 她坚持, 最终获得初步测试, despite the fact that her medical condition had begun to stabilize by spring semester, allowing her to gain weight and get cleared to exercise. 5月, she signed up to run the Boston Marathon on the Children’s Hospital Miles for Miracles team, 正如最初的测试显示出als的证据一样.
“我的心态发生了转变，”她回忆说. “I remember thinking, this has taken so much from me. It took away my high school years, my prom, my chances of getting recruited to run in college...我已经受够了. 我受够了让肌萎缩侧索硬化症控制我的生活.”
然后到了六月, her doctors agreed to a diagnostic procedure that gave 科伦坡 the answer she’d been looking for. 她看起来确实患有肌萎缩侧索硬化症, 他们说, and was a candidate for a surgical procedure widely regarded as a cure. 手术定于7月14日进行, 科伦坡继续训练, tuning out one of her doctors who said she was “crazy” for thinking the procedure would help.
当她在术后的迷糊中醒来时, the first thing 科伦坡 remembers feeling was the absence of pain. Despite having six incisions in her abdomen, she could finally take a deep breath. 三周后, 她走上了街头, sweating through long runs and hill workouts near her family’s home in Massachusetts, relearning what it felt like to push herself without passing out from dehydration or low blood pressure. 她把这个阶段称为“人生第二阶段”.0.”
坚强勇敢
After cheering on the Boston Marathon runners as a freshman at BC, 科伦坡 asked her doctor at the time whether it was something she could ever hope to accomplish.
“She was really encouraging but also said ‘this is going to be a big struggle for you, there are a lot of things you need to do before then,’”科伦坡回忆道.
三年后，当发令枪响了, 科伦坡 kept pace with her Children’s Hospital teammates, then slowed a bit as the middle miles took their toll. 她知道自己能不能跑到21英里, where her friends were waiting with signs and shouts of encouragement, 她会说完.
“I was so focused on surviving each mile that I didn’t get to appreciate the enormity of it as much as I thought I would,她承认道. “But I feel like my friends held that space for me, and did a good job of reminding me how huge this is.”
科伦坡 crossed the finish line with tears in her eyes after running for just over five and a half hours. 第二天, she arrived at her field placement at the Sojourner House in Roxbury, 身体酸痛，但准备好工作了. In 2023, as part of a combined five-year program run by the Lynch School and 电子游戏软件 School of Social Work, she’ll graduate with a master’s degree in social work, 她希望在医院里使用.
展望未来, 科伦坡 is still dealing with chronic conditions, but with MALS erased from the equation she feels equipped to handle whatever life throws her way. 除了她的支持网络, she credits a mantra that she and her mother developed—“strong and brave”— with helping her stay positive.
“We would just repeat that back and forth to each other,” she said. “And I think I intrinsically believed that I am strong, 我会熬过去的, 我的生命值得拯救.”
Alix Hackett | University Communications | October 2021