Skip to content

Every single moment: One photographer’s journey with ALS

It was a classic Medicine X moment: Patient-advocate and artist-in-residence Anthony Carbajal was on stage talking about his disease -- “Having [it] really, really shows me that time and life is way too short" -- when he began choking up. The audience, many of them patients and many more in tears themselves, immediately provided encouragement, giving him a rousing round of applause and cries of, "You've got this!"

After a pause, he went on.

Carbajal's brief talk on the first day of this year's MedicineX conference was packed with emotional and real moments like this one. Carbajal shared with attendees how his diagnosis of Amyotrophic Lateral Sclerosis (ALS) at the age of 26 has affected both his life and art.

Before his diagnosis, he was a professional wedding photographer, a career that "charges his soul" and that allowed him the flexibility to care for his mother, who also suffers from ALS. He has fought to keep doing the work he loves (as we highlighted in a piece earlier this week, he's still a prolific photographer), but he doesn't want to downplay the challenges of living with ALS. "It's relentless, it's debilitating," he said of the disease. "And we really need a cure."

From his wheelchair Carbajal now photographs subjects from below, an unusual perspective that gives his photography a unique feel and has helped teach him that a "humble perspective is an inviting perspective." He sees this not as a disadvantage but rather as something that gives depth and meaning to his art and makes it easier for him to approach society's most vulnerable. "Nobody is intimidated by my appearance; my wheelchair breaks social boundaries," he said (as shown in the clip above), and later added, "I am a more abled photographer because I’m allowed to be more vulnerable."

Most importantly, he said living with ALS has taught him just how precious those everyday, fleeting moments that he tries to capture in his photography really are.

We forget about the beauty of life's small things and about the importance of living in the moment, he told attendees. "We get distracted with our devices and with our screens," he said, noting that he can't pick up devices any longer, but that might be a good thing. "I can’t even bring the camera to my face, so I live and I’m in the moment," he said. "Every single moment."

Previously: It's back! Stanford Medicine X returns to campus  and Countdown to Medicine X: “You can still have a meaningful life" with a disease
Video and thumbnail photo courtesy of Stanford Medicine X

Popular posts

Category:
Biomedical research
Stanford immunologist pushes field to shift its research focus from mice to humans

Much of what we know about the immune system comes from experiments conducted on mice.  But lab mice are not little human beings. The two species are separated by both physiology and  lifestyles. Stanford immunologist Mark Davis is calling on his colleagues to shift their research focus to people.