You Don't Look Sick
What are your experiences after being diagnosed with Multiple Sclerosis in your twenties during the peak of your social life? How do you begin to live your new life in a body that is familiar and yours, but now feels foreign?
Alvarado’s photographs document Robert Sanganoo’s daily life and adversities living with Relapsing-Remitting Multiple Sclerosis over the course of two years. At a time when most adults in their twenties are pursuing a career and meeting significant people, Robert takes his days at a pace unimaginable to the normal person. From physical therapy to at-home workouts, Robert wants to no longer just survive this disease. Having navigated a significant distance from the day he was first diagnosed, this positive direction comes at a time when our state of government in regards to health care may look to hinder the lives of our sick. Unable to work due to his body’s condition, Robert is dependent on the health care our government supplies, with a rift to it bringing serious repercussions for him and his progression towards a productive life. This essay will be his first time openly speaking about his battle with anyone outside the family and people sharing the same fight. With the purpose to open more conversations about this disease and to continue finding a cure.
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“I was first diagnosed with relapsing-remitting multiple sclerosis in 2011 at the age of 21. Prior to my diagnosis, I had been an active person, playing sports my entire life."
An article from a local newspaper published months before Robert was diagnosed with Relapsing-Remitting Multiple Sclerosis displays Robert playing basketball for his high school basketball.
Robert Sanganoo Jr., a thirty-year-old resident of the Bronx that was diagnosed with Relapsing-Remitting Multiple Sclerosis in his early twenties, attempts to combat the heatwave in New York City by cooling down in the basement of his Mother's home in The Bronx.
Robert sits for the second part of his Ocrevus infusion. Ocrevus is the latest treatment Robert has received to help combat the symptoms attributed to Relapsing-Remitting Multiple Sclerosis. After today's treatment, Robert and his sister Shyvonne spent the remainder of the afternoon sitting on a park bench on the riverfront taking in the cool winds coming off the East River's waters. Manhattan, NYC, 2018.
After living at his sister's apartment in Manhattan, Robert moves to his Mother's home in the Bronx for more space and accessibility to his doctors.
Robert and his Mother walk their dog “Wifi” around the block in a rare moment of bonding between the two.
A nurse visits Robert at his sister's apartment in the Inwood neighborhood of Manhattan and collects his monthly blood samples used to help monitor his body for any side effects attributed to his yearly infusion of Lemtrada; a treatment used to combat the progression of Multiple Sclerosis.
"I began doing some personal research, but even with the information I have read, I am still ill-informed on the disease I am facing." Robert lays under the pear tree planted by his father and attempts to cool down in order to combat the heatwave in New York City.
After a long day of doctor appointments and physical therapy, Robert makes the difficult journey up to his room on the top floor of his Mother's apartment in the Bronx.
Robert's Father, Robert Sr. holds a family photograph taken during a vacation to an amusement park at his home in Yorktown Heights, New York. Before moving to the Bronx, Robert spent 20 years living with his Father in Yorktown Heights. This town is the same town that started his sports career when he became part of their varsity basketball and football team.
Robert takes in the brisk winter air at a basketball court in Yorktown, New York a court he would spend endless hours perfecting his layups and free throws prior to being diagnosed with MS in his early twenties.
Under the guidance of his physical therapist, Robert works on his core strength with the aid of a resistance band during his weekly physical therapy session in Manhattan.
Robert climbs down four flights of stairs to the front entrance three times a week in order to attend his doctor appointments and physical therapy sessions in Manhattan.
Robert completes workouts in the small confines of his sister's Manhattan apartment. Robert performs these workouts in order to slow the progression of RRMS.
Robert attempts to combat the heatwave in New York City by cooling down near a window at his Mother's home in The Bronx.
As the year starts to wind down Robert has started to become part of the MS community by attending as many events as possible. As one of the younger members diagnosed with MS, Robert feels many in the groups look to him as the bridge between those impacted by the disease at a young age. Here Robert speaks with supporters and friends during an MS Hope rally in Midtown, Manhattan.
Everyday tasks such as getting a haircut or depositing a check take much of Robert’s day due to his low mobility and dependence on car services that need to be scheduled a day in advance. Here Robert stops at a local barbershop in the Gun Hill neighborhood of The Bronx for his haircut before a family party.
After a day filled with presentations and panels, Robert embraces family and friends that shared an evening with him during the yearly MS Day in Uptown Manhattan.
With the help of an anti-gravity treadmill, Robert walks effortlessly at his weekly physical therapy session in Manhattan.
"Once I was diagnosed my body began to quickly change. My mobility started to deteriorate and I haven’t been able to run since. I’ve been stuck in a depressive state stemming from even before knowing I had Multiple Sclerosis." Robert holds himself up with the help of water pipes hanging overhead as he cools off from the summer heat at his Mother's home in The Bronx.
Robert's walker sits outside his Mother's apartment in The Bronx as he waits out the passing rainstorm before commuting to his weekly physical therapy appointment in Manhattan.
"This will be my first time openly speaking about my battle with this disease with anyone outside of my family and the people I have met facing the same struggle. I no longer want to just survive.”
Robert S Sanganoo Jr, New York City, 2012; National Multiple Sclerosis Society, Southern New York Chapter.