Note: In this episode, I catch up with Julio and discuss lifting and positioning with a disability. A fitting topic, because not long after recording this podcast, I went to the hospital to get an x-ray to prepare for the operation for taking Spinraza, the first drug to treat people with our condition. Convincing the people in the radiology department on the importance of proper transfers was an uphill battle, to say the least. But as a recent workshop given at the Ann Sullivan Center in Lima showed, proper lifting is a sweet science. — Matt

Partial transcript

Julio: At 68 years old, with SMA, things always happen that surprise me. So, not long ago, at the end of May, the administrative personnel at the Ann Sullivan Center where I work gave rigorous medical exams, and I was no exception. Alberto, my personal assistant brought me to the medical center where they provided all of the facility arrangements that severe disability required. I took the psychological tests on the first floor, not on the second like everyone else, and also, on the first floor, they performed the electrocardiogram with a portable piece of equipment. The results of the first test did not seem normal, and I thought it was due to the force exerted on my body with each transfer I underwent from the time they got me out of bed at 4:00am to the time they put me in the stretcher around 9:30am. The question that the technician and the doctor that were giving the consultation had was: Have you had a pre heart attack before? I started to worry. I said no, and they did two additional tests to see if the wave pattern repeated. The medical center was not far away, so we travelled by foot (with me rolling, of course), while I attempted to adjust myself to the potential diagnosis and assimilate to this new condition, which would be added to an already extensive list of secondary conditions I have gotten over the years.

Experience helps when one is of my age. Just another battle scar, I told myself, and as always, there was no other option but to keep fighting. It took me longer to accept the glaucoma diagnosis after overcoming the retina detachment of my right eye in 2012, than it did this new condition. And how it helps to have work to distract you! My worry took a back seat, and my mind became focused on finishing the translation to Spanish of the PowerPoint slides that Jennie Atwood, Ellen Pope, Brenda Randall and Joan Augustyn required for the workshop that the Ann Sullivan Center was organizing on “Lifting and Positioning” and “Sensory Processing, Eating and Sleeping Issues.”

In the June 3 workshop on Lifting and positioning, I observed the extraordinary work displayed by the 4 North American professionals in brilliant practical demonstrations with participant groups. Seeing such knowledge put to action caused me to think back to my past, which I have a tendency to do, and about how much this would have helped my mother Julia to learn how to lift me off the floor when I would fall, or how to go from the floor to the bed when lifting me had become impossible for her. Or a certain English gentleman in the ’80s, who offered to help his compatriot and my friend, Barbara Spears, by lifting me out of the car when we got to the Church of the Good Shepherd of Miraflores for the 10am service, and because of a lack of proper technique, I fell on the ground. And right afterward, Mrs. Spears, in the blink of an eye, lifted me up and sat me in the wheelchair. The experience of having helped her husband with muscular dystrophy day in and day out explains how she, at 1.6 meters, could lift more than that man, who must have been 1.8 meters tall!

The times were different back then, but the other day during that workshop, I was reminded that the purely medical focus toward disability is just as strong now as it was then, ending in a diagnosis and a goodbye. As if I had gone back in time, I spoke with a mother from CASP with a child affected by Duchenne muscular dystrophy, and I know that she feels helpless because she cannot do anything for her son, and because the state and the law do not grant any assistance to people with disabilities. I remembered my mother, because while she saw how my body was deteriorating, I never saw her depressed, but rather she had immense faith. But I imagine how she must have cried when she was by herself, because she had no one to talk to about her child’s specific problem. Three weeks later, the official results of the medical exams showed that my heart was fine, according to the cardiologist, and that a stomach bacteria had been detected in my blood and urine tests. Which must be true, because on May 28, I was feeling worse after each test of the many I had to take up to 1:30am the next day. Fortunately, I had an attendant and was at CASP. Without sleep or strength, with the help of the translators Olenka and Katherine of UNIFE, we finished the seminar project, and after resting 2 hours at the department of CASP, I left.

And if anyone asks, “Why is a person with spinal muscular atrophy, in a developing country, where I have gone from adolescence to old age, still alive?”, the answer is, the force of will and courage are strong factors, as well as the help received from people in solidarity from time to time. It is also true that God responded to my prayers through CASP, which has constantly been at my side for the last 30 years, and which for the past five has subsidized my living arrangements, as it were, via an apartment to sleep in Sunday through Friday, because the progress of SMA and my dependence on others for my care, generated more costs than I could take on.

Retirement would bring its own problems, but there is hope, although I would also like to have Spinraza even though the 750,000-dollar price tag says different. Today more than ever, miracles are necessary for someone who plays by the rules in an unfair fight.