Not All Pandemic Lessons Are Online

Life Lessons

Vijai Kuruppacherry

I was at work when my mom called me, her voice frantic over the phone. "Vinod has been yelling to go out to get Pepsi and now the police are here."

Feeling my anxiety level rising, I listened to a barrage of statements that were barely comprehensible. I asked her to wait a bit and drove with my wife, Alma, to the Renew Wheaton Center apartments, where my parents and brother were staying.

BROTHERLY CHALLENGES

Vinod, my brother, is on the autistic spectrum. He lives part of the year in India with my parents, where he and they have their regular medical care, and he attends a school for people with special needs. They are permanent residents in the U.S., and when they come, they live with us. He comes to the STARS meetings on Sunday mornings and enjoys them. In 2020 they were in for a much longer stay during the year due to the pandemic, so they moved to a rented apartment at Renew Wheaton Center on Liberty Drive.

Vinod turns fifty in April this year. When he first started exhibiting symptoms of his developmental disorder, no one knew what to make of it. He exhibited savant-like skills at an early age. He taught himself how to read and write in English around the same time. By the time he was four, he was always reading— magazines, newspapers, anything he could get hold of. Everyone in the family was proud of his accomplishments, until he started attending preschool. There his behavioral challenges led to the school asking my parents to remove him from enrollment.

At the time in India, autism was not widely recognized or diagnosed except in highly specialized settings. Although the term was used to describe cases in which people exhibited social aloofness and self-absorption, the term "infantile autism" was first listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980.

In the mid-1970s, my parents took Vinod to the Christian Medical College and Hospital (CMC) in Vellore, India, one of Asia's most celebrated hospitals. They could not understand how a child with such skills could also exhibit developmental delays. He was frequently loud and disruptive, especially in social settings. They diagnosed his condition as childhood schizophrenia.

Over time, his vocabulary decreased and was eventually reduced to familiar phrases with which he made sense to his family. These behavioral challenges continued into adulthood. He discontinued formal education at the age of five. He would be enrolled into a special needs school again, only at the age of twenty-eight.

A NEW ROUTINE

So, when my mother's frantic call came, disturbing thoughts played in my mind. When we reached their apartment, my dad let me know that Vinod had been yelling to be let out to buy a can of Pepsi, and a neighbor had called the police. The officer was courteous and spoke kindly to Vinod.

This was not the first time the neighbors had reported the noise. Two times prior to this, the apartment office had called us to let us know that they had received complaints. We let them know that we were working on getting Vinod adapted to his new surroundings. The office manager told us that we needed to ensure that it did not keep happening. I was sure that this would be the last straw now that the police had been called. When we got there, the officer had left, and Vinod appeared to be calmer but still insisting on getting his soda.

We tried reasoning with Vinod. We struck a deal with him that we would come by after work in the evening and take him out to McDonald's where he could get Pepsi from the drive-up window. He seemed to see the justice of this and agreed.

We established a schedule for him to get his soda—Mondays, Thursdays, Fridays and the weekend. We would come daily to check on him and my parents. Our activities during this time involved helping keep house, getting virtual appointments with their U.S. doctors and getting their food. We took turns spending the night with them. Either one of our two kids, Alma or I would be present each night in case of an emergency.

Thankfully, the apartment office did not follow up on the matter. Over time, Vinod adapted to his routine. We sent notes to the neighbors on their floor, requesting patience with his slow adaptation to the new environment. A couple of them sent kind replies, with promises to meet once the pandemic was over. A Muslim family from Pakistan sent a gift of chocolates. My parents were greatly encouraged by these gestures. Our kids put together a Christmas tree and lighting. Some family and close friends sent them Christmas cards. Eventually Vinod started to love the place so much he would sing ditties whenever we went out with him or came by to visit.

CAREGIVERS FOR PARENTS

At the same time, I had been helping my parents with various doctors’ appointments involving their own health challenges. A Christian primary care practitioner had a kind office manager who called often to ensure their well-being. I was finding out that sometimes it is a great blessing to receive, just as it is to give. This simple, loving act relieved the frustration of navigating the labyrinthine maze of getting specialist care for my parents’ various healthcare needs. We had called to set up an appointment for my mom’s failing eyesight. She had had cataract and glaucoma-related surgeries years ago, and now had optical nerve damage. She did not have vision in one of her eyes, and the other eye was deteriorating. The ophthalmologist needed a PCP’s referral. After we got the referral, the ophthalmologist wanted us to get another referral from a general ophthalmologist, after which the specialist would step in. All this took several weeks.

On Christmas Eve, we had my parents and Vinod over at our house for dinner. We were concerned that Vinod might insist on staying the night. He had stayed with us before the pandemic, but with our work from home and the kids' sometimes virtual classes, this created challenges. After dinner, he seemed elated to be with us and again sang some songs. When he was done, he was ready to return and got up to go. The apartment was becoming home.

Throughout their stay, we were concerned about my parents' health. Both are diabetic and have multiple health issues that needed careful monitoring and care.

On New Year's Eve, we dropped in to have dinner with them, and my intuition prompted me to check my mom’s blood sugar level. It was so high the machine advised her to get medical help as it went far beyond a safe threshold. I stayed with my parents overnight, monitoring her blood sugar several times during the night, after we administered a rapid acting insulin to lower it. The night passed without incident, and we changed her routine and insulin injections after consultation with her doctor.

Remarkably, Vinod, who is prone to insecurity and agitation during such times, was peaceable, as if he knew it was a difficult situation and better for him to stay out of the way. A couple of times my sister, a physician who lives in Bloomington, came by with her family, including three children. With them and our family in the apartment together, chaos reigned. Again, Vinod was not unduly perturbed.

More difficult for my mom than her failing eyesight and frequent physical aches was a deepening sense of loneliness and isolation. Prone to anxiety and depression, she had been battling these feelings for several years. Now she spent most of her time in the apartment unable to get out of bed or talk much. Her PCP advised her to improve her diet due to the constant fluctuations in her blood sugar levels. He would tweak her insulin intake to adjust for these, but they kept fluctuating wildly, likely due to her inconsistent eating habits.

Some days she would skip lunch because she wanted to lie down and be undisturbed. On other days she would drink a glass of orange juice, and the sugar level would shoot up. We would visit with her but get little response during our one-sided conversations. It took a toll on us as caregivers, even though we shared these jobs among the family members. For one of us alone to perform these tasks would have been a daunting challenge. I’m thankful for my family who shared the burden.

BACK TO INDIA

In January, my mother's deteriorating eyesight (from the optic nerve damage following glaucoma) took a turn for the worse. Coupled with the challenges in managing her diabetes and other issues, she felt it would be best for her to receive care in India, where she had access to in-home caregivers. She had an ophthalmologist’s appointment coming up but couldn’t wait that long. I accompanied them to India in mid-January and helped find a long-term caregiver to support my brother and parents.

In India, we were in mandatory quarantine at my parents’ home for seven days, and then we needed to get tested for COVID-19 in order to be released. A Hindu neighbor, whose parents had known my parents for more than 80 years, called and asked about their health needs during our mandatory quarantine. He helped with shopping, getting mobile phone and internet connections reinstated and other such essentials. He offered to call his sister who was a greeter at a major hospital in the area to stand by when my parents visited. He also offered to help sourcing a home nurse to support them. Every day he would check on them before heading to work. Once again, such kindness taught me that no system, whether government, church or society, could replace strong relationships when it came to managing such challenges.

After twelve days in India, I flew back to Wheaton. On my return, my parents let me know that the new caregiver had been wonderful, and Vinod was responding well to him. My mother went to a glaucoma specialist who informed her that her optic nerve damage could not be reversed. The best they could do was to relieve pressure on her working eye to slow its deterioration. However, a few days later she stepped out for a walk, and the sharp sunshine hit her eye, and she called me excitedly to say that there was marked improvement in her vision. A couple of days later, she called to say that the improvement did not last long. These ups and downs mark this season in my parents’ lives. I’m often reminded of the words of the English churchman, Edward Bouverie Pusey: “Never dwell on the morrow. Remember that it is God’s, not thine. The heaviest part of sorrow often is to look forward to it. The Lord will provide.”

PANDEMIC LESSONS

The pandemic has been especially hard on the elderly and people like Vinod, not the least due to the social isolation and precautions to avoid contracting the virus.

What struck us was Vinod's resilience and ability to adapt to the changed conditions. This did not come without challenges, but it offers a glimpse into how persons with autism can comprehend these difficult situations. Further, it offered me a lesson on Imago Dei, something we mention in theological ruminations to draw out principles about human nature, mission, human agency of God and human rights.

At a very operational level, these past months taught me how to care for Imago Dei better—its need for restored dignity when people, disturbed or annoyed about the noise, call the police, or when aging parents, unable to support Vinod, let him soil his clothes before he can reach the toilet. It helped me remember that our systems, in church or outside, are limited in their capacity to support such needs.

So often we miss out on opportunities to witness God’s compassion when we wait for people to voice their needs or come to church programs. I’m thankful to the people who sensed these needs from afar and reached out to us. I’m thankful to God that such lessons, well known to generations a hundred years ago, can still be learned even though it took a pandemic to teach them to us.