Let me introduce you to my eldest daughter, Anastasia. When she was still a child she was diagnosed as having a congenital disease called tuberous sclerosis. The diagnosis was slow in coming because her disease is quite rare and today’s medical diagnostic tools had not yet been invented. It was a difficult time for our family.
Anastasia suffered seizures, mainly petite mal, which she gradually learned to shrug off. Some were grand mal which galvanized her brother Michał and us, her parents, into action. Grand mal seizures were life-threatening from falls, choking or the wrong kind of restraint. Not knowing when to expect such episodes left the family continually on-edge. Not knowing how best to help our daughter made her parents feel helpless. There seemed no place nor anyone to turn to, so little was known about the disease and so varied were the ways the disease could express itself. The doctors needed time and we needed immediacy.
Tuberous sclerosis, it is claimed, is often accompanied by cognitive disability. This appeared to be the case with Anastasia. Subsequently, an MRI scan revealed that Anastasia lacked an important structure in her brain. It is called a corpus callosum. You may recall that when his brain was autopsied, Albert Einstein was found to have had an oversized corpus callosum. The corpus callosum is a bundle of nerve structures that connect the right and left hemispheres of the brain. Albert Einstein had a superhighway connecting the two halves of his brain. We non-Einstein-caliber folk might be more than happy with a few two-lane highways. Anastasia lacked even a dirt road.
What this means to me in retrospect is that for much of her young developmental years, Anastasia needed to create and grow her own neural network where one did not exist. It was imperative that the two hemispheres of her brain learned to work together instead of operating as two separate brains vying for dominance. Just imagine what challenges Anastasia faced. Slow physical growth, mental exploration from one or the other side of her brain, willpower, persistence, selecting something that seemed to work. Testing it. Choosing it or rejecting it. Simultaneously trying something else. Slowly creating a working pathway. Reinforcing it. Moving on to a different pathway. To me, what Anastasia accomplished, necessarily alone and by herself, approaches Olympic achievement rather than represents cognitive disability. The final result is a series of compromises that we may call a cognitive disability but it is because we don’t have a vocabulary sufficiently discriminating to applaud her extraordinary formative effort and achievement.
Some doctors advised us not to expect Anastasia to live past her teens. Last week she celebrated her 52nd birthday. For the past 35 years she has lived in a group home within the amazing community of over 100 disabled persons and their caring and creative caregivers called Cedars of Marin. As a resident, Anastasia participates in an annual “Individual Support Plan”. This year her ISP was conducted via Zoom. Following are a few of the things I learned.
Start on an encouraging positive note when talking about goals.
Anastasia has had a great year and is looking forward to an even better year in 2021. She is in a relationship with Gil and this continues to make her happier and gives her companionship. She and Gil continue to do many activities together that include cleaning, laundry, and helping other residents. She is adjusting to some scheduling changes with the current shelter-in-place directives. Anastasia is a great help to the staff every day.
If you volunteer you can often be assigned the jobs you like.
Living in a group home means sharing chores. Anastasia took to some, including rolling the several recycling and garbage bins down the long driveway to the street curb for pickup by the municipal services. She is strong, appreciates tidiness, and is happy about the home’s efforts to recycle. She took the initiative to help get the barrels out for pickup and now happily handles, by herself, the weekly chore.
Goal – Anastasia will continue doing chores she enjoys which include emptying trash receptacles, helping with dishes, moving bins to the road, and helping with the laundry.
Do For Others When They Can’t.
Each of the residents is assigned a regular day each week for access to the community clothes washing machines and laundry supplies. It is their responsibility not only to wash their own clothes, but to keep the laundry area clean and tidy. Some of the residents find this more challenging than others.
When Anastasia observed one of her housemates having difficulty, she offered to help. This was much appreciated by all, and was a far better solution than just complaining.
Express your frustrations appropriately.
At the same time, there are situations that arise between people who live under the same roof that aren’t so easily solved. In those situations there are peaceful ways to articulate and use your words to express what is bothering you. It is one of Anastasia’s goals for next year to improve this skill. Otherwise, what (or who) may be bothering Anastasia, festers inside her. The offending person has no opportunity to improve his/her conduct. Instead of a reconciling conversation, conflict can arise. It is far better to express one’s frustrations early and appropriately, than it is to let them fester and grow toxic.
Goal – Anastasia will seek staff support in managing her emotions.
Benchmark – Anastasia will continue to demonstrate the ability to seek staff support to improve communication with her peers without anyone getting their feelings hurt. Again, this year she has greatly improved with this skill.
This comes up regularly on Anastasia’s annual ISP’s but it is a goal she finds worth concentrating on.
Goal – Anastasia would like to continue to lose weight and exercise more.
Benchmark – Anastasia will discuss healthy eating habits with Cedars Staff and Family Members including portion size and food choices.
Benchmark – Anastasia will continue to walk at least 3x a week.
Always seek opportunities to expand and improve your skills.
Anastasia is a Master Weaver. Yet she has high standards for herself. She works with Staff and constantly seeks ways to improve her skills.
Goal – Anastasia would like to attend a weaving support group and a yoga class on Zoom.
Benchmark – Anastasia will continue to participate in weaving and yoga classes.
I have sometimes wondered upon what metrics will St. Peter determine to open the “pearly gates” when Anastasia, at the appropriate time, appears before him. At first glance, it seems she has been unfairly disadvantaged. If so, it raises issues of God’s fairness and complicates how any life can be fairly considered. It makes one wonder if the example of the Saints pertain to us. Perhaps we, too, have disabilities that can excuse us for our failings.
I’ve concluded, however, that mercy must be evenly available and justice requires we will be evaluated on the basis of the same criteria. Otherwise the virtues are nothing more than adjectives, arbitrarily applied to random lives, meaning nothing to our personal goals and aspirations.
We’ve each been given extraordinary unique gifts; gifts the world needs and depends upon, if only we are generous enough to develop and share them freely. We each have our share of corresponding weaknesses and disabilities that make us susceptible to being fearful, self-centered, angry, defensive or otherwise tempted by selfishness. It is always our decision whom we choose to become, whether our physical bodies or cognitive abilities are more similar to Anastasia’s or to Albert Einstein’s. It’s no easier for either of them… or us to choose a path of admirable living. Nor is it any more difficult.
Chet has adjusted to the changes in the evolution of his cancer this year. But there are several ways in which he needs to improve… [See above for guidance.]