Reinventing a Life
I have recently been watching home videos of my son when he was a year and a half. In one scene he is inspecting a cheese grater composed of several parts. He winds the handle, trying to figure out what it is and how he might use it. He invests time in doing this, true to the man he has become, a person interested in how things work. I have saved a set of drawings he did at age ten, designs for gardening tools, each equipped for a unique task, the kind of tools one might find in a high-end gardening catalog. More recently, in his late twenties, he designed various specialized devices for the 3D printing metals division at Hewlett-Packard. He also helped a start-up company design a beer tap handle that reports electronic information about how much of each brand of beer is poured and how full the kegs are.
Knowing his mind works this way, I wondered if he might be able to design something to prevent one of the weakening fingers on my left hand from dragging over the keyboard, making the typing of certain letters difficult. He immediately saw a possible solution and drew an outline of my hand. Now I await his invention eagerly.
While I was at my hairdresser’s a few days ago, I mentioned this finger dragging problem when she and I were conversing on my text-to-voice computer. She, too, immediately went into action. She pulled the elastic strings off a face mask, tied them together, made a sling for the finger in question, and looped the rest around my wrist, successfully raising the dragging finger so typing was easier. I was impressed with her resourcefulness and her immediate certainty that something could be done. She attributed this to her earlier work in special education where there was often a need to find immediate workarounds.
The life of someone living with ALS is rife with the need for workarounds. It has been gratifying for me and Paul to find solutions to the various challenges of weakening muscles that arrive on our doorstep with frequency these days. Paul, the cook in the household, when looking for foods he could make that I could swallow, discovered the terrific versatility of the crepe. Almost any food can be cached inside a soft crepe so that I can swallow it, especially if the whole thing has been slathered with cheese or mushroom sauce. My life as an eater has been considerably extended as a result of these crepes.
When I first began sleeping with a ventilator, I was waking up with a mouth dry as the Sonoran Desert because the ventilator was forcing my mouth to stay open. Several kinds of tape we purchased from the internet, designed for the purpose of keeping the mouth shut, did not work, so we resorted to using a slab of heavy gray duct tape. It has been a successful solution despite the fact that it makes me look as if I’ve been abducted.
Other successful workarounds are the fingerless gloves and toes socks I use, both of which keep my curling fingers and toes straight and separated. A variety of “adult bibs” and rags help to address the mess I make in drooling and eating. When any problem arises, Paul and I both pop into high gear: What can we do about this? I’m sure any ALS patient understands what I’m saying. The progress of the disease is different in every individual, so the workarounds we need often have to be customized.
My son recently quit his job in 3D printing research at Hewlett-Packard. He found that a big company like that tends to take a long time to implement change. He aspires to work in startups which are nimbler and more responsive to new ideas. I watch him inventing a new life for himself: getting a certification in project management to accompany his physics degree and his MBA, putting out feelers to friends in various high-tech fields, researching the local employment landscape, applying to dozens of jobs. It’s thrilling and scary to watch. He’s trying to balance his need for a job as soon as possible, with his desire to have a job that builds a logical career trajectory. What fascinates me most is to see him applying his skill at invention to the redesigning of the overall structure of his life.
Seeing this, it has occurred to me that that is a skill we all periodically summon in order to create a satisfying life. We make certain choices early on — a school, a major, a career, a partner, a place to live — and when these choices don’t work out, we step back to reassess, reimagine, make new choices. Sometimes we get stuck in a bad place and are slow to realize an alternative plan is needed, or we’re simply afraid to leave behind what we know and strike out in a new direction. All that time, we think, invested in education, or a relationship, or a person, or a place. How can I throw it all away? What a waste! So many of us have inherited the idea that our initial choices will carry us through to life’s end, that in our youth we step onto a kind of treadmill that will obviate the need for big choices later on. But that is rarely true. Many — if not most — of us reach middle age and feel our jobs or professions are not what we expected, or that we are no longer in sync with our partners, or that we’re alienated from the places we live. We feel we have failed, and our choices have been bad. But what a strange way to think! How could we possibly want from life at forty or fifty what we wanted at twenty or twenty-five? We have aged and matured (hopefully) by middle-age — so of course life looks different and we value different things. Changes of direction at that point are a natural and healthy outgrowth of reflecting about our lives. At those junctures, we need the flexibility for re-envisioning and reinventing.
In this way the resourcefulness demanded of people with ALS is no different from that demanded of any individual working out a life. I need to remember that as I try to adapt to my continuously changing body. I never want to behave like a giant corporation resistant to change. I want to be as open to new ideas and reinvention as the startups my son aspires to work for.