If you expect to be disabled by chronic illness, particularly if you have a dependent who will be similarly disabled, plan to maintain reliable transportation. I cannot overstress the importance of this.
A couple of years before we got myalgic encephalomyelitis, I bought a lovely Subaru Forester. Its convenient size for the family, fuel economy and good handling on the winding and sometimes slippery backroads in our rural area all made it a great choice. It was used but in excellent condition and still under warranty. I made the monthly payments on this practical vehicle, kept up its scheduled maintenance, kept it equipped with good tires, and kept registration and insurance current and, against the arising of some unforeseen problem, I paid auto club dues so towing would be a simple and relatively carefree arrangement. In short, I was a perfectly responsible vehicle owner.
When I got sick, inability to work and earn conspired with the overwhelming onslaught of related troubles and all together they made it gradually and at first imperceptibly harder to remain so perfectly responsible. Late payments, delayed maintenance, delinquent registration renewal fees all shuffled in with the paperwork problem pile, to be caught as caught could when each day I made valiant attempts to meet normal and additional responsibilities through the ever-present cloud of pain and exhaustion.
By the time the upkeep of that car was clearly too much for me, I was too sick and overwhelmed to know what to do about it. I tried asking family members, friends, and financial advice professionals associated with charitable agencies. I explained my problem to the bank that held my car loan. Should I sell the car? Could someone take over payments? Should I trade it in? In my illness, when clear thought on what to make for lunch can sometimes overwhelm me, these questions were an enormous challenge. Before I could muddle through to an answer, my car was repossessed.
All I knew was that I needed a car. The hour’s drive to the clinic where we had our regular medical appointments, the far-flung and inconveniently located psychologists and dentists with whom I was supposed to arrange additional health care, even the five minutes’ run to town for groceries all made it necessary to keep a private vehicle. Life in a larger town, along major public transportation routes, would have been different. I keep that in mind as I search for the affordable housing that isn’t available.
(Of course, in a city my insomniac but otherwise well child couldn’t take the night time walks that help her battle her migraines and sleeplessness, so back to wanting a rural home and a reliable car. The benefits of clean air and a caring community increase the wish to remain here, not that beggars are allowed to choose. I’d accept any place we could call our own, anywhere.)
In any case, for now I’m here, and here I face the challenge of hauling a bedridden child to his feet and dragging him through a grueling six hours round trip on jouncing, rumbling buses with his ever present pain—and I mean jouncing, hitting every pothole hard—to make it to one appointment being required of us by the Social Security Administration in order to determine whether we are, in fact, disabled.
There is a solution in the works, thanks to my sister who will help me buy a car, and thanks to St. Vincent de Paul’s Society which sells inexpensive but reliable cars. However, this solution is still some weeks away, it seems. Meanwhile, I get the groceries by bus. The last time, carrying grocery bags up the hill from the bus stop wiped me and my daughter out so badly that even she who I repeat does not have ME was sick for two days afterwards and I went to bed that night in tears, the pain about as bad as it ever has been. I need to go grocery shopping again today and maybe the reason I'm writing this is to help me work up the nerve to phone and beg someone for a ride. I wait to make dental and mental appointments, and pray that the planned car-buying will happen soon enough to get me and my sick kid to our next appointments that can’t be put off.
So you see, it is simply impractical and the extreme of bad planning to be chronically ill, in poverty and carless in a rural area. I do hope all of you will take my advice and plan your lives—or the loss of the lives you knew—with better care.