The Real Estate of MS
We all know that MS only affects the brain, spinal cord, and optic nerves. By ‘only’ I mean that the brain itself comprises two percent of the entire human body, and that the whole of the central nervous system occupies a rather small corner of our entire anatomical real estate. But why point out such a pointless assertion? The physical space of our CNS is irrelevant since its function dominates every movement, sensation, thought, and emotion. And yet it is important to talk about the space we take up. After all, a lot of our discussions on MS forums are about real estate—the ‘real’ in real estate, the measurable, cubic feet kind of space we take up, what our boundaries are, how they are violated, and heck, how much space are we entitled to anyway?
Looking for a home
It’s a question people have been asking all the way back to antiquity. Much of the Old Testament chronicles the raw deal Hebrews kept getting handed over and over again, being driven out of every land they occupied, destined to wander the desert looking for a home they could truly call their own. But we don’t have to go back that far to reference some interesting thoughts about human real estate. We can look to Leo Tolstoy and V. S. Naipaul for some interesting stuff about the real estate one human being truly needs. (Spoiler alert: Poverty and racism serve the story just as well as disability.)
In an 1886 short story written by Leo Tolstoy titled: “How Much Land Does a Man Need?” a peasant driven by a compulsion to win as much land as possible in a challenge by walking the perimeter of a parcel of land back to his starting point by sundown. In a panic that he is still far from his starting point as the sun starts dipping lower in the sky, he runs back to his beginning place and completes the competition in time to win the many acres in the challenge. But the physical effort proves too much for him and he dies soon after. His servant buries him in six feet of earth, thereby ironically answering the question the title proposes.
In a 1961 novel written by V. S. Naipaul titled: A HOUSE FOR MR. BISWAS, the author starts by repudiating Tolstoy’s punchline that six feet of earth is all a man really needs. He follows a poor Trinidadian named Mr Biswas, who has finally found a house of his own at novel’s beginning, and who muses as he looks back on his life:
How terrible it would have been, he thinks, to have failed in this quest [to own his own house], “to have lived without even attempting to lay claim to one’s portion of the earth; to have lived and died as one had been born, unnecessary and unaccommodated.”
Don’t we, as poor disabled people, yearn for as much? Although we have more than a 19th century Russian peasant or a 20th century poor Trinidadian, we in the 21st century are booted out of our mainstream jobs by callous, tone-deaf business practices, feel suffocated by hi-tech MRI tubes, physically violated by punctures, infusions, blood draws, genital exams and surgeries, not to mention the invasive bureaucracy of paperwork, endless reams of financial evidence of our poverty that would even bring out the flop sweat on Chekhov’s brow. The indignities of 21st century progress have taken the biggest toll on the poorest and sickest among us, just as the agrarian and industrial revolution societies of the past three centuries cast harshly the roles of the haves and have-nots. Some things, as they say, never change.
Carving out your own space
Our anatomical real estate and our home space are things still worth fighting for, and fight we do. I’m of the lower economic part of my generation that couldn’t have what my parents had: the ability to buy my own home and maintain it. Like V. S. Naipaul’s Mr Biswas, it’s been my lifelong dream to have my own little property, but I’ve spent my adult life living in other people’s houses: those of my parents, both ex-husbands, a couple of rentals, and now an apartment owned by the State of Michigan Dept. of Agriculture and Rural Development. And yet there is a bright note in this struggle of mine.
At long last, I’ve answered Tolstoy’s question for my own life. How much land does a person need? I need 700 square feet of living space in a private, quiet senior community, a 10 x 10 patio with a 6 x 25 ft garden, a back patio view of grass, trees, and wildlife. I’m renting it, but it’s all mine to do with what I wish as long as I can afford to pay for it. I’m happier than I’ve ever been. Since I live alone, that 700 sq ft of apartment space feels cavernous yet manageable. I’ll never choose to share my living space with anyone ever again. Now that I’ve filled every nook with my presence, every cranny with my voice, my clothes, my cooking spices and my plastic bags, I’ll give it up for no one.
I know that someday I’ll lose this. The day I lose my ability to take care of myself is the day my garden hose will be donated to one of my more able-bodied neighbors. But they’ll have to pry it out of my cold, gnarled hands first.
I have the hardest time with my MS during the following season: