I had a happy, rather uneventful childhood all in all. I lived with my parents, my maternal grandmother and my older brother. We lived in the Bronx and then Queens, both of which are part of New York City, but nothing at all like “the city”.
I met Steven when I was 15. He broke my heart at 16 and then asked me to marry him when I was 20. I went from college to marriage to motherhood in fairly short order.
We disliked living in Queens and thought we’d never make enough money to be able to live in “the city”, so seeking a better future we moved to the Maryland suburbs of DC. The move opened a new door for us. We were really happy those first few years but then Steven was diagnosed with Multiple Sclerosis (MS), a disabling nerve disease that still has no cure. Those two letters changed everything and set us on a life path we never could have imagined.
Except for occasionally missing a beat when walking, or going up stairs, Steven’s MS was invisible. Everything seemed normal, but nothing was. Our sensitivities were so heightened that the simplest question, “How was your day?” took on a new significance. The response, “it was tiring,” conjured up an invalid’s lifestyle. I was apprehensive, unsure of what might happen from day to day, unsure of being too solicitous or of not showing enough concern. Steven’s health became a major topic of conversation. It consumed our attention and stifled me, but I couldn’t admit it. I couldn’t say, “Let’s not talk about how you feel all of the time. Let’s try and live as normal a life as possible.”
Steven, never one to share much about his inner feelings, shared even less then. I didn’t know whether he felt the same about the turn our conversations had taken. I didn’t know what he needed to quiet his personal fear of the unknown.
I later learned neither did he. We were hurting very badly, grieving the loss of what we thought life should and would be like. Neither one of us had any immediate answers. We were both just trying, in our different ways, to survive emotionally.
Steven has the slow continually degenerating variety of MS, technically called primary progressive. It is the least common of the three types. Like a leaky faucet that only attracts attention after water starts to visibly collect in the basin, primary progressive MS drips into your life. By 1979, five years after his diagnosis, Steven’s basin was filling up. His gait was uneven, his balance a bit off. Two years later he started to use a cane. Toward the end of 1982 he got a pair of crutches, the kind with arm supports for more stability.
About ten years after he was diagnosed, we bought a motorized scooter to help Steven get around at work, in shopping malls and other places where lots of walking was required. The scooter was a great relief to me. I no longer had to watch him struggle to walk a block. I no longer had to worry if he was going to fall and break his neck. The scooter gave us back some long lost freedom. It made it easier to go places – as long as they were accessible. On the other hand the scooter was a reminder that the MS was here to stay, the unwanted, but permanent lodger in our home.
Fast forward to now, Steven uses a motorized wheelchair and has hardly any use of his hands. He needs total physical care, but his mind is still very sharp, his humor ascerbic and his attitude very good (most of the time).
To find out how cooking helps me cope with our “permanent lodger” see Musings: When I Cook