My Life Lost?
One thing that still dismays me into silence, even at this vast distance from my youth – I’m now 58 – is how lost my life would have been, if I had attempted to follow the dismally low expectations of those who, seemingly concerned about my big choices, gave me the benefit of their insights and wisdom. Children and youngsters really do try very hard to be obedient. But what would have happened to me if, despite my utter passivity and willingness to please, I hadn’t also been as stubborn as an ox? Perhaps passivity and stubborn-ness are two sides of the same coin…

This dilemma, about what kind of life people with disabilities can look forward to, has many faces. On one hand, in navigating those choices that define our lives, we face a deluge of opinions, ranging from informed and well-meaning insights, all the way along the dusty spectrum of views to downright hostile, ignorant and simply false notions about what we can do. Some people, obviously ignorant or blatantly stupid (“I thought all people with CP were, you know, mentally retarded?!”) are easy to dismiss; others, such as parents who speak in soft voices and suggest a route that leads no-where (“Why would you want to get married?”) are less easy to ignore.
Despite this deluge of advice, so often we tread a line or path alone, all too aware of the risks but blind to the dangers that may be lying in wait. Growing and transitioning is all about learning to decide for ourselves, though perhaps able-bodied adults can take their choices more in their stride. While I stumbled uncertainly around my next steps, others may have offered frowning, careless, or trenchantly expressed opinions; they may have said they were scared for me, or unsure how I would manage – school, university, getting married, having a child – but while I tried to reassure them, I don’t remember these occasions being met with heart-to-hearts, honest conversations or gentle enlightenment. Having no confidence to ask for, or seek out kindness (though I was thrown several very welcome life buoys by my friends) too often, I fell back on wordless stubborn-ness to take me past the thorns of uncertainty, to fix on an option and do my best to follow through.
So much of what I heard, and tried to reconcile myself to, was misinformed, it is little short of miraculous that I am here today. My heart overflows with gratitude to have arrived. Sometimes, my stubbornness has been my best friend.
Thanks for reading
Please share:
March 9, 2023 @ 1:40 pm
Thank goodness for your stubborness but do you not think it must be linked to your obvious intelligence and self knowledge. You knew deep down that you could do the stuff that others worried about. To deal with physical problems is bad enough but to have to deal with all the well meaning and not so well meaning mental interference is totally unfair. I admire you beyond telling. I bet you even know where to put commas don’t you!?
March 9, 2023 @ 2:02 pm
Hahaha! Diane, what a laugh, thank you. I know when to use ‘its’ without a comma, though it has not always been easy to remember.
There is a central dilemma here that I have only touched on: Sometimes we need the benefit of good and brave counsel, and we all need to learn the differences among shades of good and bad advice… That is an essential life skill, though we are so busy trying to reconcile the irreconcilable: How do I listen politely to someone whom I know is talking nonsense, because it would be rude not to? And how do I learn to listen without being offended? When is advice to be taken, or let go?
These are things that children learn, but getting through the layers of prejudice and well-meaning intereference adds several layers to a tricky process. I’m only glad that I have managed to achieve most of the things I set out to do, and that most of my decisions, thus far, look to be on target. Fingers crossed! More than that, we cannot ask for.
Bless you! 😀
March 10, 2023 @ 10:31 pm
I still remember how impressed I was when I read Trapped. You were never (maybe not absolutely never) one to let others tell you why you should or shouldn’t take this path or that. Your clear, realistic description of your own decision making reminded me of my years in AlAnon — a free, open organization for people needing to (in my words) “grow up” into adulthood with a way of working through difficult realities and choices. In my case, it was Very Hard to go against what my parents thought I should be doing or not doing, as well as my colleagues During this 5-year adventure, I was teaching at the seminary. My collogues and some of my students thought they knew best what I should do and how I should behave.
I’ll never know what your life has been like (from the inside out). I’m grateful for your willingness to write and talk about it. We humans who think we’re nearly (or 100%) perfect in our bodies and our spirits and our choices, etc., don’t have a clue how difficult it must be for persons without our “perfect” bodies and minds. I’m reminded of my mother (polio at age 28) and one of my younger sisters (polio at 5 months, and ALS in her 40s and 50s). They had to make tough decisions every day of their lives. Often they had to go against what others (like my father!) thought they should or shouldn’t be doing. I still remember one of your earlier posts–you were being interviewed for, as I recall, access to help for people with “issues” such as your own. But the approach was backwards–as though we could already know what you or others should or shouldn’t be doing or receiving as help from the government. The wife of my favorite boss (Dean of the Harvard Law School) was a workhorse. She was also a polio survivor, unable to get around without her wheelchair. She lobbied hard for clearly marked pavement and traffic lights that would allow anyone with difficulties walking to make it safely across the street! She was fierce, determined, and astute. Somehow you remind me of her, though she died many years ago.
Oh…I do wish we lived close to each other. I value your friendship and the wisdom of your own life. Thanks for sharing more of it in this post.
Elouise 🙂
March 11, 2023 @ 12:44 pm
Dear Elouise,
Thank you so much for your comments and thoughts – so much appreciated! 😀
After I had written this blog and posted it, I wondered what you would think; having read your story over many years, it occurred to me that you have faced many similar issues with opinions trenchantly expressed and views imposed where they were unwelcome and did not fit you. I hope you are consoled that I am aware, at least as an observer, of some of the constraits you were under: living under them must have been hell, from the inside looking out.
It seems to have been the view of the age we grew up in, that discipline, “not getting to big for our boots” and obedience were the order of the day, and that the prime task of a parent was to ensure that no child became spoilt or indulged. Punishment was all the rage, when now we recognise more often that gentleness is the best way to teach any kind of lessons. I often suppose that the strict parents must have been fairly joyless creatures. And yet, being open and loving and humour-filled is so much easier, and so much more enjoyable, of course.
I’m very glad that things are changing.
We do live close to each other. I think of you often. Bless you!
Fran xx
March 18, 2023 @ 7:25 am
Fran, you have my unstinting admiration for forging your own path against all the ‘good’ advice people were so willing to give you. Having read Trapped (it still sits on my bedside table as I know I’ll read it again), I know a little of what you went through and thank the heavens you were so ‘stubborn’ and determined. You are an example to even those without disabilities. Thank you for being you!
March 20, 2023 @ 9:01 am
Dearest Valerie,
Thank you for your lovely comments – so much appreciated! I find that the best way to look at a difficult experience is from the POV of recovery and gratitude. Thank Heavens I am here now, and freed to do more of what I choose. Not all the time, for sure, but much more of the time. Thank you for being you, too! I appreciate reading of your well-travelled life: You show me what is possible with a bit of hope and a lot of (good) hard work. Bless you! 😀