I often say that the worst thing you can say to a disabled person is “oh I know how you feel” you don’t you see how we feel but you’re not us, but there is one person if there is anyone who comes close and that is the partner /wife/husband/lover of a disabled person but only close.
Here’s the thing though, we have no idea how they feel so I suppose the same rule goes for us when we speak to them. My Ella gets up at 5.30 am,she gets the apartment ready for my day, she puts my wheelchair together and puts it within my reach and goes to work on the subway it takes an hour each way. She is vice-president of a national magazine with a staff to control and a magazine to put out every eight weeks.
Ella works from 7.30 am to 6pm on ordinary days except publishing week it is always later, then an hour on the subway and she comes home. I have dinner ready but she feels the need to start her second job as spouse/caregiver to me. How much of it is needed and how much is her needing to feel like she is there for me? That is a topic we discuss often.
I get upset sometimes and yell “I can do it myself just kick off your shoes and sit” and I have made my kitchen a no go area, but in the early hours before she leaves I often glimpse a broom or a Swiffer or heard the clang of dishes and it hurts. On my bad days I feel like I own her exhaustion and I try everything to make her life easier, but she will always strip off her business suit and throw on sweats kiss me and run her house, to other disabled people does this sound familiar?
The dilemma is do we just let them? I like most of my community am pretty self-sufficient, and if I had to could live on my own but thank Buddha I have Ella and never could imagine life without her.
What is the balance? On my most lucid days I get it, her greatest fear is something will happen and she won’t be here, something that she can’t control.The question is, is it theirs to control? We are after all our own people? and is not the goal of every person who wakes up one day disabled by whatever means to get back to a standard of life that is an actual life, a real enjoyable life?
They never signed on to be old before their times and we never signed on to be the cause, ,whether we actually are or whether we’re just the catalyst for their neurosis about us and their need to be our care givers. This was never the dream we shared when we said “I DO” when the priest muttered that bit about “sickness and in health” we could never picture this. Do we let the ones we love exhaust themselves in the name of letting them think they’re the buffer we need between your disability and the world, or do we risk the emotional fall out by yelling ENOUGH?
When I have my worst “MIA” days as Ella calls them I think “look what I have done to her” then on other days I yell stop I am completely capable of doing that.
I long ago realized if I believe I am the only one living with a disability that goes through these dilemmas then my ego is the size of the Grand Canyon. We all are different (picturing the man in the crowd in in life of Brian mumbling “I’M NOT”) but the problem in all its forms with different players is the same.
Getting back your life after amputation or paraplegia or a stroke or the onset of MS or some other neurological disease has to mean more than wiping your own ass and dressing yourself, it has to mean managing the life you made with the person you love. There will be screaming, there will be tears, there will be looks of pain, but for there to be a future there has to be that talk that discussion where the only acceptable outcome is the words “I only need you to love me, I only need you to tell me I can do it, and I only need you to hold me when I can’t. A little dust won’t kill me and dishes in the sink never tripped my crutches or stopped my wheels but not having you there can stop me dead in my tracks.
Let the person who wakes up next to you every morning know that the smiles you get when they look at you across the room, that look in that moment across that room is the only nursing and tlc you need from them nothing more. Most of all make the main point in the discussion you have is how much you love them for wanting to do it all, but you’ll love them even more for letting you fail at trying to do it yourself.