about you is like
trying to describe
how water tastes…
it’s just not possible.
For those of us who are disabled, invisibly so, preparing for weather that turns wintry follows a simple self-care rule: stay inside.
As multiple sclerosis has progressed in me, simple tasks loom large.
Accumulation of simple tasks makes negotiating my environment literally hazardous to my health.
And I’m not alone in what can happen:
Impaired mobility. “Give me something to hold onto, like a railing, or a walker,” I said confidently, “and I’m good to go.” This from a woman who managed the unbelievable – falling down and taking the shopping cart with her. Not just with her, on top of her. The same woman who stepped off a sidewalk and fell face-first on her rollator into Chicago traffic.
Adding ice, snow or both increases the danger, whether I want it to or not. Cold temperatures stiffen already-Frankenstein-like limbs, reduce feeling, and can even shut down body functions altogether. For me, any extreme of temperature, hot or cold, and I look and act like a zombie.
Impaired senses and abilities. When it’s cold, the body’s heat is centralized to protect the core. Extremities function poorly, if at all. Try counting change at the grocery store, or picking up something you dropped. Even bending over is dicey and can result in a tumble. Even worse? Getting up again.
People with breathing difficulties may struggle, even with little or no exertion. Arthritis sufferers are crippled all the more. And the head-injured’s thought processes slow. way. down.
Anything already stressed responds negatively to even more stress. Think of the knees of someone overweight: when chubby becomes obese, knees already weakened break down when more weight is added.
Of course not everyone will have such a dramatic response to arctic-like conditions, but some will. For me, balance and strength, ability to write, well-being and fatigue, mood, motor skills, bladder control, cognitive functions, like word finding, are some of what fall to unacceptable levels.
It’s just plain dangerous. A wheelchair-bound client of mine was hit by a bus when the driver’s vision was impaired by a snowstorm – he didn’t see her crossing in front of the vehicle. My massage therapist suffered brain damage when she hit the pavement after slipping on ice in the parking lot.
Our focus on independence may cost us, like the guy who refuses to leave when the flood waters rise. Thinking about who picks up the pieces doesn’t cross our minds.
Can you afford to get stranded for hours?
Can your heart or lungs hold up to strenuous efforts to free your car from a snow bank? What happens when your body’s attempts at staying warm mess with your blood sugar? Or the stress of the whole ordeal brings on pain and diarrhea?
I have a highly polished ability to ignore what I don’t like. I especially don’t like staying home on those arctic days when others are doing ordinary things, like going to work. This is true even though experience tells me how I’ll hurt my body, mind, and self-esteem by ignoring how the m.s. in me behaves in harsh conditions.
Instead, control what you can. Don’t know about you, but I already know what happens when I ignore what that is.
Kathe Skinner is a Marriage & Family Therapist and Relationship Coach working especially with the invisibly disabled. She looks for real-life adventures in Front Range Colorado where the environment’s sometimes restricted by weather extremes. Currently, she’s cleaning up her home office while groovin’ to the oldies. A pirate’s treasure is stacked on the floor; who knows what she’ll find in all that paperwork? Learn more about Kathe Skinner and the Couples Communication Workshops taught by Kathe & David at http://www.BeingHeardNow.com
©2014, Being Heard, LLC
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I don’t know when it became fashionable to identify pregnancy as an adventure à deux. It always seemed lopsided that pregnancy excluded men from throwing up, having swollen ankles and shrewish moods. I’m not even talking about all those forever changes like stretch marks, a bigger butt, and wider hips. With the possibility of gestational diabetes, postpartum depression, or miscarriage, the adventure becomes a challenge, albeit one that affects the relationship although it is physically experienced only by the woman.
Not to make it one-sided, men’s experiences are extraordinary, too, and may include being the target of a woman’s whacky moods or being the late-night junk food scrounger. For guys, it hits that the two of you are now a family, with all the attendant expectations to be the one who forevermore protects and provides.
Without a doubt there are many, many women for whom pregnancy is a delightful experience. The glowing, the growing, and giving life is an experience like no other. Pregnant women and moms belong to an exclusive club that has unbend-able membership rules. So even if it was the two of you being pregnant, only one of you, in the strictest sense, is a mom.
It’s the same when a woman is disabled or chronically ill. Only one of you is impaired even while both of you — your relationship — can be impaired. Having an invisible disability can be the worst of all.
Our society looks for proof; needs to name it; needs to touch it or otherwise experience its reality. You can’t be “a little bit pregnant”; you either are or you’re not. Pee on a stick and you prove it. With invisible disabilities, there’s no pee test. For some people, taking it on faith is harder than believing that what isn’t seen is true. For example, not being able to prove the existence of god doesn’t mean god doesn’t exist. Obviously, it’s the emotion surrounding belief that counts; to disbelieve or doubt a person’s physical or emotional perceptions is tantamount to discrediting someone’s very existence. The truth of it is immaterial, while the emotion surrounding such thoughts is what counts. The thoughts may even be rooted in jealousy of a sort – “What, so you get a break but I don’t?” “Buck up, you’re just being lazy.” “I worked all day but I still have to make dinner and do the laundry and get the kids to bed before I can sit down and catch my breath and where are you? in bed.”
Quantification when invisible disability is present requires a different yardstick but most of all it requires belief, support, and compassion.
Adding a stress load to any system that is already compromised results in a predictable, and usually disastrous, outcome (think of how a building with cracks in the foundation responds to an earthquake). The same thing happens when an already dysfunctional body system is unable to respond well when stressors are piled on. Such stressors may include walking through a mall or having relationship difficulties.
“We’re pregnant” or “we’re disabled” is an implicit bonding between partners. Life-changing events happen from which there is no return. Legal sanctions apply in both situations: the 20% of women, nationwide, who are disabled are entitled to lifetime support; children until they reach the age of majority. Society doesn’t seem to have recognized that the “we” of marriage with children and the “we” of disability in a relationship are the same thing.
To say “we’re disabled” says that both partners are in it together, that there is emotional and physical support of the partner who is less capacitated. Pregnancy usually involves the active participation of both partners while acquiring disability isn’t chosen by either partner. Parenthood never ends, just as disability does not; a major difference is in the expected trajectory – that parenting gets more pleasurable once the nest is empty, while disability often does the opposite. Disability is different in that there is no consent, no pre-planning, and certainly no enjoyment in acquiring the condition.
©Kathe Skinner, 2012
As a therapist with multiple sclerosis, and a Board member of the Invisible Disabilities Association, I can assure you that those with physical illnesses, esp hidden ones like cancer, ms, lupus, Crohn’s diseaes, fibromyalgia, anxiety, depression, etc., are not always treated with dignity. There are still people who will not hug someone with cancer for fear of “catching it”. An ms client was escorted from a grocery store after she fell into a display; the assumption was she was drunk, not that she fell because of balance problems. Read about my own experiences with people’s assumptions, misperceptions, and misunderstandings on my blog, ilikebeingsickanddisabled.com. and in my article for the government’s site, disability.gov, http://usodep.blogs.govdelivery.com/2012/07/25/looks-can-be-deceiving/. Mental health issues are as much a part of invisible disability as physical health issues are. Parsing them dilutes the effectiveness of advocacy. Without ignoring the special needs of any group under the umbrella of “disabiltiy”, it might, at some point, be worthwhile to give up the “me” in exchange for the “us”.