First published on Disability.gov
For 70 years she put up with his (sometimes volcanic) rumblings. He doted on her with diamonds, and was a poorer father for it.
The youngest of 5 much older siblings, she was babied into being passive and timid. He was a blustering bad boy who loved control; a lifelong natural at most things mechanical. He took seriously his duties as a man, a spouse, and head of the household. He didn’t brook anything that deviated from his definitions of right and wrong, a bigot in many ways. A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for . . . and he liked it that way.
Both were fortunate: for much of their lifetimes, neither was chronically ill or disabled. Unless you count legal blindness, which he didn’t (though most who drove with him did). And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.
Several years ago her macular degeneration began to impact both of them. By then, her hearing had deteriorated, too, and her world shrank. Although she rarely admitted fears (not to us, anyway) he expressed his the only way he knew how: he fixed as much as he could. He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm, and searched out gizmos and gadgets he found in catalogues. He took care of her.
Last year, George left Kate.
True to his role, George had organized everything, including who his wife’s legal caregiver was to be — my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn’t cry for hours each night. Not that she tells us, anyway. As her vision deteriorates Kate, not surprisingly, adapts. David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit. Immediate support comes from close friends and a kind and caring nursing home staff.
Today, it takes a dozen people to do what George did. Even so, he can never be replaced.
None of us could live well if we spent too much time dwelling on the eventuality of death. But some of us — the visibly or invisibly disabled or chronically ill — need to spend more time thinking about the profound changes a caregiver’s death brings. Like David’s parents, my husband and I are fused by years, experiences, commitment and love. Though I’m the one diagnosed with multiple sclerosis, in truth MS is something we both carry.
As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane . . . and likely. Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:
1. Plan now. The outcomes might look different, but the grief will be the same.
2. Get your house in order. You don’t have to be a survivalist in order to be prepared with legal, medical, financial, and personal concerns.
3. Create your own family. Gather together people who care, no matter what the will says.
4. Get outside each other. Get perspective from someone trustworthy and caring who’s outside the mix — minister, counselor, or therapist.
5. Express yourself and your needs clearly, often, and appropriately. Consider what to say and who you say it to. Sometimes being blunt can be hurtful; at other times necessary. Some people are better prepared to bring a casserole or help with housekeeping than to see you cry. Try out your voice to a journal, or pay a therapist or counselor . . . they can be skilled and trustworthy allies.
6. Keep in touch with others. It’s unfair (and shortsighted) to place the burden only in one place — like with your son.
7. Have someone to talk to, starting now. Clergy, therapist, physician, friend, partner, family can help you sort out what to say and how to say it. Think of yourself as a nuclear reactor. Keeping it to you guarantees one of two outcomes: shutting down or exploding.
8. Join a group of those experiencing what you are. There’s no substitute for having someone “get it”. Don’t believe me? Try talking to someone who doesn’t.
Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Specialist specializing working with couples, especially those for whom invisible disability is part of the mix. She has been diagnosed with multiple sclerosis for over 35 years. Kathe and her husband David hold Communication Workshops in Colorado Springs and are both Certified Instructors for Interpersonal Communication Systems. Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range. Find out more about Kathe and David at http://www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com.
© 2014, BeingHeard LLC
So when I head straight toward the bushes at the entrance to my building it isn’t surprising.
Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group. Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.
Instead, it freaked me out.
Big time downer.
Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.
I understand, now, the reason he laughed. Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.
The reality he must’ve experienced then is one I now share. Today I laugh, too. Because it’s truly comical at times and also because laughter is socially reassuring. “It’s alright, folks. I’m alright. Nothing to see here, move along.”
Knock wood, I’ve yet to experience anything dire in my navigational mistakes. Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that. I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all.
When I use an assistive device, a rollator in my case, parents scold their children for staring. I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away. No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.
Recently, Disability.gov blogged an article about steps to take when being newly disabled.
It’s worth a read, especially if you’re not.
Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist. She works especially those couples where invisible disability is present. For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs . Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard
What’s a hand doing in deep space?
And what’s it attached to?
Is God just a big hand?
Wait a minute. Is that a hand at all?
The so-called “Hand of God” is the result of a combination of NASA’s Nuclear Spectroscopic Telescope Array, or NuStar, combined with Chandra X-ray Observatory’s imaging. God (and Superman) only knows what that pulsaristic, X-ray, and magnetic energy stuff’s about.
That we humans jump quickly to proof of what we so desperately want proof of is telling.
When familiar objects are seen in otherwise vague ways, a phenomenon known as pareidolia is at work. Examples include seeing the face of Jesus in an apple core or your neighbor’s poodle in a cloud. When the need to believe is strong enough, we “see” what reinforces what we believe. Those who are especially adept at recognizing and interpreting such “signs” are attributed with magical abilities that enable them to understand the past, explain the present, and foresee the future. They’re called shamans, therapists, or witches, and every culture has them.
Anyone who holds the hand of God is powerful indeed.
Our fervency at making a disconnected connection can be seen everywhere in our lives, not just in questions about transcendence. When we’re always looking for signs, signs are always found. For some of us, magical thinking beats realism every time: I’m always a bit miffed when my husband can “explain scientifically” what tingles to believe. Like yeti or synchronicity.
A peek at the animal kingdom demonstrates how natural it is to go for glitzy — brightly colored and smiling is more alluring than earth-toned and frowning. If you still aren’t convinced, go to Vegas. Shake its pockets and the likely fallout will be all manner of charms, amulets and carved stones. If you’ve ever played anniversary or birth dates in the lotto, you’re exercising the same belief in magical power.
How powerful is it to “know”?
People have been hung or burned alive for failing to share explanations we want, figure they have, but would rather die than tell. Curiously, we never fault our dysfunctional thinking when plague continues after we’ve roasted all the cats.
Distressed couples or the chronically ill may get caught up in the myths of “other reasons”, blaming themselves or those around them for what is ultimately ours to carry, even when understanding is absent. Better communication in marriage or the development of chronic illness are examples.
Nevertheless, many of us feel helpless when comprehension fails. So far-reaching is our need to know that we look outside ourselves for a “magic cure”, “quick fix”, or to blame. It’s as if we were cognitively incapable of apprehending knowledge by ourselves, alone.
Facing the Great Unknown is frightening.
We call for help that protects, soothes, and explains.
And that’s as good a reason as any to search out the Hand of God.Kathe Skinner is a Marriage and Family Therapist and Certified Relationship Specialist. She’s especially keen on working with couples whose relationship includes invisible disability (e.g., cancer, lupus, hearing loss, depression). Kathe and her husband, David, live in Colorado with their two cats, Petey and Lucy. They know that holding the hand of god is as easy as adopting a pet. ©BeingHeard LLC, 2014
The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.
A San Francisco cable car holds 60 people. This blog was viewed about 3,500 times in 2013. If it were a cable car, it would take about 58 trips to carry that many people.
There’s still a long way to go in making people aware of invisible disabilities. And that so many of us experience them.
Of course, ILIKEBEINGSICKANDDISABLED is about much more than invisible disability. That’s as it should be because our lives are so much more than how we feel or what chronicity label we carry.
If you read my blog because of my sly humor or because something has touched you , made you laugh or think or angry, I’m happy for that. I challenge you to share with someone you know who might appreciate something I’ve said. Oh…and please let me know what you think about something I think.
Thank you, readers, for putting on a smile on the face of the last day of 2013.
Kathe Skinner is a Marriage & Family Therapist and Relationship Coach in private practice. Diagnosed with multiple sclerosis for over 35 years she’s like many who experience invisible illness — most of what happens in her life is not directly attributable to being disabled. With her long-suffering husband (that doesn’t have anything to do with illness, either), they’ve been married almost 28 years, sharing their Colorado home with two resourceful hooligan cats, Petey and Lucy. Read more about the Skinners at http://www.beingheardnow.com
© 2013 Being Heard, LLC
Even if the claims that candy causes behavioral problems are anecdotal, one thing is for sure:
An American diet full of sugar is a significant cause of childhood obesity.
But it tastes so darned good.
The Centers for Disease Control report that 1 in 6 children between the ages of 2 and 19 is obese. Aside from the psychosocial aspects of being bullied or having no date for the 8th grade dance, there are significant health risks.
Like asthma, high cholesterol, high blood sugar, cardiovascular disease, Type 2 diabetes, and, as researcher Ashleigh May says, mental health problems.
Sugar induces tolerance, meaning the more you eat the more you need to feel satisfied. What’s recommended for children’s sugar intake is a mere 6-9 teaspoons a day while what’s consumed is at least 4 times that, Halloween candy not included.
At some point, people can make choices about how their lives unfold; whether or not choices are made is harder to pull off than it is to suggest.
Most of us who are disabled, invisibly or not, wouldn’t choose disability to be part of our lives. How horrifying is it that some obese people have that option and choose otherwise.
Although she was a chunk-of-a-baby, Kathe Skinner didn’t grow up that way. A Marriage & Family Therapist and Certified Relationship Coach, Kathe specializes in working with couples, especially those when invisible disability is part of the relationship mix. She and husband David reside in Colorado with their two cats, Petey and Lucy. Lucy and David could stand to pass on a second helping of kibbles.
Doing work you’re passionate about has been the imperative for years now.
This, despite the contined high unemployment rate, a rate that doesn’t even reflect people who gave up trying to find work years ago. Ironically, they’re called the “invisible unemployed” and there’s about 86 million of them. Like the “invisibly disabled”, both are a large part of our society where the “invisible” part suggests monkeys with hands over their eyes.
That we’re supposed to be finding passion through work might explain why the U.S. birth rate in 2012 declined for the 5th year in a row.
If you’re tired, though, or queasy, or breathing with difficulty, passion may be easier to define than it might be to find. Passion may be found in small measures. It’s simple: sleep, a settled body, breath.
Being invisibly unemployed or invisibly disabled are both shameful ways of being. Many in the mainstream believe there’s nothing wrong that getting off their collective lazy asses wouldn’t fix. That’s a pretty big butt.
Being marginalized for any reason wreaks havoc with the central core of us and not surprisingly with relationship – marital, friend network, family.
For the people marginalized in this way, hunting down passion is a luxury. Suggesting there’s a choice about it is lofty, naive, and exclusionary.
Invisible or not, it’s a mental health responsibility for each of us to somewhere find joy, pleasure, peace, passion or whatever you want to call it. To take charge of being part of humanity; to assert to yourself your right to be. That might or might not be through volunteer or paid employment, marriage or relationship, or the family/friend network.
Kathe Skinner is married to one of the “invisible unemployed”; she herself is (sometimes) “invisbly disabled” by multiple sclerosis. She’s a Marriage & Family Therapist and Relationship Coach on Colorado’s Front Range. More about the two of them at http://www.BeingHeardNow.com.
I tell myself that if life wasn’t so full and whirling I’d be more of a participant instead of bystanding But getting in “the flow” isn’t singular and it isn’t the same for each of us. While I suspect that lots of us get caught in a fast flow, I don’t know how many of us feel overwhelmed by it. Nor do I know how many of us realize how many different “flows” are there for us.
For me, with the cognitive sequelae of multiple sclerosis (and for other people whose chronic illness or hidden disability does the same to them — chemo brain comes to mind) what I remember and what I miss, is the ability to click it out, project after project, day after day, for years. I stayed on top of things, moved and shook my world. And I felt I created my world, all I was really doing was joining someone else’s flow. Nevertheless, by America’s professional and monetary standards I counted myself a success.
Today, I fail to take into account how much life has changed in the years since I moved and shook my world. Looking back, technology hasn’t been my friend. Today I’m outsmarted by phones and made (too) aware of bad hair days because of someone’s visual access to me. Moreover, being lost in the internet is akin to being down the rabbit hole, where time is immaterial or at least irrespective of my reality.
Like a merry-go-round that some bigger kid has pushes faster and faster, I’m dizzy from the motion and tired from hanging on so tight.
Not meaning to be dramatic or negative, let me be both: if I was somebody else biting into the pickle I’m in, I’d spit it out.
So what does this have to do with being intentional? Simple. We don’t have to stuff the whole pickle into our mouths at once. Nor do we have to eat the whole thing. Part of the lack of intentionality is being black or white, all or nothing, impulsive. Choice is instinctively exercised by most (all?) organisms as a way of preservation. That my cat won’t approach the blow-dryer unless she first makes sure it’s dead and can’t hurt her is demonstration of intentionality. How odd, then, that multiple times a day the hair dryer beats up the most evolved organism on the planet.
Turning on the computer doesn’t mean I’ll sit in front of it for 12 hours; I make that choice. Choosing how to live those quickening days needs to be as intentional as that. Thought-full, not automatic. Damnable that choosing to get out of the fast flow is so difficult to do.
Ultimately, that final final choice isn’t one we’re allowed to make.
Kathe Skinner is a Relationship Coach, Certified Relationship Specialist whose professional strength is working with couples affected by hidden, or invisible, disability in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd. Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability. She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom. She has been diagnosed with multiple sclerosis for over 30 years. More about Kathe at www.BeingHeardNow.com.Kathe Skinner is a Marriage & Family therapist, and Relationship Coach. Suddenly, she finds herself in the midst of a confluence of “flows”
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”.