We come to love not by finding a perfect person,but by learning to see an imperfect person perfectly.
– Sam Keen
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
I’d forgotten all about them, so when my husband plunked down dusty, dirty old boxes for me to go through, I inwardly groaned at more work. What I found caused me to turn off the TV, plop down on the floor, and get teary.
Some things are personal. It’s okay, healthy even, to keep private some things, especially from your partner. You disrespect all three of you by telling all, or worse: using an old relationship to make your partner angry or jealous. What passed between you and an old love is about as private as it gets and ought to be kept that way – unless it’s an STD in which case your partner knows something anyway.
Here’s why those almost 50-year old letters are meaningful to my marriage today.
That was then. Old love letters bookmark a time never to be recaptured. Memories are wrapped in words that are still breathtaking, kind of like a favorite old movie watched over and over again. That was long before kids and careers, mortgage payments and personal tragedies – all the water that’s gone under the bridge. Anyone who’s tried knows wishing doesn’t make it so. If you have the chance to go to a school reunion, take it. It’ll make you careful about what you wish for and maybe keep you from trading one used car for another.
20/20 Vision. How many times have we wished for hindsight? Knew then what we know now? Old love letters give you an opportunity to jump between realities; to see that your life has become far richer in experience than what it was then. You wouldn’t make the same decisions today because you’re more knowing and because you know more, too. Seeing clearly isn’t just about having new glasses; they only work when you wear them. Maybe the past gets romanticized because it was so free of all we see and know today. Most of what happened long ago was drama without impactful consequences; no wonder those were the best days of our lives.
An ego-boost. Those old love letters described things that, ahem, were personal. Very personal. After reading them, I’m likely to dial up some oldies, suck in what I can of my tummy, and turn my best side to the mirror. But, at 60 years old plus, I can’t see much of the hot-looking girl in the picture I hold. Those letters dialed back the scale, dialed back the clock, and let me be Cinderella waltzing a horizontal dance with someone who’s not the prince of my heart today. Part of what’s swoon-worthy are the words themselves – I can always be bought that way. That I was described so beautifully made me feel beautiful every time I read them. They still do.
Appreciation for today. My high school years were spent in Hawaii – a place imbued with the honeymoon-like magic of new love – during the powerful and poignant Age of Aquarius. Juxtaposed with rule bending and breaking was the rule-bound experience of Viet Nam. But my memories, all these 40+ years later, pumped as they were by the unique history of the late 60s, are no less vivid and meaningful as anyone else’s. Reminders of the past, like the letters I re-read, show me how much more I have to love now. And even how much better at it I am.
Didn’t Want Him, Anyway. Back then, love was pretty black and white; no mortgages, usually no kids, definitely no wisdom. Today’s love, mature love, knows that love can be fickle and to keep it requires attention and effort. If I’d gotten on a white horse (or in a VW van) and ridden off with my first love, the scenery would look nothing like it does now. I like the bourgeois creature comforts most aging hippies fell for, too. Honestly, while I would’ve made a few changes along this long, long way, starting over with the boy who wrote those heartbreakingly beautiful letters wouldn’t have been one of them.
Having moments of nostalgia and longing for the past are natural. Keeping those moments alive is part of the romantic, fanciful, non-threatening part in each of us. Humans are unique in the ability to fully remember the past. But know that bringing it forward, unaltered, never works.
I finished reading the notes the other night, then broke down the dusty box and put it in the recycle bin. The few I saved still whisper about what was and will get packed away until I again need to feel delicious. The touching wish left behind is about gifting the past’s richness to my marriage today.
Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Expert who shares with couples how to keep love alive and growing. She encourages them to write love letters. Kathe, and her husband, David, have been married nearing 30 years; their love is shared with cats Lucy and Petey, both of whom send messages in other ways. In that dusty box Kathe found the first card ever sent to her by David; odd she kept it since it wasn’t romantic at all.
A couple of weeks ago I introduced Rachelle Friedman to those of you who don’t know her. If you recall, she became wheelchair-bound due to a freak accident at her bachelorette party. I promised to tell you more…
Not to be cheesy, but Rachelle and her husband, Chris, are nothing short of inspiring. They never chose to be in the spotlight, but they are. Their lives together have a level of transparency they’d never planned, where privacy doesn’t look anything like it used to.
The very act of being married is a prime example.
He stayed with her? Actually married her? No shit! Uh, what about sex? They don’t “do it”, do they?
The answers are all “yes”.
Much is made of Chris’ staying with her. It’s not just that she had an accident, ended up in a wheelchair, and except for that everything else stayed the same. Rehab was long and painful. With paralysis, her body changed and she’s plagued by low blood pressure, which makes activity dicey. And even though she can’t move her legs, nerve pain still exists — something medication doesn’t completely take away. So why does Chris stay? “The extra hardships don’t outweigh his love,” Rachelle will tell you. It’s not that he “stayed with a girl in a chair that makes him great. It’s that he’s loving and giving no matter what.”
Rachelle doesn’t understand the fuss that’s made of her everyday life, either. “Just because I wake up in the morning, eat breakfast, work out every now and then and play sports with a disability…does not make me inspiring.”
One of the biggest changes has been in Rachelle’s career path, and the corresponding change in life plans because of it. She can no longer teach aerobics, nor can she be a reliable 9-5 employee. This young woman likes to inspire and also to educate. She is registered with a speaker’s bureau and has been doing some cool speaking gigs. If money was not a roadblock, wants to be a coach, helping other people. With the loss of that second income, the couple struggles financially.
You could call her the Queen of Lemonade, but I think there’s more to Rachelle than that. I’m sure there are moments… But she is blessed with talent, beauty, and drive, so Rachelle would be a winner no matter what. That she has a wheelchair in the way, well, that’s just a lotta lemons.
Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist 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.
Open mouth, insert foot. It’s the verbal version of walking through the restaurant with toilet paper on your shoe. We’ve all experienced the mortification of poor verbal choices. Sometimes, embarrassing stuff just happens. Letting those blunders happen more often than not, though, is a problem that goes beyond stuff that sometimes happens.
1. Slow Down: I’m reminded of reading only the first part of a test question only to have it turn out that the actual question was in the part I didn’t take time to read. Being impatient diminishes the amount of information you have at hand, which leads to uninformed or ill-informed comments. You haven’t demonstrated complete interest in someone else; you’ve taken over control of their speech. You’re seen as self-centered, rude, brainless and uncaring. Men report that women talk too much, citing that as the reason they don’t listen. Whatever the cause, look for the speaker to shut down and become disinterested in you as a conversation partner.
2. Pay Attention: It is nothing short of insulting when the listener doesn’t appear to be listening. The oops can be verbal or non-verbal: eyes looking elsewhere instead of making contact with the speaker; paying attention to your own task while saying you’re listening; saying something irrelevant to the conversation. Some of my worst oopses have come from replacing the speaker’s reality with my own. The result is that I’m left behind and the speaker knows it’s because I’ve broken a cardinal rule of good communication: I haven’t paid attention. I cringe every time I look at a picture taken at a business function where one of the guys I’m talking to is looking around the room, not at me. When that happens to you pay attention to how you feel; I guarantee you won’t do it to anyone else.
2. Stop Assuming: Unless your crystal-ball is in good working order, acknowledge you don’t know everything. Take in what your environment is really about; those who assume don’t. The result includes finishing other peoples” sentences, interrupting with comments that go in the wrong direction, misinterpreting what’s really being said. Women pull out their crystal balls when they complain that their partners don’t talk to them, or even listen in the first place. The assumption is that a partner’s thoughts, and especially feelings, are being purposely withheld. The result can lead to a rift that is about far more than what the topic of conversation was. Want a clue? Look for a surprised or confused look from the speaker.
3. When in Doubt: People are generally uncomfortable with dead air. If you doubt that’s true, pay attention to your comfort level when the radio or t.v. looses sound. In fact, there is no rule that says that the air must be filled with someone always saying something. For some of us, the tendency to chatter takes hold, resulting in poor or unconsidered statements. When in doubt, zip it.
4. Apologize Sincerely: There are times when everything you’ve done has turned out wrong. Your enthusiasm leads to interruptions, perhaps because of identifying so much with the speaker’s topic you take over. Other times your disinterest may show. Or you may fail to edit yourself: what comes up, comes out. There are so many examples, I’m sure everyone can think of a cringe-worthy moment. Whether or not you’re responsible, tune immediately into the speaker. Be truly sincere when you say how sorry you are you’ve caused confusion or distress. People generally react warmly to someone who really cares how they feel. Don’t make it long and drawn out and be light-hearted if you can. Whatever you do, don’t put blame out there somewhere. Accept responsibility and be sincere about it.
5. Know Yourself: I’m an inveterate talker because I’m so curious. I know, too, that when I get nervous I talk too much. Two thousand feet down in the Molly Kathleen gold mine, you couldn’t shut me up; the tour guide finally stopped acknowledging me at all and my husband pretended like he didn’t know me. When I tuned in to their non-verbal responses to me, I knew to be quiet.
Truth is that sometimes goofs happen. Part of what makes us endearing is having flaws and being vulnerable because of them. Pay attention to basic communication skills; you’ll benefit from not crossing the line into mean, and your oopses will be quickly forgiven.
Kathe Skinner is a Colorado Springs Relationship Coach with a sub-specialty working with couples whose relationship has been impacted by invisible disability. She herself has MS. Kathe and her husband, David, teach Couples Communication Classes along the Front Range of Colorado. Personal experience makes them believers that good communication skills are necessary for a successful relationship.
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”.