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
If nothing else, after 50 years fighting poverty, one thing’s clear: America hasn’t found the right WMD.
Poverty’s still the winner.
Among the most ill-advised social programs developed to counteract the effects of single parenthood on women is one that promoted marriage as an effective weapon. While it’s true that a healthy, stable marriage between two committed people helps in the battle against hopelessness and helplessness, there may be a population not committed to marriage in the first place.
Whoever conceptualized that encouraging the chronically ill-prepared to otherwise marry was delusional at best; a bureaucratic butt-kisser at worst.
What were they thinking?
Not in doubt is that solid relationships can be beacons, gateways to education, employment, mental and physical health. The kicker is that such relationships can’t just be imagined, wished for, or expected without knowing how solid relationship works and passing it on, for at least 5 generations that adopt healthy marital functioning.
Marriage, itself, is a complicated construct that, in the hard sense, pre-exists poverty. Lack of knowledge is a set-up to failure to anything (imagine wiring a house without knowledge of electricity), especially regarding something as profoundly complicated as building a better relationship. Put bluntly, how can anyone expect that partners raised in dysfunctional families would, by dint only of wanting to, create a functional one? That marriage is imbued with such magical powers that, by its very existence, an intricate human condition is untangled? Or that the people who inhabit those relationships remain, generation after generation, committed to their marriages?
Welcome to the Magic Kingdom.
Children learn what they see. Further, children seek more than anything to belong and to be loved. When the cost of having that is withstanding an environment that is counter to family/relationship health — e.g. abusive, withdrawing, uncommitted, adulterous, enabling, permissive, angry, addicted or violent – children often choose unhealthy over healthy. Immature brains learn that this is what marriage and family looks like. Even people who strongly react against their upbringing stand the risk of riding the pendulum to the other extreme, becoming overly compliant, accommodating, permissive, rigid, pious, rule-bound.
The knottiness of relationship is that each of us brings a perspective on these experiences that are often different from our partner’s. Often explosive, this confluence paves the way for increasingly unhealthy negative behaviors for each partner as well as the relationship.
Marital success is promoted when partners participate in learning relationship skills. Partial participation, which seems the rule, doesn’t count; it’s like being “sort of” dead. Besides, when a parent is struggling to provide the basics of life, little, if any, focus is given to the hard work needed to sustain a healthy union during formal couples education, let alone past its end.
Abraham Maslow put it elegantly when describing what needs to be in place before someone can even minimally “become”. The condition of being poor, pregnant and female plays out on a stage of basic needs where relationship improvement is trumped by paying the rent. In the same way, one wonders if self-esteem can be extrinsically motivated in generations raised dysfunctionally.
Poverty in America is generations-old; institutionalized; a mind-set. It would stand to reason that any upward movement on the psychosocioeconomic ladder would also be a lengthy process. A multidimensional process. And a difficult one. As we see development of the New Poor, Americans’ marital behavior will be interesting to track. Will there be a relinquishment of the values that inspire healthy relationship? Will difficulty bind people closer together? And what will happen to the trillions of dollars spent on social welfare programs that, fifty years out, have been unsuccessful in eliminating poverty?
That social success in other countries is not surprising given the unique social structure and size of the United States. While a nation as small as Finland, for example, may be socialistic success in reducing the strife of single parenthood, Finland is not the United States. Not in vastness of size, diversity, political structure, and multiculturalism. Even in the best of situations, marriage is no less multidimensional or difficult; with behavioral and attitudinal improvement also measured in generations.
While I offer no resolution to the multiple dimensions encompassing poverty (my magic wand is broken) better minds than mine have tried and failed.
I do know that a uni-dimensional solution to single mothers’ poverty through marriage insults the problem and ignores the complexity of the fix itself.
For more insights, read Julie Baumgardner’s response to the Council on Contemporary Marriages position on this subject. Ms. Baumgardner is the Chair of the National Association for Relationship and Marriage Education.Kathe Skinner is a Marriage & Family Therapist in private practice in Colorado. Over almost two decades, she has seen low percentages of middle-class couples who have engaged in relationship education continue to apply what they learn. She calls the ones who have, like Adam and Leslie, “Super Stars” and their existence is cause for a smile every day. For almost 30 years, Kathe and her husband, David, have been committed to each other and to their marriage. As Jethro Tull once said, nothing is easy. Read more about their programs for couples at http://www.BeingHeardNow.com. ©2014, Being Heard, LLC
Speaking from a disabled woman’s point of view, living the “lib lie” in relationship simply doesn’t work.
The “lib lie” I’m talking about is putting career before relationship, being damned if I’ll make cacciatore, or being complimented for how I look.
Where was my head all these years. I’ll tell you where: in the conference room, the kitchen, and in front of the mirror.
Truth be told, I like making cacciatore — and being appreciated for it. The same as anybody would, including guys. Liberation doesn’t stop at individual freedom; its true worth is in how liberated our partnership is. Oh, stop — I’m not talking about three ways. See, if one partner realizes cultural or family baggage enough to detach a bit from it and the other partner is clueless, the relationship’s pretty lopsided. But hey, some partners like their partners a tad underdone.
Clueless for real or clueless pretended, either path leads right back to a problem that’s repeated itself for generations.
Sherod Miller, co-founder of Interpersonal Communication Programs, defines a healthy relationship as the collaboration of two strong people “bridging” to each other across a committed lifetime. Paula Derrow, writing in The New York TImes, calls it “leaning in together”. Writing recently about her marriage in The New York Times, Paula describes a marriage right out of Home Depot.
A do-it-yourselfer, her marriage to another do-it-yourselfer spanned two states. Their finances were separate, and so was ownership of their separate homes. Except for weekends, each lived a separate life.
Talk about distancing.
When Paula was laid off from her job as a writer, she had reason to need her husband in very real ways, one assumes for the first time. Lying awake, the writer struggled with questions about her independence, whether she could afford to continue living separately, and whether her husband was encouraging and supportive only as a way to get her to come live with him and cook up a cacciatore.
I won’t say where Paula Derrow’s head was, but to come to the realization that her marriage was about the two of them together, not separately, is, to put it charitably, wrong-thinking.
More than most, those of us with disabilities, invisible or not, have had to come to terms with the lie that we can make it on our own.
The poor state of the world economy has left millions out of work, stressing personal worth and identity. With so many jobless, you’d think social perception about being unemployed would’ve changed; it hasn’t. Role expectations die hard.
Changes in the social order are happening all around us; role-turbulence is no longer reserved for the disabled or marginalized others.
These days, anyone can become marginalized.
Relationship’s great test is how to be together without losing oneself; how to get from one place to another while travelling together.
Kathe Skinner is a Marriage & Family Therapist and Relationship Coach specializing in work with couples whose relationship is affected by invisible disability. Like most of her generation, she has been powerfully affected by the Women’s Movement of the 1960s and 1970s and has had trouble integrating that independence with the sometimes-limitations of multiple sclerosis. She and her husband David live in Colorado where they teach couples to collobate their way to happier relationships. Read more about she and David’s Communication Workshops at http://www.BeingHeardNow.com.
In the modern age, long past the time Aesop and Burl Ives were telling stories, hybrids thrived.
One such unlikely combination was the grasshopper and the ant.
Now, you would think that being such behavioral opposites their paths would never cross.
You’d be wrong.
Somewhere in the reeds and weeds all the bugs were doing their thing. Beetles rolled balls of doo-doo around in circles. Bees started happy hour before five o’clock while cockroaches didn’t look anyone in the eye.
Ants, on the other hand, saw none of this, nor did they care. Their journey was always the same: back and forth back and forth from here to there here to there without looking left or right the whole time.
“Don’t wait it’ll be too late don’t wait it’ll be too late,” That was the mantra of the ant.
A world away – in bug terms, actually only a few yards – a grasshopper did grasshopper things. A traditional dance danced to a traditional song. A game of Reverse Limbo. Hopping and leaping hopping and leaping getting the rep of not being in one place too long. A grasshopper’s boots were never parked under anyone’s bed.
“La la la la la la live for today.” That was the grasshopper’s mantra.
Now, I know a lot, I’m very smart and awfully tuned-in, but, to be honest, I don’t know how the two of them – being so different and all – got together.
But they did.
No longer was it this way or that way right or wrong yes or no. The grasshopper and ant created an us where before there was only a yours or mine. No longer just different bugs, the grasshopper and ant created more:
A view looking down plus a view looking around;
Purpose and play all in one day;
In turns open-minded and single-minded;
Rewards from busy and the permission of intimate;
All that, plus leaving room for each to do their own thing.
Here it is, the end of my story. I thought long and hard about the best way to finish it.
The truth is that the end is the beginning as much as a beginning is an end in itself. It’s truly true that an ant by itself and a grasshopper alone is never as juicy as the two together.
Two together is the only way to live happily ever after.
The End (The Beginning, as well.)