Category: Uncategorized

Chronic Illness and the Family


It may be the idealized image of television shows, or perfect, ever-present pictures in advertising in newspapers and magazines, or just the plan hopefulness with which we all start our families. But most of us don’t plan to include chronic, life-long health problems in our family plan.

Our bodies are quite amazing creations, able to fight off disease, recover from injury, grow, age and change every day. We aren’t minds that have bodies attached, but we are instead bodies that think. We must eat, move, think, rest, work and love with our physical selves in mind. And for the most part, this natural rhythm of self-care makes life work.

But life isn’t smooth, and our physical systems aren’t perfect. Some of us will encounter injury, disease or disability that does not respond to time and care. For many of us, that process comes quite late in life, after the children are grown and gone, and our work life blessedly finished. But for others, this physical change comes much earlier, as a child, or teen, a young or middle adult. And suddenly life is different.


Chronic illness. It’s a disease, like diabetes, that robs the body of its natural resources and requires hourly attention to diet, activity and insulin. It’s asthma that can be quiet for days and weeks and suddenly constrict airways. Spina bifida, cerebral palsy, brain disorders, arthritis, paralysis, cancer, and blindness: the list of disorders, diseases or injuries that can change our lives is seemingly endless. None comes with our permission. But once it comes, if we want to keep our families and marriages healthy, happy, and productive, we must figure out how best to cope.

While those who live with chronic illness in themselves or close loved one have to create their own way to manage, there are some common factors when people find themselves faced with permanent life challenges. Perhaps one or more of these resources may fit you and your family now or in the future.

  1. Support. Being suddenly faced with disease or disability can be an enormously isolating experience; we feel overwhelmingly alone in our loss. Reaching out to others who have been there before us is a great relief to many. Local, in-person support groups or electronic on-line discussion groups are a wonderful way to break that isolation, find help, advice, and new friends who can walk the new journey with you.
  2. Education. Many of us have found the Internet and it’s endless resources both wonderful and awful: some of what we find is inaccurate and it’s hard to sort out which information is true or not. Finding the most authoritative sources of information about our condition is important and life giving. Medical libraries on-line, medical professionals, and research foundations may be the best places to start when researching a disease.
  3. Insurance companies. Believe it or not, most health insurance companies want to help you manage your disease so that you maintain or improve your symptoms. Many diseases have been shortened, improved or cured by the research done in clinical trials. Ask your physician if you qualify for research studies, and then be in touch with your insurance provider. You may find, as I have, that your insurance will cover an important, life-giving clinical study.
  4. Mental health care. As a psychotherapist who has been a therapy patient herself, I know how critical mental health care is to living with disease and chronic pain or disability. Reach out for mental and emotional support before you feel overwhelmed, and find a private, confidential healing place to think about your feelings, behaviors, relationships, and changed body. Internet directories like GoodTherapy.org are great places to search for quality therapists in your area.
  5. Spirituality. Nothing is more important to the long-term adjustment to change and disability than working within one’s sense of faith, belief, ritual and higher power. Faith and spirit can help one recreate a sense of purpose, meaning, self-care, self-acceptance, love and forgiveness in the midst of loss and change. When we can feel connected to a Being or community that loves us in the midst of our personal storms, we can experience a safe harbor for our hearts and minds.

Even with some or all of these important resources, living with chronic disease is a difficult and exhausting journey. Be sure you make time and space in your life for love, laughter, and joy, the things that hold families together. Despite the challenges, you may find life really worth living, together.

The Modern Novel: Why bother?

I spend a good amount of my free time reading novels. It’s a past time that is more like a personal compulsion; this form of storytelling has grabbed me ’round my neck since I started devouring The Bobbsey Twins. This need to read turned me into a collector of books, a lover of dictionaries, an English major in college. I care about this art form. A lot.

So if you are a reader, too, you may share my enduring heartbreak over what happened to the long form of storytelling that is the novel in the 20th century. Certain writers broke form, and turned the sweeping, luxurious narrative into a broken, piecemeal, fragment of story; a weakened stream of image, word and punctuation. What could have been beautiful became a stumble through words until you want to die from boredom.  (For me, the names of such writers as James Joyce, William Faulkner, Ernest Hemingway, and David Foster Wallace send me running for the door. ) The intelligentsia – the critics and editors and publishers – all lauded this development as a maturation, a transition to new greatness, and we the hapless readers were forced to endure it like bad medicine. I did what I think most regular readers did: I read everything else. There is no shortage of writers who can still write a good story.

Hence, my joy at reading the TIME news magazine cover story about author Jonathan Franzen, whose latest book, Freedom, is due out shortly. Finally, a popular literary fiction writer who is understanding the need for storytelling. Here’s what he said:

It seems all the more imperative, nowadays, to fashion books that are compelling, because there is so much more distraction they have to resist. To me, now, to do something new is not to develop a form for the novel that has never been seen on earth before. It means to try to come to terms as a person and a citizen with what’s happening in the world now and to do it in some comprehensible, coherent way.  

We are so distracted by and engulfed by the technologies we’ve created, and by the constant barrage of so-called information that comes our way, that more than ever to immerse yourself in an involving book seems socially useful. The place of stillness where you can actually go to write, but also to read seriously, is the point where you can acutally make responsible decisions, where you can actually engage productively with an otherwise scary and unmanageable world.                                      (8/23/10, p. 48)

So, here’s to Franzen’s perspective: a hope for the return of the value of story telling, the grand, wide sweep of a world that readers in the 18th and 19th centuries simply assumed. English majors, UNITE!

Parenting is Still an Artform

As the summer ticks away, I am spending a lot of time with and for my teenagers. It has me thinking about this generation of youth, how they have been parented, and how many have bemoaned their development. I’ve written about it in my latest GoodTherapy.org blog posting. I hope you’ll visit it there, comment, and let me know how you feel about the children of the Baby Boomers.

Parenting is Still an Artform

Are You Kidding?

The Vatican has just issued a new ruling that equates ordaining women to the sin of pedophilia.

How any person of Christian faith and vision can think and write this theological argument takes my breath away. While the leadership of the Roman Catholic Church is blindly adhering to their reactionary 17th Century theology and practice, the people of the contemporary American Roman Catholic community reel from the growing child abuse scandal that threatens to bankrupt every diocese and struggle with a severe and unending shortage of parish priests. Their leaders are making decisions and issuing decisions that should anger every believing Catholic. But where is the local protest?

Unlike a generation or two ago, the protest is out the door, beyond the parking lot and in the hearts and minds of the disaffected Catholic community. While many believing Catholics are struggling to do ministry, love God and neighbor, worship and educate their children in the faith, others have left the community and not looked back.

I believe that the small revisionist groups that have sprung up in and around the American RC community will, within another generation, cause a full split from the Roman leadership and create their own church. Or, at least they should. It’s time for a new Catholic reformation in America before there is no church left to reform.

New York Times article, 7.15.2010

Summertime Unease

The summer is a difficult time to be a church-attending believer.

The pews empty, what with church education programs closed down for summer break, clergy finally taking some long-anticipated vacation time, choirs enjoying their evenings free of rehearsals and every other family traveling somewhere. Some congregations do better than others, having a longer visiting clergy list to draw from, or a deep bench of talented musicians to call on to carry the songs and liturgies along.  But the offering plates are dangerously lean, and the newsletter articles about the summer mission trips are anxious and urgent in their optimism. In those congregations where there is literally nothing between services, the hours pastors walk the halls of an empty building during a 3 service Sunday is deadening to their spirit, believe me. The church seems more dying than asleep.

The only up sides I enjoy in summer church are easier parking and longer Sundays at home. Not good indicators of a strong communal future.

I have never felt the demise of the traditional Protestant parish to be so urgent as I have in the last two years. I’m sure my late optimism was driven into me, having graduated from a traditional Midwest Lutheran seminary full of teachers and administrators educated and serving in the heyday of the institutional Church, the 1950s and ’60’s.  A changing American church? They didn’t see it coming. Or if they did, they looked the other way. Ordained in 1984, I remember all the years of denominational articles, letters, programs, trainings and trips to stimulate the parish life I inherited. I knew I was captain to a ship taking on water. Members expected strength, growth and spiritual pride in their church. I bailed faster, and felt the panic deep within me. Some of that panic propelled me out of parish ministry in 2004. In the six years since, I’ve been quite focused on my training and work of family therapy. But I haven’t left.

I struggle with this common distraction and panic. Everywhere I turn, the denomination I claim as my own seems lost in a scramble for relevance. Liturgy, once rich with words and movements and rhythm has been replaced by giant screens flashing PowerPoint versions of reworded creeds. I am numbed and bored, and I don’t seem to have a place any more. The denomination I claim to be my second church home keeps moving along with a common liturgical focus and broad social net, but seems nonplussed by its lack of growth and aging congregants.

There is a new time of the Church coming, but I can’t see around the corner just yet. I’ve been reading the New Testament book of The Acts of the Apostles in the one hand, and Phyllis Tickle’s 2008 The Great Emergence: How Christianity is Changing and Why in the other.  This summer, with empty pews and open parking lots, the questions seem particularly urgent. 

Father’s Day devotion from Pr. Peter Strommen

Peter is currently the Lead Pastor at my former congregation, Shepherd of the Lake Lutheran, Prior Lake, MN,
has written such a beautiful and wise devotion about faith, family and gender, I just have to share. Thanks, Peter. Awesome.

http://archive.constantcontact.com/fs044/1102142675015/archive/1103489936318.html

Helplessness = Trauma

I have been thinking about my, and our, experience of helplessness in the face of the Gulf oil disaster. About what it feels like in our bodies to be continuously exposed to experiences in the world that we can’t control but which have large, perhaps even life changing effects on our lives.

In the last 50 years or so, psychology as a science has become increasingly wise about experiences that wound the soul. The kind of happenings that lock up a part of our brains, quite literally, from easy connection to the rest of our inner experience and cause us to emotionally get stuck in the memory. We call these experiences traumas. Trauma with a capital T.

In the current mental health definition of post-traumatic stress syndrome, a person witnesses or experiences something life-threatening, shocking, and horrific, but with one key experiential ingredient : they feel powerless.

Powerlessness is what seems to turn a terrible experience into a Trauma; the inability to respond. Being able to do something in the midst of a rape, or fire, shooting or car accident seems to be the way that human beings help themselves mentally manage the horrors of life.

In all of human history, with the exception of the last decade, the way that human beings were exposed to the darkest part of life was that they lived it. Civil war, tornado, forest fire, genocide, death in childbirth were all experiences limited to the people who lived them in the Now. The average person may have heard about a battlefield massacre hundreds of miles off weeks after it was all done; the sinking of the Titanic days after the ship sat at the bottom of the ocean. The physical distance and the oral or written account were buffers from the sense of immediacy of pain. And while illness, death, disease, and war came very close to everyone, the human struggle had a local feel.

I am concerned for us in the age of constant media exposure. Not only do we hear about the devastation of Haiti or Guatemala after earthquake, we are taken there by professional as well as citizen video, blog, radio, television and internet streams. Rivers of emotional information, rushing at us day and night, eliciting in most of us sense of chronic helplessness. We are being exposed to suffering not in the scale of a single lifespan, but on a world-wide scale, a level most of us can’t possible sustain. And the only way that most of us have of being less helpless, of sending money, is a weak antidote to the larger emotional burden the river of news places on us.

When we watch the oil wash up on the unique marshlands at the mouth of the Mississippi, or see a dead dolphin or pelican laying on the beaches of northern Florida, we layer yet another experience of helplessness on our brains. Haiti, Afghanistan, Iraq. Over and over. It’s trauma, with a small t.

Will we all become a species so accustomed to the experience that we will adopt what is called a “learned helplessness,” where sooner or later nothing moves us any more, and we emotionally disconnect from the needs and suffering of others?

What do you do to limit the exposure you and your family have to trauma you can’t fix, suffering you can’t stop, horror you can’t control? How can you spare yourself and your children from emotional wounds of trauma caused by round-the-clock media?