| Title: | “When Illness Touches Your Life” (or “A New Normal”) |
| Scripture: | Psalm 30; Mark 1:40-45 |
| Date: | 2/16/03 Fifth Sunday after Epiphany (Yr. B) |
| Rev. Joy Haertig |
There is a story called “The Fish and the Great Sea”, written by Alan W. Watts in 1941. It is a lovely tale about a fish swimming happily up and down, and round day in and day out without ever noticing he was moving in water. But one day something peculiar happened to him. He began to think how strange it was that he could swim, and in thinking about that, he got all confused in his swimming and was suddenly terrified lest he should forget how to swim altogether, and drop down into the infinite depths below. At that very moment, he began to fall.
I think that most of us are a bit like the fish. We “swim” through our daily lives and routine without thinking too much about it all until something peculiar happens and then much or all that we have taken for granted seems to slip from our grasp and we worry we might sink instead of swim.
This week I attended the first in a series of monthly continuing education classes I am taking at Presbyterian Counseling Center. Our first session was led by Bill and Kathy Collins, Bill is the director of Presbyterian Counseling Center and a therapist, his wife Kathy is a campus minister at Seattle University, the session was entitled: “Helping Couples with the Impact of a Child with Special Needs”. Bill and Kathy were swimming along in their full lives with their two children when their youngest daughter was diagnosed with terminal cancer - an experience that would change their reality forever. Their goal that morning was to help us, who are in helping professions, to try and understand what the experience is like, and how to support those going through it so that they do not sink down to the “infinite depths below”.
After attending the workshop, it was a lovely “surprise” to find that the assigned scripture readings for this Sunday followed this same theme of the need for support when we are thrown into the experience of illness.
A few weeks ago I preached on another story of Jesus' healing from the Gospel of Matthew. We looked at the difference between healing and curing and I shared with you the practice of early Middle Eastern communities of ostracizing those who were ill. It is easy for us to think, “Oh my gosh, how could they do that?” When in reality, in our society today, it is still very easy to feel, perhaps not ostracized, but at the least, very separated, from one's community when faced with illness or some kind of unique need that sets a person or family apart.
Today I want to share with you some of the reflections that Bill and Kathy shared with our class about what often happens to couples and families in these situations. I want to briefly touch on how our society still isolates people with special health needs and then end with some thoughts on how we as individuals and as a community can seek to remain bonded to those who are having difficulties “swimming” in their day-to-day lives.
Let me begin by giving you the estimate that Bill gave to us - there are approximately 18 million people in the U.S. with unique health care needs. As a pastor I see that number as meaning that there are at least double that amount of people then, that are in need of support as they try to “swim” through that journey. Let us consider for a moment some of the issues that can arise for a family when faced with unique health care needs -
In the midst of one's own experience of a shifting reality, a family/couple/parent encounters the medical community, a group of strangers at that point, who have their own plan and strategies and a language that is yet foreign, confusing and dauntingly expensive.
Caring for someone with unique needs can “engrave one's life with worry”; the experience is inescapable and perpetually demanding. When it is a child, it turns the parents more into parents and less into partners. One's private life changes, others want to be involved, we need others to be involved - discerning how and when is time consuming and stressful.
Swimming along in your life and then having a peculiar situation occur such as an illness can sometimes bring a family closer together, it can clarify values and deepen your connection, while at other times it can create walls between you, communication becomes difficult and stress can drive you apart.
As I mentioned earlier, while we may not intentionally ostracize people and their families with special needs, they usually end up feeling and being isolated because they are so busy trying to keep their heads above water. There is little time and energy to seek support and connection, and most certainly, on top of that, there is a societal message that most of us have inherited, that we should be able to handle problems on our own.
Bill and Kathy Collins summed up the vast array of experiences and feelings into three main areas: Differences, we all suffer/cope and care differently. These differences can endanger relationships impacted by special need situations. Fears, in special need situations, fear can be a constant companion and can cause alienation within the family. The final and third area is Chaos. We are thrown into a steep learning curve as we enter a brand new world, there is a strong feeling of lack of control, people often work harder and put all their energy towards the person with the special need and leave little if any for self-care.
The Psalmist in today's reading described his feelings of living in the midst of illness as being “surrounded by enemies who gloat over him” and living in the “Pit” of Sheol - hell. He reflects back to when things were “normal”, he writes:“In my prosperity, I used to say, 'Nothing can ever shake me!'” And then he was caught by surprise by an illness that changed everything - it felt like God was silent and hidden.
His words speak to me of what the Collins reflected to our group that day - swimming along in life and then being faced with a special health situation, is lonely, chaotic and fearful.
While on the one hand I say that we do not mean to intentionally ostracize people in our society today with unique needs, we all know that we do. The idea of “normal” is held up in our society as a goal we must all achieve. We grow up knowing on some level how “normal” is defined even if we are not given a hand-written blue print to follow. Like the fish in the story, “normal” is the sea we at least think we swim in, or are supposed to swim in. When something peculiar happens in our lives, we struggle to keep afloat and often spend our time doing everything we can to get back to “normal”, when in reality, we may really need to be about the work of creating a new “normal”.
As I reflect on the workshop and the ideas offered to us as ways to be supportive to people experiencing this kind of stress, I saw a Christ-like theme running through it. Part of what we can do to be a support is to assist a family as a new concept of what is “normal” is formed. We do that by being with them, asking open questions, and most of all by listening, as they wade through that difficult and often slow process of peeling off the original “cocoon” of what is normal and creating a new one. It is not an easy process, but it can ultimately be quite liberating.
On a less personal and individual scale, I was interested in what was said in an article in The Christian Science Monitor about how sister stations to our American Sesame Street show in other parts of the world are seeking to help children begin to re-think what “normal” looks like. I was especially interested in what they are doing in South Africa where children with AIDS are becoming a “new normal” in the public schools. The South African version of Sesame Street is “Takalani Sesame”. The article tells us what we can expect to see: It is a sunny day on the South African Sesame Street and Neno and Kami are singing a little ditty about “same” and “different.”
“I have hair and you have hair, la dee dum, we are the same”, croons the red Muppet. “I have AIDS and you don't, tra la la, we are different,” hums his mustard-colored friend. The two burst into a song and dance routine: “Oooo, we love one another. Same and different, yeah.”
Takalani Sesame is certainly not trying to make light of the reality of AIDS, but it is trying to help teach the children about a “new normal”. I believe this kind of teaching for our children is ultimately liberating and necessary in today's world.
We are in so many ways, like the fish that swims in the big sea, never thinking much about what the sea is or how he came to swim until something unique happens and we wonder if swimming will ever be the same again. The message I received from the Collins who led the workshop, and the message I glean from Jesus' “miracle stories” is that part of the process of healing comes in the re-shaping of our idea of what is “normal”.
Reynolds Price writes in his book, A Whole New Life, these thoughts after five weeks of radiation: “Have one hard cry, if the tears will come…Next, find your way to be somebody else, the next viable you - a stripped-down whole other clear-eyed person, realistic as a sawed off shotgun and thankful for air…”
Not an easy journey to be sure. But perhaps for those of us on the side of giving support, the best thing we can do is be a Christ-like presence of compassion, love and listening as a new “normal” takes form.
Amen.