FIVE HUNDRED MILES TO GO: LIVING WITH CHRONIC ILLNESS, MENTAL ILLNESS, PAIN, DEPRESSION, OR SUFFERING

A sermon prepared by Rev. Tim Kutzmark
Sunday, October 21, 2007 • Unitarian Universalist Church of Reading

Note: The individuals quoted in this sermon—all members and friends of our congregation—gave me specific permission to share their thoughts and reflections in this sermon.  Their reflections were responses to specific questions I asked them regarding their experience of living with chronic illness, mental illness, pain, depression, or suffering.  They responded in the full knowledge that what they shared was going to be crafted into this sermon.  Our hope was these candid reflections might teach and comfort as we live with chronic suffering, or love those who do.  Please know that pastoral conversations that I, as minister, have with congregants are private and kept in the strictest of confidence.

November 2002.  Joyce and David—long-time members of this congregation—board a plane to London. They are beginning a short vacation to visit their son.  They are about to enjoy a typical Thanksgiving: an airline flight followed by family and food.  Five days later, on December 3rd, Joyce doesn’t wake up.  Struck by bacterial meningitis, Joyce remains comatose for months.  A beloved and accomplished physician, renowned for her warm care of others, Joyce finally awakens to discover that she is unable to hear, she is unable to walk, and her brain doesn’t function as it did before.

What happens when comfortable life is torn from our hands?  What happens when trauma reshapes our future?  What happens when what others know as normalcy will never again be part of our world?

Five years later, Joyce writes: “My life is so different now from what it was like before – or what I expected my retirement to be like – that I often feel I went to sleep one person and woke up another. I imagine this might be true with a lot of illnesses, but having a bunch of holes in my brain, together with the dual handicaps of balance loss and deafness, certainly makes a change.”

Thrust into the role of permanent caregiver, Joyce’s husband David became aware of a difficult fact:  “I guess that there are many hands to help in a crisis,” he says, “[but] long term . . . it’s different.”  He continues: “Some visitors who came frequently for some time after Joyce’s acute illness had to stop because their own health problems or other concerns took precedence.  Some people like doctor colleagues and Joyce’s office employees who were used to interacting with Joyce in a defined relationship don’t visit any more now that that relationship is ended.”

There are many hidden ramifications when any acute situation morphs into one that is extended or chronic.   “There are specific impediments [now] to being Joyce’s friend,” David observes.  “Deafness makes communication hard, Joyce and I lead restricted lives which makes us a bit boring compared with others who have fuller lives, we can’t travel or reciprocate favors very much, and large gatherings don’t work well for Joyce because it’s easy and natural for people to form conversations that exclude her.”

Joyce adds:  “Nothing bothers me more, or is harder to avoid, than boredom.  When a friend comes to visit and talks to David without writing their conversation on the board or computer, when I have to wait while David prepares a meal, when I’m waiting for church to start, it doesn’t take long for me to become intolerably bored.  Because my life was so full before, the spells of boredom are more apparent now.  The friends that visit, on a scheduled or occasional basis, have made the difference between a life of quiet desperation and a reasonably pleasant existence.”

Quiet desperation can be the norm for many struggling with a life issue that will not go away.  Iris, an active member of our congregation, remembers: “When my son was diagnosed with autism 12 years ago, it was not nearly as common or as understood as it is now.  I knew no other family dealing with the diagnosis or daily challenges.  What I read told me that my son would be incapable of forming emotional attachments, loving or feeling the love of others, and experiencing joy.  I was devastated – for him, for his twin brother, and for me.  My sense of loss overwhelmed much of my first few years of motherhood.  It isolated me – I isolated myself – from the people around me who weren’t able to relate to my experience.  My isolation led to depression that I didn’t really understand was depression for a long time.  While I presented a fairly happy and functional exterior to those around me, internally the story was a very dark one.”

What we observe in people, and what those people are experiencing inside, can be two very different realities. 

Sharyn, a longtime member of this church who sings in the church choir and serves on many committees, has suffered from chronic physical pain for thirty years.  Sharyn comments: “Often, the cause of our pain is not outwardly visible to you.  Therefore, those around us do not have constant reminders about our suffering.  We must choose between either constantly tempering our emotions or learning to make frequent sincere apologies. Unlike broken legs or bad cases of pneumonia, chronic pain sufferers usually cannot anticipate an end to our illness – no time limits, “usual duration” prognoses or lights at the end of the tunnel.  We don’t have dangling carrots that prod us on through the pain, in hopes of eventual sweet reward.”

Sometimes depression is the by-product of such a life situation, and for some of us, chronic depression is our life situation.  “I have suffered from depression for more than 30 years,” one member of our congregation writes.  “Acceptance is the first word which comes to mind—not just society, acquaintances, friends, even my immediate family—but accepting myself that what I suffer is a real disease with real, concrete, debilitating effects.”  This church member continues: “One of the unfortunate results of depression is the inability to maintain anything resembling a balanced view of one’s world and, in fact, life itself. Even as I write this, even in the face of insurmountable evidence to the contrary, there remains a sliver of doubt in my mind that depression is not just some vestige of poor self-discipline.  It would be better to have lost an arm or a leg in some respects—not that those who have lost limbs do not have even greater suffering—[but the] loss of limb is at least a visible, real reminder of disability, whereas depression is hidden and therefore is both more ominous and insidious.”  This congregant continues:  “At it’s worst, depression descends like an oppressive weight to blacken one’s mind, spreading negative thoughts, fear, and anxiety in overwhelming waves with little respite during an episode.  In the midst of these thoughts one can barely function.  Thoughts about one’s worthlessness, uselessness and lack of purpose preoccupy and dominate one’s mind.  Into such a context it’s easy to see how one might have difficulty interacting with other people, which is why a depressed person withdraws altogether from social interaction. It follows that ending one’s life is not so terribly illogical out of this mindset.”

Not everyone survives such a challenge.  Many of us know someone who depression has claimed.  But in the face of such depression, in the face of chronic pain, in the face of a diagnosis that alters life, in the face of a child with lifelong challenges, in the face of the myriad of ways we human beings can suffer, how do we begin to claim hints of hope?

Iris remembers: “It wasn’t until my boys were five years old that I began to emerge from that dark place in a dramatic way.  It was around that time that I stopped reading about autism and began finding my own way with my boy.  I could see that he most certainly did respond to love, and that was the beginning of hope for me.”  In the infancy of her hope, Iris says: “I entered into relationships with my now-husband and this [church] community, and both helped draw me out of my isolation.  My partner saw that I needed some professional help, and he insisted that I not put off getting that help.   While working on the issues that contributed to my depression, I participated in the life of the congregation, and my focus shifted from my own problems and anxieties to those of an entire community.  Once again feeling my connection to other people and things pulled me back into Life.  Because it was so easy to help someone else who needed a meal or a ride when the need arose, it became easier for me to accept other people’s offers to help me when I needed a hand.  First my loss led to isolation, which deepened into depression.  Then re-entry led to a sense of belonging, which deepened into genuine healing and hope.”

Iris reminds us that hope can’t be sustained on our own.  As one church member says: “There is no escaping . . . other than to be distracted by someone or something. . .someone who understands and loves you anyway, someone whose energy can temporarily draw you out of your darkness or something that you do that [temporarily] brings you positive energy and hope.”

How can we accompany a person as they stumble towards hope?  How can we walk more fully with those who struggle?  How can we avoid perpetuating the expectation to: “just get over it?”  How can we companion someone in the exhaustion that comes from knowing they can’t and might never be able to?

First, perhaps, we need to move beyond our own discomfort, our own need to fix things, to make someone better.  We have to be willing to feel helpless in the face of someone else’s pain and struggle.  This is not easy.  We will have to look and not turn away. We will need to give permission for everything not to be ok.  We will need to listen, as much as we are able.

Speaking of her own experience with chronic pain, Sharyn says: “Because we know that even the most caring and sincerest of our friends, family and loved ones don’t really have the patience or interest to hear about our daily adventures with pain, we try to become experts at forcing a smile or putting on a party face.  But there will be days when we don’t have that enormous amount of energy required to put on that happy face, just so that we can make you comfortable.  Sadly, we may become withdrawn and avoid social opportunities, knowing that not many people will be interested in our lives.  If you do still invite us to social events, we will probably leave events early because we are in pain. You will probably think we didn’t like the event.  If we pass in the hall, we may have learned to survive by glancing toward the floor, so that we can avoid inventing yet another creative and upbeat answer to the inevitable question, “How are you?”  You will probably think we are rude.  If you would like to afford us a rare opportunity to respond with a positive answer, please try to ask, “How are you feeling today?”  That gives us a chance to potentially say, “I’m having a good day today, thanks.”  Our good day probably won’t last for two days, but if you recognize that we seem to be feeling well on a certain day, take that opportunity to ask how we feel.  You will be giving us a huge gift.”  Sharyn adds, gently but pointedly: “If you are a friend or family member who cares enough about us to understand rather than label us, make a lunch date with us and come prepared to listen while we teach you.”

“In my experience, “says another church member, “even if I were able to communicate the terror I feel at . . . times, most people are quite unwilling to hear it. And even if a person is willing to listen, one or two times more than this they begin to wonder why it is you are not better yet as if [this] were merely a cold sore that should be completely healed by now. The difficulty is that one becomes isolated because there is no one with whom one can talk. Often, that is all that one needs, to simply talk about it, get it out so that you can begin to face the next day or next hour. The most helpful thing is to offer to listen without expecting to solve anything and to realize that the listening will not cure the victim but WILL bring the sufferer relief, renewed self-worth and a sense of belonging again, temporarily. That is what I call hope.”

Those who live with chronic struggle, those who love those with chronic struggle, have to make the daily decision to reach for that next moment.  Some can.  Some cannot.

One church member says: “I survive because I absolutely refuse to give up. I’m stubborn about that. I cope because I believe without hesitation that there is Love, an Energy of incredible power and passion.  I believe because in spite of all that I suffer, I am myself occasionally imbued with the same power, one well beyond my own, and am able to communicate this Love.  Even those brief glimpses are enough to keep me striving to live and, most of all, love . . . all of which . . . helps me to get beyond myself and see that there are things much greater than I.”

Iris comments: “We all face tremendous, devastating challenges at some time or other.  My story is just one.  Everyone has a story.  There was a time when I thought I wouldn't get back up.  And I think some people don't.  It is close-to impossible to get back up without help and support.  And even after regaining one's footing, stumbling and falling again is more common than not.  We just have to be as compassionate with ourselves during those falls as we are with others.  Remember that getting help is the flip side of giving it.”  Iris continues: “The flames of depression still lick at my toes at times, and that scares me.  But even when I feel darkness encroaching, I don’t experience the sort of isolation I once did.  I have this place.  I have my minister and a handful of trusted friends I can tell I’m in a bit of trouble – even though that’s admittedly hard to do.  As long as I talk openly with someone – my husband, my doctor, a close friend – I am able to weather the occasional storms and maintain at least a tenuous grasp to all that I know is good and well.  My struggles no longer define or overwhelm me – they merely alter my shape periodically. “

Speaking on behalf of those who live with chronic pain, Shary adds, with a knowing smile: “We [can be] high-maintenance friends.  If you choose to stick with us as friends – or even better, to live with us as partners or spouses – give yourself a hug every night before you go to bed.  You deserve that and way more.  We’ll try to give you those hugs of appreciation whenever we can remember.  If we’ve driven you particularly crazy on a certain day, have a drink on us, buy yourself a great new novel, eat a piece of decadent chocolate cake or devour half a bag of M &Ms.   You deserve those, too.  And thanks so much for walking this journey with us.”

May it be so.  Blessed be.  Amen.