When It's Sooo Hard to CHANGE!

Ken Rutgers (not his real name) lifted his shirt over his floppy paunch and stuck a needle into his tummy. He let the shirt slide halfway back into place and then wheeled himself closer to the table, where he proceeded to dive into a Macdonald’s hamburger and a streudal.

“Diabetes is such a drag,” he said to no one in particular. Receiving a sympathetic nod from me, he went on to say that he now has to test himself four times a day and give himself insulin every time he eats.

A few of us had remained in a workshop room at the American Lung Center during a lunch break from a training in Stanford’s Chronic Disease Management Program, which has just been updated. This excellent program is offered all over the country, as well as internationally, and it's free. It can also be taken online.

Ken is a Master Trainer. He is also a Vet, from the Vietnam War I would guess, and he works mostly with other vets through the VA.

Later on, after I led a discussion about what stops us from keeping up our exercise program, Ken offered that he just can’t get himself to exercise.

“I never have liked exercise,” he said. “I’d rather watch a movie.”

“But doesn’t it make you feel better?” I asked.

He shook his head. He has tried it. He’s gone to the pool, and after an hour of pool walking he comes home feeling worse. As for chair exercises, they do nothing for him.

I wondered why he had brought this up, unless it were in hopes of getting some help with this problem, since everyone knows exercise is good for you, especially if you’re dealing with a difficult chronic illness like diabetes. It’s one of the most important things you can do to have a better quality of life with a chronic illness.

The other healthy practices include mindfulness, a good diet, medication and a good relationship with your physician, healthy social interactions, and spending time in nature, fresh air being a great remedy in itself.

Ken knows all this – he teaches it to the Vets in his workshops! But clearly he is unable to do it himself. That might be a good thing, in a way – he certainly can’t look down on the people in his groups who simply can’t get themselves to do things they know are good for them. But it’s not good for Ken!

Exercise is so important for a person with chronic illness. For those of you who are diabetic, you’ll find lots of tips at the Diabetes Self-Management Web site. There’s an excellent book you can order from the site, and it’s only $6. For people in wheelchairs like Ken, there’s specific advice here 

I liked Ken, and I drove home from the workshop thinking about motivation and how it works. I have trouble exercising, but I do it. If I don’t, my back starts to hurt and my gait becomes uneven. When I do my exercises at home or at the gym, I feel much better. My relationship with my physical therapist, and hours of PT sessions over the past three years, have finally convinced me that exercise is probably one of the most important things I can do for myself; and even then, I have trouble working it into my routine! 

My problem has been that morning is the best time for my writing, and typically that is also when I try to exercise. A recent article in the New York Times clued me that afternoon may actually be a better time. The jocks at the health club I go to seem to think it is; that seems to be the busiest time for muscle building! Afternoon exercise is working better with the flow of my day.

Change isn’t easy and requires a lot of motivation or will power. My motivation is a negative and internal one – to avoid back pain. (According to Jim Taylor in his blog “The Power of Prime,” at Psychology Today, there are four types of motivators, positive and negative internal, and positive and negative external.) Taylor is a PhD specializing in the psychology of business.  He says the first step is to make the decision to change.

My guess is that Ken hasn’t made that decision; he is more interested in getting sympathy for his problem. But from his tone it was also clear that he’s uncomfortable with this situation. While not exactly committed to making change, he’d like change to happen.

Discomfort can be one of the primary internal motivators for making change, but clearly, it’s not sufficient in Ken’s case; something else is blocking his willingness to do the work of changing, which Taylor calls “the Grind”; success comes from willingness to do things you don’t particularly want to do, and persisting even when the results are not visible. Here’s where the effort comes in. To triumph, you must be completely dedicated, says Taylor, referring to the third “D” in his Three D’s for change.

Taylor’s scheme is based on will power, and judging from his career, I'm sure his is strong and active. To change a bad habit, say successful people, you summon your will power. Alas, some people are unable to do that. Is that because they are lazy or weak? That is what we tend to think, for it is what our system of Western ethics has taught us to believe, that we have free will and if we don’t use it, “there’s no one to blame but ourselves.”

But Ken does not appear to be lazy. A man in a wheelchair, he manages to get himself to the Vets’ hospital to give these workshops on managing one’s chronic illness on a regular basis; in fact, he has given more of them than anyone else in the program, even when there’s no money to pay his stipend! Like most of us, he’s motivated about some things, but not others.

Here’s where it gets complicated.

Dr. Gabor Mate is a Canadian psychiatrist who works with people addicted to heavy drugs. In an interview on Toronto television, interviewer Steve Pakin asked Mate about the role of will power in overcoming addictions. He said,

“Will power is a complex matter,” said Mate, because “the circuits in the brain centers which make conscious decisions are very weak, and they are much dominated by our impulses, which come from deeper centers in the brain, and the gap between an impulse and a decision is only a split second.”

No wonder it's so hard to change our habits! 

This gap between impulse and decision-making is true not only of addicts, but for all of us. It means that if you think about going to the gym when you'd really like to lie down, the chances are that you will lie down first and then think about going to the gym “later.” No wonder it's so hard to change our habits!

We’ll look at motivational blocks in our next post.

Alone with Invisible Chronic Illness?

The grocery store is a place I like to be, especially a store packed with fresh, live produce, with good cuts of meat not pre-wrapped in plastic, a grocery store that smells like food and not like (gasp) Febreze or detergent.

But when I was sick with colitis (or IBS, or whatever you want to call it, since doctors don’t seem to agree) a trip to the grocery store almost always included a rush to the bathroom.

And what did I do with my three-year old son? Now many years later, I can’t remember. Probably, to his chagrin, he came to the rest room with me.

These are some of the unseen challenges of what has since been named Invisible Chronic Illness (ICI) – symptoms like the severe chronic pain that comes with fibromyalgia; nausea and cramps with irritable bowel syndrome; fatigue that is the hallmark of chronic fatique syndrome and many other conditions; depression from having to put up with all these things, and the isolation that illness inevitable produces.

So it is surely a blessing for people with ICI that the Internet now offers a forum for interaction with other people contending with similar difficulties that keep them at home and alone.

In September, I listened to some of the speakers at a virtual conference on ICI. You can still hear many of the presentations by visiting the page.  Life Coach Trish Robichaud spoke about her own difficult recovery from heart surgery; she also suffers from multiple sclerosis and chronic depression. Former athlete Tiffany Westrich offered tips for coping with the threat to a person’s sense of identity when you can no longer do the kinds of things that once defined you. Many other talks were offered on various topics connected to coping with life when life becomes transformed by chronic illness.

This morning I’ve been reading some of the blogs that are also available at this heartwarming site created by Lisa Copen, herself a victim of ICI. Lisa has had rheumatoid arthritis (RA) since she was 24 but she manages to raise her son and stay in her marriage, writing books and updating her site(s) at 3 am when she can’t sleep. She has made chronic illness her ministry http://restministries.com/, and through this work she offers tremendous support to people isolated by their health struggles.

And it is surely needed. Isolation, unfortunately, is one of the key difficulties of living with invisible illness, or with any chronic illness for that matter. And when it isn’t apparent that you’re unwell -- when “you look so good,” as friends like to tell you – and people find it hard to believe you are sick, the widening gulf between you augments your sense of separation from the everyday, “normal” world. Some people will even think you are faking it, that you didn’t come in to work because you are lazy; or that you are just plain mentally ill.

This lack of understanding from others is one of the chief challenges faced by the people who write on these pages…that friends, neighbors, co-workers, and folks they meet on the street (when they do manage to get out of the house) don’t understand what’s going on with them.

“Jen” speaks eloquently about this problem in her post “What You Don’t See” at her blog Meditatio: My World As It Is Sung. After running through all the things that may be going on with her when she doesn’t greet you on the street – she has fibromyalgia, which causes terrific pain, and with that comes depression, migraine and IBS – she winds up with this short message: “So please… don’t assume you know what is going on with me or with the average person on the street. Many of us have chronic conditions that we appear to hide well but are still just as real as the ones that manifest outwardly.”

Several people comment to say Wow, who knew, and also, How judgmental we have been! “Stacy” writes, “This post does bring to light the need to be compassionate at all times, no matter what we *think* is happening.”

If there’s a gift hiding behind every dark cloud (and I tend to believe there is!), a message we can receive from the sufferings so many people endure today, inexplicable as it may seem, then perhaps it is that very realization: That the person who snubs us in the grocery store or who explodes in anger over the loss of a parking space or wears sunglasses at night may actually be in need of our compassion, not our judgment, not our wrath.

It’s an important lesson in a wrathful, hostile world, a gift that we may receive in deep gratitude, as we open a door or carry a package for someone who might really appreciate being seen as they cope with one of the most difficult challenges in life, and sadly, one of the most common.

More about ICI in the posts to come. Thanks for reading! 

After the surgery, pill addiction?

It was my physical therapist who alerted me that I might be addicted to hydrocodone (Vicodin), a drug I have been taking for nearly three months since my hip replacement surgery.

I had told her that when I didn’t take it, I started to feel a stinging, achy feeling in all of my joints, similar to having the flu; and she said that sounded like I was addicted.

She suggested that it might not be wise to stop using it immediately. Didn’t the doctor say anything about how to wean myself from it?

He did not say a thing. Maybe he thought this 68-year old woman was not likely to get hooked. But anyone can get hooked, and many of the people who are addicted to hydrocodone are people like me, who started taking it after surgery and just couldn’t get off it.

Addiction to pain pills is rampant here in the state of New Mexico, which is now first in illegal use of these opiates that are routinely given for severe pain. Seems like any doctor ought to know how to help patients stop using it. There’s a drug that can be administered to assist in that transition; it’s called Suboxone.

Hydrocodone was first introduced in the 90s to replace codeine, allegedly to avoid codeine’s constipating effect. Turns out hydrocodone and oxycodone (Percoset) are just as constipating; all opiates interfere with the peristalsis of the stomach that accompanies digestion.

Over 50 additional side effects of hydrocodone are listed at Drug Rehabs, http://www.drug-rehabs.com/hydrocodone_side_effects.htm

Of course that list doesn’t include the much more serious side effects of taking acetominophen, which is always included in hydrocodone pills along with the narcotic. Acetaminophen in large doses causes liver damage. Warnings to that effect are now pasted on the bottle, but in the early days of hydrocodone use, patients were not informed.

This is the helpful painkiller we were given to replace codeine, and we may well ask what was so wrong with codeine that we needed a new drug with all these risks attached to it -- including that fact that it’s far more addictive, so much more addictive that it’s now in demand as a street drug?

PubMed lists only 16 side effects for codeine, which is a natural opiate, unlike the synthetic form used in hydrocodone. Codeine is still used, but if you want to get it for major pain like surgery you’ll have to practically stand on your head in the doctor’s office. Is this insistence on hydrocodone for our protection, or does it protect the market for hydrocodone? To my knowledge there are no advantages to hydrocodone over codeine.

After Julie, my PT, suggested the possibility of addiction, I found I was able to reduce the dose immediately to half a pill twice a day; but two weeks later, I am still taking that dose for the flu-like symptoms! It’s surprising how uncomfortable those aching joints can be, perhaps because my body starts thinking I have the flu and ought to be in bed.

So it’s not just the hip surgery one has to recover from – but the recovery!

Maybe medical marijuana would be a better solution. I’ve used it, it works … but that's a topic for another blog.

Through The Surgical Tunnel

  “I was very, very depressed after this fall,” R. said in her deep, soft voice – a soothing voice that must have been considered alluring during her youth, when she lived in Big Sur and worked as a server at the famous Nepenthe’s Inn.  Now she is 76. She fell one day around Christmastime last year, when walking her dog. A neighbor saw her on the street near her home in Santa Fe, unable to get up, and took her to the hospital. The hip was broken.

“I wasn’t sure I wanted to live any longer,” Sylvia added. “But little by little it’s getting better.”

I suggested that it might have something to do with the drugs. Painkillers are basically downers. Of course it’s also a shock to find that one has become so vulnerable. A tug of the leash, and the walk is over, for six months or more.

In fact, a hundred years ago, as my Buddhist friend Jay did not hesitate to point to me after my own fall, such a break would likely have been fatal.

You go to bed, and you lie in pain, waited on by unwilling relatives; and maybe the bone heals, maybe not; and maybe you “give up the ghost” (a wonderful old phrase that you don’t hear much anymore), and die.

Now you have surgery, the leg is set, you are up on your wobbly feet in two days, and then you start doing physical therapy. A few months later, you are on your feet again.

Given this illuminating historical perspective, it’s somewhat surprising that we don’t wake up after surgery stunned, but grateful. Instead of shouting, “I’m alive!” we may wish we had already died. Perhaps the nervous system, recognizing that the experience was life-threatening, does not know how to update itself.

Or this depression may be due to the ambivalence we feel, especially as we age, about the value of our lives, the death wish (thanatos, according to Mr. Freud) struggling against the life wish (libido) until, needless to say, death wins out.

But as I considered my own experience after a recent surgery, I learned that it is the anesthesia administered during surgery, more than the painkillers that follow it, which may have a very disorienting effect on many people.

There is even a name for this condition, and, naturally, an acronym: Post Operative Cognitive Decline (POCD). This decline was first identified in elders after cardiac surgery, but it turns out that orthopedic surgery can have the same result, even when it’s elective. (When surgery is mandatory, after an accident, one might expect POCD to be more common, as trauma is known to be associated with loss of control; and trauma can lead to depression.)

In any case, POCD is caused not by the drugs per se or by the trauma, but by the effect of the anesthesia on the flow of oxygen to the brain. This reduction of oxygen supply, however brief, is likely to have negative effects on cognitive ability. Now scientists are researching ways to minimize this loss, particularly in the elderly. In one study, research showed the value of “intra-operative monitoring of anesthetic depth and cerebral oxygenation as a pragmatic intervention to reduce post-operative cognitive impairment.”

That’s the scientific angle, the one likely to produce helpful surgical interventions. Now that we are living longer, it will be helpful if the various orthopedic surgeries some of us must endure do not accelerate cognitive decline! I have not had the opportunity to ask my surgeon, but I assume the cocktail used in my case was adapted for this very purpose. The nerve block I was given before going into the OR is intended to reduce the need for anaesthesia. I do know that I had no trouble breathing when I woke up, a good sign!

Even then, I definitely experienced a journey into the twilight zone that became more evident a week after the surgery and continued for about a month. Part of that experience was a curtailment of my ability to think clearly. But another part of it was more like Sylvia’s depression. I, too, wondered whether I wanted to go on living; the very question seemed to bring on a wave of hopelessness. My physical condition, though a temporary one, seemed chronic, timeless, a new state of being that I resented, that capped my ability to make up for whatever I had failed to do in this life thus far.

I had a lot of very colorful dreams, most of them bizarre and alarming.

Looking back, it feels to me as if I had entered a dark tunnel, not of cognitive decline per se, but of life review that seemed preparatory for death, even though I knew I was not dying.

It was a descents into a subconscious region, where it seemed the body itself, stirred and jumbled by the surgical intervention, released buried complexes regarding self-worth and purpose.

One morning, after a long meditation, I bumped into an old belief – that I needed to somehow be Great in order to deserve my life. That belief had been with me since childhood, an ambition passed on to me by my mother, who wanted to be a great writer herself!

Exploring this lifelong negative fantasy, I discovered that I did not have to have a justification for living – I did not have to reach for some vaunted, special goal in order to prove my worth.

I just had to set my sights on realistic, attainable goals, and try to be a good person while I carried them out.

This was quite a profound realization. Ultimately it offered great relief…but first I had to process the realization of how unattainable my goals had been all these years. I couldn’t get out of the tunnel until I had conducted this painful review.

Meanwhile, as time passed, my body continued healing. What a miracle that is! And as I regained the use of my legs and made my way into the light of day I knew the journey had fixed something more than the hip.

I had revisited an ancient complex held in the bone since childhood, when it was first discovered that my hips were out of place; and it had been released.

It had been, after all, despite the modern technology, a shamanic journey, and I had come back to life having retrieved a lost piece of my soul.

How NOT to Grow Old!

While ageing is inevitable, getting old is not. We do not have to turn into petrified zombies complaining about our aches and pains, wandering around in a sort of daze, or relegated to the rocking chair.  Now that many of us will live thirty years longer than our grandparents, it’s important that we find meaning and purpose in a time of life that was once viewed only with dread. The secret of how to harvest riches during older age may be to realize a simple truth: that we are not our bodies.

Many older people have experienced this puzzling realization. From the outside looking in – from the face in the mirror – we see an aging person; but we feel we are the same as ever we have been. It’s a paradox that dramatizes the gap that exists at every age between the way we perceive ourselves and how we are perceived by others; as the poet W. B. Yeats wrote, “Only God, my dear, Could love you for yourself alone and not for your yellow hair.”

We want to be known and loved for who we truly are, but who are we really? In youth, our physical attributes tend to direct the storyline, and so we embark on retirement with a habit of identifying with our yellow hair, our golf score, our youthful figures. Alas, we soon discover we have set ourselves up for terrible feelings of loss, as hair turns grey, figures grow round and our golf score drops. Despair seems to lurk around every corner as we encounter not only these physical losses but other losses as well – the loss of partners, for example, and friends. To age is to endure the pangs of grief. What on earth can be the point of it all?

Rabbi Zalman Schachter-Shalomi, beloved guru of the age-ing tosage-ing movement, sees these losses or “diminishments” as an essential part of the journey at this age.

I believe that coming to terms with these diminishments is a major developmental task of old age that helps awaken the elder state of consciousness, with its promise of expanded mental potentials, spiritual renewal, and greater social usefulness.

For him, new mental and spiritual powers become available to us as we age, powers we can put into service for the good of others; that is the purpose and the bounty of these extended years. 

Herein lies the opportunity of older age. As the externals begin to lose their dazzle, we may discover, by turning within, that great reservoirs of deep spiritual wisdom become available to us. We may experience what --- calls the “incandescence” of advanced age; the light of the inner flame seems to grow more intense as our identification with the body begins to release its hold. As we begin to realize that we are not the bodies, we discover that we are, in essence, this bright flame. We have the capacity, when tuning in to this essential nature, to discover with what is uniquely ourselves, and allow it to radiate through our bodies. Its gentle warmth will alleviate the body’s aches and pain, bolster our immune systems, and strengthen our vitality. For as much as the body’s limitations can affect the spirit, the spirit’s triumph invigorates and helps to heal the body, helps us to live with the various ailments and chronic pain that are likely to besiege us as we advance into our eighth and ninth decades.

But, we may ask, how to get in touch with that salubrious flame? Many of us enter our sixties having lost touch with our essential being. After decades pursuing careers, raising families, and investing our energy in material accomplishments, we may have forgotten how to access that reservoir. The psychic scar tissue of accumulated emotional and psychological wounds can also block our access to our fresh inner spirit. 

Happily, there are many avenues to explore that can help us remove those obstacles. In addition to counseling, which can be of great value during this transition, working with a life coach to redesign your life plan can be of inestimable value. There are also many valued physical therapies that unlock emotional pain that has been carried within the body. Releasing these containers of dense energy may release physical pain as well as help us open to the greater self that has lain buried all these years under old fears, negative expectations, and dull ways of thinking about our lives.

Spiritual practice – meditation of various kinds, yoga, chi gong and tai chi – is invaluable, both in physical rejuvenation and in freeing the blocked spirit.

Sometimes life will trip us up, forcing us to delve deep inside to liberate the buried self. It may be an illness, or a divorce, something planned or completely unexpected, a change of career, a move to a new place. These challenging and unpleasant circumstances may actually serve to free us from old baggage and open new doorways to experiences we did not realize were still available to us.

The opportunity for growth may arrive in dreary attire. Depression is often the trigger that informs us that some kind of change is needed. What is it we wanted from our lives that we forgot? Where did we leave ourselves behind in favor of a job or a relationship that demanded we try to be like someone else? What does this time of life required of us?

Finding the little light inside is very much the mission of this time of life. We’ve come to a critical juncture; the choices we make here may very well determine how we engage with the unique challenges of this last act of our lives. Will these years be a time of stiff denial or straightforward decline? Or, to use a concept advanced by Marc Freedman, can we turn this cherished, extended time – this gift of age -- into an encore that brings together all the themes of our life in a fine culmination? 

We can’t avoid aging, but when we begin to view this time as one of rich harvest and deep personal growth, we can live to be 100 without becoming old.

Stephanie Hiller is a writer and a life coach who helps people navigate this new territory of extended lifetimes. She lives in Sonoma, California.

hiller.stephanie@gmail.com

707 939-8272