Sunday, November 8, 2015
In the pre-vacation post, I wrote about how ready I felt to live, and deal with pain ripples (should they happen while we were traveling), rather than sit as still as I could and be on the lookout for pain and prepare for its punch.
Happy to report that while on vacation, I focused mostly on being on vacation. That meant - walking, watching, eating, talking, and sleeping. I felt too happily busy to be preoccupied with pain. And when I did feel pinches and ripples and even waves, I dipped into my toolkit of meditation and meds, and kept on walking.
I can't tell you how different this was, how normal this felt, how vaguely familiar to my pre-pain life.
While we were on the road, I was contacted by a television producer who does a show about couples and was preparing a segment on couples and illness. She found me through this blog, and Richard and I were interviewed for her show, which is called Love Talk Show.
Here is the show entitled In Sickness And In Health. If you just want to see the segment with Richard and me (preceded by an ad, which you can skip), click on the link below (it ends at 26:00 minutes)
Wednesday, September 16, 2015
Richard and I used to be fierce travelers. In fact, in 1987 we quit our jobs and traveled around the world for a year. We hiked wherever we could. Ate street food. Bargained in bazaars. Even learned a bit about the uses and misuses of baksheesh (tipping/bribing).
For the past 15 years, we have been relatively homebound. My wanderings circumscribed by the addresses of my health care providers. I was either hurting too much or too afraid to wander beyond that perimeter for fear I'd be struck with an immobilizing pain spike, beyond the reaches of my healers.
Next week, Richard and I are leaving on a month-long trip to Europe. These boundaries were set by the availability of friends to visit in different cities - Paris, Barcelona, Berlin. No doctors, nurses, physical therapists, or energy healers on this map. I'm stepping boldly into this old, new world.
My pain has been an afterthought for the past many months. It hasn't directed my every decision. Can I go to see a movie and tolerate sitting for two hours? Can I visit a friend who lives an hour away? Will there be a comfortable place to sit at her house? Will I be good company at a restaurant or too preoccupied with pain to be social? None of these questions, that have been my companions for more than a decade, have been nagging me recently.
So I am going to Europe in a good physical state. But more than that, I am in a good mental state. A nibble of pain no longer sends me into a never-ever-always tail spin. You know what I mean - the waves of panic that set in when the voices say - "I will never feel better. I will never, ever be able to be a full person. I will always suffer." I have finally learned what to do to quiet my pain. And I have finally learned to answer those dreaded voices with compassion rather than feed them with more fear.
I can't know if this uplifted period is a phase or a new state of being. But I've decided I'll take it and ride it -- to the Eiffel Tower, to the Sagrada Familia church, to the Deutscher Bundestag. And hopefully I'll bring it back home with me.
Right now is the period of the Jewish New Year. A time to connect, in all ways. I wish you all a year of deepened connections, with those you love, with health, and with compassion.
Monday, August 10, 2015
A hospital in Fayetteville, Ga., made special arrangements for a couple, married 68 years, to see one another during a recent stay. The couple could not share a room because of state regulations for private rooms, but staff at Piedmont Fayette Hospital arranged for Tom to visit Arnisteen during their stay, Tom, 96, "wept" as he talked about his love for Arnisteen, 92: “I just can’t be away from her, she’s the finest woman in the world,” he said.
Yes. Lovely. Sweet. Touching. But come on....really!!
The big deal here is not that this couple was able to hold hands across the chasm of state regulations and hospital boundaries. The big deal is that this is not the norm. The big deal is that the hospital's honoring of the bond of a lifetime of shared experience, meaning, and love that this couple share is so rare that this picture went viral.
Patient centered care - that omnipresent health care meme - should mean caring for what's at the center of the patient's world. If this were truly the case, then care should always be wrapped around the patient's core needs, values, and relationships. And the patient's life partner sits at the very center of it all. It is that relationship, for better or for worse, that exerts huge influence on the patient's physical, emotional, and psychological well being.
One day, during my partner's hospitalization for heart surgery, I was sitting near his bed, doing nothing, really. I said to him, "I wish I could help you." He responded, "Just having you here help me breathe easier."
In my dream health care world, this photo is one of thousands.
I'm interest in hearing from you about hospitalization experiences you and your partner have been through. Was the importance of your relationship recognized and supported? Were you asked to leave the room when the doctor arrived to examine the ill partner? Or were you asked to stay to hold his hand and share your perspective?
Friday, July 17, 2015
In Part 1 we met a woman who had reached her breaking point in her troubled relationship with her ill spouse. She, like many others, had to ask herself the tough questions that live at the intersection of love and obligation. She wrestled with deciding what her obligations were to her partner, and what her obligations were to herself.
This wrestling led her to examine her deepest beliefs, feelings, experiences, values, family legacies about illness, and her vision for her future. Those of you who find yourselves at your breaking point will need to do your own inner excavation.
You will need to carefully and patiently examine all these elements. You will need to ask yourself core questions like:
- What does this feeling want me to understand about it?
- Is this belief still valid?
- Do I still need this value?
- Are other values and beliefs more important now?
- Is there another way to think about old family stories about illness and caregiving?
- What are my bedrock truths?
Hopefully, your findings will begin to take shape, possibly in surprising patterns. You may see new possibilities emerge, ones that may be pointers to better pathways.
But that's not all. If possible, the partners should share their awareness, their self-discoveries with each other. They may find unexpected overlaps or unanticipated differences. By sharing their discoveries they may find ways to create a better balance, together. Or they may find that their differences are grievous and irreconcilable. Either way, the path will become clearer and clearer.
Not all couples can reveal their true-est feeling to each other. For some, that has never been their habit, and it may be too foreign, or too risky to do so. In this case, each partner needs to decide for herself what path she wants to walk, how she wants to take the next steps, and whom she wants to invite in as her allies and supports.
The woman I recently spoke with talked with her husband about her unhappiness. Surprisingly, he not only listened, but shared his feelings about his own misery. They realized that they each wanted to separate and began considering divorce.
It took courage for this woman to explore her deepest feelings, values, and needs. And it took courage to share them with her partner. Her reward was that instead of feeling guilt and shame over inflicting a separation on her ill husband, she felt incredible relief that separation was actually a shared choice.
Reaching your breaking point needn't be a time of shattering. The intensity of energy at that point can serve as a crucible where the different elements of your essence (and potentially also your partner's essence) can interact to produce something new. That something new can be separation (as it was with the woman I spoke with) or greater closeness, or a calmer acceptance of what is.
Monday, July 6, 2015
I had a conversation with a smart, insightful, articulate woman this week who has reached her breaking point.
She has been the primary caregiver for her husband who has had cancer for many years. But even before the cancer, their marriage was troubled. She described her husband as self-centered, angry, quick to blame, and slow to forgive. He is also a proficient verbal sniper -- firing off ugly names and harsh critiques with great dexterity.
A few years ago his disease went through a period of acceleration. His symptoms grew more pronounced. And his selfishness and harshness kept pace.
Recently, he began experiencing another round of increased symptoms and is about to go through some diagnostic test to reassess his cancer's status.
This self-aware woman has reached her breaking point. She knows that if he declines, physically and emotionally, and she is in position to play the caregiver role, she will "be destroyed."
What should she do, as she assesses her options at this intersection of love and obligation?
This is an intersection many partners living with illness arrive at. Ill partners may worry about adding greater burdens and decide to suffer in silence. Or they may feel that their illness requires that their well partner pick up the loads they can no longer carry. Well partners may feel it is their duty to willingly pick up those loads. And well partners may also feel that one more straw dropped on their load will break their backs.
How do you balance your obligation to your partner (whether it comes form love or a sense of duty) and your obligation to yourself?
There are no hard and fast rules in the illness playbook that answer this question. Each partner must dive into their repository of personal values, family legacies, love for yourself and for your partner, disappointments in yourself and in your partner, and your vision of the future.
In Part 2, we will explore how to dive into that repository and come up with the path that is right for you.
Friday, July 3, 2015
The chronic unpredictable stressors and trauma we suffer as children not only shape our emotional lives, but they affect our physical health and longevity.
Donna Jackson Nakazawa, author of a terrific new book, Childhood Disrupted, explains the link between emotional trauma and chronic adult illnesses. Donna's book is available in stores and on Amazon on
I highly recommend that you read this groundbreaking book, which shows why you or someone you know may have become locked in pain—and what you can do to recover.
Wednesday, June 17, 2015
First off, let's define the difference between sympathy and empathy. Sympathy is when your partner says, "I'm sorry you're hurting." Empathy is when your partner says, "I know how hard it is to suffer pain."
Sympathy comes from an ability to see and acknowledge your partner's hardships and express compassion. Empathy comes from knowing the hardships -- either because you have experienced them or can extrapolate from similar experiences -- and expressing, on a deeply personal level, to your partner, the emotions and challenges your "shared" hardships arouse.
The bond sympathy builds is a comfort. The bond empathy builds is a refuge.
A few months ago my partner, Richard, had an outbreak of shingles. And yes, he had not had the shingles vaccine. It was terrible. He described the nerve pain shingles produced as similar to what he imagined having six inch nails pounded into his chest and back would be like. He suffered deep, penetrating, sharp pain for weeks, with little relief. And he suffered all the consequences -- sleeplessness, fear, short-temperedness, impatience, irritability, distancing, and on and on.
As his symptoms faded, he reflected that while he had always had sympathy for my chronic pain condition, he now had empathy. I cheered and I cried, because I did have empathy for what he went through, and wouldn't wish it on a mosquito.
I am not recommending that your partner be inflicted with whatever is causing you to suffer. I don't wish well partners know physical pain; and I don't wish ill partners know the emotional and physical exhaustion of caregiving.
I do wish that we all took some time to go deep inside our own experiences and harvest the memories, and their emotional wrappers, that resonate with our partner's experiences.
If you have felt the confusion and fear of being lost, you may be able to resonate with your partner's experiences of being lost in the labyrinth of the medical system, seeking answers and only finding more informational breadcrumbs. If you have pushed yourself beyond endurance and know the experience of physical depletion and emotional weariness, then you can resonate with your partner's experience of ceaseless caregiving without the ability to do the one thing he/she yearns for -- to make it all better.
One afternoon several years ago, in Richard's post cardiac surgery hospital room, I lay on a couch next to him sighing that there was nothing I could do for him. He said, "Having you here, just being with me, helps me breathe easier."
Sometimes just "being with" is the best form of empathy. It helps us all breathe easier.
What are the ways you empathize with your partner's experience?