Love in the Time of Chronic Illness: helping partners cope with illness

THIS BLOG HAS MOVED TO A NEW WEBSITE

2018-09-27T18:34:00.000-07:00

Hello everyone. I am retiring this blog for good reasons. My book has gone into a second printing with a new title --

LOVE IN THE TIME OF CHRONIC ILLNESS: HOW TO FIGHT THE SICKNESS, NOT EACH OTHER

And this blog is moving to live on the website for the new book.

To visit the new website:

https://loveinthetimeofchronicillness.com/

To go directly to the blog:

https://loveinthetimeofchronicillness.com/blog-page/

I hope to see you there!

Special Photos of a Couple Living with Cancer

2018-06-04T15:43:00.002-07:00

Wonderful photographs done by Nancy Borowick of her two parents both diagnosed with cancer, as they go through treatments and daily life, side-by-side.

http://www.abc.net.au/news/health/2018-05-12/nancy-borowick-photo-exhibition-captures-parents-cancer-stories/9747420

These touching photos document the sadness, the closeness, the grief, and the humor that become all the more powerful when end of life is a near term reality.

Love in the Time of Chronic Illness

2018-06-01T17:25:00.000-07:00

I wanted to let you know about the reissue of my book under the new title: Love in the Time of Chronic Illness: How to Fight the Sickness Not Each Other.

The book is a deep and practical guide that helps couples, and any patient/caregiver partners, stay connected and grow even stronger as they cope with the powerful effects of illness or trauma.

If this experience touches you or someone you know, I encourage you to pre-order this book on Amazon, in either Kindle or print versions. While the book will officially be available on June 12, pre-ordering now will help boost the book's visibility.

Love in the Time of Chronic Illness has many stories from couples who share the lessons they learned about living with illness or trauma:

Frank and Linda, whose stroke caused them to rebalance their relationship in new ways
Abe who, after being Betty's primary caregiver for 30 years as multiple sclerosis stole more and more of her abilities, decided that he had to bring joy back into his life
Francis and Ted, who discovered levels of intimacy and authentic communication they believe would not have been possible without the intrusion of her chronic pain condition
Robin and Chuck, who used "active coping" to stay as close to "normal" as possible during his battle with cancer

You'll also read the advice of a range of experts who offer many strategies for coping - emotionally and practically. This new edition has an additional chapter for health care providers and health care organizations. Finally, strangely, for a book about such a serious subject, it's a good read.

So, if you know anyone going through this experience, or if you just want to help launch this important book, please pre-order the book on Amazon. If you like the book, I would greatly appreciate your writing a positive Amazon review. Here are some reviews that were written about the earlier version of this book.

Thank you for for anything you can do to help get the word out about Love in the Time of Chronic Illness. The experience touches so many of us, and this book can really help. If you can, please forward this email, and post on Facebook and Twitter.

Asking for Help

2018-05-20T13:11:00.000-07:00

Long ago I made a deal with my body that only one thing could go wrong at a time. In exchange, I would do my best to take care of my body by eating well, exercising regularly, and taking a handful of nutritional supplements every day. I was suckered. Over the years, my body reneged and multiple things started going wrong at the same time. There was nothing I could do about it.

Now, I am dealing with periodic flares of my chronic pain condition and am on the threshold of having hip replacement surgery. I think the hip and the pain condition made a secret deal to aggravate each other to ensure that I would take neither one for granted.

I'm anticipating that the hip surgery will relieve the hip pain, but may incite a flare up of my "normal" pain condition. Richard, my sweetie, reprimands me when I think this way and, momentarily, persuades me that this outcome is unlikely; and it is just as likely that I will be free of both pains.

But I know better. Or at least if I hold onto the likelihood of having a pain flare post surgery, I won't be surprised when it happens.

I am also anticipating that I'll be miserable and physically impaired for a while. I'll need help.

Richard is unwavering in his desire to be by my side and help in any way he can. It's usually me who plays the stoic card and thwarts his attempts.

But surgery is a big deal. I'm admitting I'll need his help.

The hitch is that a few weeks after my surgery he has plans to attend our soon to be nephew-in-law's bachelor party in Las Vegas. Richard and our nephew-in-law to be have a tight relationship. They can geek together and spout Monty Python lines at each other.

I fear that I still won't be able to manage without Richard when this weekend arrives. Can I ask him to forgo the celebration to stay home and help me navigate around the house and pick up my crutches when they fall? Can he go on the trip and enjoy himself knowing I'm at home, hurting, and struggling?

Asking for help gets so complicated. I want him to stay home with me, but don't want him to miss the party. He wants to go to the party, and be by my side. A bunch of impossibilities. If I ask him to stay, he will - no grudges attached. But I'll feel like a villain for depriving him of a good time. Even if he chooses to stay without my asking, I'll still feel like the great depriver.

A real conundrum. I think the only way through this is for each of us to honestly say what we want and be as understanding and as accommodating and loving as possible - whatever the outcome is. (Easy to say, right?)

What would you do? How do you deal with asking for help?

The Downs and the Ups

2017-10-29T17:51:00.001-07:00

It's been a long time since I've posted. Usually when I go into silent running mode it means I am having a massive pain relapse and all my attention is dedicated to trying to stay one nano-step ahead of the pain. It also usually means that I no longer feel a part of humanity. Nor can I bear being exposed to the normalcy of others' lives. Their ability to take things like walking, watching the World Series, opening a can of tuna fish, even breathing for granted feels like a mortal blow. So I sink into deep stealth mode.

But that's not what's been happening. Well, not entirely. I am climbing out of a pain relapse. But even at the outset, I knew that I would. And I am learning to befriend the panic that usually accompanies a relapse and offer it enough reassurance so that it calms down. I am not sure where my confidence came from. Maybe after seventeen years of downs and ups I have come to rely on the ups as much as I've always been certain of, even counting on, the downs.

What has remained constant, and needed, is someone outside of my twisted relationship with pain to hold the hope. Richard, my sweetie, has always been able to do that, with genuine, scientifically grounded belief. As a scientist and engineer, he always believed that there had to be something in this universe that would alleviate my pain. In the earlier days, I could only believe that the torture would be endless. I needed him to hold the hope because I didn't have any. In fact I didn't want to have any hope. Hope was just a tease, a false trail leading only to more pain. And if I climbed up to hope, the drop back down to more pain would be even sharper.

Now, it seems, we have entered a new phase. We seem to be holding the hope together. Richard is still an unwavering hope holder, his certainty made bolder by the many mini-recoveries I've had. I'm not even on the same planet as certainty; but I've got a few strands of hope wrapped around my heart.

Do you have a hope holder? Can you find a spot of hope inside yourself? How important do you think hope is?

Your Partner's Face

2017-04-10T12:21:00.000-07:00

As I climb back out of my recent pain relapse, my husband's face has become even more important to me. It's more than the face of a morning greeting or an offer to pick up Chinese take out on his way home.

His face has become my anchor and my mirror. His face is a reminder that there is a world with love in it beyond my pain. His face is like a siren's song calling me to emerge from my pain cocoon and join him in a moment of connection. When I see his face I can climb out of the nest I've constructed with pillows and blankets on our couch and know I have another direction I can head in.

His face is also my mirror. When I'm in pain, I can't look at myself in the bathroom mirror. All I see is pain and the fear of more pain. When I look at my husband's face I see more than his pain at my pain. I see flickers of hope. His hope becomes my lifeline to the possibility of less pain, even no pain. His hope tells me the story I want to hear but don't have the courage to write for myself.

Now that I am doing better and have once again tamed my pain with my reliable arsenal of meds and physical therapy, watching his face becomes less urgent, less like a lifeline and more like a place I like to live.

What do you see in your partner's face, whether you are the one with the illness or the one who is the caregiver? What do you look for when you look at your partners face? What is there, and what is missing?

F'''ing Relapse

2017-03-05T20:30:00.000-08:00

Aw come on, universe. I was doing so well. No pain and off meds for over a year. I had reached the point where I really thought pain was a past participle, no longer an active tense.

Then, for no reason at all, wham. F'''ing relapse. Full blown, Titanic crashing into an iceberg. Why? Why? Why? Why not?????

Maybe it was this nauseating political climate. Maybe it was thinking about my deceased parents and what they gave me and what they never gave me. Maybe a butterfly farted in India.

Back on meds. Most, but not all, of the meds I'd spent over a year tapering off of. I say not all the meds as if not having to use benzos now is a victory. Hah! A victory would be waking up and having it all be gone. Anything less is just more defeat.

And poor, poor Richard. He is bent over with helplessness watching me twist in pain. We play a lovely duet. I moan, and he stands still as a post waiting for my next move. Will I lean towards some comfort or slip deeper into pain spasms? If it's comfort, he breathes; if it's pain he grows more still until numbness or departing give him a break I cannot offer him.

We know this dance too well. We are blue ribbon winners in this pas de deux, or rather pas de douleur.

My heart breaks for him. His heart breaks for me. That's the kind of love that offers us a few rays of light and hope when pain's shadow once again spreads from horizon to horizon.

What Do You Do When Illness Interferes with Sex?

2017-02-23T11:36:00.000-08:00

A reader wrote in describing a not uncommon situation when you're living with illness. He, the well partner, wants to be sexual, and the ill partner doesn't or can't. He is asking for advice. I posted mine below. What advice do you have for him?
(btw - here's a link to a previous post and series of comments on this topic: http://insicknessinhealth.blogspot.com/2011/07/whatdo-you-do-when-illness-makes-sex.html)

He wrote:

"My wife has severe anxiety and depression. She refuses to take medication and as a result, finds it hard to even make it through the day. Sex is the last thing on her mind. We haven't had it in 11 months. I'm only 25! She doesn't even masturbate or anything often. Maybe twice in the last year. We have an open relationship so I have sex all the time, just not with her. I miss her so much in that way. She feels bad and acknowledges it but it sucks. Because it's not an illness I can physically see, sometimes I feel like she's being dramatic. Any advice is appreciated."

My advice to him was this:

"I can understand how unhappy it makes you to not be able to have sex with the woman you love. I can't help but wonder why she refuses to take medication. Is she in therapy? It's very real and very awful to live with your experience of life tainted by anxiety and depression. And sometimes having an invisible illness makes it even harder.

An important action is to stay in communication with her about this. She may not be interested in sex, but she is still your partner and talking about what is going on for you, and for her, is an important way to stay connected. Holding a problem together is better than having the problem keep you apart and in silence. A therapist may be helpful with this. And if she isn't open to therapy, you could still consider a therapist or yourself - you are hurting and deserve support and understanding.

Also - I wonder if there is any kind of touching she would consider, maybe enjoy. Non sexual massage? Back rubs? Foot massage? Starting in a non-sexual place may help defuse some of the tension around sex, and may lead to an ability to experience touch as enjoyable. I also wonder if she might be able to offer you some form of touch, non-sexual or sexual, even if she does not enjoy it herself.

Lead with love. No shame or blame. You are both hurting and are deserving of compassion."

To Talk or Not to Talk?

2016-10-29T13:05:00.000-07:00

Illness is such a thief. It can take away so much of what we consider vital. It can take away the peace that comes from taking the ordinary for granted. It can steal intimacy.

Illness depletes, but it also deposits. It inserts all kinds of emotions, at levels of intensity that can be blinding. Illness awakens fear of tragic loss, rage at incremental loss, loneliness, out of controlness, and perhaps worst of all, hopelessness.

For some, perhaps many partners, illness can also act like a laser slicing through the noise and the irrelevances of daily life and can illuminate the essential. There is nothing quite like illness to help you to sort through the chaff and the wheat and to decide what really matters. Hopefully that's love and compassion.

Talking to each other, and to others, is the lifeline. It helps us thread the morass and stay tied to something real that can be a source of connection, even comfort. Saying aloud to your partner, to your friend, what you hate, what you still love, what you want, what is still possible, where you keep your hope, how you struggle with you hopelessness -- can be sustenance.

We fear that if we speak our inner truths aloud to our partner (be they well or ill) that it would only add to the already intolerable burden. That it would cause harm. This fear comes from the connection that still exists, from the desire to serve and to help. The irony is that in not talking about what is growing larger inside, you become more distant and wind up focusing on superficialities at a time when you need each other the most.

This is not a call to blurt it all out, with all the cutting edges sharpened.

Find your compassion for your partner and for yourself. Find a moment when there is time and quiet. Listen and ask as much as you speak. Let your love seep in wherever possible.

One of Richard's and my mantras is that what doesn't get spoken doesn't go away. It just goes underground and gets acted out instead of understood.

Have you and your partner found ways to have the difficult, reconnecting conversations? What have you tried? What's been the impact?

Love Through Cancer

2016-09-10T14:43:00.000-07:00

I've read articles about couples who commit or marry, and soon afterwards one partner receives a cancer diagnosis. And other couples who commit or marry knowing that one has cancer. Some of them tell stories of reaching levels of accelerated intimacy and authenticity that they believe wouldn't have been possible had it not been for the illness. Others get lost in the maelstrom of hospitals and intervention, and they live their life at the crossroads of chemo and uncertainty.

I now know two people who are at the beginning of their love and cancer story. They were both married before, and both lost their spouses to illness. They know the caregiver role well. Now he knows the patient role.

They met about a year ago, and their rhythms were a great match. They are both smart, funny, and welcoming. She's animated and active; he's more pensive and accommodating. He wraps her in his larger bear of a body, and she curls, catlike, in his arms. They suit each other. And they have come to love each other.

Several months ago he was diagnosed with cancer. In fact with two different cancers. Sounds bad, but the doctors are hopeful surgery can eliminate both -- once the tumors are shrunk though chemo and radiation to a surgical size.

They recently decided to get married. I haven't asked them why. I imagine it has to do with love, and giving, and caregiving, and a vision of hope. I applaud them for doing the normal thing in a situation of such............

Readers of this blog have deep experience with illness and its demands, and the hard, and often special paths it takes us down. What thoughts or guidance would you offer this couple?

When Illness Changes Intimacy

2016-08-05T10:11:00.000-07:00

I wrote a post about this topic a while ago, and readers are still offering comments. I think this is the case because illness and sex is a common but often closeted aspect of living with a serious health condition. When illness becomes the third partner in the relationship, it infiltrates into the living room, the check book, the social calendar, and the bedroom. If the couple is older, or younger, the intimacy-illness equation gets even more complicated.

I am linking to the original post. But more important than the post itself are the comments. I thank all those who shared their situations and heartaches, and solutions. I hope other readers find community and some comfort in knowing that we are not alone. Here goes:

"What do you do when your partner is no longer interested in or capable of sexual intimacy with you?

Illness takes many tolls, on both partners. One of them is too often sexual intimacy. Medications, pain, and exhaustion can not only turn a libido off, but can make intercourse painful for the ill partner. The well partner may be just too drained after a long day of caregiving, working, caring for kids, and running the household to want anything more intimate than falling asleep side-by-side. And the shift illness produces in some partner relationships -- turning a bond of equals into one of caregiver and patient -- can make sex feel like a taboo."

http://insicknessinhealth.blogspot.com/2011/07/whatdo-you-do-when-illness-makes-sex.html

Couples Survive Cancer More than Singles

2016-06-08T07:42:00.001-07:00

I thought this article was worth posting in its entirety (please forgive formatting issues).

Why being married could stop you dying of cancer: Sufferers have 'something to live for' if they have a spouse

Analysis of 60,000 patients showed singletons were more likely to die
Patients' other halves are more likely to 'hassle' them to see a doctor
For one blood cancer the unmarried had a 43 per cent higher death rate

By SOPHIE BORLAND HEALTH EDITOR IN CHICAGO FOR THE DAILY MAIL

PUBLISHED: 18:06 EST, 7 June 2016 | UPDATED: 03:00 EST, 8 June 2016

Being married increases your chances of beating cancer, experts have revealed.

An analysis of 60,000 patients over ten years found single or unmarried patients with the disease were a fifth more likely to die.

Researchers say having a spouse or family gives sufferers ‘something to live for’ and makes them far more determined to beat the illness.

Patients’ other halves – particularly wives – are more likely to ‘hassle’ them to see a doctor about any worrying symptoms or remind them to go to chemotherapy appointments.

Being married increases the risk of beating cancer. Researchers said having a spouse or family gives sufferers ‘something to live for’ and makes them far more determined to beat the illness

Researchers from the University of California in San Diego presented their findings at the American Society for Clinical Oncology conference this week. They looked at the records of 60,000 men and women with leukaemia and other types of blood cancer between 2000 and 2009.

On average, patients who were not married were 21 per cent more likely to die than their married counterparts.

But among those with follicular lymphoma – a rare blood cancer – the unmarried had a 43 per cent higher chance of dying. And the figure was 37 per cent for Hodgkin lymphoma sufferers.

‘If you are single you don’t have someone at home nagging at you to get checked out.

‘This is particularly true with men. Women tend to have more support even if they are single.’

He added: ‘Married people and people with families are more likely to stick to treatment. They have a support system making them go to chemo, reminding them to take their medication.

‘They are also more motivated to seek out healthcare. To put it bluntly, they have something to live for. These results show that health services need to take more care of single patients – they need to be the surrogate for a spouse.

MARRIED PEOPLE ARE ALSO MORE LIKELY TO SURVIVE A HEART ATTACK

Married people are more likely to survive a heart attack, according to British research.

Having a spouse to care for them ‘in sickness and in health’ improves patients’ survival chances by 14 per cent, experts found.

They were also, on average, likely to spend two fewer days in hospital after an attack.

Scientists studied more than 25,000 people with a heart attack diagnosis over a 13-year period, drawn from a database of more than one million hospital patients.

Married people are more likely to survive a heart attack, a study has found. Having a spouse to care for them ‘in sickness and in health’ improves patients’ survival chances by 14 per cent

The researchers, from Aston Medical School and the University of East Anglia, suggested marital partners may offer the kind of physical and emotional support that bolsters patients’ determination to live. Presenting results at the British Cardiovascular Society conference in Manchester yesterday, the UEA’s Dr Nicholas Gollop said: ‘Our results should not be a cause for concern for single people who have had a heart attack.

‘But they should certainly be a reminder to the medical community of the importance of considering the support a heart attack survivor will get once they are discharged.’

There could be financial implications for the NHS as the average cost per day for patients on a surgical ward is £400. Reducing length of stays could save £10 million.

A recent British Heart Foundation study found one in three heart attack survivors has suffered anxiety or depression. Dr Mike Knapton, BHF associate medical director, said: ‘A heart attack can have both devastating physical and psychological effects … These findings suggest the support offered by a spouse can have a beneficial effect on heart attack survivors, perhaps helping to minimise the impact of a heart attack.

‘But when you have your heart attack, whether you’re married or not, it’s important to remember that you are not alone … a cardiac rehabilitation course, for example, will help you to recover physically, psychologically, and also help you to meet people who know what you’ve been through.’

About 188,000 people a year are admitted to UK hospitals as a result of a heart attack.

‘Single people often don’t look after themselves.’

The university’s Professor Maria Elena Martinez, who was also involved in the study, said: ‘Being single should be a red flag for doctors. If a cancer patient comes in without a family member or spouse it should be a warning sign.

‘Medical staff need to ask the patient about the support at home. Doctors need to go that little bit extra with single patients.’

Patients’ other halves – particularly wives – are more likely to ‘hassle’ them to see a doctor, researchers said

Previous research has shown that married couples are more likely to survive heart attacks, overcome high-risk surgery and also tend to live longer.

Adrienne Betteley, interim head of health and social care at the charity Macmillan Cancer Support, said: ‘We know that a cancer diagnosis can leave people feeling very lonely and that this can have a detrimental effect on their lives, with many forced to skip meals or attend vital appointments alone. At worst it can result in patients refusing treatment altogether.’

Cancer Research UK’s senior clinical adviser, Professor Arnie Purushotham, said it is ‘unclear why married people in this study seem to have better outcomes’.

But he added: ‘It may be that cancer patients who have close support of partners do better and this may be due to sticking with their treatment better and a network of social support. Developing such a network of support may benefit all cancer patients.’

Marriage May Help Partners Survive Cancer

2016-04-16T15:34:00.002-07:00

From an article in the Chicago Tribune:

"Married people seem to have a marked survival advantage, the researchers found: Single men with cancer had a death rate 27 percent higher than it was for married male patients, while the death rate for single female patients was 19 percent higher than their married counterparts.......What's more, this advantage appears to rely solely on the emotional bonds of matrimony and not the financial advantages that marriage offers......"

The article highlights the practical help well partners offer -- driving, shopping, reminders to take medication -- in addition to the emotional support that comes from having a loving, listening presence.

But the article, and the research it's based on, don't go far enough. It's not just that the presence of a loving partner can help with the fight against cancer. It's that the challenges cancer (and other illnesses) brings into the relationship can serve as a catalyst to finding more truthful communication and a deepened connection. Many of the couples we interviewed for our book said that they reached levels of intimacy that would not have been possible had it not been for the presence of illness.

The relationship has the potential to heal - emotionally, spiritually, and now there's research that shows that a physical healing can happen too.

What Happens to the Caregiver When the Ill Partner Needs Surgery?

2016-03-26T13:54:00.002-07:00

A dear friend had an episode of dizziness and a touch of confusion the other day. He is now scheduled for open heart surgery. You never know when a wound that's slow to heal or a bruise that just grows worse or a cough that lasts for months will wind up being a diagnosis you really don't want to hear. The point is not to live in fear; but to really live.

My friend has been getting MRIs and ultra sounds, talking with a multitude of specialists, touring cardiac ICUs of local hospitals. Every clinician he meets is friendly and reassuring. All his questions get answered. He is being well looked after.

His wife, however, is relatively invisible to these excellent professionals. She is an appendage, a steady hand to hold his frightened one. Not one of these very excellent clinicians asked her if she had any questions, much less how she is doing. And much less, how they are doing coping with this crisis together.

The partner in these situations is too often, sadly, a sidebar. But a side bar of whom much is expected. The partner is expected to be fully present during the hospitalization and fully responsible for the heavy load of caregiving that will be needed when the patient is back home. And the caregiver must give care whether or not she/he is exhausted from sitting for days at the hospital bedside, missing sleep, and eating badly. And she/he must take on the heavy care load at home that often involves helping the patient move, dress, shower, get to doctors' appointments, in addition to grocery shopping, laundry, child care, and going to work. And all this is on top of the caregiver's emotional exhaustion that comes from fearing the worst, watching her sweetie in pain, and feeling illegitimate for having her/his own needs and frustrations.

How much more bearable this load would be if health care professionals understood that their patient's outcome will be strengthened or weakened depending on the resilience of the caregiver and of the relationship between the patient and caregiver. If the caregiver sinks, the patient will sink even lower. If the caregiver feels recognized and appreciated by providers, she/he will transfer that support back into the caregiving relationship.

Of course, not all providers neglect the caregiver. And not all caregivers can, or want to, serve as caregivers. I would like to hear about your experiences as the caregiver at a time when your partner needed hospitalization. Did you feel recognized, or invisible?

Advice for Couples Living with Cancer

2016-02-24T08:33:00.000-08:00

From an article by a therapist at CTCA -- advice for couples living with cancer. He hits many nails right on the head:

1. Keep communication open: Communication may not always mean agreeing, but having a goal of being honest with one another is important.
2. Rely on developed skills: Most couples do not realize that they already have the tools to cope with cancer based on previous crises. Remembering how they overcame difficult situations in the past may help a couple develop coping strategies in the current situation.
3. Allow room for a "time out": Cancer can cause feelings of anger and depression. Allow your partner to feel their emotions and be comfortable with him / her taking a moment alone. The end goal is to fight the cancer, not one another.
4. Remain intimate: Intimacy does not necessarily equal sex. In fact, cancer treatment side effects often make sex uncomfortable. Instead, intimacy means spending time together - holding hands, reading together, talking, etc.
5. Find time to do the things you love: Take time to play and have fun together - fishing, going to a movie, playing a board game, or even watching a sports game on TV.
6. Boost your support network: When a significant other is diagnosed with cancer, the caregiver is tasked with extra responsibilities. Don't be afraid to ask friends and family for help, giving your partner a chance to take a break and process his or her emotions.
7. Find other couples in a similar situation: These couples, often found in support groups, may understand what you are going through. Don't be afraid to seek tips and advice from others, as well as share what you have found works in your own relationship while recognizing that each couple's experience is unique.
8. Keep each other accountable: Cancer causes stress, and stress compromises the immune system. Remind each other to participate in healthy activities to remain resilient - getting plenty of rest, eating nutritious meals and exercising.
9. Don't blame each other: Many people blame themselves or their loved ones for getting cancer, including being too stressed out, working too hard, or smoking. Realize there are many factors that contribute to cancer, not just one.
10. Speak with a therapist: Speaking with a therapist, who is unbiased and has experience with other cancer patients, can help couples express their emotions, confirm that the feelings they are experiencing are normal, and help provide useful coping tools.

Staying Close to Normal

2016-02-18T11:52:00.001-08:00

Illness is such a thief. It steals so many pieces of your life -- time, safety, even intimacy. It separates you from the "healthies" -- those who don't even know what a privilege it is to take their body for granted; those who don't couch every invitation with, "If I'm feeling well enough...."

Sylvia Plath's character, Esther, in her miraculous book The Bell Jar, describes her episodes of madness as feeling as if she were trapped inside an airless jar that distorts her view of the world and interferes with her ability to connect with others.

I've often felt that my pain condition was my bell jar, forcing me into a box too small and too rough to accommodate my real life. As if I still had a real life, an experience apart from illness.

Yet as much as I mourned my losses, the very fact that I mourned kept me tied to the experience of normalcy. I could not travel to Paris. I could grieve for the loss of Paris. Yet I kept thinking about Paris. And deep, deep inside, without language or image, a part of me quietly hoped I would once again walk those majestic streets.

Ironically, that secret longing for Paris kept me in life. It kept me tied to normal. And that tie, like the thread Ariande gave her beloved Theseus so he could find his way out of the Minotaur's labyrinth, helped me find my way out of the box, sometimes. The streets and smells and tastes and beauty of Paris were still alive in my imagination and in my memory -- beyond the reaches of illness.

In September of this year, Richard and I spent ten days in Paris. He understood what it meant for me to be there. And his understanding sweetened the experience.

What ties you to normal? What people, memories, experiences, dreams help you know that you are in life, and not inside that bell jar?

Illness and Sex

2016-02-01T10:39:00.004-08:00

A reader recently posted this as a comment to my article on What Do You Do When Illness Makes Sex Impossible. I am reposting it here because I think his situation is a common one, that often stays hidden because it is fraught with emotions and complications. I'm also posting my response as a comment. I encourage you to share your stories and approaches to the challenge of sex and illness.

Anonymous said...

I am a 66 year old male and married to a 62 year old women. We have been married almost 20 years. We had a sex life that was a few times a month until she got sick 7 years ago. She had cervical cancer. Went thru chemo and radiation, and a hysterectomy. Then cancer returned and about 5 years ago she had a 9 and a half hour surgery that took everything including her bladder. She voids her urine from her side , and has an ostomy bag. Needless to say normal intercourse is not possible. And other things really aren't either. She uses a wheelchair and Walker to get around . Her sexual interest is 0 and require a good bit of care which I do.
I have reached a point where I am considering looking for a lover. It's not that I don't love my wife but I still have a need for intimacy .
Do you have any advice or suggestions?

Who is the Patient and Who is the Caregiver?

2016-01-04T16:05:00.000-08:00

I just read (another) story, this time in the Boston Globe, about a couple falling in love, starting down the path toward a rosy future, then finding the lump. You know the lump I mean. It can be cancer, multiple sclerosis, a traumatic brain injury, Alzheimer's, a stroke, pain. Anything can qualify as a lump as long as it's a serious health condition that derails that rosy, idealized future. An unassailable breach between what was and what will be. A one way ticket to what Susan Sontag called "the kingdom of the sick."

In this story, he stuck by her side as they tried to achieve normal for as long as possible. It wasn't too long a journey. And that is both a blessing and a curse. A blessing because they could love and hold onto each other without suffering the exhaustion and dullness long term care forces on patient and caregiver. A curse, because they lost too quickly the future they never were going to have a chance to have, and the loving kindness they really did have.

One line in the article struck me hard:
"Those outside of relationships in which a serious illness is present sometimes want a simple story: the patient and the saint."

I think we need to redefine these terms. Is the patient the person in whose body the illness resides? Or is the patient the relationship itself which gets unravelled and requires continuous monitoring and re-ravelling? Or is the caregiver also a patient, someone who is an equal-but-different victim of the invading disease? And doesn't each partner, to the extent he/she can, try to provide some caregiving to the other? Even it it's in the form of a smile or an expression of gratitude. We need to remember that while the disease lives in one person's body, it is two lives that get disrupted, and two whole beings who suffer.

The patient suffers a terrible identity loss, along with the pain and physical demands of the illness. The caregiver suffers an existential loss (that is, her existence as she knew it is gone), along with a level of physical and emotional depletion no one on the outside can imagine. The caregiver also suffers the additional anguish of being unable to make the patient well again. I've lived in both shoes, and I can tell you, I'd rather be the patient.

So, let's not make it easy for outsiders who want that simple story of patient and saint. When they ask, "How are you doing?" Tell them the truth. Tell them that this is not the life you expected. That it is harder than words can express. That sometimes you wish the final curtain would drop already. That other times you feel such love and intimacy with your partner -- a level of connectedness that would not have been achieved had it not been for the pressure of the illness. And then thank them for their concern.

Startling Statistic About the Effect of Illness on Relationships

2015-12-21T14:58:00.003-08:00

I just read some startling statistics. I don't know if they're completely accurate, but they seem at least ballpark right.

In the general population, the rate of divorce is around 40%. For couples living with illness, the rate jumps to 75%.

So the question is: Why is the rate of separation/divorce so much higher for couples living with illness?

There is the obvious answer. Living with illness is hard for everybody.

True, but insufficient. When we look at why living with illness so hard that it destroys the bonds of too many relationships, let's go beyond interpersonal answers and take a bigger systems perspective.

Our health care system is disease focused, not person focused, much less relationship focused. Yes some hospitals and doctors are more patient-centered; but in too many you are still the breast cancer in room 120 or the Crohn's in room 347. And even if you are called by name, the focus is on the body part and the disease, not on your experience or identity. The aim is to cure the disease -- which is essential. But the aim should also be to heal the whole person, and that includes the primary relationship.

This does not mean that clinicians should start carry crystals along with stethoscopes. It does mean that clinicians should support all of the patient's strengths -- this includes the caregiver, and the patient/caregiver relationship. Too often the caregiver does not even get introduced and is left to sit in the corner. And when was the last time, or any time, that the clinician said something like, "I know this is hard on both of you. How are you coping together?"

And let's not forget that the health care system is overloaded and under-resourced and clinicians are expected to move on to the next patient every 7-15 minutes. And that 25.3% of every health care dollar goes to administrative costs. So clinicians are not supported, or trained, to care about the patient/caregiver relationship.

This all means that the full brunt of one of the most powerful of all life stressors, illness, falls squarely and entirely on the shoulders of the patient and caregiver. There is little formal support from the health care system, and little governmental or societal support to help the partners. Yes there are information, advocacy, even respite help. But not enough to counterbalance the overwhelming 24x7 impact of illness on the patient and caregiver relationship.

No wonder the separation and divorce rates are so high for couples living with illness.

A (Belated) Wish For National Family Caregivers Month

2015-12-09T11:43:00.000-08:00

November was National Family Caregivers Month.

One of my dearest friends has suddenly become a caregiver. Literally overnight. No ramp up, or rather ramp down. No slow decline foretelling a dark diagnosis. No creep of symptoms. Just, wham!

She was--is--was--is a brilliant therapist and program director at a human services agency. I don't know what verb tense to use any more because, while she is still all those things, and her talents and wisdom have not diminished, she is now, more than anything, a caregiver for her husband of 40+ years who suffered a severe stroke that paralyzed half of his body.

As long as she is awake, he is in the forefront of her mind. She carries him with her to every meeting and errand. He occupies her frontal lobe, and the creative thinking and problem solving abilities that she is accustomed to using to great success in her work are now locked onto him and his every movement, and lack of movement.

She has learned a new set of skills: how to help him transfer from bed to wheelchair and back to bed; how to read to him the books about history that he loves and she abhors until he finally falls asleep at night; how to surround his anxiety with compassion and hope, while quelling her own terrors and growing claustrophobia at how much their world has shrunk.

The physical labor is exhausting. But the mental and emotional demands can be defeating. He is now the patient, and his efforts at recovery take precedence. This means that the house is remodeled to accommodate his limitations, their time moulds to his needs, and his feelings come first. She must construct a facade that is brave without minimizing the obstacles; one that can absorb his anxieties, anger, frustrations, despondency, and unrealistic hopes without flinching. All the while arresting her own corresponding feelings so that she never tips the emotional scales away from his ability to sustain hope.

I am not writing about his horrific transformation from partner to patient. Nor am I emphasizing how much he is still his deep thinking and deeply caring self. He reaches out to her with his good arm and surrounds her, as best as he can, with his enduring love and appreciation.

No, her physical and emotional depletion are not because her partner ignores her or doesn't appreciate her experience and efforts. Her emotional and physical depletion just....are. They are not because she is trying too hard or not giving herself any respite or not using all the massage gift coupons friends have been giving her. They are just the inevitable sackcloth that caregivers wear.

So November was family caregiver month. Articles offer appreciation for the hardships caregivers experience and advise caregivers to take care of themselves, to de-stress, to take time off, to connect with friends and family.

All I can offer is this: I see you. I know what it's like for you. I know there are days you celebrate and days you want to pull all the plugs on everything. I offer you my deepest, most heart-mind-soul felt gratitude. I offer this to my own caregiver/husband, and to all other caregivers. I wish you peace.

Just Got Back From Vacation

2015-11-08T09:52:00.000-08:00

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)

https://youtu.be/kQhaMnY1ku4?t=933

Vacation

2015-09-16T20:37:00.001-07:00

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.

Elderly Couple Holds Hands Across Their Hospital Beds

2015-08-10T08:54:00.001-07:00

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?

The Last Straw: What Do You Do When You Reach Your Breaking Point? Part 2

2015-07-17T11:44:00.000-07:00

Part 2:

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.

The Last Straw: What Do You Do When You Reach Your Breaking Point? Part 1

2015-07-06T10:20:00.004-07:00

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.