Wednesday, November 26, 2014

Thanksgiving Flare Up

It seems that my pain tends to pick the holiday season to remind me of its presence.  I have learned not to call these episodes relapses, but rather to call them flare ups.  The connotation is that if something can flare up, it can slide back down.  Whereas relapse implies defeat.

Thanksgiving requires gratitude.  My inbox is filled with messages from airlines, charities, clothing stores, shoe stores -- all letting me know what they are thankful for, mostly for my patronage.  So, how can I find something to be thankful about while in the middle of a relapse....oops, I mean flare up.

I recently read a blog post that contained this gem:
"...once you reach a level of healing, no matter the intensity of the flare, your body can, and will get back to that level."

This solves my gratitude dilemma. I am miserable and yes, angry, that I am having a flare up.  But I am indeed grateful that I know what it's like to be without pain, for months at a stretch.  And I am hopeful that I will get back to that place of ease.

I am, of course, thankful for my sweetie, Richard.  He is the one who reminds me that "that was then (unrelenting pain) and this is now (mostly OK, with some flare ups )."  

I wish you all Thanksgiving with a lot to be thankful for.  And I'd be interested in hearing what brings out your gratitude.

Thursday, November 13, 2014

Being Together.....Apart

Richard is on the west coast; and I am on the east coast.  And of course, my pain picks the week we are apart to exercise its right to flare up whenever it wants.

Richard is an essential part of my coping strategy.  I can just be in pain with him without having to pretend I'm doing fine.  He asks me, "How are you?" I answer, "Not good."  I don't say that to my work colleagues or my outermost friends (my innermost friends I tell).  To them I say, "Not so bad," or "Pretty OK."  I don't want to have to explain anything to them or accept their sympathy.  It's easier not to tell the truth.

I also count on Richard to remind me that this is just a flare up and not a cataclysm.  That I now have tools at my disposal for coping with pain that I did not have ten years ago.  He needs to remind me of this because when I have a flare up, time collapses, and my pain PTSD awakens.  And ten years ago becomes ten minutes ago, and my fear in the present is overburdened with memories of the darkest times when pain had no limits.

And I count on him to make me laugh and to annoy me and to be so sweet that I get overwhelmed.  He is my bedrock, and it's hard to have pain visit when my bedrock is 3000 miles away.

But then I remember that bedrock doesn't get lost when there's geographic separation.  Bedrock is ubiquitous.  Bedrock persists and can support me, no matter where or when.

And Richard sends me texts throughout the day - telling me about the ham and cheese croissant he ate, and about the small red dog who looked like our old dog; and that he is sending me his strength and love to lean on.

How do you and your partner manage to cope with illness when one of you is away?  How do you be together when you're apart?

Saturday, November 8, 2014

The Caregiver

I'm about to give a talk to a group of family/friend caregivers and decided to look back into this blog's history to see if there was anything I could include in my talk.  I found the piece below.  It took me back a year and a half ago when Richard, my sweetie, had open heart surgery and I went from being the designated patient to becoming his caregiver.  I realized then that, if I could choose, I'd rather be the ill partner than the well caregiving partner having to watch my beloved suffer and be unable to make it all go away.


Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience

How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When family and community expect you to sacrifice endlessly for his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless.

How profoundly sweet it is to know that you are helping, you are making his life worth living, even though you can't make him well.  You are making him better.  How very special it is to have found that, through illness, you have been able to rediscover how much you truly love each other.

Saturday, October 25, 2014

12 Things a Marriage Is

This list is from a piece in the Huffington Post.  I think it applies to all couples who are in a committed relationship, not just formally married ones.  I have highlighted the items that are relevant to those of us living with illness in our relationship.

12 Things That Marriage Is:
1. Marriage is the potential for an intense, deep and diverse intimacy. Sexual. Emotional. Relational.
2. Marriage is knowing someone has your back. Always. You have theirs. It's about interdependence.
3. Marriage is realizing that you have been seen in your worst times, and that you are still loved. There's an overriding sense of gratitude and security.
4. Marriage is sharing old jokes. Or some story that may be told over and over but it still makes you laugh 'til you are left gasping for breath.
5. Marriage is getting teary-eyed together.
6. Marriage is thinking about the other one not being there anymore. And not being able to think about it.
7. Marriage is getting irritated by the things that always irritate you. Have irritated you for 24 years. Will irritate you for 24 more. And tolerating it because it is way overbalanced by the good stuff.
8. Marriage is not being able to wait to get home to share some little something.
9. Marriage is wishing you were the one having the operation. Or the illness. Not him.
10. Marriage is sometimes fighting. Trying to slowly learn to fight more fairly. To apologize. To listen. To learn. To find resolution.
11. Marriage is about vulnerability. Giving someone the right to hurt or disappoint you. While simultaneously giving that someone the opportunity to bring you tremendous joy and laughter.
12. Marriage is a promise. A vow. To try the hardest you have ever tried in your life. Marriage is a place for the achievement of a personal integrity like no other.

#6 and #9 really hit home for me.  

#6:  I know I should become more competent in some of the areas Richard has expertise -- like setting up a universal remote for the TV, programming our Nest thermostats, keeping meticulous financial records on templates he designed.  But every time I think of approaching him for lessons in these areas, I back down.  Not because the tasks are onerous for me (although they are), but because my taking them on foretells a time when Richard is not there to do them himself.  And I can't bear thinking about that.

#9:  Sixteen months ago, Richard had open heart surgery and I got to be the caregiver, for a change.  I was not exhausted by the tasks I had to do.  Nor did I feel the least bit burdened.  What I could not tolerate was the depth of my own helplessness -- no matter what I did, I could not make him better, nor could I force his pain to go away.  I realized I'd rather be the patient than be the caregiver unable to cure my sweetie.

What are your thoughts about #6 and #9?  Do you ever imagine losing your partner? Do you ever wish to change places with your partner (whether your the ill or well partner)?

Wednesday, October 15, 2014

To Be (Intimate) or Not to Be (Intimate)

As Hamlet said about a quarter of the way into his famous soliloquy"  "...'tis a consummation devoutly to be wish'd..."

Hamlet was talking about death.  That's not the consummation I have on my mind.  I am thinking about physical intimacy with one's partner.  Many couples think that the switch that controls intimacy lives in the genitals and is binary - either on or off, either intercourse or watching a late night TV comedy show.

That switch actually lives in the brain, with hundreds of thousands of outposts permeating the skin.  The brain is the key sexual organ.  It takes its cues from the body, but ultimately the brain decides how much physical contact it wants and when it wants it.

For many couples living with illness, sexual intimacy is problematic.  They physicality of the act may not be possible, may cause pain, or may require activity that is just not on a radar screen already overflowing with medications, side effects, exhaustion, and anxiety.

However, sex is also a bridge.  A way of bypassing practical and emotional turbulence and surrendering to the flow of the physical.  An escape.  A way of connecting and feeling greater than you are separately - beyond the reach of what Hamlet calls the "mortal coil."  Indeed, a consummation devoutly to be wish'd.

So what do you do when illness interferes with physical intimacy, but the yearning for the passion and liberation of sexual connection is still active.  

Of course you wonder -- how can couples be intimate without touching?  The solution lies in using the brain as the sexual organ it is.

Your brain can make anything into something else.  Just close your eyes and imagine a perfect lemon. See the textured skin and the bright yellow color.  Smell the fresh lemony fragrance.  Now imagine biting into it.  Most people, as they imagine the bite, pucker their mouths at the imagined tart flavor.  If we can do all this by putting our minds to a lemon, think what we can do if we just imagine playing sensually with our partner and a sponge or a pile of clean laundry.

Both partners, through the words they use with each other and the sensuousness they can bring to everyday activities, can use their brain to create the feeling of the bedroom anywhere, any time.

Here are some ideas:

1)  You can really look at each other.  You can spend more than .05 seconds glancing at each other's face.  Linger on the the face.  Notice the contours, the textures.  Imagine you are touching through eye contact.  This can be a powerful catalyst to intimacy.

2) You can use language to show that you truly see each other.  In addition to saying, "I love you," you can say, "You are beautiful to me," or "It makes me smile to see you smile."  Use words to convey that you are "home" to each other.  There is no script.  Don't assume that your partner knows what's in your heart.  Speak it out loud.

Of course there are not only loving sentiments in your heart.  You may be carrying anger, fear, and despair.  If you can, put those feelings in a separate compartment, temporarily.  Dig down to wherever you shelter your love and compassion for your partner.  Give voice to that.  There will be other times to discuss the hard stuff.

3)  Coping with the demands of illness can be exhausting and demanding -- both states are antithetical to relaxing and connecting.  Playing together can counterbalance that tension and can lead to emotional intimacy.  Partners can convert the mundane into a playful event.  Loading the dishwasher or cooking together or wandering the aisles of Costco can be a chore, or it can be a time of silliness and connection.  Imagine how children would behave if engaged in any of these activities.  The dishwasher is a puzzle to put together.  Cooking is mud play.  Wandering the aisles of Costco is finding Neverland.  Try not to focus on accomplishing, but rather on enjoying - the activity and each other.

One woman I interviewed for our book said that one of the biggest brain turn-ons she had occurred when her husband was in intensive care after having had open heart surgery.  She was laying on the couch in his hospital room suffering her own pain flares and trying to quell them with an ice pack.  She said to him, "I feel so useless.  I wish there were more I could do for you."  He responded, "Just having you here helps me breath easier."   She said that this was a truly intimate connection, even more intimate than some of their physical love-making.

For some people brain intimacy can be enough, or can be all their physical condition will permit.  For others, brain intimacy can be the runway for physical contact.  In future posts I hope to explore how couples can be physically intimate when illness prevents intercourse.

How do you and your partner "do" intimacy when illness interferes with physical love-making?  How do you use your brain to be intimate with your partner?

Tuesday, September 30, 2014

Coping with the Ups and Downs

My pain condition has a circadian rhythm of its own design.

I used to think pain spikes correlated with increased stress or shifts in the weather or travel.  And that if I could only control for these variables, I could control the pain.  Over the fifteen years I have been living with pain and studying its habits, I now conclude that its vicissitudes are of its own making; or are so multifactorial that any search for a root cause is like trying to find a snow flake in a blizzard.

Pain spikes and declines are just as likely to be connected to the chocolate bar I inhaled three months ago or to a butterfly belching in China.  In other words, I don't really have a clue about why the pain rises and subsides or what gravitational pull it is responding to.

Right now, I am in a period of wellness, of absence of pain.  Hurray!

The tricky part is that I still have the habits my illness taught me.  These habits include:
  • Not making plans to socialize
  • Not buying advance tickets to a concert or play
  • Not exerting scarce energy on cooking or house cleaning
  • Not making travel plans
  • Accepting only shorter term work projects
  • Relying on my sweetie to run errands
  • Relying on my sweetie to comfort me
  • Relying on my sweetie to hold the hope of healing
  • Relying on my sweetie to be the bridge to the outside world
  • Relying on my sweetie...
  • Relying on my sweetie...
In short - counting on my sweetie to be my guardian and isolating myself from the world.

This is neither healthy (for either of us), nor sustainable.  I have been trying to kick the habit of excessive self protection and spousal dependency.  I have been positive self talking myself into more risky behaviors like:
  • Walking alone the endless aisles of the new Wegmans super-store that just opened in my neighborhood
  • Tangling with my health insurance provider to get them to pay their fair share of an out-of-network expense
  • Making a dinner reservation three weeks away
  • Saying, "I can," before I say, "I can't."
  • Doing whatever I can do to make my sweetie's day a little sweeter
Does your health condition (or your partner's) have its up and down swings?  How do you shift between down-time coping behaviors and up-time wellness behaviors?

Friday, August 29, 2014

Learning to Redirect Your Anger

The following is a guest post by a fellow traveler on the road of couples dealing with illness.  Helena Madsen is a wise woman who is the founder of Chronic Marriage whose mission is to help couples with chronic illness build extraordinary marriages.   Helena is a wife, mother, counselor, and writer who lives with Limb Girdle Muscular Dystrophy.  Get her free resource guide:  For Better or Worse: A Guide to Talking About Illness in Your Marriage.  

In this guest post, Helena offers perspective and advice about managing anger in your relationship.

If there’s one emotion that seems to surface repeatedly in marriages with chronic illness, it’s anger!

You’re angry at your illness and all that you’ve lost – strength, vitality, roles and routines and specific plans for the future. 
You’re angry at your spouse for not always understanding what you need.    
You’re angry that others view you as less dependable or competent because of your limitations. 
Your spouse is angry that his wife is no longer interested in sexual intimacy.
He’s angry that most of the household and parenting duties now fall on his shoulders.
He’s angry that he can’t alleviate your physical pain no matter how hard he tries. 
Both of you have plenty of reasons to be angry.

Anger is not bad.  It’s merely an emotion and a signal that something is uncomfortable, wrong, or undesirable. 

Unfortunately, many people do not process their anger well in the heat of the moment.  When you’re angry at the illness, you often rage at your spouse instead.  Misdirected anger causes you to wound the person you love the most – your mate. Repeatedly lashing out does two things – it weakens your relationship and makes you appear unsafe to your spouse. Both are tragedies. 

Is there a better way to handle anger over your illness?  Yes. 

The most effective way is to distance yourself from the illness.
By that I mean regard your illness as a distinct entity apart from yourself. View it as the third party in your marriage with its own needs and demands.

Marsha and Bob struggled with misdirected anger for years after she was diagnosed with Multiple Sclerosis (MS).  Whenever Bob expressed any frustration with Marsha’s illness, Marsha interpreted it as a direct affront on her character.  The message she received was that she was somehow a failure or disappointment for having MS.  Feeling hurt, Marsha would unleash her anger on Bob who would then strike back. 

Neither Marsha nor Bob knew how to talk about the illness in a healthy way.  Most of the time, they chose not to talk about it until they got to the point where their pain was intense enough that it threatened to swallow them up. 

In counseling, they learned how to take a step back and view the MS as separate from themselves.  Their counselor suggested they view it as an uninvited yet permanent guest in their home.  This idea of a demanding houseguest who refuses to leave was so helpful to Marsha and Bob that they decided to give him a name - George.  Whenever one of them was angry or frustrated with the MS, they gave themselves (and each other) permission to express their true feelings about George.  It allowed them to remain true to themselves and yet not wound each other at the same time.    We may view naming an illness George as silly but for Marsha and Bob, it was effective.  They were at last able to separate their anger towards each other from the anger towards the MS.

What are some other helpful ways to avoid misdirected anger?

- Remember that anger is a secondary emotion

Anger isn’t the first feeling to come, although it’s generally the first one we express outwardly.  Wherever it surfaces, another emotion already existed.  Because emotions like rejection, loneliness and sadness are so strong and painful, we substitute anger because it makes us feel less vulnerable.   
We falsely believe that anger helps us feel in control when we’re feeling out-of-control and powerless.  The first question we need to ask ourselves when we feel ourselves getting angry is “What’s going on inside that’s making me angry?" To resolve your anger, you need to identify the root reason for it.    

Consider using the Anger ABCDs
The Anger ABCDs help you deal with your anger in a basic and easy-to-follow format:
1) Acknowledge that you're angry.  Don't deny it or stuff it; accept and acknowledge it.
2) Backtrack to the primary emotion.  Ask yourself: Why am I angry? What am I really feeling? What is the root reason for my anger?
3) Consider the cause.  Ask yourself: Who or what caused it to occur? Who or what frustrated me? Who hurt or wounded me?  What plans fell through?  What happened?
4) Determine how best to deal with it.  Ask yourself: How should I respond? What should I do? When? How?  

What role does anger play in your relationship and how do you handle it?