The Benefit of Distractions

Even during the first year of my condition when I was at my worst with pain levels of 8 - 12 on the 1-10 scale, I could always settle down on Sunday nights from 9:00pm - 10:00pm to watch the Sopranos. I got so immersed in the characters and the stories and even the violence, that I was able to mute my own pain.

Distractions are wonderful. They are little islands of respite. They are the breath between the spasms.

My offering to you for this holiday season is this list of my favorite movie distractions:

1. Comedy: Blazing Saddles, Monty Python & the Holy Grail, The Life of Brian, Annie Hall
   
2. Musical: West Side Story
3. Western: McCabe and Mrs. Miller
   
4. Mystery: Sleuth, The Usual Suspects, Mulholland Drive
   
5. Foreign Film: Les Enfants du Paradis (Children of Paradise)
6. Action: any James Bond film with Sean Connery
7. Drama: The Godfather, part 1, Cool Hand Luke
   
8. Science Fiction: Blade Runner, The Day the Earth Stood Still (the original), 2001
   
9. Animation: Fantasia
10. Film Noir: Double Indemnity
11. Zombie: Shaun of the Dead
    
12. Twisted & Dark: Dr. Strangelove, Donnie Darko

What are some of you best distractions? Either movies, or anything else that transports you away, for a little while.

Grand Rounds

Check out Grand Rounds at Dr. Ottematic - a collection of posts from health care bloggers.

Advice for a Couple with Two Ill Partners?

This comment came in on a previous post. The writer is asking for advice. Might any of you have some suggestions for her?

Here is her comment:

For many years I have lived with a husband with chronic pain, due to injuries to his back, several surgeries that didn't 'fix' him and it's been a struggle, especially emotionally. Fortunately, through my job I have health insurance and a good salary, and we have been able to survive. Now, I have been thrown a curve ball, have an injury that causes chronic pain, hasn't been diagnosed, nor have I gotten a plan on how to fix or live without an income or insurance. Do any of you have a similar issue? I am trying to get time-loss, the injury happened at work, but am being fought the whole way. Please, any suggestions would be helpful.

Even More Myths About Couples & Illness

More myths about couples dealing with illness:

Trust your doctor. He/she knows what's best for you.
Yes, and no. As Ronald Reagan used to say, "Trust but verify." Do your own research. Your doctor does not have as much time as you have to dedicate to researching your condition. And chances are he/she primarily reads medical journals and attends conferences to keep up on new findings. You can read patient blogs and disease association web sites, in addition to reading medical journals. You may find data or see patterns emerging that have not caught your doctor's attention yet. Bring your findings to your doctor, with respect for his/her expertise. Ask if he/she has heard about what you learned from your research. If his/her response is dismissive and disrespectful to you, maybe it would be wise to find a more open doctor.

Couples can, and often do, share in doing this kind of condition-specific research. I did massive quantities of online research. In addition to finding valuable data, I found specialists from all around the world. Richard cold called them and asked them if they would be willing to talk to us and share their perspectives. Surprisingly, most did.

When a doctor tells you that you have a 10% chance of recovery, start making your end of life plans.
A giant-sized "NO!" Doctors deal in aggregate data. They understand that for a given population with a particular condition, X% will live and Y% will die. But each patient is not an aggregate. Each individual patient is a case of one, and aggregate statistics and probabilities are not predictive at the individual level.

Here's a wonderful post by Dave Debronkart, a cancer survivor who was given 24 weeks to live and now, 3 years later, he is a brilliant patient activist: Advice to a Cancer Patient

The key bit is that no one knows when someone else will die. No one knows when he/she will die. If your life span is shortened by disease, the question is - How do you want to spend your time? In fear of the unknown future, or in appreciation of the present moment?

When I hear a probability or a statistic, I immediately dive into the dark side and see myself in the past tense. Luckily, Richard is a scientist and can pull me out of my dungeon with patient, rational explanations of what probability really means. This is one way partner can balance each other. Use the strengths you have as a team to fight against the gloom of a doctor's prediction.

Grand Rounds is Up

Grand Rounds, a collection of posts from the health care blogosphere, is up at Florence dot com. Have a look

More Myths About Illness and Couples

More myths about illness and couples

I eagerly invite you to add your myths to this list. Maybe when we make them visible, we won't feel so constrained by them.


1) Grief happens after your partner dies.

So very not true. Grief becomes a part of the ongoing illness experience - at first diagnosis, with each little slide downhill, with each recurrence of symptoms, each time you can't do what you used to do together. And grief takes a different shape at all of these moments of awareness of loss. Grief after death has its own shape and may be different for each person.

2) Don't tell the children, protect them from the reality of the parent's illness.

It all depends - on their age and maturity and their history with loss. However, children KNOW! They are empathic sponges and absorb tiny changes in the family ecosphere. The know something troubling is happening -- they just don't know what it is. Finding the right way to tell them can be healing for all. It allows the family to join together and find strength in each other instead of standing apart protecting a secret.

3) Don't tell your partner how bad you're feeling, it will only make it harder for him/her.

It depends on the relationship. If it's a suck-y one and telling won't get you any compassion or may result in your partner mocking you for your "weakness," then not telling may be the right thing. But if this is the kind of relationship you're living in, perhaps the harshness of it is only adding to your stress. It may be time to consider therapy.

If your relationship is generally a close, supportive one, then your partner already KNOWS something is wrong. Like the children in myth #2, your partner can probably tell from the way you breath or move that something is going on -- he/she just doesn't know what. By not telling you cheat both of you of the opportunity to hold each other, comfort each other, and carry the worry together (which usually tends to make it lighter).

4) Retreating from the relationship means rejection of your partner.

Au contraire. Who can be with their partner all the time - in health or in sickness? The ill partner may need some alone time to focus all their energy on getting better - physically, emotionally, or spiritually. The well partner may need some alone time to regenerate and engage in activities to restore his/her stamina. The trick is to make sure you tell your partner, out loud, that you are taking some alone time so you can get stronger and have more to bring back to the relationship. Putting this into words will help prevent your partner feel accompanied, not rejected.

Seven Myths About Couples and Illness

I first blogged the 7 myths on this list a year ago. Since then I have stumbled over several more which I'll post over the next few weeks.

I eagerly invite you to add your own myths to the list.

7 Myths About Couples & Illness:

1. Love is all you need (sorry, not true John Lennon)
2. It's better to keep busy and not dwell on the illness (sometimes yes and sometimes no. Partners need to cue each other when they need distraction and when they need to talk about illness)
   
3. Talking about suicide only makes the possibility of doing it stronger (if your partner alludes to suicide and you ignore it, those self destructive feelings won't go away; they'll only go underground)
4. It's better to face the harsh truth rather than sustain fading hope (no one has the inside track on truth or hope)
5. If you cater to your ill partner's needs, you'll be fostering an unhealthy dependency (the dance of couples and illness is about perpetually seeking a balance between meeting each others' needs and supporting each others' strengths and autonomy)
6. Illness trumps intimacy. If one of you is sick and in discomfort, sex drops off the list (intimacy does not de facto equal intercourse. You and your partner need to talk about what is comfortable and what is not)
7. If your partner is sick it's your obligation, your vow, to stay by his/her side, no matter what (this is a very painful issue, and there is no one size fits all answer. Some couples stay together through illness and find new dimensions of loving; some couples stay together and make each other sicker, or at least miserable; some couples who separate find that the physical distance permits greater emotional closeness).

Caregivers and Suicide

excerpted from the Tampa Tribune:

Caregivers may look to suicide

By Gary Joseph LeBlanc

The rate of homicide-suicide in senior adult couples is 50 percent higher than younger adults. Those who suffer from Alzheimer's, the so-called Caregiver-Dependent Homicide-Suicides make up a large percentage of senior deaths. When a couple who has been married for a long period of time becomes totally dependent upon one another and one or both become irreversibly ill, homicide-suicide may appear to be the only answer. Periods of deep depression may trigger feelings of utter hopelessness, especially on the part of the husband who feels helpless in realizing he can no longer fulfill what deems to be his husbandly duties. This usually has the husband initiating the act. Do not interpret this as a suicide pact; this is an act of desperation and hopelessness.

One caregiver resource report showed nearly 60 percent of caregivers experience clinical signs of depression and 40 percent of former caregivers have mild to severe depression which can last up to three years after the patient has died.

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My Commentary:

Honestly, who doesn't think of suicide when you're living with a debilitating chronic condition that sucks the joy and vitality out of your life - whether you're the patient or the caregiver. I know I have found myself in moments of unrelenting pain thinking about death as the only cure. Having the option of suicide always available ironically allowed me to chose life -- because I knew that death was within a few pill's reach away. I could always swallow that handful tomorrow.

I would really like to know - have you ever considered suicide as your "cure?" What kept you from doing it? What thoughts ran through your mind that made you chose life?

What are the Little Things that Make a Big Difference?

The long haul of chronic illness can be back breaking work, for both partners. It certainly takes a physical toll. Couples know too well the exhaustion of dealing with symptoms and daily responsibilities, which don't wait for flare ups to quiet down. Illness certainly takes a psychological toll as roles shift and communication channels get clogged with emotional static.

Sometimes it doesn't take a big thing to break the tension and reduce the stress. Sometimes a very little thing can create a momentary oasis whose restfulness and beauty can then trickle back and lighten the ordinary for a while.

For me it's making sure we always say good night to each other, out loud and with intention. It's also laughing together, about anything, especially something silly or raunchy.

What about you? What are the little things that make a big difference?