When we get some bad news or when something unpleasant happens, it’s normal to be in a state of disbelief.  After the shock begins to fade, our coping kicks in, and we begin to integrate and deal with the challenge we face.  But sometimes, unfortunately, people stay stuck, refusing to acknowledge an issue and along with it, its consequences.  This psychological state is known as denial, and in and of itself can create a host of problems.

Denial, as a long term strategy, is very problematic.  If we’re not able to acknowledge something, we’ll continue in a path that’s harmful to us, as well as block ourselves from doing anything to cope in the future.  If we deny our problem drinking or our smoking, we continue to do harm to our bodies, as well as prevent ourselves from getting the help we need to quit or even reduce the harm.  If we refuse to admit that we have an anger problem, we’ll not only hurt the people we love, but cut off from opportunities to repair the damage we’ve done and lose any chance to change our pattern to make things better in the future.

In the long term, reality always wins, no matter how we try to deny it.  And that’s why denial is so hard on relationships.  This aspect of denial is often overlooked when people in denial, or using denial’s close cousin, minimization, say, “it’s my body” or “it’s my decision,”  because it’s our loved ones that feel the responsibility and the consequences when we are in denial.  They worry, try to talk to us, and then feel helpless.  In  many ways when someone is in denial, it is the one who loves them who carries the burden of concern and fear.  And to make matters worse, a person minimizing or denying a problem will often react to the loved one’s efforts to help with blame.    It leaves a loved one with an unfortunate choice, continue to fight and confront, or go along with the denial, allowing it to continue in the effort to maintain peace.

It’s interesting to note that one of the biggest predictors of whether someone has a drug or alcohol problem is not the report of the person themselves, but if someone in their life has expressed concern about their behavior.  So please, if someone has the courage to express concern about you or a behavior you engage in, give it some thought.  We all have issues we prefer not to think about or acknowledge.  Being afraid and being stuck are part of being human.  But the difference between denial and acceptance is the key.  Denial is a passive response and with it is the avoidance of reality and then opportunities for coping.  While acceptance is an active process of making a choice to do what you can about the things you can control and accepting the things you cannot. Acceptance is a way of actively holding the truth rather than trying to run from it.

Most of us will face a situation in our lives where we feel helpless.  Whether it’s an unfortunate diagnosis for ourselves or loved one, an accident, or a traumatic event, when bad things happen it’s natural to be overwhelmed and become exhausted, feeling like every day of coping is like swimming alone against the current.  Personally, I have been feeling this way in response to my mother’s decline with her neurological degenerative disease.  Despite her best efforts at fighting the effects of Progressive Supranuclear Palsy, it breaks my heart to see her struggle to maintain her ability to swallow or speak even a single word at this point.  I had been feeling like we were both drowning.  Fortunately, I attended a conference in Phoenix this weekend, put on for patients and family members by the CurePSP Foundation.  What I received in terms of knowledge and connection has rejuvenated me, offering me support and resources, and a new perspective.  I share this with you this week in hope it might help someone else feeling beaten and helpless with their own struggle, whatever it may be, find a source of some empowerment.

Knowledge is indeed power.  While there is no cure to my mother’s illness, the series of lectures and presentations filled in many of the gaps I had, some I didn’t even know I had, in terms of understanding what was happening to her.  Some of the quirky behaviors I thought unique to my mother, I learned were actually not uncommon, and now understand why they happen.  In learning about the research of the cause of the disease, it relieved fears about heredity and the feeling she carried that she had somehow done something wrong to expose herself to the illness.  I came away with strategies for some of our challenges and a better sense of what to expect moving forward.  The knowledge I gained already is helping me to shift from helpless frustration to thinking about what I can do.  From little changes in how to interact with my mother to communicate more effectively, to resources that I became aware of, all the way up to the big picture of advocacy, I now have things I can do to help her, help me, and hopefully help others.  I can’t begin to describe the inspiration I got from the people I met, too far along in the disease to benefit from research, signing up to donate their brains for research when they pass.  Each expressed actual gratitude for the opportunity to do something beneficial.

The other incredible source of power I was able to tap into was the connection to others; a common humanity.  There was an immediate sense of intimacy when I walked in the room for the first time, seeing the wide eyed facial expressions (typical of the disease as a result of eye muscle issues), the canes, walkers, and wheelchairs, the bottles of liquid thickeners, and alarms going off to remind people of medication times.  I was able to hear the stories of many others with both similar and differing journeys.  It helped me actually appreciate that while my mother has had a long tragic decline, she has not had to endure hospitalizations from pneumonia or broken bones as many others had.  I felt a sense of gratitude, myself, at being able to share my accumulatd knowledge with daughters and sons whose parent was recently diagnosed.  I was also able to put the anonymous names of Board members on the CurePSP website together with faces, and hear stories of their own losses and motivations to serve.  I spoke with researchers, neurologists, social workers, and caregivers, all dedicated to understanding the illness, finding a cure, and improving the quality of life for themselves and others.

When struggling with a life changing event, it’s easy to become isolated and feel the burden is more than you can bare.  And it is true, because no one can do it alone.  We need others to help us stay afloat, to show us the way, and to follow behind us.  This weekend, thanks to the generosity of people who serve, people who study, people who donate, and people who share, I still feel the power of the raging current, but I have knowledge as a life preserver and others to float alongside with down the unpredictable bends in river.

Sad fact I learned: Dudley Moore, may his memory be for a blessing, died from complications of PSP.

What research shows is that sleep is actually a learned habit.  Our body develops sleep patterns that are easily disrupted with changes in schedules and stimulation.  Repeated nights spent worrying or tossing and turning in bed teaches the body to associate the bed with arousal and alertness.  To address the problem, we need to help our body “relearn” to associate the bed with relaxation and drowsiness.  Sleep experts refer to three types of “learning” that can help re-establish sleep patterns:  sleep hygiene, stimulus control, and sleep restriction.

Sleep hygiene involves creating a routine that will best enhance sleep.  Physically, we need to avoid caffeine 6 to 8 hours before our bedtime and avoid nicotine, which is also a stimulant.  Also avoid alcohol after dinner.  While alcohol can promote the onset of sleep, it often disrupts your natural sleep patterns, so you should avoid it up to 4 hours before you go to bed.  Regular exercise is really important to getting good sleep, but if done within two hours of bedtime, it can elevate your nervous system instead of relax it.   Your bedroom environment should be very dark, using dark out shades or eye masks can help, cool in temperature, and quiet.  White noise or earplugs are good for this problem.  Give yourself time to wind down before going to bed, and do the same routine each evening so that it becomes associated with sleep.  Avoid sleep medication.  Sleeping pills work only very temporarily and create sleep problems when used over time.  

Stimulus control involves the goal of reconnecting your bed with sleeping through learned association.  The bed should only be used for sleep and sexual activity:  no television, phone, computer use, or reading in the bedroom or in bed.  These activities, especially ones that involve a screen or stimulating material (yes, you Scandal fans) get in the way of associating relaxation with your bed.  Also, you should delay going to bed until you are sleepy.  If you don’t fall asleep relatively soon, get out of bed and return when you are drowsy.

Sleep restriction is also about training your body into patterns of healthy sleep.  It involves restricting the amount of time you spend in bed to the amount of time you currently spend actually asleep.  Research shows sleep restriction to be extremely effective for improving sleep, even though initially you may experience mild sleep deprivation as a result of the technique.  Sleep restriction involves calculating and keeping track of your sleep efficiency, which is the percentage of time you are actually asleep during the period of time you are trying to sleep.  For example, if you usually go to bed at 10 pm and wake up at 6 am, you are in bed for 8 hours.  Of this time, it takes you an hour to fall asleep, you wake for 30 minutes in the middle of the night and are up 30 minutes before you get up.  So, your actual sleep time is 6 hours of the actual 8 hours you are in bed, so the sleep efficiency is 75%.  Sleep restriction would mean reducing your time in bed by 2 hours.  You could either go to bed late, or get up earlier.  After sleep efficiency reaches 85% or greater, the time in bed can be increased in 15 to 20 minute blocks.  Time in bed is increased each week if you achieve 85% or greater.  The pattern is continued until efficiency starts to fall below 80% at which time you decrease sleep by 15 to 20 minute blocks.  You continue the process of increasing or decreasing sleep time by 15 to 20 minute blocks until sleep efficiency falls between 80 to 85% on a regular basis.  This is usually achieved in just a few weeks.

When people have sleep problems, the mere anxiety about sleep can be stimulating and make it difficult to get to sleep.  When you go to bed afraid of what the night will bring, you reinforce the wakefulness and alertness.  Before going to bed, try listening to a relaxing visualization that you can download from a meditation app, or just listen to soothing music.  You can listen to a classical music piece and pay attention to one instrument at a time.  This is mediation without having to even focus on meditation.  And if all else fails, try listening to a book on tape about a subject that doesn’t interest you. Personally, listening to tax advice tends to do the trick for me!

Before handing back a very challenging Spanish test, my daughter’s teacher gave them a handout entitled “Eight Reasons to Celebrate Mistakes.”  While my daughter and her classmates were not so amused, I, as her mother, appreciated the intention.  We live in a culture that values success and winning so much so that we lose sight of the process of learning and put tremendous pressure on ourselves to always be “right.”  When we put so much emphasis on avoiding mistakes, we lose sight of the learning and can become paralyzed, afraid to take any chances.

I wish we had a better word than “mistake.”  According to the dictionary, it means “an action or judgment that is misguided or wrong.”  I often wish we could call them “learning efforts” to avoid the judgment.  Especially when it comes to the bigger efforts of living, such as talking a new job, moving to a new place, or ending a relationship.  How often I hear people berate themselves for making such a “huge mistake,” discounting the courage of taking a chance and the experience obtained from trying something new.

So often we value and applaud “change” but set ourselves up by expecting that every change has to be for the better.  If things don’t work out as planned and hoped for, we often go beyond disappointment to the burden of shame.  How painful that is and often how unnecessary.  Sometimes we do make mistakes that require us to apologize or even feel guilty or ashamed, but these are situations that involve moral failures, or true lapses in our judgment, when we act on impulse or in a selfish manner.  These are the times we most certainly must make amends and acknowledge our error.  But I often see people generalize the notion of a mistake to a choice that was made with the best of intention.

In order to avoid mistakes of living, we would have to avoid taking any chances.  And the point of the hand out the teacher was trying to make was that learning happens through mistakes.  We try and we get feedback.  Feedback is how we learn not only Spanish, but also about ourselves.  It is the feedback that is the key to self awareness.  Sometimes we  try something new to see if we can expand our capacities, such as building the stamina to climb the mountain, or go to a group to learn how to tolerate the desire to drink.  And other times we try something new to see if it is a better fit for us, such as dating a new person or taking a job in a new environment.  Regardless of the outcome, which is seldom so black and white as being “right or wrong,”  we grow and change through the effort.  If we can avoid the embarrassment and the judgment, we can embrace the learning and the experience of expanding ourselves.

I love that the Spanish teacher walks her talk.  She gives the students a chance to re-submit their test with new answers.  The point is to use the feedback.  When we see the player score the touchdown or the musician accept the grammy, we only see the tip of the iceberg.  Ask anyone who has had success to tell you about the effort it took to get there and the non-successes it took along the way.  And then, after their moment of fame, they have to go out and start again, putting themselves out there with the chance that things won’t go as well the next time.  Learning to live with risk is the only way we can move forward.  So, instead of hanging our head in response to a mistake, why not celebrate the chance to learn?