Month: <span>October 2011</span>

In the world of psychology, denial is considered a normal human response to information that may be overwhelming. Denial allows a person receiving bad news to take a break. It lets one hold off bad news – like a football player with his arm out to block a tackle. It offers one time to fortify personal defenses and prepare for an attack of bad news.

Denial is like the chain lock on a doorway. When bad news knocks, you can unlock the bolt and knob, but the chain lock allows you to see a stranger without opening the door all the way. Denial offers a small bit of protection and comfort. Of course, a really bad guy will simply kick down the door.

Many counseling models require a person to “move past denial”. In other words, in those models, progress cannot be made until denial is eliminated and one fully faces and embraces the overwhelming information.

In my world, a little denial is a good thing. I think of “willful denial” as the decision one makes to ignore bad things so one can get on with the good things.

I’m not talking about the irresponsible ignorance of important things like medical options, healthcare practices, the impact of MS on finances, relationship skills, etc. Willful denial never ignores reality when reality demands attention. Willful denial never chooses to discount medical reports. Willful denial never pretends MS isn’t real. Willful denial merely helps me enjoy time with my wife without focusing on the wrong things.

I believe willful denial is an acquired skill. It took a few years before I was able to accommodate the significant changes MS brought, is bringing and will bring. I imagine willful denial is probably a midpoint between initial diagnosis and when things become really bad, when reality bites the heart out of a caregiver.

I’ll share my use of willful denial related to three things: 1) information presented as facts, 2) what daily life presents as continuing trends in a disease process, and 3) what my mind tells me are probabilities for the future.

Search for a Cure

Willfully denying information presented as facts allows me to respond now without emotion to the statement, “there is no cure for MS”. That’s the “fact” that really made me angry. “Of course there’s a cure”, I thought, “they just haven’t found it. It will happen soon!” “What do you mean there’s no cure?!? A lifelong, degenerative neurological disorder without a cure! That ain’t right! Get busy, folks!”

I still believe a cure will be found. But I no longer believe it will happen soon. And when it does, I don’t believe a cure will repair damaged neurological tissue. I hope it does, but I think at best, the cure will simply stop the disease process. What I realize is that it isn’t my job to find the cure. Others will find a cure and I am so grateful for their efforts. It’s big science. Researchers with passion are pursuing a cure for Multiple Sclerosis and I cheer them onward wishing them Godspeed!

What I accept, though, is that whether or not MS will ever be “cured” means little in my daily life. After years of reading about every new or potential “cure”, I realized I can ignore that the search for a cure is even occurring. Focusing on the news of cures stirred too many cycles of hope followed by disappointment. I don’t have time for that because it distracts me from focusing on what I can do well: care for my wife.

Signs and Symptoms

Willful denial allows me to ignore what daily life presents as continuing signs of my wife’s disease process. I choose to see decline through a different window, I reframe daily life so that it is normal. That helps.

(Before I talk about how it helps to ignore slow, progressive decline, I caution you. Never ignore new symptoms. Anytime a new symptom appears, discuss it with the patient’s physician.)

Last night my wife and I went to the theater to see, “The Big Year”, a cute movie about three men who are competing to see the most birds in a single year. I was once a birder and really enjoyed the movie. My wife enjoyed it because it was cute. After one birding excursion when we were engaged, she declared she would never be a birder.

As the crowds scurried around us as we left the theater, moving at their normal, festive pace, I held my wife’s hand and we walked like a couple 40 years older than we are. Very slow. Stepping off a curb was a tedious process. Frustrating for both of us. I used a little willful denial and reframed it like this, “Yes. I hate that she can’t skip quickly with me to the car, but isn’t it nice to feel her hand in mine and enjoy this slow walk while everyone else is hurrying, missing the beautiful moon and cool breeze?”

It’s willful denial. But it makes the present pleasant.

Future Probabilities

One cannot live well without considering the future. And willful denial is not an excuse for not preparing for the future. If you are a caregiver who doesn’t prepare for the future, you are missing an important part of caregiving. Once you are prepared, though, except for an occasional check to see if additional preparations are needed, I think it’s possible to ignore concerns about the future and focus on the present.

Having done all I can do to prepare for the future, willful denial allows me to focus on the present by ignoring what I know are the probabilities the future holds. Instead of running each day through an ugly list of symptoms and experiences that I know are probably sitting out there in our future, I focus on today. This day. I deny that ugly future’s power over my daily operations. I willfully choose to ignore what I cannot control and enjoy today with my wife.

There are certainly times when denial is a bad thing. For example, if it kept me from facing reality with integrity and courage, denial would be bad. But when used willfully with awareness, a little denial allows me to focus on today and enjoy every good moment without fear of the future or pity for the present.

MS Caregiving

Looking for a way to help advance knowledge about Multiple Sclerosis Caregiving? I know a way.

I have just completed an online survey which is sponsored by the National Alliance for Caregiving and the National Multiple Sclerosis Society. The survey took me about 20 minutes and was not difficult.

Here’s the survey link: www.sirresearch.com/MScaregiver

The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers. This research is NOT about professionally-paid caregivers.

The survey is completely anonymous and confidential. It did not ask for my name or contact information. Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the National Multiple Sclerosis Society so they can learn how to better meet the needs of those caring for people with MS.

If you are a family or friend caregiver for a Multiple Sclerosis patient and wish to assist with this anonymous research, click here: www.sirresearch.com/MScaregiver

If you wish to participate, please do so by Friday, October 21, 2011.

www.sirresearch.com/MScaregiver

I was surprised that completing the survey helped me become a bit objective about an emotion-laden topic. Try it!

MS Research