A New Life with ALS: Denial ... Don’t Deny Yourself Support

by Steven and Jennifer Bishop on Sat, 2003-11-01 10:09

Denial is a powerful weapon in fighting a devastating disease or situation, particularly when it allows one to enjoy the gift of life. However, it can also be unhealthy both mentally and physically.

Steven and Jennifer Bishop, with their son, Christopher

We define psychological denial as a person’s lack of acknowledgement of a particular predicament. The result is that others who might like to understand and support the person in his or her struggle aren’t able to do so.

A friend of ours who’s dealing with several chronic medical conditions recently asked us how we stay so positive in the face of ALS. The ensuing conversation went in many directions for all parties involved and also fostered further self-discovery.

Several issues seem to get in the way of quality of life when denial determines your attitude. Three primary issues are: chronic pain, a feeling that you’re not meeting family responsibilities, and a lack of understanding from family, friends and others in your support network.

Chronic pain

Chronic pain, resulting from medical or other conditions, can be overmedicated or undermedicated. Whatever the situation, it can lead to a feeling of constant desperation and change in personality. It’s difficult to be yourself when you hurt or have too many chemicals in your body.

You obviously should discuss alternative forms of pain management with your doctor, and ask your doctor to explain all of the treatment options.

Recently, we had a conversation with a newly diagnosed ALS patient and he was told the usual: two to five years survival, don’t do anything more than three months in advance and get your affairs in order. Oh yeah, the only thing that might help is Rilutek.

Not one thing was mentioned about symptomatic relief of cramps, spasms, twitches and joint pain, or anti-depressants for his reaction to the most devastating news most people will receive in their lives.

We don’t have control over what this disease does to our bodies. We do have control over how it affects us.

Don’t deny your pain — physical or emotional. Find professionals who can give you the help you need.

Family responsibilities

Family responsibilities are very subjective. The fact that we might want to do more than we physically can is a message that must be made known to those we love.

Children, for example, may just think we aren’t interested in them, when in fact, we’re simply unable to interact as much as we’d like. This may happen especially if they don’t know the full ramifications of the ALS situation.

When Steven began showing symptoms of ALS, our son had sympathetic aches and pains. He’d say, "My legs are too tired to walk, too," until he understood that Daddy has a disease that makes his muscles not work right, but that Christopher doesn’t have this problem. He surprised us with his understanding and compassion and continues to do so daily.

If Christopher asks whether ALS will kill Steven, we can honestly say, "We don’t know." None of us are guaranteed tomorrow and the way the end comes isn’t foretold to us. There also may be a cure or treatment right around the corner that none of us are aware of.

In marriage, we have an opportunity to reach an emotional level not tapped before. Of course, the physical challenges of taking care of a spouse with ALS shouldn’t be minimized. However, if we try to reach out and emotionally enhance the relationship, we may be able to offset some of the physical difficulties.

Again, we can only change things in our control. And the first step may be for husband and wife to stop denying the nature of the problem, so they can honestly reach solutions together.

Understanding and support

Understanding and support from our circle of family and friends is in large part something we can control. If we live in denial, it’s difficult to let others know what we’re dealing with and therefore impossible for them to understand our situations.

We have the opportunity to let others into our lives. Some of the details of that life may be too much for some and relationships may change for the worse. On the other hand, if we let people know our challenges and open ourselves up emotionally, new relationships will form with old friends and new acquaintances.

We feel it’s imperative to have a sense of purpose. It can be simple or complex as long as it’s there every morning to bring forth another day.

When Steven stopped working and the doctors suggested we get our affairs in order, we did so. After that, a hole was left as to what we should do for the rest of our lives, however long that may be. We found our purpose mostly with our son and each other, but also with our volunteer work with the MDA.

Simply, the process of finding a new purpose is a life mission itself and worth the challenge of waking up every day.

Steven and Jennifer Bishop are co-chairpersons of the ALS Division of MDA. Steven received an ALS diagnosis in March 2001. The Bishops live in Arvada, Colo., with their 5-year-old son, Christopher.

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