Looking Beneath the Veil

By Jim Pollard

From the Spring 2000 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

As years go by and Huntington's Disease progresses, it often places a veil over that person you love. He's the same person, but it's often difficult to see him through the veil. Sometimes people who are unfamiliar with him meet him and say hurtful things like "He's a different person" or "He's not the same person that he used to be." But understanding some of the more subtle aspects of HD can help lift that veil. It should come as no surprise that underneath it is the very same person you have known, loved and cared for through the years.

Sometimes weakness and changes in the tone of the muscles in the face give people the appearance of looking bored or disinterested. They may be "smiling inside" but falsely appear to be less than excited about seeing an old friend. When that friend greets him and asks about his family, he may have to wait for an answer and may begin to feel that his friend is not interested in their brief reunion. Sometimes HD makes it difficult to organize your thoughts when you need to answer questions. Just thinking about answering "Everyone is fine and my brother's back home now" may take ten extra seconds. While waiting for those ten seconds to process the answer, his friend may suspect he's not really interested in a conversation. Other aspects of changes in muscle tone, called "dystonia" may suggest lack of interest in interacting with family and friends. Sometimes people lean over, slouch in chairs or keep their heads down. But knowing that these are aspects of HD helps lift the veil to see the person beneath it, as excited as ever to see an old friend!

An impatient family member, one who is insisting on our individual attention, can be very annoying. In fact, it's very irritating when you count on him to understand how busy you are but he still insists that you stop what you're doing to attend to him. Can't he see that the baby's crying, there's a roast in the oven and the phone is ringing? Huntington's Disease can certainly make one appear selfish, demanding and egocentric. But make no mistake; this is another veil concealing the person you know as usually generous or selfless. Difficulty controlling impulses and inhibiting the expression of feelings, especially negative ones directed at you, can create a very demanding, imposing figure. For reasons related to the damage to certain cells in the brain, many people with HD just can't wait...for anything! Understanding that this impatience is based on a neurologic condition and is not a character flaw helps to see through the veil. It may not make it any easier to deal with the unreasonable demands, but it makes it more difficult for us to blame the person under the veil and easier to blame HD.

Other aspects of HD tempt us to make negative presumptions about people with Huntington's. Fatigue can make people appear lazy, disinterested or irritable. Difficulty controlling movements can make one look drunk, or worse, aggressive. In some instances speech takes on a loud, explosive quality that makes one appear angry. In others, depression is misleadingly veiled by outbursts of anger. All these aspects combine to weave a veil that conceals the person you know so well and love so much. Understanding and teaching others about HD allows us to lift the veil, remove the mask and see their real face once again. As the Beatles sang, "Look into my eyes now, tell me what you see! It should come as no surprise, what you see is me!"

Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: July 4, 2000
Last updated: Dec. 4, 2010