Peoples needs often go unmet for the sake of just expressing them. When people understand exactly where you are at then they are better able to be there for you. Most of us are surrounded by a lot of wise and kind people all around us, but many of us worry about being a burden or bringing someone down by sharing our sorrows. Or we can be embarrassed to be honest with people as to how bad our life has gotten. Some people see their needing help as a character flaw instead of seeing it as a strength to be able to reach out in our time of need.
People with Huntington’s can lose their words when they get flustered. The anger that follows is a result of the stress that comes from not being able to verbalize something. I know I can get a tightness in my chest when I struggle to verbalize something under stress, the quicker I need the words, the further away those words seem to go. The moment someone pressures me I seem to either shut-down or feel trapped verbally which can sometime result in major frustration and triggers that fight or flight response.
On an off day I can get very easily confused and thus more easily frustrated, or completely lose the whole thought wave, let alone my point. There is a fog that seems to invade my mind sometimes. Some days it is a lot thicker than others. At those times the people around me have the power to help take it away or to add to it. I do not have time for people who are into head games. Those people who are looking to “outwit, outlast and outplay” can move along to someone else. I am not interested in wasting my precious energy in unnecessary power struggles.
I still use quiet time as a means to help balance myself out. Time alone is time for reflection as well as taking personal space. Some people do not understand how deep the need for personal space can be to someone with HD. Sometimes the person with HD is not allowed to just take a time out when they need it. Or they are not able to verbalize their need for space and they just disappear without explanation to go off on their own. People need to recognize this sudden disappearance as the person with HD doing what they have to do to balance themselves, and give them whatever space they need.
When people with HD learn to use their words then their ability to connect outside themselves is great. Unfortunately many people with HD have the additional problem of losing their words which is a common HD symptom. Continuing to use your words with an ever shrinking dictionary becomes even more challenging. Which is why it becomes so important for you to be surrounded by people who know you and understand you because when the words eventually fail altogether.
I remember seeing a video with Woody Guthrie widow Margery and she was explaining how she realized that Woody understood things she said to him (back in the day when Dr’s thought people with HD were not there mentally). She noticed that when she read letters to him that he seemed to understand. The Dr’s did not believe her and so she made up a chart for him with words like yes and no and I think a few pictures to start with. She them began testing him by asking him to point to certain things as well as answer yes and no questions. The Dr’s were blown away at his accuracy and Woody and other people with HD were seen differently and treated better in the last 30 years.
This is a great example of how a family member helped their loved one use their words at a time that they had no dictionary left. By pointing to the pictures some people can still communicate. The families always have their own ways to communicate too. I know my family sure has. I think that is why it is so important to surround yourself with people who really know you when that end time comes. I know there are some people I can speak to using only my eyes.
Another challenge people with HD face is the fact that their emotions often do not match the facial expression. I had one of my best friends tell me that she use to be able to know exactly where I was at my looking at the expression on my face. But now the lack of expression can throw her. So she is learning to check in with me verbally with questions rather than trying to read my facial expression or body language.
In a normal conversation someone shares and then sees how it is received and then shares more. But a lot of people with HD do not give any visual feedback which can leave the door open for people to misunderstand or misinterpret how we are feeling. They call it the stoic HD facial look, which loosely translated means an expressionless expression. A blank look where all the facial expressions should be. Now, for the most part family and close friends know you well enough to “fill in the blanks”, but other people can find it much more challenging.
Using your words to get your feelings out is huge. Sharing what you are feeling helps others understand where you are coming from and helps you to keep more level emotionally. It is when your feeling are pent up that pressure can build and bubble over, plus it add more stress because people are not going to understanding what is going with you on the inside. Plus as they say “a problem shared is a problem half solved”.
Try to make things easier on your families by putting in writing now what you may not be able to put into words later. Saves the guess work. I regret that I did not get my Mom to write things down before she passed away. For years she said that she wanted certain things to go to certain people. But after she died she was not there to double check her wishes with. I am going to try to simplify that by writing my wishes down. I will make a point of using my words now in case there is not a cure for HD and I end up losing my words later on.
If you don’t know where you are going, any road will get you there…
(Authors note--I would like to say a special thank you to Paula from the HDAC and HD Lighthouse for many years worth of positive comments that she has made regarding all my written stuff. I appreciate your kind words, thanks Paula.)