Monday, January 31, 2011

They Don’t Talk to Me Anymore

Although the experience of not being listened to during my feeding tube surgery was untimely and painful, it is unfortunately also not uncommon. One of the most difficult challenges for me in dealing with ALS is that when your speech becomes significantly slurred and slow, even some of your closest friends and family give up on trying to understand you. Instead, they turn to someone else for interpretation, take their misinterpretation and run with it, or talk or ask about you instead of talking to you. Perhaps worst of all is when they totally ignore you, except for the occasional patronizing remark that addresses you as if you were mentally rather than verbally challenged. If I allow my mind to make this behavior about me, it can feel extremely frustrating, dehumanizing, humiliating, and dismissive. The message you hear is: “You are not important enough for me to make the effort to attune my ear to your impaired speech.”

The truth is that listening to and understanding someone with impaired speech and breathing requires an enormous amount of concentration, patience, and time to get accustomed to the sounds. For more than twenty-five years I was able to earn a living teaching people how to listen, because most are terrible at it. When the speaker’s verbal abilities are impaired, the difficulty of listening increases exponentially. Most people lack the ability and/or willingness to step up to the challenge. When I had clear speech and a strong diaphragm to propel its volume and pace, I could compensate for another’s poor listening skills with my own. Now I have to make other choices.

The first thing I do when I’m not being listened to is remind myself that it is a function of the other person’s limitations, not a comment on my value as a person. To be honest, this effort is sometimes preceded by some anger or frustration, but I always get there, because holding on to negative emotion is unhealthy and stressful. That would work against my plans of recovering from ALS.

Next, I assess how important it is to be heard and understood. If it is important, and I am at my computer, typing the message is an option. If I’m not at the computer and it’s important to be understood, I will ask someone who understands me well to interpret. If it’s not important, I will just let it go. The sad part of this process is that it severely limits my ability to participate in casual conversation and playful banter. I have to choose my moments. Modifying how I participate in conversation is but one of many adjustments that has come with the challenge of living with ALS.

Having people in my life that have the patience and concentration to attune their ears to my speech and pace is critical, especially when I am out and about where it can affect my safety. I am blessed with several family members, good friends, and aides, who take their time to listen and understand. Without them the challenges of communicating verbally would be exponentially greater.

There are some with ALS who have lost their verbal abilities completely, and have to rely on computers or other technology to communicate. These people are heroes to me. As someone who earned his living with his verbal skills, I cannot imagine being completely without them. That is one adjustment I hope to never have to make.

One of my hopes for this blog is to raise awareness among the able bodied of how they can unintentionally dehumanize or degrade people with disabilities, and what can be done to avoid it, and treat the disabled with dignity and respect. It is also my hope that the physically challenged may find insight and strength in dealing with unintended affronts to our dignity. Please share any stories and insights that this posting may have brought up for you. Have you done something well intended that may have offended someone? Have you hurt yourself by holding on to anger or resentment toward someone who wasn’t even aware they offended you? How might we turn those nightmares into miracles?

4 comments:

  1. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

    ReplyDelete
  2. I was diagnosed with stage 3 breast cancer in August of 2010. A precious friend told me about Dr Itua Herbal Center in West Africa,She gave me his contact number and email address,I contacted him quickly so he give me guaranty that his herbal medicine will cure my cancer and i will be heal forever I said Okay.I ask him about the process for the cure,he ask me to pay for the fees which i did and within 7 working days he sent me the herbal medicine then he instructed me on how to drink it for two weeks to cure.I told Gomez my friend about the herbal medicine so he gave me go ahead to drink it.So after drinking it for two weeks i was cured I'm so grateful and i promise i will recommend anyone with cancer to him and that what i'm doing.
    Dr Itua told me he can cure the following disease.Cancer,Hiv/Aids,Herpes,Diabetes,Parkison,Copd,Hepatitis.. Here Is His Contact Info......[Email...drituaherbalcenter@gmail.com/Whatsapp...+2348149277967]

    ReplyDelete
  3. My mother was diagnosed with ALS (Lou Gehrig's Disease) when she was 68 years old 2 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Ogbeifun Herbal formula and his successful ALS TREATMENT, we contacted him. and ordered his ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.i joyfully recommend you to dr ogbeifun because health is wealth this is a very bad experience with those living with ALS please do not hesitate to contact him ogbefunhearlingtemple@gmail.com or call/whatsapp him via +2348102574680

    ReplyDelete
  4. I would like to thank Ultimate Health Home for reversing my father's Amyotrophic Lateral Sclerosis (ALS). My father’s ALS condition was fast deteriorating before he started on the ALS Herbal medicine treatment from Ultimate Health Home. He was on the treatment for just 6 months and we never thought my father will recover so soon. He has gained some weight in the past months and he is able to walk with no support. You can contact them at ultimatehealthhome@gmail.com

    ReplyDelete