Just Listen

Speed Racer is a classic, 1967 Japanese series that was adapted into a 2008 Wachowskis film starring Emile Hirsch, John Goodman, Susan Sarandon, and Christina Ricci. I considered myself a fan of these actors- their most sentimental roles for me included Emile’s from Into The Wild, John’s from Big Lebowski, Susan’s from Stepmom, and Christina’s from Now and Then, The Addams Family, and Casper. Ricci is my girl.

Speed Racer was one of those movies I stumbled upon by accident, which also became one of my favorite movies instantly. Donnie Darko was discovered the same way. I was at a friend’s house and this was one of my brothers I’ve known since Kindergarten kind of friends. He blurted out, “Hey- you’re weird! You’ll appreciate this!” and then flashed the Donnie Darko DVD. Not only did I appreciate the film, and later, even the Director’s Cut version, I appreciate those who understand me and my desire to explore, enthusiasm for acting talent, and love for an awesome soundtrack. Speed Racer wasn’t some kind of epic masterpiece by any means, but it was different and the story is incredible and I love the featured actors in the film.

There is something timeless and uniting about any story that details defeat and triumph, especially when it involves an underdog who has endured a lot of pain, and ESPECIALLY when the underdog’s triumph is realized through defeating THE MAN, revealing everything coming full circle. It was relatable in so many ways, but there was a particular scene that just, as John Goodman as Pops says, clicked.

Without giving anything away, there is a scene in this film in which the words “just listen to her” are spoken. The scene is PIVOTAL and so many things rest on these words- this idea. This is one of those moments from a movie that strikes me at a nerve that means so much to my own personal underdog story. It is this story that I want to share today.

Helen Keller was an Alabama writer, who was born deaf and blind. One of my favorite quotes was something she said, The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart. I have detailed in this blog the extreme levels of feeling I have done throughout my life, and one reason I feel above all else is because of my inability to properly hear the world around me. I am not deaf and blind, but if you ask people who communicate with me the question, you might get the answer- Just about.

When I was in elementary school, I participated in speech therapy. My S’s were too soft and I had a lisp, probably comparable to Drew Barrymore’s. Oh, you know, Drew Barrymore from Donnie Darko? And E.T.? And all the other movies I grew up obsessing over and learning mannerisms from?

Anyway, speech has always sounded muffled to me. As a child, I would sort of disengage with conversation and rather, tend to my imagination and small world I had created, or would just STEM with music at the highest volume through my headphones. As I got older, I noticed that the things I wanted to talk about were not necessarily what others wanted to talk about (unless I was with my musician or nerd friends). As I get older still, I notice my disassociation from situations that involve larger groups of people in which I am a participant, rather than simply a spectator. I also notice when I am a spectator, I miss out on a lot of information as I simply cannot hear. This happened to me while I was in the audience before the Dalai Lama and Dave Chappelle. I began masking, I began isolating. A four minute video I watched at my Audiologist’s office summarized why.

While many factors played a role in my declining auditory abilities, loud music and soundwaves, no matter how abrasive (in fact, the more abrasive, the better in some circumstances), were things I grew up constantly absorbing. Whether backstage, on stage, in front of the stage, or via headphones, these intense vibrations have pierced my ears and soul throughout my entire life. I can remember being three years old watching my dad playing a gig at a bar or rehearsing on his drums in our barn.

I have had tinnitus for years, which is, I guess, like living in a world without coffee and, therefore, something that can lead to very serious consequences if left neglected. My brain was trying to grab more volume from the outside, resulting in higher output that, to me, only sounds like an annoying as fuck high pitched ringing. And as the outside world became noisier, so too, continued the unseen, brutal cycle of hearing loss. Along with some other things:

The disengagement continued. The depression continued. The isolation continued.

Aaaaaaaaaaaaaaaaaaaaand welcome to memory loss by age thirty-five.

Among some of the realizations which came along in working with Dementia patients on a daily basis was a deeper understanding of the simple, unimportant abilities we take for granted. It also forced me to reevaluate the word important. Having the simple ability to wipe your own ass may not feel very important now. BUT(T) it is! Likewise, the ability to hear background noise and distinguish sounds within speech is important.

When you lose basic hearing functionality, you don’t really take into account what is actually happening to your brain, how your hearing and some vital areas of your brain are connected, and how ripping and wrinkling this particular trail on your map is leading to worse problems that will cause you to gradually decline to the point where, hey, sorryyou can’t wipe your own ass now.

That is exactly what is happening, though. Hearing loss is a lot more complicated than just (it’s more annoying to me than you, promise) repeating “Huh?” over and over. My co-workers have witnessed me standing up from my chair countless times to place my ear to the window in order to comprehend the information that someone (masked) is attempting to relay to my damaged ears. “Sorry?” Yeah, you bet I am.

My hearing tests I’ve taken over the years have been helpful in mapping my current status of hearing damage. The area gauging how well I hear soft sounds (S, F, TH’s) drop well below normal, resting just above the “Recommended for Surgery” line. When I place my hearing aids inside of my ear, the calibration of these devices amplifies those sounds for me, as well as any other levels that need amplified and equalized- which are sadly, many. But this allows me to not only distinguish the words that others are directing to and around me, but also allows me to speak more clearly myself and actually engage in a meaningful conversation. I can also meditate much easier now. Meditation is the topic for Monday, though.

Another useful bit about this auditory testing allows you to determine whether your hearing loss has, over time, made an impact on your ability to comprehend speech or sound. My results proved that despite my hearing loss, I have yet to be affected in my area of comprehension. Meaning, I’m not a total dumbass for not responding to you. It isn’t that I can’t understand the meaning of your word usage, it’s that I just didn’t hear every sound you made. This is something to consider when verbally communicating with someone, especially while wearing a mask. I can’t read lips in this scenario, so the time it takes me to respond may increase and I might look confused until that happens.

Just smile and nod.

When you have spent years literally adjusting to the noises around you, you tend to work harder to do more of the L word. Just Listen. Listening is something that a lot of people seem to despise. I enjoy listening to the world around me, but especially to music. I have made so many playlists over the years, like little personal friends of mine. These songs have kept me company, in a strange way. It always helped me to escape the ringing by placing the headphones on my head and immersing myself into an album. It was what, I felt, kept me from going mad. Mad World

I am now happy and grateful that I have the ability to hear the outside world better and the inside world less thanks to technology and science. Hopefully, this will keep me engaged longer and I can slow the downward spiral to a pace which will keep me living independently, longer. I hope that my short piece today can help shed light on an actually kinda important issue. Just listen to her.

The Horrible Bitch that is Dementia

This entry was originally published on my website, Live Onawa, January 12, 2021.

I’ll begin by sharing a paper I wrote back in 2015 exploring the use of non-pharmacological therapies to engage a person with dementia. Beginning here:
The purpose of this statement is to substantiate my view that simulated social stimulus in the form of a life-like baby doll or stuffed animal helps in engaging a patient with dementia in a nursing home setting to generate warm feelings and reduce agitation. Through this research, I wanted to examine non-pharmacological interventions to deal with dementia patients during aggressive behavioral outburst. Is it really useful in creating a distraction from harmful or threatening situation? It seems to me that the dolls keep the dementia patients distracted more than those who do not have one. Some authors consider doll therapy as controversial due to its ethical nature and consider doll therapy as “infantilizing for patients who end up being treated like children” (Hughes et al., 2006). Perhaps dignity is the issue for some, however, certain things are done for the safety of the patient, and I personally see no reason not to use this method if it is effective. Although, in order to achieve the greatest likelihood of success, it is important for the caregivers to understand the patient’s attachment/relationship with the stimuli, cognitive status, and past history. Meaningful stimuli needs to be considered and explored to maximize the desired benefit for persons with dementia. It is pertinent to conduct more trials with less bias and with larger samples to see the efficacy of such non-pharmacological interventions amidst our dementia population. In my experience, there have been instances in which the doll caused more distress. For example, one patient became distraught because she didn’t know the dolls’ names and felt they had been abandoned. Otherwise, I have seen mostly positive results. Interpretations of doll/stuffed animal therapy enable health care providers to maximize the positive outcome of providing stimulus with greatest likelihood of success (Cohen-Mansfield et al., 2010).I interviewed a Nurse Practitioner (NP) who works in the dementia unit of a Nursing Home (NH) my employer services. She has witnessed positive results in the NH when a doll/stuffed animal has been introduced to geriatric clients. According to her, this sort of stimulus seems to fulfill a sense of purpose, and provided a calming effect while keeping the patient engaged. She emphasized the doll/animal should appear as realistic as possible (S. Hasgrove, personal communication, January 20, 2015). This NP’s experience corroborated with the results of Ellingford et al. (2007) post study analysis that “These authors found an increase in doll users’ positive behavior following the introduction of the dolls and a reduction in negative behaviors and aggression”. Amongst geriatric patients suffering from dementia in nursing home settings, how does simulated social stimulus like doll/stuffed animal compared to no stimulus reduced behavioral disturbance and wandering within three months of exposure to stimulus? In conclusion, this finding is consistent with studies showing that increasing resident engagement through individualized activities is associated with decreased agitation. However, we cannot disregard the severity of dementia that is a significant factor, as severely demented became increasingly disengaged from the stimulus overtime. Future research should focus on the development of targeted individualized interventions based on the cognitive and affective profile of dementia patients with behavior disturbance. Reference List:Cohen-Mansfield, J., Marx, M., Dakheel-Ali, M., Regier, N., Thein, K., & Freedman, L. (2010). Can agitated behavior of nursing home residents with dementia be prevented with the use of standardized stimuli? Journal Of The American Geriatrics Society, 58(8), 1459-1464. doi:10.1111/j.1532-5415.2010.02951.xEllingford L., Mackenzie L., Marsland L. (2007). Using dolls to alter behavior in people with dementia. Retrieved from http://www.nursingtimes.net/nursing-practice/specialisms/mental-health/using-dolls-to-alter-behaviour-in-patients-with-dementia/201683.articleHughes J. C., Louw S. J., Sabat S. R. (2006). Dementia: Mind, Meaning, and the Person. New York: Oxford University Press

Now, I have worked in mental healthcare facilities from Cullman to Decatur to Madison to Huntsville, and have scribed for geriatric providers who see nursing facility residents who suffer from this God awful disease that affects the brain in the literal sense. Because it physically affects the brain by shrinking some areas, depending on which areas are most impacted, the loss of brain tissue negatively impacts the person’s processes of speech, thought, motor abilities, etc. Whether ripping the person from their fond memories, or the sense of who and where they are, their social or communication skills, or their physical capabilities, there are a number of ways that this disease affects the person. If you have never cared for someone with dementia and have no experience witnessing its effects, you would be amazed at the every day tasks we perform effortlessly without realizing how impossible it might be for anyone else. Most of the notes I scribed were vague and consistent, using very average and uninspiring treatments that basically allowed the provider to be on her way. Week after week, I would see either stability or decline, no real progress- nothing to leave me with a satisfactory feeling. This troubled me, especially years later, after having experienced working with dementia patients first hand.
To elaborate, I have also worked as an activities director in a nursing facility that maintains a hall specifically treating men and women who have been diagnosed with various forms of dementia, including a majority who suffered with Alzheimer’s Disease, Parkinson’s Disease, and forms of dementia likely brought on by severe trauma and even heartbreak. For example, a prominent community doctor began showing signs of dementia shortly after his daughter was murdered in cold blood by a stalking ex-boyfriend. This incredibly educated, hardworking and caring man just shut down, and I was able to communicate with him during our time together because I could look him in the eyes and give him encouragement to do a task as simple as removing his shoes, whereas other facility workers often had difficulties and would require an additional worker to assist, using (gentle) force. But I somehow tapped into his emotional distress, found him, and was able to communicate in such a way he would willingly follow my soothing tone, in giving him simple step by step instruction. I was also able to communicate with a woman who was once a successful and independent business owner and prominent community leader (especially in her church family) in a way that was so efficient, other colleagues (including nurses and her therapists) often called me the “Betty-Whisperer”. (Her name is changed for privacy issues.) This woman would fight and scream and act like a completely different person unless I was present. I would use a calm, light tone and was incredibly patient and would use distractions sometimes in order for her to follow instructions in order to get her dressed, fed, or participate, etc.
Both of these superb people whom I love have since passed on, which in a way, I look at as a blessing to their own benefit because there is not one shred of doubt where their souls now reside. But that’s another thought for days that have already passed, too. And I moved on to other things now- although I’ll carry those lessons with me always.
I write this ahead of the real message I want to share to give you an idea of how challenging it is for us- people who do not have this disease- to understand and communicate with people who do. If we just take time and effort to listen, you will be astonished at what you might learn. Now, on to my story about my experience in listening to a particular person who would have lengthy and repetitive conversations, someone who helped me understand an issue that it still prevalent today.
Changing her name to protect her identity, I will use Rose.
Rose was a lively, organized, and educated woman. She kept up with the date, marking her calendar daily, took notes (a bit sloppy and unorganized), could mobilize easily with her walker, and was very well groomed and socially active. She loved participating in all group activities, especially activities outside. She is now 89 years old, and has lived with dementia for a number of years. She holds a Masters Degree in English, was a world traveler, a nationally acclaimed competitive dancer, and worked and retired from the Redstone Arsenal in Huntsville, Alabama. In her time working for the US Government, she wrote pocket manuals, assisted big wigs, watched countless rocket launches, and even laughingly expressed to me that she and other government employees would “take a bus to Nashville to see the Grand Ole Opry every weekend on taxpayer money.” Amazed, but not surprised in the least, would be my reaction (the first, second, and twenty-third times in hearing her story). What was surprising to me, however, is the fact that she is (and often spoke about being) half Cherokee. It isn’t everyday you encounter a half-Cherokee world travelling woman in Alabama at her age who holds a Masters and is retired from a still prominent government facility. But she would, very precisely, detail these concreted stories about her life because it solidified her identity- one of the few things she was able to hold on to. (Imagine losing a husband of forty years, your career, your opportunities to travel, your home, your independence… imagine how sane you would be.)
In almost every verbal encounter we exchanged, she would never fail to mention that her mother was a full blooded Cherokee. She told me this because she sensed I was of a similar heritage and she asked me if I had any Cherokee blood in my family, to which I said yes. She would then talk about her mother, who was an expert seamstress and taught her how to sew. Her mother had two children- Rose and another son, who had “white cotton hair, fair skin, and blue eyes”. I couldn’t help but think- “I wonder what that must have been like, considering she was physically polar opposite and had been uprooted from her way of life to be acclimated to the white society she was forced into.” Nevertheless, Rose always claimed her mother loved life and was just happy to be a part of the society so that her children could get an education and all the benefits that come along with the acclimation.
Still, my heart continues to break- especially now, after all the recent events involving native peoples and their rights, land and culture, etc. It really is a shame that one has to acclimate to another society just to thrive in this life. It is, without a doubt, very unfair. This is what prompted me to share this particular story. I have heard numerous times from Rose that she “just had the best life- there’s not a day I don’t regret”. That makes me happy to hear, especially considering the unfathomable sacrifices her mother- and no doubt her mother’s own family- had to make in order to gain benefits only offered to those who followed suit. It must have been deeply painful for her, which is likely why she was such a dedicated mother and fervently took part in one thing from her heritage that could be carried over into the American pattern- needlework, a pastime that she taught her own flesh and blood.
Rose was subsequently moved to another facility to be closer to family, and I have not seen her in over a year’s time, but I imagine she is still sharing her very important narrative with any one person who is willing to listen. I hope they can take similar lessons away from her just as I have.

If you know or love anyone with dementia, especially if they are still under facility quarantine, please understand their best treatment is your presence of mind in speaking with and listening to them, and that’s if they even have the ability to speak. Otherwise, look into a lifelike baby doll. You’ll be amazed what a little music can do, too.
For more information on the challenges of being indigenous and to learn how you can better support these suffering communities and the independently owned businesses launched by these hardworking people, I encourage you to visit these websites: