I have had a bi-lateral hearing loss since the age of twenty-five. By Christmas of 2003, my hearing loss had become so profound that communication had become very difficult. Even with the aid of two BTE hearing aids, assistive listening devices, and speech reading, trying to communicate had become very difficult. In the fall of 2004, I began investigating the cochlear implant and was evaluated at Johns Hopkins in Baltimore. I was told that I qualified for implantation in "either" ear. I chose to implant my "worse" ear, which is my left one. On April 6th, I was implanted with the New Freedom, recently released by the FDA. I was activated on May 13th. I am hearing in a whole new way, and my life has completely changed! I did not think I would hear this way again "this side of Heaven"!
Wow! This photo is from 1972. I was in a body cast from the chest down and had to sleep a lot. Prior to the TBI, I slept on the top bunk in a room I shared with a sibling. There was no lifting me that high so I spent much of my recovery on the couch. Mom slept in a nearby recliner. Traumatic Brain Injury as a child meant that my saying “I don’t remember my early childhood” wasn’t at all unusual to declare. Even abled folks in their 50s say, “I can’t remember back that far”. My parents worked hard in my rehab and by third grade I was back in school. I would eventually become deaf and acquire a vestibular disorder, but I had a terrific childhood living on a farm in rural Colorado.
Fast forward 50 years. TBI, like many traumatic injuries, is “the gift that keeps on giving”. I don’t even mean that in a particularly snarky way, as my disabilities have opened up so many opportunities for me during me life. The downside, however, is that when the brain is injured in a significant way a survivor will always have repercussions. For me, it meant 11 concussions, broken fingers, hands, toes and numerous hospital visits. It has meant learning disabilities and cognitive challenges. It meant that it took me 16 years to finish all my degrees. It has meant a very real struggle to stay on top of serious depression and anxiety.
Having fought, struggled, and persevered, having cried, grieved, and given up SO MANY TIMES, on this side of having survived 50 years, I can say “My Life Matters“. For over 3 decades, I have used something “bad” for something very, very GOOD. I am an advocate, a teacher, a passionate voice for those who often have no voice. My TBI gifted me with my “calling”, and became the impetus to fight the fight for those with disabilities.
I am one of the lucky ones, however. Are you a parent? Research and gear up with all the knowledge that you can about how to keep your child’s head safe in play, team sports, and recreational activities. Treat concussions seriously, even mild ones. Don’t hesitate to enjoy life, but enjoy it safely. Enjoy it while protecting that wonderful brain of yours. You cannot put a cast on a brain and hope it heals straight. Preventative measures are all we can do.
I anticipate that what I write this week will upset some folks who live with disABILITY or chronic conditions. If you would, “hear me out” until the end of the post. If you still disagree, I can easily “agree to disagree” and even concede that the power of optimism is often the key to overcoming real obstacles.
My main point? Do not tell a person with disABILITY that: YOU CAN DO ANYTHING!
This standard platform statement is normally accompanied by volume and higher pitch, with a pom-pom smacked to the face of anyone not paying attention. Educators like myself sometimes misuse this encouraging statement. Administrators may assume the statement is standard for any mandatory attendance meeting, certain to help liberate the doubtful and unify the group, lighting them on fire with enthusiasm.
Last semester I sat and cried with a student having to drop my class. Like me, she is a TBI survivor. Her dream job was to work in a big hospital and oversee support groups for individuals and families who are experiencing life with traumatic brain injury. She wants the “shingle”, the Ph.D., the training to really make a difference. I believe she will reach her goal. She will reach her goal after a longer road than most. There will be setbacks. There will be obstacles. I shared with her that it took me 16 years and a lot of outright stubbornness to finish school. Accommodations made the attempt more equitable but honestly, I shared, “it took not giving up and recognizing my pathway to goal was a longer one”.
I have had short-term mentors tell me YOU CAN DO ANYTHING! (My long-term mentors had a more realistic approach). However, pom-poms, enthusiasm, and genuine hopefulness will never:
… allow me to hear normally.
… walk without a limp.
… have vertigo-free days.
… help me be as sharp at the end of the day as I am at the first.
… keep me from needing more sleep than others.
… prevent me from ever falling again.
… alleviate my communication challenges.
… prevent me from feeling isolated and left out occasionally.
… stop the loss of vision in my right eye brought about by 11 concussions.
… interrupt every single panic attack.
… defeat persistent depressive disorder.
… keep me from missing my Mom, the primary REALIST in my life.
Frankly, there are some things I CANNOT do. Any successes or “wins” are the result of stubborn persistence. Any recognitions or awards are from finding a different way to accomplish the same tasks. Many “end results” were not something originally targeted. There are things I CANNOT do and tasks I will NEVER be able to do. Instead, I have learned to set my sights on something obtainable. I have learned to align my goals with things that are possible. I have even learned to dream and “pin my hopes on” goals that are doable for even one such as I. In the end, most of us aspire to make a difference. If you find yourself looking around at the place your training, hard work, and experience have landed you thinking, “Well gee. This was a major detour but gosh darn it! I’m happy and I’m making a difference!”
Perhaps the big DIFFERENCE we make was something outside our imagination originally. Reality redirected our purpose with an unexpected detour. Yet here you are, thriving…influencing… and KILLIN’ IT! Having a sense of real purpose looks good on EVERYONE.
I have talked with students and colleagues hesitant to ask for some extra time or an equitable accommodation because they fear being judged that their performance is only possible through props others do not need. Y’all? There is a heck of a lot of difference between equitable accommodations and “hand holding”. This photo says it all:
I received an email from a follower of Hearing Elmo around Christmas. They are on disability, with limited transportation and even more limited opportunities. They shared that at times they are discouraged because they feel limited in what they can do. But folks? The opportunities this reader has are golden, the lives they touch are valuable. They consider their purpose and mission to advocate, educate, and touch just one life at a time. They support and encourage LGBTQ+ young adults with disability and act as a sounding board, a shoulder to cry on, and are a stout champion to a truly marginalized group.
Are you an abled administrator, director, co-worker, or friend? I encourage you to use realistic encouragement and language as you lovingly support the folks in your life who have special challenges to overcome. Having YOU helps them overcome. Be careful not to balk at a seemingly unrealistic goal. If people with disability are anything y’all, they are realists! If you are blessed with an invitation to chart a path alongside someone who is determined, then LISTEN, research, encourage, and advocate on their behalf.
A well-meaning friend and I had our behinds parked on a bench on campus catching up with each other. Some geese flew overhead, flying in a perfect “V” and heading South for the winter. My friend said, “Wow, what a racket!”
I grinned at her and said, “Well I don’t hear anything!”
Abashed, she said, “Well at least you can see them, right?”
I said, “Sure! And I do LISTEN with my EYES sometimes!”
However, unless a big ol’ goose comes waddling up to my side and honks right in the direction of my cochlear implant, I’m not gonna hear it’s unique sound y’all. This doesn’t mean that I do not have a purpose since I cannot hear a goose honk from high above while flying in formation. My disAbilities make me uniquely qualified and effective to make a difference in the lives of those in Denise Portis’ sphere of influence. Y’all have a sphere too. Manage it. Own it. Thrive. Because all of us are pretty…
There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).
I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.
“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.
Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).
This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.
We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.
L. Denise Portis, Ph.D.
2022 Personal Hearing Loss Journal
Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.
University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/
Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.
Many of you know that I am a psychology professor (although I do teach American Sign Language as well) at my local community college. This week is finals week. My students are stressing big time. I have been teaching since 1990 and teaching college-aged students since 2011. This is the most “stress” I have ever felt coming off of students. It may be because for many this was the first semester back to a “near normal” semester. Many who have come right out of high school may have spent the last year or TWO doing most coursework virtually. Our final exams are face-to-face in a designated time slot (to keep any student from having an overlap).
Finn Paz-Gurion is my 3rd service dog, a 4-year-old Golden Retriever. Out of my three service dogs, Finn is the most likely to seek out hurting students. My first had some Golden in her mix and she many times did the same, but not to the degree Finn does. Finn behaves as if it is part of his job to check on students. I have noticed this week that Finn has noticed everyone seems stressed. He hesitantly approached a student with their head down on their arms and poked his head up underneath to say HI. The student sat up and greeted Finn, but in eavesdropping they proceeded to tell Finn how stressed they are. Finn made sure they knew he cared and was listening. He did this several times in each of my classes. One student exclaimed, “Oh Finn! You know I’m stressed!”
I am a mentor for a some adjuncts and one told me this week, “I’m stressinating!” I did what I could to alleviate some of that <big grin>. I also serve as a Disability Mentor for one professor and one doctoral student (both with disabilities) through the American Psychological Association. They are both stressing as well, stated without hesitation in our two zoom conferences this month.
Stress is not ALWAYS bad. At times it serves as the best of motivators. I have certainly found the comeuppance to finish what I have started due to some stress related to due dates and timelines. Stress can also be bad, even dangerous. Hans Selye, founder of the “stress theory”, provided some terrific research and science related to stress.
I find myself in the resistance stage more than I care to be. Resistance, like stress is not necessarily “bad”. In this stage, a person with disability (or an abled person) creates and implements coping mechanisms and the means to achieve goals with perhaps some self-created accessibility tools or options. A small example of this is push-button accessible doors on my campus. Walking up to an entrance, I can feel my stress elevate. Will the automatic door be turned on correctly? If the outer door opens, will the inner door open as well? If it doesn’t I’m trapped between doors! Finn can “potch” (Yiddish for PUNCH… I cannot find a Hebrew word for the action word), but few doors on campus are sensitive enough to respond to a dog punch. Instead I clobber the button with the tip of my cane. If I am lucky, the door opens. Luckier? Both doors open. If I am not lucky? I have to ask for assistance. This “asking” can be difficult for an independent-minded person with disability. So the resistance phase is good… I’ve learned to adapt and even ask for help as needed. Even so, if I have to fight with the doors all week, I can promise you that by week’s end I am exhausted.
As a psychologist, I have recently been reading about the research associated with the Disability Related Stress Scale (DRSS). The World Health Organization has given a temporary “stamp of approval” for reliability though more research is needed to determine validity (Rhode et al., 2012). Do people with disability experience stress the same way and similar levels as those who are abled? Is the stress related to the disability?
I have been a person with disability for long enough, I truly believe I experience very little stress as a DIRECT result of my disabilities. I cope, modify, and “fight on” when I experience the effects of my disabilities. Instead, the stress I find the harder to cope with is that of the reactions or “in-action” of people around me. Do they see me or see my disability? When they make decisions about DEIA (diversity, equity, inclusion, and accessibility) issues, are they considering the impact of those with visible and invisible disability, illness, and diagnoses? Are people with disability invited to participate in committee making these decisions? Are they invited to provide workshops or other disability-related education and advocacy?
As a person with disAbility, how does “stress” impact your life?
L. Denise Portis
2022 Personal Hearing Loss Journal
Rhode, P. C., Froehlich-Grobe, K., Hockemeyer, J. R., Carlson, J. A., and Lee, J. (2012). Assessing stress in disability: Developing and piloting the Disability Related Stress Scale. Science Direct. https://doi.org/10.1016/j.dhjo.2012.03.002
In many ways technology has eliminated some of the barriers people with disAbility have faced as captioning, audio description, special keyboards and applications, and inclusive design have been made a priority and even requirement at many schools and workplaces.
I am very grateful that my career is on a college campus. College campuses, at least in my experience, work hard to meet the needs of diverse groups of people. Outside of campus is a different story.
My mother died on March 6th from ALS. It was 8 months after diagnosis and it was not a “good death”. At the end of March, I contacted my therapist whom I’ve not seen since 2016. She has since began focusing on eating disorders in youth and referred me to a colleague as she did not have any “openings”. I made an appointment and went to the office for the next available. Unfortunately, miscommunication occurred and she was terrified of dogs (Finn goes everywhere with me). Her office was tiny and barely held the 3 of us and the smell of MICE was so evident, I was wrinkling my own nose as much as Finn was distracted in sniffing every inch of carpet. Needless to say I needed a “PLAN B”.
I strive so hard to be independent, and it gutted me when I discovered that mental health organizations were still mostly doing virtual visits. Very few were doing face-to-face sessions. In hindsight, perhaps this was good since any medical facility I go to still requires face masks and my communication issues are tripled in complexity when trying to hear through a face mask. However this is a different story better retold in another post about how hard it is to WEAR a face mask when you have a cochlear implant and huge behind-the-ear hearing aid in each ear. They simply will NOT stay on!
Because I use the phone only with great difficulty, I would contact the clinic/organization through their website and filled out detailed forms to gain an appointment. I would get a standard email response to ‘please call the office at ###-#### during normal office hours to make an appointment’. When responding that I could not do that, many were not email clients that would accept a response… outgoing only. I contacted 23 mental health practices from the end of March to the end of October.
Backing up a bit, I have persistent depressive disorder (PDD) and panic disorder. These have been under control for a decade or more with medication. The grief of losing my Mom and the manner in which she died, dropped me about as low as I have ever been in my life. I began having panic attacks nearly every night from horrific dreams. I have gained weight and found myself sleeping whenever I didn’t have work to do. Work itself truly made a difference, for I love what I do and truly feel I make a difference where I can.
However, knowing I needed HELP and not being able to CONNECT with anyone, caused me to just sink into a state I’ve never found myself in before. Ironically, I am the advisor for “Active Minds” on campus. I know the warning signs and know when intervention with a mental health counselor is imperative.
I COULD NOT GET AN APPOINTMENT.
On October 28th, a Friday, my husband and I were both working from home and virtually that day. Before his day got started I went into his office with Finn, closed the door on the other puppies, sat down opposite his startled self and said,
“I’m in trouble. I am going to need your help to find a counselor. If I don’t get help I won’t be here by Christmas.”
To say his jaw hit the floor is an understatement. He knew I was feeling depressed but as I poured it all out for him including a plan to just stop the hopeless pain and suffering, letters to kids and a few others, etc., he cleared his calendar that morning and we got to work.
Over the next 2 weeks we enlisted Behavioral Health Services, part of our work’s employee assistance program. Over the next 3 weeks, I was contacted via email and through an online portal 3-4 times a week while Kentrell worked his butt off trying to help me get an appointment. Mr. Thomas was extremely frustrated in how hard it was to connect a person with disability to a counselor. (He is actually a licensed counselor). Kentrell and my husband found a way for me to stream a phone call through the computer and get live, accurate captions (Innocaption) and eventually connect with a new practice that specializes in grief, depression, and even disabilities.
It has saved my life.
Y’all? I am a fighter and I am strong. I am a disability speaker and award-winning advocate. I only share this to say, I NEEDED HELP AND COULD NOT GET IT.
Some of the things I was told when I was able to actually get a real person to respond to my email:
“We are sorry, we don’t allow captions in our virtual appointments because of privacy laws”.
“We cannot accommodate a service animal at our current location”.
“We do not have an accessible office space. Can you use the stairs?”
“Our counselor with an opening can do a virtual visit but prefers cameras to be OFF so that she can really tune into what is said.”
“You have vision loss too? Oh wow, I don’t think anyone here can see you” (pun unintended I’m sure).
This post may come as a surprise to some who know me. I thought long and hard about whether or not to be transparent about all of this on a public blog. However Hearing Elmo has always been all about TRUTH in the most vulnerable format, about transparency to promote and educate about disability rights, concerns, and advocacy. Even those of us who appear to have it all together sometimes DO NOT.
What do I hope this post conveys? Well, three things really.
We must change the way hurting people can connect to those who are trained to help. The connection should be 100% inclusive and accessible to all people.
Check in with those you know and care about. Not all is at it seems on the surface. Hopelessness loves to hide itself within false smiles and assurances.
There is nothing shameful about saying you need help. Let’s bury the stigma of mental health counseling in a place that never sees the light of day again.
After someone you love dies, you may discover some things about the person that you didn’t know. My Mom loved to sing. Because her generation (the “Silent Generation” 1928-1945) was different than mine (“Generation X” 1965-1980), the songs she would sing at breakfast (a normal occurrence) and in the evening were oldies. Breakfast was usually “Mockingbird Hill” (When the sun in the morning, peeks over the hill…).
When Mom was diagnosed in July of 2021, my siblings and I began to hear from her former students on FaceBook. As the ALS progressed and began to take away basic functions, we would read to her what her former students were saying. It was all good and brought many smiles and happy tears. While she could still talk, she would relay some story about the student that posted and it was as if she took us by the hand and walked us back to her teaching days. Mom was defined by what she did, a teacher. It was her real joy and privilege to teach for over thirty years.
One recurring theme from former students was that she would sing the first few stanzas of “Happy Trails” as they left class at the bell. Though knowing this song was a favored one, we were still shocked to learn she sang in public too!
I have been teaching now for 28 years. I have taught middle school, high school, and college-aged students. Having heard from so many of Mom’s former students since her diagnosis and subsequent death, it got me to ponderin’ — “what would my students have to say about me?” “Would they even remember me?” (Mom had been retired for 16 years at her passing).
Yesterday was the first in-person convocation we have had at Anne Arundel Community College since 2019. A recurring theme of the various administrators was to remember that the smallest things could make a difference. Even a taped message from the incoming SGA (Student Government Association) president reminded us that the “small things matter”.
I am a big believer in the difference “small things” make. For you see? It has been small things each and every day that have encouraged me to continue hiking that trail. My trail is not always happy, but it is a scenic and worthwhile hike.
People with disAbilities often express their concern that they do not matter anymore. Or perhaps they feel that with their disability, they can no longer make a difference. Many of you already know these things about me, but let me summarize some of my own challenges:
Late-deafened (25 years on)
Post Concussive syndrome (TBI as a kiddo and 11 concussions since)
Mental health diagnoses (Panic Disorder and PDD)
65% blind in my right eye (concussions)
If I had a dollar for every time I considered giving up, I could retire now! I’m no super hero. I’m not anything special. What I am is persistent and determined. Stubbornly resolved to connect at least one time each day with someone who needs encouraged, loved, high-5’d, heard, or acknowledged. Notice that none of these things require being an abled person! I know that many of my readers are people with disability or chronic illness. MANY have expressed to me the dismay they feel in being disabled, by NOT being able to make a difference. Their physical or mental health diagnoses have meant they have learned coping skills or learned a new way to do things. However, many still FEEL disabled because they feel as if these diagnoses take away opportunities for them to MATTER.
My friends? Please do not ever discount the difference it makes for you to be kind to the cashier at the grocery store. Smiling and saying a kind thing or two to the delivery person may completely turn their day around. Being kind and friendly to that young wait staff person can make a day that is crushing them seem not so burdensome. Send an encouraging email or message to someone you know is struggling. It can be life-changing for them. Make a phone call to someone you know who feels isolated. Take advantage of the way social media platforms “level the playing field” for those with disabilities through CONNECTING them with others. One small comment can make a difference.
I know this for a fact! I know because the
Deborah’s, Wendy’s, Kellie’s, Lisa’s, Candice’s, Sara’s, Stephanie’s, Kyersten’s, Felicia’s, Kimberly’s, and SO MANY more have taken 15 seconds to type me a message that encouraged me and rekindled my desire to keep on keepin’ on. I’m not saying it is EASY. For some, it may mean real “spoons” are used up (The Spoon Theory).
ALS is a horrible, terminal disease. My Mom suffered and died a terrible death. I’m still dealing with the fall out and likely will for the remainder of my own life. But do you know at the end, Mom could only roll her eyes, grin, and wink, but she did that as her hovering children did their best to love and care for her? She could speak some, but it was a real chore to understand, even with picture, word, and alphabet cards to assist while she could still point. Yes. There were days with tears and “why God?” conversations. Yet while DYING she continued to make a difference. These past 12 months cemented an already steadfast “heart beat” for me. NO MATTER WHAT, I can make a difference to someone. In my work as a suicide prevention and awareness advocate, one of my favorite sayings is “Your voice is your power”. Use it.
Choose to sing “Happy Trails” to someone upon departure. Choose to smile and say, “I truly hope you have a great day!” Sign to someone “happiness is a choice”. Send that email to a struggling soul, “I’m thinking of you today”. You have a purpose. It doesn’t matter how many disabilities or challenges you have. You still have the power to make a difference. This is your super power. Use it. It matters. Happy trails to you…
L. Denise Portis, Ph.D.
You are an inspiration. I love every blog you write. This one is amazing.
You are amazing! and such an encouragement to me!!! thank you. Silvia
All well said, Wendy!
I just realized I forgot to finish my thought in the first paragraph. I think when you say this kind…
I can so relate to this, Denise! I recently read an article written by a well-meaning parent of a child…
During the Spring 2022 semester and after the home going of my mother on 2/28, I kept telling myself to “hold on” until this summer for some mental health R&R. My department coordinator and chair were both very supportive of my taking the summer off from teaching. This is a break I have not taken advantage of for the past 12 years. My plan was to see my counselor. Write. Be active in some virtual online support groups that included Zoom weekly sessions for those specifically grieving the loss of a parent.
My counselor did not have any openings. A colleague would only see me face-to-face or Zoom. I tried one session in her 4 foot x 4 foot office and realized having a cane and a large service dog, this option would not work. The office also smelled of mice (recently re-opened) after COVID lockdowns. Finn was super distracted (with reason). I opted for Zoom. She said she couldn’t use captions because the organization’s account didn’t support them. I sent her website after website of how easy it is to click the button to make all Zoom accounts “live transcript accessible”. She continued to insist. I’m back to looking for help now. I’ve received 2 emails back from some places that asked me to call for an appointment. I explain why that is difficult, they tell me they don’t make appointments via email or text. ??????????????
This morning I received an email from the 4th online support group that I have tried to join. All say they cannot use captions on their Zoom accounts (yes, even after my kind instructions of how to do so) with the exception of one. This group leader and LPC said she could not use captions because many in the group had heavy accents and the captions would not be able to caption their words correctly and this would cause them discomfort.
An online forum I have joined (the leading grief online forum in the world) told me that I needed to get an interpreter from my state. I explained again that Zoom has captions that are easily enabled by the account host. That was 3 weeks ago and they have not responded to my 4 emails since.
It seems grief is not accessible for many in the disability community. I plan to start an online support group in the future that IS accessible to all. However, I cannot do so now. I AM GRIEVING. I am the one who needs help right now. I can’t help others if I’m struggling to help myself.
So… I’m reading. A LOT. Some of the titles include:
“Devotions: The Selected Poems of Mary Oliver”
“Disappointment With God” by Yancey.
“Always to Soon” by Gilbert.
“Healing the Adult Child’s Grieving Heart” by Wolfelt.
“Rip Van Winkle” is set in the years before and after the American Revolutionary War in a village at the foot of New York’s Catskill Mountains where Rip Van Winkle, a Dutch-American villager, lives. One autumn day, Van Winkle wanders into the mountains with his dog Wolf to escape his wife’s nagging. He hears his name called out and sees a man wearing antiquated Dutch clothing; he is carrying a keg up the mountain and requires help. Together, the man and Wolf proceed to a hollow in which Rip discovers the source of thunderous noises: a group of ornately dressed and bearded men who are playing nine-pins.
Van Winkle does not ask who they are or how they know his name. Instead, he begins to drink some of their liquor and soon falls asleep. When he awakens on the mountain, he discovers shocking changes: his musket is rotting and rusty, his beard is a foot long, and his dog is nowhere to be found. He returns to his village, where he recognizes no one. He arrives just after an election, and people ask how he voted. Never having cast a ballot in his life, he proclaims himself a faithful subject of King George III, unaware that the American Revolution has taken place, and nearly gets himself into trouble with the townspeople until one elderly woman recognizes him as the long-lost Rip Van Winkle.
King George’s portrait on the inn’s sign has been replaced with one of George Washington. Van Winkle learns that most of his friends were killed fighting in the American Revolution. He is also disturbed to find another man called Rip Van Winkle; it is his son, now grown up. Van Winkle also discovers that his wife died some time ago, but he is not saddened by the news. He learns that the men whom he met in the mountains are rumored to be ghosts of the crew of the Halve Maen, captained by English sea explorer Henry Hudson. He also realizes that he has been away from the village for at least 20 years. His grown daughter takes him in and he resumes his usual idleness. His strange tale is solemnly taken to heart by the Dutch settlers, particularly by the children who say that, whenever thunder is heard, the men in the mountains must be playing nine-pins.
(“Rip Van Winkle”, 2022)
While researching for this post, I realized for the first time in my 50+ years that I did not know the full story of ol’ Rip! I knew he was a man who fell asleep up in the mountains and didn’t wake up for years and years, but evidently the specifics were never imprinted in my memory banks. I was investigating Mr. Winkle because I have been having significant sleep disturbances and insomnia. I am going to make a point with this fairytale, but after reading the FULL STORY I have to put out there some recommendations:
Don’t Google “Where are the Catskills Mountains”, if you think they were named that because of killer cats.
Don’t escape to avoid naggers. Sit down and talk it out. Hold hands.
Don’t assist strangers if their need is to help carry a keg.
Beware of bowling outside. There are air conditioned Brunswick lanes everywhere.
Don’t drink Dutch liquor.
SET YOUR ALARM
So Rip got a whopping 20 years of sleep in and still managed to wake up stressed, confused, and out of it!
My mother passed away on February 28th from ALS. It is a horrible disease and it was not a “good death”. I miss her. All of the normal kinds of grief have impacted my ability to get a good night’s rest, but unfortunately her end was traumatic enough that I am plagued with nightmares. I’m sure MANY people feel this way about a loved one who passes. However, I have been SO MAD at God that my precious Mother, who impacted so many people beyond the impact on her children, would die of such a horrible disease. Don’t worry. I’m seeing a counselor and am part of a grief support group. Even psychologists need mental health help sometimes.
I’m blogging today to remind all of you, including my readers with visible or invisible illness or disability, that sleep is important. Everyone knows this and yet so many of us are sleep deprived, sometimes chronically so. The Centers for Disease Control and Prevention (CDCP) report that adults need at least 7 hours of sleep in a 24 hour period for best physical, emotional, and mental health (CDCP, n.d.). “Short sleep duration is defined as less than 7 hours of sleep per 24-hour period” (CDCP, n.d., para. 1). Short sleep duration means sleep deprivation. You should check out the link below in the references! There are numerous maps that show where Americans live impact those who may be sleep deprived. I found it quite interesting!
I am a late-deafened adult and am bimodal, hearing with a cochlear implant (left) and high-powered hearing aid (right). I also have Ménière’s disease, a vestibular and balance disorder. These disabilities are readily transparent in posts at Hearing Elmo. What many may not know is that I also am a TBI survivor (traumatic brain injury) and have Post-concussive syndrome. Essentially, I have problems with short-term memory. I have learned numerous ways to cope with this – perhaps I will expound on it in a future post! I share this, however, because people with disabilities generally require more sleep than other adults, and
I AIN’T GETTIN’ IT.
According to the Rehabilitation and Training Center in Washington, “40% of people with disabilities report long-term difficulties with sleep” (Jensen & Terrill, 2012, para. 4). This in turn exacerbates and worsens disability by worsening depression and anxiety, pain, fatigue, and irritability (Jensen & Terrill, 2012). For someone like myself with comorbid diagnoses of Major Depressive Disorder (Dysthymia) and Panic Disorder, this means a dramatic impact on the mental health disorders I “own”. It also impacts my physical health. My blood pressure is higher, my cognitive skills are impacted, and I am falling more. The latter is not something I, nor my neurologist, want in a patient with chronic concussions! Hayes (2018) explains it well when she explains that when you sleep a person’s body and mind go to work on healing and balancing. I am not healing or balancing. (Slight pun there as I have a balance disorder). A person with disability likely needs between 9-11 hours of sleep in a 24 hour period. I would provide the references for you on that, but frankly there are so many it would create a jumble of boring references instead of “blog information” for you. If you do not believe me, research scholarly sources for disability and recommended hours of sleep.
What’s a Person with Disability to Do?
(See what NOT TO DO in the list above about our friend Rip Van Winkle. Especially avoid Dutch liquor).
So what is a person with disability to do if they are not getting the recommended hours of sleep? I am dealing with the effects of grief and depression on top of my regular challenges. Knowing I need 9-11 hours of sleep does not mean that I will get that amount simply because I know the research about the amount needed. It’s pretty simple really.
MAKE SLEEP A PRIORITY.
I know! I KNOW! You are shaking your head “un-unh” and “NOPE” , telling me there is no way you can get that amount of sleep. You work. You have relationship obligations. You have a life to live! I can tell you that you are NOT going to live it if you do not make sleep a priority. At Hearing Elmo, you will find more than one post about the importance of sleep to someone living with disability. I know from experience that I can get around 7 hours of sleep a night, but I never get that all in one block. The grief and nightmares for one thing are impacting my ability to get a large “block” of sleep. Now I am waking up at least once with a new puppy and her potty break, and insomnia-related issues. I am getting 3-5 hours of sleep each night… just not all at once! This means:
Denise needs naps.
When I state this I mean with all seriousness that I MUST take naps. Yesterday, I had six hours of IPD (Internal Professional Development) workshops that meant I did not get my naps in during the day. Since this meant I was “wingin’ it” on 3-5 hours from the night before, I fell 9 times all after 12 noon. Two of those falls including a knock to the head, but thankfully after years of vestibular rehab and learning to “fall safely”, I managed to avoid a concussion — THIS time.
I know as a person with disability I need more than 7 hours of sleep to thrive (check).
I know as a person with disability I need to make sleep a priority (check).
Ok. So where do we go from here? (I’m glad you asked! <big grin>).
Things I have found that work:
Eat healthy and practice fasting before bed.
2. Religiously follow a bedtime routine. this includes:
A) No television or “bright screen” viewing at least 2 hours before bedtime,
B) Practice mindfulness. For me this means deliberately thinking about and dwelling on positive things such as favorite authors and/or poetry, stretching, taking my hearing assistive devices off early to eliminate extraneous noise, checking off things I am worried about or concerned about and with FOCUS shutting that “worry journal” and reminding myself to revisit if needed TOMORROW, pamper myself with a foot massage or manicure, do laundry (I know this one is weird but Finn, my service dog, helps me and I find it incredibly relaxing!),
3. Lock up the house (my OCD demands it).
4. Settle and prep my “nest”. (I cannot lay flat because of my vestibular disorder, so I have a variety of pillows and supports that I use to sleep upright). I make sure that my Finn, my service dog’s alarm clock is set and double-check it is correct.
5. Eliminate pain. I suffered a severe sprain and torn ligaments in my right ankle after concussion #6 in 2012. Even after hours of rehab and special braces as needed, I always go to bed hurting after a day of walking on this ankle. A cane and service dog can only eliminate some of the stress on this important appendage! For me, taking two Tylenol PM at bedtime is enough.
6. Avoid caffeine after 12 noon. Some folks may be able to caffeinate later in the day with no impact on their sleep. I am not one of those people.
7. Sleep in a cool and dark room. Experts add “quiet”, but hey! I’m deaf! I do sleep with black-out curtains, fans, and a lowered thermostat at night.
8. Go to bed and wake up at the same time 7-days a week. Yes! Even on the weekend!
9. Avoid alcohol before bedtime. This is easy for me since I cannot drink alcohol because of my balance disorder.
10. Exercise 20-30 minutes a day, but at least 3 hours before bedtime. I have found some terrific options for standing exercises with minimal changes in “head altitude” (which causes vertigo). This has many benefits beyond sleep hygiene, but I have learned I have to do this by early afternoon.
11. When I take my “make-up naps”, avoid doing so after 3 PM.
12. Use my weighted blanket. This helps my anxiety disorder as well as supports my efforts of avoiding insomnia. Finn (my service dog) has also been trained in DPT (deep pressure therapy), but he isn’t as heavy as my weighted blanket. I have found that something that doesn’t breathe, wiggle, or expel doggie breath in my face works better. He gladly assists during waking hours though.
13. See the doctor when needed. Because I am a concussion patient and TBI survivor, I check in with my neurologist at least twice a year. These visits always include a review of my sleep schedule.
14. Take advantage of natural light during the day. Natural light assists with circadian rhythms. My office and much of my home has big windows that I take advantage of whenever possible.
15. Avoid clock watching. My Apple watch tracks how much sleep I get each day, including REM sleep. I consciously avoid looking at it though! I have learned that if I have a clock I can see from my sleeping position, I pop awake all night to note the time. (Maybe I’m afraid of some Rip Van Winkle magic?). My alarm clock is where Finn can hear it. I have conditioned myself NOT to check my watch or any other form of time keeping.
16. Wisely manage my prescriptions. Some of my medications to treat my disabilities and mental health diagnoses, can impact falling asleep easily. With input from my doctors, I carefully manage WHEN I take my ‘scripts each day.
So… BACK to Mr. Winkle! There are times I wish for a 20 year nap. I think about how rested I would be and so full of energy! Obviously, this isn’t something any person can do so the next best step is prioritizing steps 1-16 above. What are some other ways you have found that assist in good sleep hygiene as a person with disability? Please feel free to share in the comments.
A common theme of many posts on “Hearing Elmo” is that one of the hardest things about being a person with disAbility is that we experience all the normal challenges, trials, and heartaches that everyone else does. It means that like all people, we will experience things like broken relationships, health crises (related or unrelated to our disability), unemployment, grief, unfair criticism, financial challenges, repercussions of poor choices, stress, mental health challenges, flat tires, cavities, unexpected zits, stepping on a hair ball on our way to the bathroom late at night, lost contacts, doctors with poor people skills, and days we won’t solve the Wordle.
Life is hard and not just for those who live with disAbility.
Life is also very, very good.
As a psychologist, I am often shocked by how I do things that are unhealthy when I TOTALLY know better. Things like…
Staying super busy so I cannot get bogged down in the FEELINGS.
Refusing to cry because I know I may not be able to stop.
Working really hard at never being alone with my thoughts.
Behaving as if I am strong and have it all together.
All this pretense is exhausting y’all. I am so So SO SOOOO tired.
I’m a co-advisor for a campus student club/chapter of Active Minds. One of the things we talk about in our meetings at LEAST once a semester is that using the right word doesmatter. Check out this great (short) video that emphasizes some of the things we share with our students: MUST SEE VIDEO
Two words I habitually say are “CRAZY” and “INSANE”. Truthfully, I had achieved a point where most of my verbal language (well… and SIGN for that matter) had eliminated these two words. I don’t know if it was the break between semesters or what – as I’m certainly not making excuses. To my dismay (with a little bit of HORROR thrown in) I discovered that these words were back — being used again as a common descriptor in my everyday language.
As a matter of fact when my epiphany occurred, I was actually having a Zoom meeting with the co-advisor of our much loved club, Active Minds. At least twice I said something about how “CrAzY” something was in regards to the total and normal OVERWHELM that accompanies this ongoing pandemic. My friend and colleague (to her credit) didn’t call me on it (though I wouldn’t have minded if she had), but y’all? American Sign Language is my second language! Therefore, facial expression, body language, posture, etc. are something I just pick up on as a normal part of any kind of communication, including verbal. So she tensed and her eyes popped wide; she calmly agreed with what I was saying but used better words like “disappointing”, “frustrating” and so on. I left that meeting determined to get back on track with using better words. Words that do not have negative connotations and stigma attached to them. It’s a “speech rule” that is important to me, so renewing this pledge to do better was also important to me.
Other Kinds of Poor Choice Phrases
This past week I was painfully reminded of other types of habitual words and phrases that are shockingly an eye-opener to the receiver. These are the kinds of phrases that make me WINCE – and I’m not always good at hiding that wince. I have a student in one of my face-to-face classes that says “what do you care, right?” and sometimes “what do I care, right?” It is very obviously a verbal habit because it rolls off the tongue almost like it is “filler”. For this student, I can only guess that it was habit, but self-fulfilling prophecy,Pygmalion effect, and abuse are likely culprits of using a phrase so frequently and out of context.
To explain how tragic this repeated verbal phrase is, we’ve only had two classes so far this semester and yet I know for a fact that I and others have noticed. Sure, the phrase was verbalized along with an eye roll, a self-deprecating chuckle, and failure to make eye-contact. It was not difficult to register the
in this oft-uttered phrase during our 10 minute after class “chat. Trust me. I’m no conversation guru nor interpreter police. However, I do pick up things like this because I *do* pay attention to facial expression, body language, posture, hand shapes (tense fists) and more when I communicate because I hear with bionics. I need those other cues for total understanding and clarity.
PERSONAL GOAL: Somehow, some way, let this student know during our semester together that I do. I do care. I care a great deal.
I would like to put out a challenge to every person reading this post who also lives with visible or invisible conditions or disability.
DO YOU FREQUENTLY AND HABITUALLY USE ANY LANGUAGE THAT UNDERMINES WHO YOU ARE?
It may not be words or phrases you even say out loud. Perhaps you only THINK these words that are ultimately harmful to who you are. You may need some help with this challenge. Ask someone else if you ever habitually utter negative words or phrases. Maybe even ask them to get back to you on it so that they can think about it. (BONUS: Perhaps they will also discover that they do this as well!)
If you are like me, we have been saying these things (or thinking them) so long that they are firmly entrenched in the way we respond and communicate with others. One of my siblings constantly smacks their head and says, “stupid, Stupid, STUPID” to themselves. Yup. That one is obvious.
Maybe (like me) self-deprecating humor is a way you cope or “deal” with your disability. Heck, many diversity champions and comedians use this means to educate and advocate. But y’all? You and I know when we are in advocate mode or bad-habit negative talk. Having a balance disorder, I am a klutz. I am constantly tripping, stumbling, and weaving my way around campus. For a very long time I would laughingly tell a concerned member of my “village” that “GRACE is not my middle name“. That is mild negative response really. However for ME, it started to fester a little. Every time I said this after an awkward stumble, I felt…
Now when I “skid around a corner and clutch at Finn’s vest while correcting my sliding right foot and over-compensating for a bounce of my shoulder off the nearest doorframe” (I kid you NOT), I simply say, “Whoa. That was a close call”. That’s enough for me now. I don’t feel less when I say it. Saying NOTHING does not work because I will be bombarded by well-meaning people in my “village” who ask if I am OK. Acknowledging my “close call” for some reason reassures everyone that I really am OK. “I’ve got this”. Recognizing negative language and learning to use BETTER words really does make a difference. It impacts self-esteem. Choosing BETTER words strengthens diversity advocacy and pride.
You are an inspiration. I love every blog you write. This one is amazing.