Month: December 2022

When Overcoming Makes You Really Tired

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Photo by Alina Levkovich 

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.

Psychology Today (n.d.). Mindfulness. https://www.psychologytoday.com/us/basics/mindfulness

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.

Are Ya Stressinatin’?

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[Pictured: Author and owner of Hearing Elmo. White, 56-year-old female grinning at the camera for this post. Gray hair, brown eyes with flowered blouse]

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

Barriers to Mental Health Care for People with disABILITY

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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.

With warm regards to all my readers…

L. Denise Portis, Ph.D.

2022 Personal Hearing Loss Journal