June 2013 – Hearing Elmo

I’m NOT Always Upbeat. Sometimes I’m just “BEAT”

Published on June 20, 2013 by hearingelmo7 Comments

I received an email this week from one of Hearing Elmo’s readers. With her permission, I wanted to use one of the questions she asked for this post.

“Love your blog, but sometimes it makes me depressed. You are always so upbeat, and it seems as if you have it all together. Don’t you ever have a bad day?”

I had to smile when I received this email, and I’ve had this question before in various venues. I have actually shared “the good, the BAD and the UGLY” before on Hearing Elmo, but I do try to keep it positive. In doing so, I also strive to keep it REAL.

Having said that, I have bad days. Believe me! As a matter of fact the summer months are often my worst. I don’t work as much – or like this summer, not at all. Too much time on my hands is not a good thing. I try to stay busy and I made sure I signed up for some classes. I’m busy applying to grad schools (again). I’m cleaning more (grin), and have some extra time for Fidos For Freedom, Inc. However, I get depressed. I have days I just feel BEAT.

Did you know that it is perfectly normal for people with chronic illness or invisible (or visible) disability to get depressed? Everyone struggles with periods of depression. Life is hard. I use to wonder if people with physical challenges had a higher probability to be depressed compared to the population without those challenges. In my interactions with various populations, I couldn’t help but wonder if we are more prone to depression? Then I developed a passion for psychology, so I thought one day, “What do the experts say?”

After writing a number of papers on the topic and being forced to look up scholarly, peer-reviewed research, I found that people with disabilities CAN be more prone to depression. So if you have days you just want to surrender? Give up? Wave that white flag? You are NOT alone.

Bryan Kemp (2005) said, “Depression is one of the most common, if not the most common, secondary conditions associated with disability. When it is left untreated, depression can cause inordinate personal suffering, increased disability, additional health problems, and stress in others” (p. 234). I thought it was very interesting that although depression is not an uncommon diagnosis, in folks with disability it can actual make your disability WORSE. I have friends and fellow-bloggers whose disability actually IS depression. We cannot continue to pretend that a diagnosis of mental illness is not debilitating. It is a SERIOUS illness. However, depression can be and is often a comorbid diagnosis to people who live with chronic illness or invisible disabilities.

In one study, 71% of people with Meniere’s disease were also depressed (Coker, Coker, Jenkins, and Vincent (1989). For people who have hearing loss, “Several studies have shown that uncorrected hearing loss gives rise to poorer quality of life, related to isolation, reduced social activity, and a feeling of being excluded, leading to an increased prevalence of symptoms of depression” (Arlinger, 2003, p. 17). These stats are only for the two “major players” in my own life. People with Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, Multiple Sclerosis, Parkinson’s, Diabetes, vision loss, anxiety, and many OTHER conditions are often struggling with comorbid depression.

So are you having a tough time coping with your own physical or emotional challenges? Do you struggle with symptoms of depression in addition to your day-to-day challenges? You are not alone.

So please know that although I don’t often write about feeling depressed or anxious, although I do not post about what a “terrible, horrible, no good, very bad day” I am having, I do indeed have these kinds of days! I’ve struggled to get out of bed (despite my red-headed, well-trained alarm clock). I’ve cried myself to sleep. I have pushed people away in anger – embracing self-imposed isolation. I’ve yelled at God at how unfair it is. But in the end, I do strive to be upbeat. It isn’t always easy. There are times I feel like a big, Fat, LIAR. Yet, I work hard at having a positive attitude. I’ve learned that if I change the direction of my “thinker”, I will change the attitude of my “feeler”. It is really cognitive behavioral therapy in a nutshell! Laura King (2011) said, “… the emphasis is on reducing self-defeating thoughts, with its emphasis on changing behavior. An important aspect of cognitive-behavior therapy is self-efficacy” (p. 538).

Something that really helps me is working hard to reach out to others. I have a number of support groups that I meet with in person, others through venues like FaceBook, and still others in online forums. Knowing I’m not alone is very important to me. Being able to commiserate with others who truly understand is of great value. I encourage you to reach out to others. Even if you are unable to locate “in person” support groups, there are a number of ways to find this support online. We need each other.

Denise Portis

Arlinger, S. (2003). Negative consequences of uncorrected hearing loss: A review. International Journal of Audiology 42(2), 17

Coker, N., Coker, R., Jenkins, H., Vicnent, K. (1989). Psychological profile of patients with Meniere’s disease. Archives Otolaryngoloy Head and Neck Surgery 115(11), 1355-1357. doi:10.1001/archotol.1989.01860350089021.

Kemp, B. (2005). Workshop on disability in America: A new look. Washington D.C.: The National Academies Press.

King, L. (2011). The Science of Psychology. (2nd ed). New York: McGraw-Hill Publishing.

There’s a Goldfish in Mine!

Published on June 12, 2013 by hearingelmo5 Comments

Half empty, or half full? Well MINE has a goldfish in it.

I was in line at my local grocery store recently and overheard two women talking behind me. They were there to purchase their lunch evidently as they had salads and drinks only. Normally, I let people with just a few items go in front of me. For once, however, I was actually only there to pick up a couple of things I had forgotten in a previous trip. Besides… I was having too much fun eavesdropping.

Evidently one of the women had recently been dumped. Her friend and co-worker was trying to give her a pep talk using the old analogy of a “glass half full or glass half empty”. I continued to listen in, partly because I was thrilled I could do so <BIG GRIN> but also because I was really fascinated by the arguments she put forth about an issue that to her, was black and white. It was either a great thing you got dumped, or a really awful thing.

Lines were moving pretty quickly, so before I knew it I was headed out the door with my bag and faithful hound dog in heel. I continued to think about the analogy. The original intent was meant to convey, “Are you a pessimist or an optimist?” We all have relatively fixed personalities, but they can be adjusted. Cognitive behavioral psychology capitalizes on that truth to help people change negative thoughts and behaviors.

I really believe most of us do not respond to everything in a “half full” or “half empty” way, however. The more I thought about my own responses to life as it happens, I realized it certainly isn’t a “half full” or “half empty” option for me at least. My glass has a goldfish in it.

My Goldfish

I think folks who live with disability or chronic illness, cannot react to life in a concrete, optimistic or pessimistic way. For me, hearing again with a cochlear implant and navigating life with a balance disorder means that I react to life in a different way just because those two things are a part of who I am. I don’t just have a glass of water. Mine has a goldfish in it. I’ve learned how to take care of my goldfish. I wouldn’t be who I am without my goldfish.

I have some friends in a Meniere’s disease support group who have said that because their “glass is half full” (or half empty depending on their personality), things normal people deal with are just different for them. If they have a headache, are diagnosed with cancer, or lose someone close to them it is compounded by the fact they also live with an invisible or chronic illness. I get where they are coming from and understand what they are trying to say. They believe that experiencing normal life things (diagnosis, loss, etc) are different for them because they do so from a body that is already dealing with something else.

We all know each other pretty well in this group so when I bring psychology into it, they all roll their eyes at me. I truly believe that living with a chronic illness is all about perspective – but not in a “half full” or “half empty” kind of way. When I mentor someone, I try to help them get to a point of acceptance as soon as possible. Acceptance is not an attitude of “I give up. I’m not fighting anymore”. It is a recognition of the “new you” and learning to understand your new normal. That “normal” may even change if you have an illness that fluctuates or is a degenerative disease. For me, it was important to acknowledge this goldfish. I can’t change it and I don’t get a new glass. This is me… and I have a goldfish.

Just accepting that, has allowed me to be the best ME I can be. Psychologist Jennifer Kunst said, “The good news is that when relative changes can be made in one‘s basic approach to life, it makes a big difference. A modest change in your filter doesn’t change who you are at the fiber of your being. It helps you become a better version of yourself” (Kunst, 2012, para. 4).

For me, the hardest thing wasn’t that goldfish or learning how to take care of it. The tough thing was being around a whole lot of other people with only water in their glass.

“Sure, I’ll meet you up in the classroom, but I’m taking the elevator at the end of the hallway. See you in a few…”

“The dishwasher is running so I need you to come in here if you are going to ask me questions.”

“I hate to interrupt you, but I need to go up these stairs and I have to actually concentrate. Hold that thought…”

Family, friends at church, co-workers, and neighbors, are so accustomed to my goldfish they don’t really even see it anymore sloshing around in my glass. No one knows me better than my husband, Terry, I suppose. Yet, I even have to remind him that although I can talk to him in a restaurant that is almost empty without looking at him, I really need him to put his coffee cup down if the restaurant is full so that I can read his lips. It is my responsibility to feed my goldfish. Not his. I may have explained to him twenty different times that there are atmospheres I will hear “near normal”, and environments in which I’ll need his lips plastered to my forward microphone. However, it is my responsibility to communicate this to him.

We have very narrow staircases at home. On “good” days, I can jog up and down the stairs. Terry isn’t surprised anymore if I ask him to carry the laundry downstairs before he leaves, when I may have been “jogging” earlier. He isn’t shocked if I tell him to “go on up” at the end of the night, knowing I’m going to need to go up on all fours and take the time to do so. He knows I will communicate what I need. This goldfish is mine.

There is a terrific list of “acceptance rules” that the University of Washington put out. You can access it here. Two of my favorite “acceptance of the goldfish” quotes are:

Do not make people feel sorry for you or pity you. Get people to view you as an able person who is capable of anything within your reach if the doors of opportunity are open. (graduate student with a hearing impairment)

We should focus on the ABILITY in disability more than the DIS. If we can do that, then we are more apt to succeed. Also, know your limits. If you don’t know what you can or can’t do, how do you expect other people to know? Plan for success by using more of the cans than the can’ts. (college student with mobility impairments)

(University of Washington, 2013)

Don’t be aggravated about the goldfish. Honestly? Everyone has something in their glass besides water. If we were all just glasses of water, we’d all look alike. We are unique individuals. We all have something else in our glass. My opinion is that we accept that. I’m not this person that has a goldfish temporarily. The goldfish isn’t visiting and it isn’t something I can scoop out. This glass with a goldfish IS me. And I’m OK with that. I love what Karen Hall, Ph.D., said in her article “Radical Acceptance”. She said, “Radical acceptance is about accepting of life on life’s terms and not resisting what you cannot or choose not to change. Radical Acceptance is about saying yes to life, just as it is” (Hall, 2012, para. 1).

Denise Portis

Hall, K. (2012). Radical Acceptance. Psychology Today. Retrieved June 12, 2013, from http://www.psychologytoday.com/blog/headshrinkers-guide-the-galaxy/201203/is-your-glass-half-empty-or-half-full

Kunst, J. (2013). Is your glass half empty, or half full? Psychology Today. Retrieved June 12, 2013, from http://www.psychologytoday.com/blog/pieces-mind/201207/radical-acceptance

University of Washington (2013). Mentor tip: Acceptance of disability. Retrieved on June 12, 2013, from http://www.washington.edu/doit/Mentor/mt_acceptance.html

I Stare at my Phone and LAUGH!

Published on June 1, 2013 by hearingelmo5 Comments

If I'm not married to you or if I didn't birth you... I'm just not going to talk to you on the phone! :-) — If I’m not married to you or if I didn’t birth you… I’m just not going to talk to you on the phone! 🙂

Last week after a meeting with Anne Arundel County Commission on Disabilities, I received a follow-up phone call about changes in a training that I would be participating in for the Public Safety committee. There are five of us on the committee, two of which (including myself) have hearing loss. I never give out my cell phone number, but do have a number that we use as our “home phone” through Google Voice. The reality is that Google Voice isn’t a phone at all. It transcribes messages from a messaging service when people call the number and leave a message. I receive both a written transcription and the taped message.

So I received the message with changes about our training and read/heard at the end: “Call me to let me know you received this”.

I laughed.

Out loud.

Twice.

I don’t use the phone. On rare occasions I will speak to my husband or grown kids on my cell phone. However, I know their voices VERY well. Sometimes I will talk to my mother but only long enough to ask her to switch to FaceTime. (Always helps to see the face to pick up more of the conversation). With all other people, however, I do not use the phone.

It isn’t that I cannot use the phone. It simply isn’t my first choice (or second, or third choice). If I want to talk on the phone I have to stop everything. No multi-tasking such as continuing what I’m doing on my computer, or folding laundry, or working in the kitchen. I have to sit (that’s right… I can’t stand!) switch to t-coil on my cochlear implant and hearing aid, close my eyes (I’m not kidding), and concentrate. How often would YOU be able to talk on the phone if this were the parameters for you to do so? <BIG GRIN>

Email is a Great Choice

Email is a great choice for people with disabilities or chronic illness. In my opinion, it is actually a great choice for everyone. Why?

1. Email gives a written record of exactly what was said.

It doesn’t really matter if the conversation is personal or business. A written record of what was actually said can help us better remember dates, times, and other important information.

2. Email fits into our schedule.

You can check email on many phones now. You can check email on devices such as iPods and iPads, and Kindle Fire. Many types of technology allow you to read and respond to emails no matter where you are.

When we need to respond to emails from our desks, something business related or important, we can do so on OUR schedule. No playing telephone tag. Instead you can read and respond at a time that is convenient.

3. Email can eliminate communication problems.

Have a habit of interrupting someone mid-sentence? Do you have attention-deficit disorder and are easily distracted by what is going on around you? Is the person you need to communicate with hard to talk to – angers easily, defensive, mumbles, etc? Email eliminates those kinds of problems.

4. Email is free.

Most of us have a computer at home now. If you do not, you likely have a way to access email through mobile devices or at least have a library nearby where you can access the Internet. There are numerous free email options. I personally use Google’s gmail for my email account. However, there are numerous free email options discussed at About.com. You can access that HERE.

Email can also be a great choice for people with disabilities or chronic illness. I am late-deafened and hear again with a cochlear implant. For me, email eliminates the pressure to HEAR. When folks get a hold of my cell phone number for some reason and call, I really do stare at my phone and laugh. Email can be read by special programs such as JAWS (a Microsoft computer screen reader) and written with Braille displays for folks with low-vision or people who are blind. Email font can be enlarged to assist those with problems seeing smaller type. Email can be a great communication device (along with various social media) for people who have difficulty expressing themselves and using their voice. Email may be easily accessed with various tools for people who have mobility issues. Email is available when you are ready to read/send communications… something that may be important to people who have Chronic Fatigue Syndrome, Fibromyalgia, Lymes disease, or other disorder where fatigue and pain are a factor. Can you tell I’m a big fan of email?

Some of you are thinking, “But I just want to hear your voice!” I totally understand that. Even as a person with hearing loss, I understand how important inflection, emotion, and accents may be in communication. We do need to be sensitive to the fact that there are a great number of people who do not feel the same way. Just because you like to hear someone’s voice with a phone tucked under your ear, doesn’t mean that others are able to have a hands-free, low-anxiety audible communication with you. Perhaps Skype would be a good choice for you – free to anyone with a computer or modern cell phone. FaceTime is rising in popularity with people who have Apple products. These communication devices allow people to both hear and see when communicating. You can even have conference calling!

I think the only thing I love more than email is texting! Unless, you want to discuss a major problem called autocorrect… but hey! That’s a topic for another post!

Denise Portis