A Prisoner of STIGMA

Tonight (4/19/17) is the 2nd annual d.A.M.N. event (disABILITY Memoirs and Notes) at Anne Arundel Community College. I was asked to share my presentation on Hearing Elmo.

PowerPoint: https://app.box.com/s/qkdo19k20djznhlpeezo7js24ik5f0mn

Presentation:

My name is Denise Portis and I teach Psychology courses here at AACC.

 

Thank you for coming to our 2nd annual d.A.M.N. event.

 

Today I want to talk to you about being a prisoner of STIGMA. I have been a disABILITY advocate for 25 years. It was not very difficult for me to reveal hearing loss and Meniere’s disease. However, the disability that had the greatest impact on me was mental illness, and THAT I chose to hide from everyone outside my immediate family.

 

SLIDE 2

 

What is a stigma? A stigma has SHAME attached to it. One source defines it as a mark of disgrace associated with a particular circumstance. If anything is well known for having a stigma associated with it, it is mental illness. I didn’t want my friends to know, my co-workers to know, my parents or siblings to know, or even my children to know until they were much older. I had become a prisoner of the stigma attached to mental illness without ever going to trial. Yet, I was as incarcerated as any person charged and tried.

 

SLIDE 3

 

I have struggled with depression and anxiety most of my adult life. I tried to hide it and even get help for it quietly, being careful not to reveal my diagnosis to anyone but those closest to me. I had heard that publicly owning it would follow me in my medical records. People would think I was unstable, unreliable, and needy. I had heard a number of accusatory and negative comments once I began choosing who I would disclose this to. I’m still surprised I didn’t allow early comments to zip my lips and go back into my jail cell, remaining a prisoner to the stigma. However, I began to experience real freedom in acknowledging what was wrong with me. That acknowledgment changed the wrong to right. For the first time I was able to understand what my diagnosis were. Mental illness is an illness. It isn’t chosen, it can be treated, and a victorious life could be mine, So I began to tell EVERYONE. It became a very real part of how I chose to be an advocate. For me, transparency worked.

 

SLIDE 4

 

And yet, throughout my determination to live free, I saw people who were given a death sentence because of their mental illness. Amy is one of my heroes. If you’ve heard of Project Semicolon, you’ve heard of the movement she began. Amy said about Project Semicolon, “In literature an author uses a semicolon to NOT end a sentence but to continue on. We see it as you are the author and your life is the sentence. You’re choosing to keep going”. Amy took her own life last month.

 

SLIDE 5

 

Luis Montalvan came to speak at AACC in 2015. Many of us in the SODA club even had our picture taken with him. Luis was a national and renowned speaker about PTSD and travelled with his service dog, Tuesday. Luis took his own life in December.

 

These two individuals were very open about their mental health disorders. Being open made a difference. Both actually found doors of opportunity available to them because of their openness. I have to tell you when I first heard about both of their deaths, I cried. I shed tears because I know what it is like to get really tired of facing a new day with mental illness. It is hard. Even though I have chosen to surround myself with people who accept me exactly as I am, even though I am open and honest about my disabilities and refuse to be a prisoner of stigma, I totally GET what it feels like to WANT to give up.

 

Are Amy and Luis cowards? Do I have something they do not? No, and NO. Their lives and their deaths simply act as a reminder to all of us that mental illness is HARD. The way I combat the hopelessness and the aloneness is by being open. I present my story and my choice simply as a way for you to examine if this will work for you. If stigma is crippling you and making you feel like a prisoner, you may want to consider a jailbreak.

 

SLIDE 6

 

Be vocal. Fight in the open. Insist on acceptance and understanding. You may not find it in your current group of friends and family. I’m not telling you that you should walk away from THEM. I am asking you to look for revealers. Look for people who do not shy away from the diagnosis, who have learned not to be ashamed nor captive to their illness. They are out there. They can be found.

 

SLIDE 7

 

At AACC the SODA club makes it easy. The group is committed to being assumption destroyers and helping to erase the stigma associated with all types of disabilities. Those that are visible and easily seen, and those that are invisible and are only known upon “reveal”. We call our group superheroes. Their super powers are different. Each have strengths and each work hard to make a difference in a superhero kind of way. If you are looking for a place to make a difference on campus and within your community, we invite you to be a part of SODA.


L. Denise Portis

© 2017 Personal Hearing Loss Journal

Sometimes It Takes Work to Stay Positive

uphill-battle

When my alarm goes off, Milo (who is laying in a ginormous dog bed on the floor by me) hops up and nudges my face and arms. There are days where my eyes pop open and I lay there for a few minutes giving myself a pep talk. Milo isn’t into pom-pom’s and cheering… he just wants breakfast. This means I can’t lay there contemplating all that is “Denise” very long.

Do you ever have trouble getting out of bed? I’m not talking about because you are sleepy. I do not mean the kind of lazy-bone feeling you have when it is rainy and cold out and you just want to stay cuddled up in the blankets. I’m talking about the weariness that comes from having to psych yourself up

one

more

day.

It can be difficult. Don’t get me wrong. I recognize that I have so much to live for and that I am blessed. PsychCentral recently wrote about what NOT to say to someone with depression. The piece included a great number of platitudes that people say to someone who struggles with depression. Some that I hear a lot are:

  1. There are a lot of people worse off than you.
  2. You have so many things to be thankful for! Why are you depressed?
  3. Happiness is a choice (this one kills me because it is actually the title of one of my favorite books!)

Several years ago I saw a quote on social media that said, “Telling someone they cannot be sad, depressed, or anxious because others have it worse is like saying someone cannot be happy because others have it better.”

Yes. I do know people who are “worse off” than I am. But by what measure?

Like many with chronic illness, or visible/invisible disabilities, I have good days and bad days. I would suspect that most people who talk to me each day in person – at work, class, check out lines, or walking – believe I am a very cheerful person. Fact is? I work at it. It does not come easily to me.

At 50 years old, however, one thing I have learned is how powerful a smile and encouraging word are to others. I try not to think about my limitations. That’s so… limiting! Instead, I work to make a difference each and every day, even if all I have the energy or ability to do is be genuinely friendly and encouraging.

I love Fridays. On February the 17th, I posted this picture and caption on FaceBook:

Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which... was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride. 🐾
Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which… was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride.

What I did NOT post, is that later that day when I arrived home weary but safe from a long week doing what I love, I had a seizure. Right there on my front porch. It lasted all of ten seconds and I knew 20 minutes beforehand it was coming. Milo was safe in the back yard and I a l m o s t made it to the door. (No worries – I know that a frontal head bump, fatigue, and Meniere’s flare are the recipe for a “fall down go boom”. I have regular contact with my doctors and “we’ve got this” – promise!)

When I got home from work today, one week later, I find I am still thinking about that and a little peeved about the permanent issues of having multiple concussions. Each Friday, I feel as if I have pushed a “happy Denise” uphill all week long. It is hard. It isn’t so hard that I cannot do all that I CAN DO. Sure, I may be naive to think that my smile and small acts of kindness make a difference. But I choose to believe. I believe because someone else smiled at me and encouraged me. When they did I had the wherewithal to press on – one more day.

smile-and-encouragement

Denise Portis

©2017 Personal Hearing Loss Journal

 

Half a Stick of Juicy Fruit Gum

juicy-fruit

I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around  8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

  1. I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
  2. I love animals – many times more than people.
  3. I expect justice and fairness.
  4. I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
  5. I can be stubborn.
  6. I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Coming to Terms

Deborah Marcus' blog "Visions of Song"
Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis. 

Winter
Winter

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

Spring
Spring

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Summer
Summer

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections
Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

Visions of Song blog: CLICK HERE

 

You Don’t Just Decide

im-fine

… to not be depressed.

I should have gone into acting. My students and coworkers would be so surprised to learn how tough this past month has been. I have been struggling to write, but honestly? I just cannot. Not yet. (I’m in a bad place, but I will and very soon!) So how blessed and relieved was I to receive permission from a guest writer at Hearing Elmo, to post a narrative she wrote on FaceBook about depression? Ruth Fox has been a friend and fellow “chronic illness warrior” for a good number of years. I have trouble remembering when we first met even and we keep up-to-date on social media. Ruth lives in one of my favorite places… Tennessee. She is a photographer and writer… and a friend who understands invisible illness and disABILITY. 

Before I copy/paste what she has to share, as a reminder: Hearing Elmo is open to any and all who would like to share about this life we live. It can be anonymous, open and transparent, or somewhere in between. 

13012888_10208785574373696_450127612655971788_n

As a survivor of over a decade of profound life threatening depression, my heart goes out to the many people with depression who are struggling through the holiday season.

Depression is a vicious disorder, and not one easily dealt with by the affected individual, their family or friends. Like many chronic disorders, depression can be managed through medication, therapy and healthy mental, social, spiritual, and physical life choices.

Depression continues to be a chronic disorder for me, yet the devastating effects that it’s had on my life are greatly minimized due to my efforts accommodate it, as I have accommodated other physical disabilities.

Depression isn’t the consequence of what happens to us in life. Many of my friends and acquaintances have experienced the worst that life can offer. Yet, though they may be grieving, sad, or very frustrated and alone in their experiences, they don’t struggle with depression. This reinforces the fact that depression is, as scientifically proven, a physical disorder of brain chemistry; not a consequence of life circumstances.

Depression makes all aspects of life more difficult. The jovial atmosphere of holiday celebrations often exacerbates its symptoms. The challenge of coping with depression is similar to dealing with other disabilities; to accommodate it in such a way as to minimize the effect that it has on daily life.

For me, the first step was getting and maintaining medical treatment. Next was determining what life activities reduced my depression symptoms and what ones exacerbated them. Then reorganizing my activities so that they tilted the balance towards helpful activities. This occasionally required abandoning what was considered socially acceptable or traditional, which was very difficult to do at first.

Positive self-talk is an exercise I learned to use regularly, because one difficult depression symptom is the emotional twisting of reality. When depression is out of control, all actions or statements of other people tend to be taken extremely personally. If these are perceived as negative the result can be irrational tears, obsession over disappointments, and self-pity. The effect can be so strong that it paralyzes functionality. One’s sense of confidence and self-worth is often mistakenly placed into the hands of others.

Positive people, who accept the right of other people to do what works for them, even if it was a bit unconventional, are the kind of people my husband Gary and I want to be, and we try to surround ourselves with similar people. Depression isn’t fun, any more than all of other the challenges we face, but it doesn’t have to diminish the quality of life.

Ruth Fox


 

By Association…

by association

You’re gonna think this is off topic. Hang with me, I promise this is a “typical Hearing Elmo” post.

I’m turning in my “Christian” card. 

I’ve been so aggravated with “Christians” over the past month, that I decided to shred my “card”. Being a “card carrying Christian” doesn’t mean anything anyway.

It matters how you live and Who you put your faith in… at least that is what I believe. Sometimes I get extremely annoyed on FaceBook. But…

I stay because the disABILITY community is alive and well, thriving and connecting on FaceBook. In the last month, however, I have seen folks post a couple of things in the name of God, that made me shred my card. Carrying a card doesn’t mean squat. I’m going to live what I believe and ignore some folks that choose to make the “real deal” look bad.

1. The suicide/death of Robin Williams

Some things I actually saw posted:

“Shame on Robin Williams for causing such grief and forcing his family to shoulder this for the rest of their lives. No way is he in Heaven”.

“A Christian cannot commit suicide. It keeps them from Heaven. Guess we know where Robin Williams is”

“It’s is so sad he (Robin Williams) didn’t get help for his depression. Had he known God, that would have helped”

“Disgusts me! Suck it up and be a man. Seriously, the coward’s way out”.

All these from folks who regularly post things making it clear their faith-based beliefs. Yet this erases all of that in my opinion. They only show their stupidity (I mean… try doing some real research on what clinical depression is, would ya?) and judgmental attitudes. Yeah. That will win others to Christ.

2. The ALS Ice Bucket Challenge

Some people who have made it clear what “card” they carry when it comes to personal beliefs and faith, reported that they could not accept the challenge because ALS research conducts stem-cell research. It doesn’t seem to matter that stem-cells can be harvested from a number of different procedures – only one that is from embryos. Couples with frozen embryos can:

  • simply discard the embryos
  • can store the embryos indefinitely at their own expense
  • can give the embryos to other infertile couples. (More information about that option is available through the RESOLVE: The National Infertility Association)
  • can donate the embryos to general research or stem cell research (CIRM, 2014).

Stem cells can also come from adults, however, and umbilical cords of newborns. Scientists and researchers have even learned to induce pluripotent stem cells – alter adult stem cells to have the properties of embryonic stem cells (Mayo, 2014). But wait, let me guess. You have issues with genetic research, too?

Let’s say stem cell research goes against your personal beliefs and world views. So you do not support infertile couples seeking help in order to conceive? So if stem cell research is done and embryos are used… and a cure or viable treatment is found for diagnosis such as: spinal cord injuries, type 1 diabetes, Parkinson’s disease, Alzheimer’s disease, heart disease, stroke, burns, cancer, osteoarthritis, and ALS (Mayo, 2014), you would not participate in this treatment or cure if diagnosed with one of these, right? Or, if someone you love is diagnosed with one of these debilitating diseases you will let them suffer? Do you know how many relatives I have that would not be alive if not for diabetes/insulin research?

OKAY!

Ok.

ok… I will calm down. After all, you are allowed your opinions and biases. This IS (still) a free country. But I don’t have to buy into that, nor drink your proffered kool-aid. I read some posts about rejecting the ALS Ice Bucket challenge that made me weep.

I mean I cried buckets (though not ice buckets).

Because people who have this disease or love someone who does may have seen your post. And heard your excuses.

Hey. Most of us have limited incomes and must choose what we do with our discretionary monies. There are only a handful of places I give to each year because they are causes and non-profits that I am passionate and convicted about. If you choose not to accept the “challenge” that is your choice. Maybe say, “sorry, I give to other foundations/charities but I salute those of you who are giving to ALS”. Just please don’t make excuses about why you aren’t going to give to the ALS foundation and say it is because of the “card” you carry. Worse… explain that you are going to give your donation directly to a patient with ALS instead of the evil foundation. Because that person wants your money and not a cure.

Who Am I – by Association?

So all of this has made me think. (Can ya tell? LOL) Some of my associations I am very proud of and gain physical, emotional, psychological, and spiritual benefit from participating. Others make me keep my distance though. I may even shred my “card”. It doesn’t change who I am – merely my associations. I am a person of faith, but I want to be transparent, compassionate, and a friend who makes a difference.

What are your associations? (Other than those that are faith-based)

I am associated with groups who have bionic hearing. I have a cochlear implant. Sometimes we disagree on “best company” or hearing health strategies, but we don’t judge or behave holier-than-thou. We agree to disagree when needed.

I am associated with groups with vestibular disorders. There are SO MANY different specific diagnosis that are vestibular disorders. Meniere’s disease is a fickle pickle. Few have exactly the same symptoms and triggers, and what program works for one may not do anything for another. However, we work hard to accept that “whatever works” for each sufferer.

I am associated with groups who advocate for the rights of those with service animals. Fidos For Freedom, Inc., radically changed the course of my life. I don’t agree with all training practices and at times am rubbed wrong by certain personalities. However, I proudly wear the mantle of service dog “mom”.

Yet at some point in my life I had to dis-associate with the culturally Deaf. My reasons are a long story, but it is my story and I shoulder the responsibility of that choice.

I chose to dis-associate with my undergrad alumni. Again a long story, but one I stand by.

I chose to dis-associate with people who don’t like Greek yogurt. They can’t be trusted.

These are my choices, and YES. I “get” that you have the choice to “dis” Robin Williams, individuals who took their own life, and depressed people who have lost hope. I respect your choice. Doesn’t mean I can and will choose to associate with you. I understand that your conscious will not let you give (one time or regularly) or support (by posting a video and challenging others) the ALS Foundation. But if you choose to voice that opinion and choice in such a way that it harms others, I don’t have to associate with you.

There are numerous organizations in our great country that I do NOT support because of ethical concerns and personal choice. But you will never see me posting things in a public venue something that may cause harm to someone else – even peripherally. I have the freedom to express my opinion one-on-one to close friends and my husband. Believe me… I do this regularly when my ability to cope with those who hate Greek yogurt overwhelms me.

Y’all? Go be nice to others. 🙂

Denise Portis

© 2014 Personal Hearing Loss Journal

CIRM. (2014). Myths and misconceptions about stem cell research. Retrieved September 2, 2014, from http://www.cirm.ca.gov/our-progress/myths-and-misconceptions-about-stem-cell-research

Mayo Clinic. (2014). Stem cells: What they are and what they do. Retrieved September 2, 2014, from http://www.mayoclinic.org/tests-procedures/stem-cell-transplant/in-depth/stem-cells/art-20048117

 

 

False Coping Skills and Elephants

IMG_1238
Hound dog knows when I’m “finished”

Ever wake up just feeling completely whipped?

I feel like I’ve developed GREAT coping skills. After all, you either learn to cope or you’re “done”. So the options are pretty clear cut IMHO. Two coping skills I learned early on in adjusting to my “new normal” as a person who is “differently abled”, include:

1. Start each day new. Yesterday is gone. Tomorrow will come without my worrying about it now. Handle today and today only.

2. Stay busy. Staying busy helps to keep your mind off your troubles and focus on the here and now. It can be busy-ness towards important things, or even the mundane.

The second one I use a great deal, but I’ll be honest. It isn’t exactly a HEALTHY coping mechanism. I don’t do well with a lot of down time. A perfect day for me is getting up (safely – believe me, it can be hard when you have a balance disorder and go VERTICAL for the first time that day), taking my dog for a walk while planning my day, re-enter the house in high gear without stopping until bedtime.

Yeah. Not always healthy. The problem with staying BUSY in order to cope is that it is a false kind of coping. This type of coping skill isn’t actually a coping skill at all. It is called avoidance. And friends? I do this really well. Some of you do too. (You know who you are…)

Staying Busy to Avoid

Do you “do busy” really well? It may be time to stop to discover WHY you stay so busy. Do you strive to remain busy to avoid unpleasant thoughts, actions, environments, even people? Don’t confuse healthy boundaries with avoidance. One is – well… HEALTHY. The other? Not so much. As a matter of fact, avoidance can lead to a number of physical and emotional problems. Psychologists have recognized avoidance for what it is for decades now. Yes, in the right context it can be healthy. But it is easy to AVOID to the point of harm. Spira, Zvolensky, Eifer, and Feldner (2004) explain that being busy to avoid our problems is actually a predictor of panic disorders. You see? The problem with staying busy to avoid something is that eventually you really will run out of things to do. Worse? Your body physically screams, “ENOUGH ALREADY!” and shuts down.

I am finishing up the last of numerous classes in my doctoral work and have already begun the very long process of dissertation study. This work keeps me really busy and it is work I actually enjoy because psychology is what I “do”. I work part-time as an adjunct professor and this helps to keep me busy. I love my work, love my students, and love to teach. The problem with working as part-time faculty at a community college is that it is impossible to predict how many courses you will be teaching semester to semester. For example, I taught the first summer school section, but not the second. I used the extra time in the beginning to catch up on some of my own school work and to do some “Spring cleaning” that had been long delayed… seeing as how it is SUMMER. These past few days though I’ve found I have had some down time. *grimace*

Forced Mindfulness

When I am forced to the point of literally running out of things to do… even for just a day or so, I find it debilitating.

Scan 3

Whoosh.

(Hear that? That was the air being sucked out of my lungs when the elephant in the room finally sat. On. My. Chest.)

I don’t do “mindfulness” well. I’m learning though.

Brown and Ryan (2003) explain mindfulness as being AWARE and ATTENTIVE. Let me explain on a more personal level and maybe you can “see” yourself somewhere in this:

Avoidance:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time.

I work at a job I love and navigate life safely with a service dogMost of the time.

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I have taken control of chronic depression and don’t let it control me. Most of the time.

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

Truthfulness:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time. 

Some days having a CI and Meniere’s disease sucks. I don’t hear perfectly. I feel left out. I’m tired of falling. I’m tired of running into things. I hate long-sleeves and high collars since they only hide bruises. I’m tired of adjusting. I’m going to cry. I’m going to scream. I may swear. 

I work at a job I love and navigate life safely with a service dog. Most of the time.

I love my job but it is really hard when the hallways are crowded. It can be overwhelming to have to rush from one side of campus to another. Crap. It’s raining? Really? *waves white flag*

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

Sometimes I want to change my “… I’m fine, how are you?” to “I’m having a sucky day. And frankly? I don’t care how you are doing if you want to know the truth!!!!”. I’m going to have to ask for help. After all, Chloe cannot 1) retrieve a bag of dropped potatoes in the grocery store, 2) pick up that tiny paperclip without risk of swallowing it, 3) get the umbrella I dropped in a puddle without getting really muddy, 4) tell me EVERYTHING WILL BE OK.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I can lay in bed and worry. 

I have taken control of chronic depression and don’t let it control me. Most of the time.

It’s hard when I have to “own” the knowledge that I will always “deal” with depression. 

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

uh-huh. Ri -i -i -i -i -i…ght.

So yeah, sometimes I’m forced to pay attention and be aware. How is that helpful? Well, for starters attentive awareness facilitates choices of behaviors that are consistent with my needs, values, and interests (Brown & Ryan, 2003). It is healthy to really navigate personal feelings, thoughts, and even pain. David Cain wrote about mindfulness in a way that really “stuck” with me. It changed the way I view “forced attentive awareness”. Check out this great article, “How to Make Mindfulness a Habit With Only a Tiny Commitment“.

For me, mindfulness means being truthful with ME. I am learning to be mindful even when I am super busy. I do this because there will be days I am NOT busy and I want mindfulness to be an invited friend instead of unexpected guest. As a person of faith, it is also super helpful to be frank with God. In doing so, I am actually able to recognize false coping skills that in the long run are not healthy for me.

I’ve heard some folks say, “Oh golly. I can’t go there and allow myself to FEEL. You don’t know what I’ve been through“.

No. No I don’t. But I do know that pretending those feelings don’t exist do not change the fact that the elephant is THERE. At some point in time it’s gonna sit. On your chest. You won’t be able to breathe.

Be Mindful of Your Pachyderm

It is healthy to habitually and mindfully pay attention and be aware of what and who you really are. What are your struggles and successes? Where have you been, where are you now, and where are you going? Who is helping you get there?

What is really hard for you? What have you learned to do well? What do you need to change?

WHO ARE YOU? 

Don’t pretend that being mindful is the same thing as having your mind full. The latter is just another form of busy-ness on the cognitive level. Be attentive. Be aware. Do this with enough frequency that you can be mindful each and every day – for even just a few moments. I make it a priority to be mindful for a longer period of time – like a whole DAY, at least once a year.

But the elephant “sat” without invitation for me this past week. It took me by surprise. That is going to happen. However, if you’ve practiced mindfulness, you are going to discover…

YOU CAN BENCH PRESS AN ELEPHANT.

Denise Portis

© 2014 Personal Hearing Loss Journal

Brown, K., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological well-being. Journal Of Personality And Social Psychology84(4), 822-848. doi:10.1037/0022-3514.84.4.822

Cain, D. (2013). How to make mindfulness a habit with only a tiny commitment. Rapitude.com. Retrieved July 20, 2014, from http://www.raptitude.com/2010/03/how-to-make-mindfulness-a-habit-with-only-a-tiny-commitment/

Spira, A. P., Zvolensky, M. J., Eifert, G. H., & Feldner, M. T. (2004). Avoidance-oriented coping as a predictor of panic-related distress. Journal of Anxiety Disorders, 18(3), 309-323. dii: 10.1016/S0887-6185(02)00249-9

♫♪ Gloom, DESPAIR, and Agony on Me… ♫♪

I dunno... maybe it was the hound dog I fell in love with?
I dunno… maybe it was the hound dog I fell in love with?

I have a confession to make. I loved CBS’s “Hee Haw”. Growing up I had three television channels. Thank goodness CBS was one of them. I’d list everything I loved about “Hee Haw”, but frankly I loved EVERYTHING about “Hee Haw”. I’d be listing instead of posting! Some folks hated it – even some of my siblings. But I was a true fan. I loved all things musical, even the “Lawrence Welk Show” and the “Donnie and Marie Osmond Show”. Go figure.

One of the weekly skits was done by a quartet (sometimes trio) of regulars singing “Gloom, Despair” written by Roy Clark and Buck Owens. It is a “right cheerful song” – <BIG GRIN>. Here are the lyrics:

Gloom, despair, and agony on me Deep, dark depression, excessive misery… If it weren’t for bad luck, I’d have no luck at all Gloom, despair, and agony on me…

If you’d like to listen to the lively tune, CLICK HERE.

Now that I’m in my late 40’s and have some “life” tucked under my experience belt, I hum or burst out in song far more “Hee Haw” songs than Lawrence Welk or Donnie and Marie tunes.

If It Weren’t for Bad Luck

Have you ever felt that “if it weren’t for bad luck, I’d have no luck at all”? Have you ever felt as if you were facing “deep, dark depression”? I suppose if I had to pick ONE constant theme in various emails that I receive each week from readers, it would be that people with disabilities, folks living with chronic illness, souls who live with invisible illness… deal with depression. It can be mild forms and only a sporadic nuisance. Maybe it is something you deal with on a daily basis, however, and a more chronic and constant issue for you.

I’m big on citing scholarly research about various topics. However, depression is so closely linked with various disabilities and illnesses, that there are simply to many studies to choose from for this post! I, too, struggle with depression. Gloom, despair, and agony… well OK, maybe not that last one – grin!

Something I’m having to learn to deal with is that I also cannot take many medications available to some who struggle with mild, moderate, or major depression. Dizziness and vertigo are the #1 side effect listed by most – if not all. Having Meniere’s disease can complicate things. You already know I fall a lot. However, I also lose consciousness a great deal from the fact that my head makes contact with something else on the way “down”. Seven mild concussions in five years means that I have to traverse my life carefully and methodically. I have to make decisions to lesson my chances of getting dizzy and falling. What’s a person to do if medications increase your risk of other problems – like falling?

Medications are not the only way to treat depression. As a matter of fact, I believe research shows that best results occur when medications are coupled with cognitive-behavioral therapy. But if taking medications are not an option for you, what can you do? You do all you CAN.

1. Therapy

Talk with someone. If insurance or finances do not make this a great option for you, reach out to folks who may have training in various faith-based arenas like churches or community centers.

Unload on a trusted friend. But do it. Reach out.

2. Self-help books

You can’t go into a bookstore without finding that “self help” books evidently are big sellers. Some of them are actually written by people with real expertise, however. Do some research… find out what is good (not necessarily popular).

3. Join a support group

In a digital age, there are even support groups online. This can be great for people with schedule concerns or privacy issues. There is something pretty special about discussing topics of concern with people who live what you are living. Do you prefer meeting face-to-face? Check out your local library and see what groups might be meeting there. Check with a county commission on disabilities to see if there are area support groups. Consider starting one yourself!

4. Try an “alternative” option

Complimentary and alternative medicines have brought us to a place where meditation, chiropractic medicine, acupuncture, and biofeedback are options for some people. Even herbal remedies for things like mood and depression help some folks. Do your research. Talk to your doctor. There is evidence these avenues have helped people!

Not sure if your feelings of depression are something that actually needs to be addressed? Few problems just go away on their own. When you live with disability or chronic illness, depression can creep into the picture. Psychologists will tell you that it is a co-morbid diagnosis for many who have some OTHER diagnosis. Deal with it. Find something that works for you.

Comments and feedback are welcome! You are not alone.

Denise Portis

© 2013 Personal Hearing Loss Journal