Category: depression

Brain Injury Awareness – A Survivor’s story 50 Years Later

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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.

Happy Brain Injury Awareness Month!

L. Denise Portis, Ph.D.

Happy Trails to You

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Dale Evans and Roy Rogers

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:

  1. Late-deafened (25 years on)
  2. Post Concussive syndrome (TBI as a kiddo and 11 concussions since)
  3. Meniere’s disease
  4. Vestibular disorder
  5. Mental health diagnoses (Panic Disorder and PDD)
  6. 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.

L. Denise Portis, Ph.D.

2

Just Being Totally Honest Here…

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Mom, Diane (my little sister from Texas) and Me 2021 Thanksgiving Day

One thing I’ve often written about here from the viewpoint of someone living with disabilities, is that one of the hardest things to cope with is simply all the “normal” life experiences EVERYONE deals with, but dealing with it with disabilities.

I have a large network of peers who also write and advocate on behalf of the disability community. You would think God in His infinite grace, would allow people already dealing with a lot to be cut some slack with other kinds of challenges. That isn’t how it works though. “My people” often testify and share how hard life has been for them recently. People with disabilities still face the loss of loved ones, sickness (flu and COVID – aargh), break-ups and relationship implosions, job loss, traffic tickets, power outages, and running out of toilet paper! We don’t get a pass on tension headaches, occasional stomach upset, stubbed toes, or WIFI troubles.

Don’t get me wrong! I’m the first to stand on a soapbox and shout to the world how wonderful and worthwhile LIFE is. That doesn’t mean that life isn’t sometimes very hard, and it doesn’t mean that it doesn’t take work. If people with disabilities have one advantage over those who do not live with challenges, perhaps it comes down to these two things:

  1. Experience has us recognizing our limits much quicker and more reliably than those who do not live with disability.

2. We are more likely to ask for help.

Today, my Mom took a fall (or two) just trying to do some normal daily activities. ALS is an unforgiving disease and it is always progressive. Mom has bulbar onset, which means early on it impacted her speech and fine motor skills. It is now impacting mobility as well, however. Hence, the falls today while doing normal everyday activities. My little brother texted while a little freaked out and I calmed him down. Then I proceeded to freak out myself.

Immediately after finding out about Mom’s fall and trying to get a grip on next steps, I went outside to my back porch. We are having very un-December-like weather and the dogs were romping in the yard. The sky was blue and there was a nice breeze. This place is usually like an oasis to me. Instead of enjoying the moment, however, I marched to the edge of the porch, looked up and stuck my finger at the sky while semi-shouting,

“Stop it! Pay attention! My Mom is getting hurt!”

Had a neighbor been watching they may have thought I’d lost my mind. I didn’t care and HE knew Who I was talking too with a little stomp to my foot, with finger pointing somewhere in the direction of where I imagined His face, and shouting about the injustice of it all. God knew I was fussing at Him.

After my little conniption fit and about five minutes of bawling my eyes out, I realized how silly it was to talk to God about what is “fair”. I mean life just IS NOT. We were never promised a life of FAIR experiences.

We are able to learn from experience, and what I have learned is that reaching out for help makes a difference. So I called my little sister in Texas and I texted my Mom’s sweet Monday-Friday caregiver, Sarah. It helped. We have a plan. It gave me a little hope and encouraged me.

My friend, don’t be afraid to rant to God. He can take it and frankly if anyone knows about Their loves ones suffering and things not panning out in a “fair way”, it’s God.

Don’t avoid reaching out for help. The reality is that we are allowing others to be a blessing to US and to help. I tell myself that by not reaching out, I am robbing someone of that opportunity to make a difference in my life that day.

Just being totally honest here, but I yelled at God today. I survived because He gets it. He really does.

L. Denise Portis, Ph.D.

2021 Personal Hearing Loss Journal

It’s the Little Things

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I love everything about my Elmos!

I am currently all caught up on grading and the next due dates are not until midnight. Unbelievably, I have a slower day. Y’all? I hate slower days!

WAYYYYYYY to much time to think. Because I am a bit of a worrier (OKAY! More than a “bit”), if I am not busy, slower days are not good days for me.

*Uses Wyze camera to check on Mom* — What is she doing? Does she look comfortable? Does she look safe? She hasn’t fallen again – good. Does she appear to be resting well?

Right about that time all of my Elmos came crashing down on my back. Elsa (my kitty who acts like a cat – cuz we have one who does NOT act like one), is sitting at the top of the roll top desk staring down at me with her best snooty expression.

Elsa: yeah. SOOOO?

I gave her a good scratch under the chin and assured her she was still my stuck-up little trouble-maker. It took me about 10 minutes to get all the Elmos back in place and I ended up moving some around even.

When I was finished, I realized I was smiling. It’s the little things. Ya know?

L. Denise Portis, Ph.D.

2021 Personal Disability Journal

The Right to Die (Part 2)

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Please review Part 1 as an introduction to this post. Thank you!

This is one of the most difficult posts I have ever written. I wanted to provide some background prior to providing both opinion and scholar resources.

I am an adjunct faculty member in the psychology department of a local community college. I teach 4 classes a semester, am a faculty advisor for 2 student clubs, am active in the Social Justice Collaborative, and provide internal professional development workshops on campus. I currently serve as the chair of our county’s Commission on Disability Issues. One of the student clubs I represent is actually an active chapter of Active Minds, a national organization whose mission is to raise awareness and work towards suicide prevention at a grassroots level by educating college-aged students. I say all of this not to “toot my own horn”, but to make it clear that to me… life is precious. I have worked and continue to work hard to do my part in preventing suicide and helping to erase the stigma associated with mental health illnesses.

Therefore, it may come as a surprise to you that I am also passionate about right to die issues. I have a very focused viewpoint on that, however, and I appreciate your seeing me through to the end of this post. I apologize for the length but I want to give you all the information I have so that you can make an informed decision about your own stance. Rest assured, if you disagree with what is provided here, you may feel free to comment at length in the comment section. I value your input and opinion.

If you follow this blog, you know that I have repeatedly shared how visible and invisible disability and chronic illness go hand-in-hand with mental health diagnoses such as mood disorders (Major Depressive Disorder and Dysthymic Disorder) and anxiety disorders (Generalized Anxiety Disorder, Panic Disorder, OCD, PTSD, etc.). You can view some of these posts at the following links:

Try to See Each Other Out There

We Are Not Given a Good Life or a Bad Life

A Prisoner of Stigma

Sometimes it Takes Work to Stay Positive

If you watched the HBO video link in Part 1 of this series, you know that one of the stories followed the choice to “die by choice but with dignity” of a lady with a lifetime history of mental health illness. As a person who acquired disabilities later in life, I have been open and honest about my own struggles with panic attacks and depression. There were times in my life where suicidal ideation was an everyday challenge. I have been on medications for nearly a decade and have seen a counselor on and off most of my adult life. It is not my belief that people with mental health diagnosis be allowed to die by choice. With a “whole person” treatment plan to address hopelessness and depression, an individual may  recover from mental health illness, or at least manage the symptoms to provide a happy and successful life. Perhaps they aren’t “cured” but their Dx can be managed . I am not in favor of providing end-of-life measures to these individuals.

I am so glad someone was there for me to dissuade me from a poor choice at a low point in my life. Life is precious to me. My life is precious to me, because I recognize the unique opportunity I have as a psychologist and person with disability, to help others discover their own value. Suicide prevention and erasing the stigma associated with mental health illness are important issues to me. It is the beat of my heart.

Having said all of that, because of my work in the disability community I have discovered a subset of this population that deals with a different set of challenges. These are people who live with chronic and debilitating pain, with no cure and no medication that completely alleviates their suffering.

When I get a headache, I take a pain reliever and my PAIN IS RELIEVED.

My mom had hip replacement surgery in August and December of 2019. The worse pain she experienced was treated with prescription opioids and later ibuprofen and HER PAIN WAS RELIEVED.

My 3rd service dog was neutered this week. He was given a post-surgery pain reliever and it appears HIS PAIN IS RELIEVED.

My point is that many people deal with chronic pain. Many of those individuals take pain relievers to alleviate or manage their pain. Some take medications that can be addictive and must weigh the variables of potential addiction to remain pain free. Some people resort to a still somewhat controversial choice of medical marijuana (although why anyone would be judgmental of that is beyond me).

Let us think about a subset of chronic pain sufferers. There are people who live with chronic, excruciating pain who have no options for real pain management. These folks have tried it all. Legal and illegal pain management options have been exhausted. Because of the nature of their disease and diagnosis, they still live with terrible and debilitating pain.

There are numerous studies that tell us that these individuals are at high risk for suicide. Some studies suggest that in the U.S., 1 out of every 10 successful suicides are an individual who lived with chronic pain (Petrosky et al., 2018). It is tough to study suicide in chronic pain sufferers, as they often have comorbid mental health diagnoses as well. (This topic has been covered by Hearing Elmo extensively… see links above). Sometimes the drugs used to treat chronic pain have side effects of depression and mood swings. In a comprehensive study, Racine (2018) found that chronic pain IS a risk factor for suicide; however, although mental health issues can be treated, pain may not be managed well at all.  Sullivan (2019) a researcher in pain management and suicidal ideation, suggests that those with pain not managed by medication, corrective surgery, or holistic therapies also struggle with sleep disturbances as they may find it difficult to relax to the point of being able to sleep. Pain + depression/anxiety + sleep deprivation = a high risk for suicide. Doctors are not only tasked with helping patients discover “what is causing my pain?” but also the request to “please fix my pain” (Sullivan, 2019). What is a doctor and patient to do with the latter cannot be addressed?

This next paragraph or so I may lose you if you haven’t watched HBO’s “Right to Die Debate” episode. Again, I request that you view this video above at the first link. I think very few people argue within the “Right to Die” battlegrounds against those who are living in pain and have a terminal disease. Some of these individual’s stories were highlighted in the video segment. Less understood (and I argue that we are less likely to support someone) is the argument of individuals who are not terminal yet living with chronic pain.

I have heard the arguments of many who continually refer back to the fact that LIFE IS PRECIOUS. Many of us have bounced back from very low points and now enjoy life and participate in our communities. I have no answers for those who ask “how can we support anyone’s efforts to deliberately end life if we view life as valuable?”

I have a friend who is like a sister to me that is currently awaiting SSDI appeal and lives with debilitating pain. I have talked with her when stabbing pain robbed her of the ability to speak or sit up straight. This is only evidence of the acute pain that hits her without warning. She lives with chronic pain always and I only notice because the overall fatigue and helplessness is a constant shadow in her eyes. She has seen numerous specialists.  Not just in her county and state, but seeking help from specialists in renowned hospitals across our country. She has a pain disorder that has been dubbed “The Suicide Disorder” because of the large number of people who have unsuccessfully tried to manage their pain and simply chose an end to a battle they could not win.

Do I value my friends life? Of course I do. Does she value her own life? I have never met anyone who appreciates and values life as much as she does. It is evident in her own struggles and perseverance as well as her art (she is a photographer). She has struggled with the desire to end her pain in a dignified and supported way. She hasn’t stopped fighting. To date, she continues to fight at great sacrifice.

My goal in writing this 2-part series on this heavy issue is simply to motivate you to put yourself in someone else’s shoes. I am not advocating easy access to life-ending means for MOST people. I do believe we are naive to believe that all pain can be managed successfully. I think we are ill-informed if we believe people can live this way long term. I do not pretend to have the answers. What I do know is that we should be discussing these issues and allowing individuals living with chronic pain to facilitate these discussions. Respect them, love them, and honor their choices. Can we value life and do any less?

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

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Petrosky, E., Harpaz, R., Fowler, K.A., Bohm, M., Helmick,C., Keming Yuan, M.S., and Betz, C. J. (2018). Chronic pain among suicide decedents, 2003 to 2014: Findings from the National Violent Death Reporting System. Annals of Internal Medicine. 2018(169) 448-455. doi: 10.7326/M18-0830

Racine, M. (2018). Chronic pain and suicide risk: A comprehensive review. Progress in Neuro-Psychopharmacology and Biological Psychiatry. 87B(20) 269-280.

Sullivan, M. (2019). What do we owe patients with chronic pain? Pain Medicine 20(5) 878-881.

Try To See Each Other Out There

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A new school year is right around the corner. I love teaching psychology courses. I love teaching. I love students. I love Anne Arundel Community College. I have a great number of “loves”, am I right?

The biggest “love” (other than the guy in the picture with me – married 32 years now) is that I am in a place where numerous opportunities await. An over all “motto” on my campus is “Engagement Matters“. I know this sounds like I’m tooting my own horn, but I was doing “engagement matters” before “Engagement Matters”. This isn’t some special talent, skill, nor ego booster. I try to see… really SEE the students in my classes. Why?

I have been invisible in my pain and loneliness before.

Having just one person notice and tell me they cared made all the difference.

It is relatively easy to see people who are versions of “self”. I want to tell you a story that for me, was the catalyst for changing how I see my students. Many of our faculty offices at Anne Arundel Community College are shared. Several years ago, I was in the adjunct faculty office sitting in one of 5 desks. I usually get to know the other Psychology faculty, but this specific office is shared by other departments. To this day, I have no idea who this teacher was. I only know she taught history. A student was meeting with her. The student was sitting in an easily recognizable “defensive” position, just oozing aloofness and apathy about what she was hearing. It seemed she had done poorly on an exam and had met with this professor to see what kinds of extra credit were available. Unfortunately, this teacher was not really seeing her. Perhaps the student felt backed into a corner? Maybe an earlier excuse she had provided (that I had not heard) was shot down. All I know for sure was that she had given up trying to get the professor to cut her a break and instead protected herself with a belligerent, bored, and apathetic attitude. My class start time was approaching so I packed up my stuff and headed outside with Milo (my service dog) to give him one more potty break before class.

When I returned to the building, this student was sitting in an alcove crying her eyes out. I “saw” her, as did Milo-bear. He led me over to where she was sitting and I sat down next to her. Milo put his head on her knees. She looked up in surprise and then continued to “release heart pressure” as she gently stroked Milo’s head. I didn’t say a word. She had seen me in the faculty office. (It’s hard to miss a professor with a service dog). She didn’t say a word.

erm… Milo didn’t say a word (but was “speaking” volumes).

About 15 minutes later, she quietly said “thank you” and gathered her things and left. I grabbed my stuff and headed to the elevator, now fairly late to class.

“Sorry, sorry, SORRY” I chanted as I rushed into class out of breath. “Sorry, I’m late!”

My students looked up and smiled, putting their phones up that they had been using to take advantage of my tardiness. “Drew” (name changed) piped up and said, “Bob Burg, right?“. Another student explained, “Yup. We saw you with that student having a meltdown!”

I stood there a little bewildered trying to catch up with what they were saying. Another student (able to decipher the confused look on my face), added, “Yeah! Remember the meme you shared in class last time?”

In my Psych of Relationships class we had just covered communication and learning to take an interest in others – even total strangers, and WHY we should do so. I had just shared in the last class, a slide with this photo/meme:

I had steered our discussion towards seeing beyond the words. Seeing someone who is hurting can quite literally mean the difference between life and death. We discussed different opportunities we have had. Opportunities to take a few minutes to make a difference and to CARE. Sometimes a topic just “takes off” in class and numerous students shared how it felt for someone to take an authentic interest in them and to really SEE them.  Through a “Poll Everywhere” activity, we took a quick class vote of who was currently going through something difficult and felt invisible and alone in their pain. Nearly 87% of the class signed in to say “this is me“.

The class looked around in astonishment. One student said, “Everyone in here looks happy!”

BINGO

We have to look beyond a quick glance. Really SEE the whole person.

This time of year reminds me to make it my heart’s prayer and my default response to be the kind of person who really SEES other people. It only takes a few minutes to show someone you see them. By…

… giving a gentle hug

… asking if they are OK

… just being with them for a few moments

… simply saying, “I care”.

Try to see each other out there.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

Chronic Pain – Part ONE

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Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar with these questions.

I have lived with disability for much of my life. Hard of hearing from a relatively young age, severely so through my 20s and 30s until I began to hear again at age 42 with cochlear implants, I am no stranger to the need to make adjustments. I have lived with other disabling conditions, too, which unlike hearing loss and deafness are largely a product of the external forces of trauma and abuse. At 54, I have lost count of the moments when I’ve told myself “keep on, keep on”. As a result of physical abuse which once took the form of being sent down a long flight of stairs, backwards and head first, I have experienced increasing challenges with my vestibular (balance) system. Once a series of intermittent episodes of vertigo, my imbalance is now chronic. For over two years now, I have not had a minute where my equilibrium is not in a struggle with the space around me. Along with this is a condition that I have managed to cope with for 38 years, for which I had no name until recently. Three years ago I wrote a short piece describing life with trigeminal neuralgia. Things have changed regarding my TN status since then, but it’s instructive to see where I was at that time: https://visionsofsong.com/2015/07/10/into-the-sunshine-living-with-trigeminal-neuralgia/

It is not the only pain condition I live with, but it is the most distinctly life-altering. About six months ago, I realized that the medication treatment that was giving some relief wasn’t doing much anymore. Trying different medications and doses brought no help. I spoke with my doctor, who referred me to a hospital that does high volume work in the areas of gamma knife radiosurgery and microvascular decompression, the only two procedures currently advised for my condition.Both procedures have a relatively high success rate for trigeminal neuralgia, 70 to 80 percent depending on various factors. After consultation, in early March of this year I underwent the gamma knife procedure. After a week’s time, I felt some improvement, which was incredibly uplifting for my mood, which had reached new lows. Knowing that it can take a couple of months to see the full effect, I hung in on the bad days, rejoicing in the better days in between, and anticipating further improvements. In the past couple of weeks, I have not been doing well. This past week has been terrible, and I have found myself bursting into tears as much due to despair as to the pain levels. My world, which was shrinking due to severe, chronic facial pain, was beginning to open up a bit, only to feel shrunken once again. I can’t decide which is worse, not thinking there would be anything that could really help bring my pain levels to manageable levels, or trying something that may in the end prove to be a failure for me.

The depression I have been managing somewhat successfully stepped to the front of the line. I became obsessed with the idea of planning my death. Not yet planning my death, but finding the idea of planning it out, by suicide, an intriguing possibility. Why? Why now, when I’ve lived with physical and psychic pain for so long, does it seem like now might be a good time to end my life? What makes one moment better than another, or none of them the right time? As much as I have dealt with depression to varying degrees throughout the years, I don’t recall a moment exactly like the one I had this week, thinking that maybe I’m done, really and truly. I felt that if I expressly stated that to anyone close to me, they would call in the big guys on me, which I do not want. Besides, I’ve been feeling like I’m wearing out the handful of good, caring people in my life with my challenges. I did not want to burden them with such thoughts. I knew that I could call the National Suicide Prevention Hotline (found here https://suicidepreventionlifeline.org/) and opted to use the chat box to communicate rather than the phone. It took a little while to get to the front of the line, but I wanted to see what would happen. As a Mental Health First Aid instructor, I know what it’s for and recommend it often. I wasn’t sure if it made sense to call since I wasn’t sitting by the computer with a gun or a bottle of pills in my hand. I recognized my need to reach out, and am glad that I called. The person on the line didn’t tell me much I didn’t know, but I could tell they cared that I was struggling, and that meant a lot. At the end of the call, they ask for some feedback. One of the questions has to do with feeling hopeful/hopeless. I was able to say that I felt a little less alone after this brief conversation. It got me thinking about how much, and yet how little I need. I suspect this dichotomy is true for many of us. I can only share from my perspective, and from what I’ve teased from things shared by others over the years.

There has been a fair amount of discussion lately regarding the intersection of childhood trauma and health outcomes. If you would like to look at this in some depth, you may consider starting here, though there are many other resources: https://www.ucsf.edu/news/2016/10/404446/undoing-harm-childhood-trauma-and-adversity

As a survivor of (and sometimes thrive-r in spite of) sexual and physical abuse, having undergone several rounds of therapy to figure out how to cope, I did not immediately make the connection between my physical challenges and what I had experienced while growing up. The mind-body connection was happening in spite of my limited insight. Oh, I understood that my mood could be connected to my experiences, but pain? Not only acute pain, or pain that is persistent due to an event, but pain in parts of the body that were not injured, or if they had been, were still in pain long past when the bodily injury had healed. I have been handed and thrown off a diagnosis of fibromyalgia twice in 12 years. No fibro for me, thank you! It’s that diagnosis they give you when they don’t know what’s wrong, is what I would tell folks. If sounds so…hopeless. I know some who live with this diagnosis, and they find ways to make a good life for themselves. It felt like being saddled with one more thing that I didn’t want to carry.

But trigeminal neuralgia, that’s something they can tie to an event. In some cases it develops post-shingles. In others, trauma can be the culprit, and again, we suspect that is the case for me. I have been more comfortable talking about this severe and persistent pain condition than any of the others, yet there is no denying that all of what I experience is intertwined within me, and so perhaps the only way through all of this is through all of it. Still, I haven’t figured out what to say to myself to want to keep on during the worst moments. I think I put every penny I had on this horse winning the race, with the radiosurgery giving me significant relief for a while. If it doesn’t, I’ll need to see if I can find another message that is meaningful, to keep on, keep on.

I welcome feedback, and aim to follow up with another piece on the topic of chronic pain, disability, and the reconstructing of a meaningful life.

Deborah Marcus

https://visionsofsong.com

 

My Name is Milo and I Was Afraid of Fidgets

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My name is Milo and I’m afraid of Fidgets

I can’t tell you how much fun it is to be on service dog partner #2. Milo (and Chloe), both trained at Fidos For Freedom, Inc. and could not be more different. Milo(bear) is timid by nature. When he is on task, however, he is very focused (and less distracted by wanting to love on EVERYONE like sweet Chloe was). However, his timidity makes introducing new things a bit of a trial.

You may be familiar with a new and popular “thang” called the “Fidget”. They are actually great classroom tools for people with ADHD. I’m all about classroom accessibility, so if things like this can help students concentrate? Well, please come with your Fidget.

Unfortunately it is “new to Milo”. Milo began seeing a lot of Fidgets in the classroom. They spin – and to my knowledge don’t make a noise – but who knows if a dog can hear even this quiet “whirrrrr”? The only problem was that Milo was terrified of them. He’d stop mid-task if he saw a Fidget in use and walk around behind me to peek around my hip.

NOT VERY HELPFUL.

I knew I was going to have to do something to get him use to these spinners. He couldn’t continue hiding under the nearest desk. Since I need him to pick up the items I constantly drop, I needed him to be able to focus in spite of Fidgets around him during class.

Desensitization

After talking to a couple of trainers at Fidos For Freedom, Inc., we decided the way to go was to desensitize Milo to the Fidgets.

… so I bought one.

I opened it up, put the center button between index finger and thumb, and “gave it a whirl” with a flick of my right hand.

Not the WISEST thing to do since Milo(bear) was sitting right next to me. He made a strange sound in the back of his throat and took off. I interpreted it as “Et tu, Brute?” (my Literature teacher-mother would be so proud).

I found Milo in the walk-in closet.

Long story short, I worked with him for 4 days in short intervals of exposure. Here is where he is now…

Hopefully, when classes start on 8/28, Milo(bear) will be completely comfortable with Fidgets. This whole “desensitization” process was good for both of us. My daughter and hubby are expecting my first grand baby in October. Milo has never been around babies. He was raised in Cumberland prison and his puppy raiser before that, nor his one-on-one trainer after… had babies around. I suspect he will have to learn to become accustomed to more things very soon. ‘Cept I won’t be spinning the baby girl around and chasing Milo(bear) to expose him. <AHEM>

Facing Our Fears – and Perhaps Desensitizing Ourselves to Them

One of the biggest pluses of having a service dog partner is the courage the partnership provides. Learning to cue off things Milo(bear) hears, that I don’t, is great! I feel safer. I can count on him to hear things before I do. I can look in the direction the “sound maker” is coming from so that I can stay safely out of the way (cars, large groups of students, shopping carts with rowdy kiddos, etc).

Because of peripheral neuropathy, I drop things all day. I’m not talkin’ about that I drop 2 or 3 things a day. I drop 2 or 3 DOZEN things a day. In the past, I would have to ask for assistance to reach it and/or pick it up. Otherwise I would risk falling because of vestibular issues. This meant I often didn’t go out and do things on my own because it was too hard to ask people for help. Milo(bear) has helped me face some of those fears because he is there to help me. His favorite task is “fetch-hold-give”. In my thinking, this isn’t true desensitization though. Milo(bear) has become an assistive tool to mitigate those challenges. It’s a way around them instead of “through” them.

As I sat and pondered whether or not I have ever truly desensitized myself to something, I realized that most learning through desensitization has come from how I chose to respond to comments, people, or situations.

At the age of 51, I have now lived more of life as a differently-abled person than as an able-bodied one. I can tell you that how I respond to challenges, hurtful comments, or discrimination is much different than how I responded as a 25-year-old. Some of this improvement evolved from exposure. Other measurable steps of improvement simply came from educating myself and learning all I could about positive advocacy. It’s not that the things people say cannot and DO not still hurt me occasionally. My RESPONSE is what has changed. A 25-year-old Denise would:

  • Cry
  • Isolate myself for days afterwards
  • Embrace depression instead of heading it off with coping techniques
  • Open my mouth and “let it rip”
  • Retaliate
  • Throw a private and public pity party (that no one ever RSVP’d to)
  • Plot revenge
  • Determine to HATE that person to the end of my days
  • Google how to put a “hit” out on someone
  • Preach at them and try to make them feel guilty with a long, drawn-out “altar call”
  • … and more equally ineffective responses.

Even through constant exposure, the 51-year-old Denise does NOT always respond in a healthy and proactive way. I still have “knee-jerk” responses occasionally, especially if it takes me by surprise. However, my new response is at the very least, more helpful to both myself and the twit that said something unkind. Now I tend to:

  • Consider the source and determine how best to respond
  • Take some time to determine HOW I want to respond
  • Determine if I SHOULD respond
  • Choose a good time and place to respond
  • Cry if needed…
  • Chant to myself “you can catch more flies with honey than vinegar” (and then ask myself if I even WANT this particular fly…)
  • Occasionally seek advice from a peer support network if it is something “major”
  • Follow through on a course of action and DON’T HOLD A GRUDGE

I have learned to do this through trial and error, but also through desensitizing myself to these situations by simply experiencing them and learning what keeps me sane and healthy in how I respond.

Let’s face it.

If you live with disability or chronic illness, you are going to constantly be faced with people who don’t understand, don’t care, or say/do inappropriate things. The 25-year-old Denise response did not improve my situation, nor did it bring peace (my zen was woefully rattled).

I do not FEAR the things people say to me or the situations I may find myself in as I live life. I know “stuff is gonna happen” and when it does, my response is MORE important than how I feel as a result of the experience.

We cannot control the things people say, nor can we completely keep our life experience with disability, “hassle-free”. I do believe we can learn to live in harmony with all the Fidgets in our lives. Being a positive advocate comes from doing things wrong sometimes and learning from it. It also comes from the discovery of having handled something well, and seeing the positive change and result from our proper response.

Denise Portis

©2017 Personal Hearing Loss Journal

 

 

 

A Prisoner of STIGMA

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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

Published on by hearingelmo4 Comments

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