Darn it, I am STRONG

 

I’m no Super Hero, but I am strong!

You have “stuff”. I have “stuff”. Y’all? We all HAVE “STUFF”.

I am — who I am — because of “my stuff”. Your own “stuff” may not define you but it certainly shaped the person you are. It is a wee bit aggravating, however, when someone says “You are such a Super Hero or an inspiration” because of who I am as a person with disABILITY. It’s not that I don’t want to inspire someone. I hope my adult children and grandchildren think I am worthy of imitation and example. I also want to instill in them (and others) their special value because of who they are all because they are here,

on earth,

within our community,

making a difference where they can.

This Doesn’t Mean…

I am not grateful for all God has allowed in my life to make me the woman I am. I want to encourage. I want to be a good example to others. I want to make a difference. This does indeed mean that I am grateful for my disABILITIES. My hearing loss has taught me about communication and about visual cues about the soul of a person. My balance disorder has taught me to take special care, that every step and turn should not be done impulsively. My cane has taught me to lean on something sturdy to provide a 3-point foundation. My service dog has taught me to pay attention and to have confidence in something with far keener senses than I have. I am grateful for my disABILITIES. Yet, I want to inspire, encourage, and don super hero capes because I am a strong woman.

Your stuff may not be disABILITY. Maybe you are a member of a diversity group and the challenges that has presented has strengthened once weak character muscles. Advocacy and inclusion awareness activities have broadened your scope and influence. You are strong because of it.

Maybe that you are a single parent, a survivor of a serious illness, domestic violence, recovered addict, or live with other invisible or chronic illnesses, have made you the strong person you are.

I’m currently staying with my mother who is recovering from a 2nd hip replacement. A North Carolina sister-friend contacted me and we were to have lunch today to catch up. It’s raining, like… a LOT. This means my balance is wobbly, my tinnitus is roaring, and I’m feeling particularly shaky. My friend texted me early (knowing the state I am likely in right now) and suggested a (quite literal) raincheck for lunch.

Does this mean that I’m weak… today? No. I may have to make smart decisions to keep myself safe and avoid likely falls and concussions, but this does not make me weak. I am still strong. It simply means that today my strength is manifest in my practice of good self-care. I can wobble and be strong by making smart decisions to take care of myself.

Challenges not Limitations

Each of you have something that makes life a challenge. Whether it is something physical, spiritual, emotional, or cognitive, we all have challenges. I don’t like the word “limitations”. I prefer to think I am not limited in any way. Instead, I have challenges that exercise my muscles to make me strong. It might mean different choices. Perhaps it means a “raincheck”. I may have to ask for assistance from my service dog or even a person. I am not limited. I simply have challenges. These challenges make me strong.

This post began with exposing something everyone already knows. We all “have stuff”. Your own “stuff” presents challenges, but those challenges make you strong.

This doesn’t mean that you may occasionally feel overwhelmed. It doesn’t mean that there is anything wrong with the fact that at times, you just want to give up. That’s where the rest of us come into the picture. We need each other. We need to support each other. We need to celebrate with each other. If you haven’t seen the now viral video of Miss Nigeria going bananas with genuine glee at the “win” of her friend Miss Jamaica, you have missed out. You can view it here.

I want to be the kind of support and help to YOU, that I don’t hesitate to respond with questions from people who follow my blog or who know about my work in the disABILITY community. I want to celebrate every win you have. I also want to assist when you do not win, and I want to stand in the gap for you when you simply need someone to care. Blogs, vlogs, online support groups, and social media platforms have become a valued network and access to “Miss Nigerias”.

Hey… I totally get feeling all alone on my own little island, crippled by my MIND about my own disABILITIES. It happens. We buckle, hole up, and lick our wounds. Friend, please don’t stay there. Look for the resources and help easily found in a vast array of fully accessible environments. Indeed, we all have “stuff”. We also need each other.

L. Denise Portis

©2019 Personal Hearing Loss Journal

Use the Freaking Microphone

Gotta say, I’m so grateful for being late-deafened in 2019.

I realize much of the reason I am grateful is that I have access to a great number of “first world technology”. I “hear again” with a cochlear implant. I have apps that caption speakers if they are within 6-10 feet of me. My hearing aid and cochlear implant are bluetooth compatible so (for example) using the GPS in my car, Siri tells me where to go (ahem) in my own head and it doesn’t bother anyone else in the car.

I have super cool devices to clean, dry, and care for all my hearing assistive technology. I have volume controls, fire alarms with strobes, and captioning on my television. I speech read at about 45-47% accuracy (which is actually pretty high but I credit it to teaching others how to do so in workshops, etc.). I can make doctor appointments online, and my home phone (Google voice) sends me an email transcription of every message left. I text like a pro and rarely have to knuckle down and actually phone anyone. My calendar and alerts sinc with my Apple Watch so my whole wrist vibrates when I need a reminder. I can order online, bank online, and renew my service dog’s insurance online. I definitely live in the right day and time, in a first world country, where even “middle class” I enjoy a host of perks that make being late-deafened, not so very bad.

Do you know the #1 pet peeve that happens to be very low tech and low cost, is the fact that no one wants to use a microphone?

I do pretty well in groups of 10-15 or less, sitting around a table so that I can see everyone, and everyone is polite and speaks one at a time. Put me in a room with more people than that, or people sitting in rows and spread out, and I really struggle. I may get 50% of what is said. You might be thinking “what does that mean?”. Please allow me to clue you in.

  1. 50% doesn’t mean in a 40 minute presentation or workshop that I received and understood the first 20 minutes.

This means that I get very little take-away. If I’m hearing 50% of what is being said while it is being presented and spoken, I am actually missing much more than that because of lost comprehension. Think about it this way.

If I read aloud a paragraph to you and dropped 50% of the words randomly, would you understand ANY of the paragraph at all? Even if you are hearing 50% of the words, you’ve lost the context and have very little understanding of what I just read.

2. 50% means my frustration level is high and my fatigue has ruined me for the rest of the day.

If I could burn calories by struggling to hear, comprehend, and communicate effectively, I could eat whatever I want, whenever I want, and never work out for the rest of my life. When you tack on the fact that my primary issue is a balance disorder and not the hearing loss, when the latter contributes to fatigue this increases my chances for wobbles and for falls. I have left meetings where people refuse a microphone and seriously put myself in jeopardy the remainder of the day because my brain became mush.

3. 50% means more work for other people.

I work at a college and am a valued member of the psychology department in spite of my adjunct status. After meetings or workshops where I get my 50%, I have never EVER been turned down by colleagues after requesting a follow-up email with a copy of the PowerPoint they used, a summary of their talk with major points highlighted, and any pertinent questions asked by others (that I didn’t hear at all) and responses given. I work with good people. People who care, who are inclusive, and frankly are all about social justice issues like accessibility.

So… if people were simply using the freaking microphone:

  1. My comprehension goes to 80-90%
  2. I expend the same amount of energy a hearing-abled person expends to attend a meeting or workshop.
  3. No one feels compelled to send me copious notes about what they just covered.
  4. I am included… not just in the meeting, but because I will be hearing questions and responses from the floor. I will feel comfortable speaking myself because I know what is going on in the meeting.
  5. Other people with “normal” hearing, actually hear better. Speakers who use microphones are more likely to face the room/audience, speak more clearly, and not cover their mouth or faces with hands, fliers, etc. (Tidwell, 2004).

Having experienced good hearing/comprehension environments, imagine my frustration when I cannot hear and there is a microphone available that someone refuses to use. I have had workshop speakers decline microphone use, college presidents and vice-presidents, and TFO constituents. I have experienced county executives, politicians, pastors, graduate and residency doctor/teachers refuse to use the microphone. From the perspective of someone with hearing loss, this hurts y’all. It also pisses me off. (Jus’ sayin’)

“My voice carries, so I’m not going to use this” (points to microphone).

“I walk around a lot so I’m not going to use the microphone. I have a loud voice” (Note: most microphones are mobile).

“Can everyone hear me? I have a big voice. I’m not going to use the microphone… because everyone can hear me, right?” (while ignoring my wildly gestured hand-waving negating their statement).

Folks, volume ≠ communicating well. Raising your voice (your volume level) distorts your voice (Ardon, 2019). If you use a microphone and use a normal tone and volume because the microphone is doing the work, your words are understood by more people. The quality of your speech improves when using a microphone. You aren’t having to remind yourself to “speak up” so the people in the back of the room can hear you.

This post isn’t about any frustration about not hearing well when a microphone is NOT present. (Although as I continue positive advocacy, I work to have more and more microphones available in meeting and workshop venues). I simply want to remind folks to use the microphone when it IS THERE and IS AVAILABLE. Not using it tells me that I don’t matter… that anyone with any level of hearing loss doesn’t matter. (NIDCD reports that 15% of all Americans over the age of 18 have hearing loss. That number goes way up if your audience is 40 years old and up) (NIDCD, 2019). Even in small meetings, the number of people who benefit from a microphone in use goes way up. Present are people with hearing loss, auditory processing issues, ADHD, and folks who do not speak English as their first language. Please… use the microphone.

For all of us who want to be included, thank you in advance.

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

Ardon, F. (2019). Your voice carries… use the mic anyway. Neuroamazing. Retrieved

December 15, 2019, from https://neuroamazing.wordpress.com/2019/10/09/your-

voice-carries-use-the-mic-anyway/

National Institute on Deafness and other Communication Disorders (2019). Quick statistics

     about hearing. Retrieved December 15, 2019, from

https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing

Tidwell, R. (2004). The ‘invisible’ faculty member: The university professor with a hearing

disability. Higher Education 47(2) 197-210. doi: 10.1023/B:HIGH.0000016421.25286.e8

“H A L P”

I’ve…
got this…
Halp! HALP Geegay!

Say what?

My granddaughter Samantha Jean just turned two-years-old. Samantha is at the stage where she has opinions and expresses those opinions. These opinions vary from what she wants to wear today, to what she wants to eat, to what she wants to DO, and what she wants you to do. She is just full of opinions. She also is very independent already.

“I do it!” After caring for her a couple of weeks while mama was in the hospital having her baby brother (rather early), this phrase quickly made its way to “Samantha’s Favorite Words” list.

I had to learn to let her do it, even if I wasn’t happy with the results when she was finished. Thankfully, since she is only 2, I was able to distract her to “fix it” or wait until she moved on to another activity and straighten, organize, or re-do the activity to my satisfaction.

(Yeah. I’m a little OCD and a bit of a control freak!)

What I love about Samantha, is that unlike many two-year-olds, if she was NOT able to do something she rarely had a meltdown about it. I was amazed at the first time she asked me for “halp”, and graciously stepped aside to let me do it.

I heard these requests for “halp” for numerous things:

When trying to stick her head through an arm hole instead of the one designated for her – ahem – HEAD,

When trying to get blueberries to stay on her spoon,

When trying to safely navigate the steps on the back porch which were a bit too much for such short legs,

When her train rolled to where she couldn’t reach it underneath the buffet,

When trying to read a book,

When trying to get up on some of the furniture, (see photos)

Sometimes Samantha would ingeniously choose a way to do something differently so that she could stay independent in the activity. For example, if there was something for her nearby she could use as a means of boosting herself up on tall furniture, she might drag that toy or bench close to use it to navigate her destination without “halp”.

She cannot manage “Grandma” yet so she calls me “Geegay”. I figure she will get there so I think the latter is awfully darn CUTE. I loved hearing Samantha say, “HALP, Geegay!” throughout the day. She more often did things without assistance, but never hesitated to ask for help should she:

  1. Figure out she really did need it to accomplish what she wanted to do.
  2. Was too tired to find an accessible means to accomplish it on her own, or the effort wasn’t worth the “gain”.

I had to admit while living with her, I saw the lesson to be learned again and again.

Stubborn People with disABILITY

I realized the other day that I have lived with disABILITY longer than I have lived without. The feeling was strange since I had simply shouldered new challenges and practiced “keep on keepin’ on” while aging. People with disABILITY (congenital or acquired) often find that as they age, accommodations that were once enough to give them access to an activity or opportunity, no longer are enough. Perhaps even accessibility tools, electronics, devices, etc., may have once allowed you to be independent in a task but as you age you find those things are not enough to be completely independent.

My life with a disABILITY started at the age of 6 with a traumatic brain injury, broken bones, and destroyed hearing in the left ear. After a long recovery, I never felt like a person with a disABILITY until about the age of 18 when my hearing loss became bilaterally progressive. I eventually acquired Meniere’s disease (a vestibular disorder) and really began identifying as a person with a disABILITY at the age of 26 or 27.

I have a good friend who describes herself as “bilaterally hearing-impaired”. Because we are both currently training our third service dog and work at the same place, we often train together. One thing I love about hanging out with Jessica is that she always asks if she can do something for me. Whether it is to get the door for me, pick up something I’ve dropped, carry something for me, etc., she always asks first. She doesn’t assume I want her help, she thinks to ask first in the event her assumption I need it is unwanted or not needed.

Sometimes I say, “actually Finn has been working on door buttons, let us see if he will get this door open for us”. Perhaps the item I dropped is something my Golden puppy can safely work on his retrieve and get for me, so I will let her know that Finn and I have “got it handled” and no “halp” is needed. After training together for some time, Jessica once replied to my “no thanks we’ve got this” with a very thoughtful reminder.

“No problem. However, we know each other well enough now that I trust you to let me know when you need help and that you will ask for that help”.

The first time she interjected this reminder, I found myself thinking about it the rest of the day. Can you guess why? It is simple really. People with disABILITY can be pretty stubborn, and never ask for “halp” when they really need it. We can even earn the reputation of being ornery about our refusal; ungracious in both word and attitude.

In my early adult years of learning to live with deafness and balance issues, I adopted a rather unattractive and even dangerous attitude of “I am woman. Hear me roar!” This could be interpreted as, “I don’t need help. Leave me be. I’ve got this. Don’t you dare pity me!”

The only reason I can think of that I acted with such vehement, even arrogant refusal is that I didn’t want people to pity me. I also did not want them to think that I was UNable rather than differently-abled. I think that all changed for me when I realized how it made ME FEEL when I asked to assist someone who needed my “halp” and they refused. After realizing I felt “robbed” and even hurt when denied the opportunity to help someone that I cared about who obviously needed my “halp”, I started re-thinking my own stubborn refusals.

I have lived with the assistance of 3 service dogs now. Even so, there are things my canine partner cannot do for me, or cannot do SAFELY on my behalf. I have learned to ask for “halp”.

I have never, EVER been turned down. Even should I ask the most cantankerous-looking  curmudgeon in the aisle at the grocery store to get the 32-ounce can of turnip greens on the bottom shelf because a) I can’t bend down and get it, and b) the circumference is to large for my Golden’s mouth, I have never been told NO when asking for “halp”. (Hey we love our turnip greens in this house! I lived in the South a loooooong time).

Solutions to World Problems

Surely a solution to the world’s problems is to simply be kind to others. We all know that isn’t going to be the norm, however. Still, individually we can do our part and hope (even pray) for a ripple effect.

In every way that YOU can, make a difference.

If someone needs it, “HALP” them. Do it with a smile and without conditions. Do so easily, readily, and without any need for acknowledgement. Be the kind of person who so naturally sees a need and meets that need that it becomes who you are and not what you do.

But…

It is always good to ask. Never assume that someone who appears to need help, wants your help. Maybe they have some assistive device that will allow them to pick up that item without “halp”. They want to be independent.

BUT…

Don’t be a stubborn jackass. If you need “halp”, ASK. If someone asks if they can “halp” and you simply need a few minutes to do it yourself, explain that graciously. Don’t become haughty and retaliate with angry words and threats about where you are gonna hit them with your cane. Don’t tell them what to do with their request to “halp”. (Ahem)

Necessary Reminder

May I share something with you that you already know?

Even able-bodied people need “halp” sometimes. Whether it is assistance with a task, or a needed hug at a low moment, all of us need each other. The next time you need assistance for “halp”, just ASK already!

Even my two-year-old granddaughter will ask for my help when she knows she needs it. She even does so when she recognizes that she can do the task, but that it will get done quicker and with less effort if she simply asked for HALP.

Pogosyan (2018) provides multiple reasons why we should be willing to help and accept help from others. “Research has found many examples of how doing good, in ways big or small, not only feels good, but also does us good” (para. 2). So in closing, I would like to remind you (and yes myself as well) that disallowing someone to assist actually robs them of the benefit gained from that help.

Pogosyan goes on to explain that, “One reason behind the positive feelings associated with helping others is that being pro-social reinforces our sense of relatedness to others, thus helping us meet our most basic psychological needs” (Pogosyan, 2018, para. 1). In a very powerful way, it supports our need for EACH OTHER.

I’m starting to think this world is just a place for us to learn that we need each other more than we want to admit. – Richelle E. Goodrich
Our greatness has always come from people who expect nothing and take nothing for granted – folks who work hard for what they have, then reach back and help others after them. – Michelle Obama

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

Pogosyan, M. (2018). In helping others, you help yourself. Psychology Today. Retrieved December 7, 2019, from https://www.psychologytoday.com/us/blog/between-cultures/201805/in-helping-others-you-help-yourself

 

 

Your Voice Matters

School has started!

I love teaching at Anne Arundel Community College! As much as I DO love it, I also enjoy investing myself in students by advising two student clubs. You get to know students on another level when you are getting to know them through a club or organization that they are passionate about. One, Active Minds, is not only a student club but also a chapter of the national organization. If any place should support suicide prevention and help to erase the stigma of mental health issues, it should be a college campus.

I know many of Hearing Elmo’s readers do NOT attend college. Yet within the disability community, we still need to remind folks that YOUR VOICE MATTERS.

So many times people with disability or chronic illnesses think they are without purpose or feel they have any real avenue in which they can make a difference. Many with disability have transportation issues and are often locked within boundaries that feel pretty darn oppressive.

This population is actually at greater risk for suicidal ideation (Disabled world, 2017) compared to the US population as a whole.

Quality of life certainly plays a role in the danger of suicide in those living with disability. However, it is more than the symptoms we struggle to manage. Isolation, stigma, finances (e.g. fighting for SSDI), fatigue, hopelessness and co-morbid mental health diagnosis all contribute.

Y’all? I’ve been there. Please… don’t give up. The fight is worth the cost of “keeping on” simply because YOU are worthwhile. You may feel as if you have no voice. You do! The internet has actually made it easier than ever to find and use your voice. Sometimes finding a place to plug in and BE HEARD, makes all the difference. Here are just a few ways:

1. Start an online or face-to-face support group.

See what your county has already available and get involved.

Use one of the numerous website and virtual group options and connect. FaceBook has a user friendly way of starting online groups.

Hang posters, ask your doctor to let other patients know, see your library personnel to find both meeting places and avenues of advertising.

2. Start a blog or vlog.

The disAbility community is alive and well on the Internet. You will be surprised how quickly you will have followers, and it is easy to find other bloggers who share many of your challenges.

3. Create.

Are you an artist? Musician? Writer? Love crafts? Use your talents to spread awareness about living with disability.

4. Volunteer.

You would be surprised how many volunteer opportunities are available where you live. Put Google to work for you, and discover what the options are. Sometimes a reason for living, is simply doing something that makes a difference in others.

As a deaf person, I count myself lucky and blessed to “hear again” with cochlear implant technology. Yet the silence is LOUD, even deafening, when someone makes the choice to stop fighting and checks out.

I get it. This life is hard. However, your voice matters… likely to more people than you think. At the very least it matters to me.

You are not in this alone.

https://suicidepreventionlifeline.org

L. Denise Portis, Ph.D

Journal: <i>Disabled World</i>. Language: English. Author: Thomas C. Weiss. Electronic Publication Date: 2015/06/14. Last Revised Date: 2017/02/13. Reference Title: “<i>People with Disabilities and Suicide Awareness</i>”, Source: <a href=”https://www.disabled-world.com/disability/awareness/suicide.php”>People with Disabilities and Suicide Awareness</a>. Abstract: Disability in relation to suicide is something that is very hard to find statistics on and it is not a new phenomenon. Retrieved 2019-08-27, from https://www.disabled-world.com/disability/awareness/suicide.php – Reference Category Number: DW#118-11443.

Careless Words

As a person with disABILITY, like any within a diversity group, I have experienced harm from words. Before you stop reading and think I’m going to blast the abled population, let me just say that people with disABILITY are often the worst offenders.

If I asked every person in the world to throw up their hand if they have experienced words that have…

hurt them

demoralized them

made them wince (inwardly and outwardly)

caused a “hitch” in your breath because of the unexpectedness

made you cry

made you SWEAR

caused you to “shut down”

forced you into isolation

triggered you to “fight back”

or scarred you for life…

… the sudden uplift of hands worldwide would cause a major shift in wind currents and likely tilt earth off its axis. Seriously. We’ve ALL experienced this.

I use the phrase “experienced words that have…” intentionally. Not all of us HEAR well and many who do hear well don’t listen well. The damage of careless and mean words is not something simply heard or speech read on the lips of fellow human beings. The words are EXPERIENCED. This experience is why damage is done. We take it in. We stew on it. We watch those words ping-pong back and forth in our brains and hearts like a pinball machine, drawing blood and causing wounds from every “hit”. We are scarred.

When my children were younger I would remind them that human beings can FORGIVE but we cannot FORGET. Our words have such power – it’s just freakin’ scary! I am an impulsive speaker. I say things without thinking through and that impulsivity causes regret more times than I can count.

People have told me things before that I needed.

Perhaps I was being a butt-head and careless with my own words. They put me in my place. Maybe it hurt but it was a disciplinary kind of hurt and I walked away wiser and un-scarred. (By the way, all of us have people in our lives whose very positional relationship with us allows them this power).

People have given me true (heartfelt) constructive criticism. This means the intent was clear, precise, and helpful. I am sensitive enough that even this at times can be hurtful, but it doesn’t WOUND.

Those types of experiences can hurt… but they aren’t spirit-murdering (a new word I learned at an Anne Arundel Community College workshop this week). I would like to argue that CARELESS words are never EVER helpful.

The word itself means, “not giving sufficient attention or thought to avoiding harm or errors”. Careless words can be both intentional and direct. They can also be unintentional and “oopsie” moments. Either way they hurt. They wound. They leave scars.

At the end of the semester a handful of students were sticking around to chat after the final. They were lovin’ on Finn, my 3rd service dog in training (SDiT),

… and just “messing around”, hangin’ out, and talking. One of my students muttered something and *I* (emphasis on that I, for I am deaf – grin) heard the collective indrawn breaths. So…

I nosily asked, “what just happened”?

The student said, “Good God, did you hear what I said?“, acting both horrified and astonished.

“Well, no,” I replied, “but I heard y’all’s REACTION”.

Her eyes filled with tears and she admitted, “I said something contradictory and stupid and then said, ‘GAWD that was bipolar of me'” She then slapped her hand over her mouth and looked around at the group with big eyes. The group all immediately patted her back and assured her that “we ALL say stupid things”, and “we knew what you meant”. She vehemently waved all their support aside and said MUCH louder…

“No, NO. You don’t understand! I AM BIPOLAR. I just slammed myself!”

At this point, the floodgates opened and she was sobbing hysterically. It was contagious… of the 8 students standing there, five of them were in tears within minutes!

Do you know they stuck around for another 20 minutes and discussed the power of words and stereotypes? I just stood there in awe watching what I hoped was a little bit of my teaching rubbing off as they expertly dissected and dialogued about intent, carelessness, and harm.

OWN It

You are gonna spew careless words. Whether you speak with your voice or your hands, you are going to speak before thinking. Or… maybe you speak AFTER thinking but you simply don’t care about the damage you are unleashing.

Own it. If you care, if you want to minimize the damage, if you want to do better, if you are the kind of human being that understands the power of words, OWN IT.

Apologize if needed (and mean it)

Make amends

Strive to do better. Vow it!

Practice

Call it (when appropriate) when you see others do it

Follow up and use all five apology languages IN WRITING.

This last one I have learned the power of this conscious decision to OWN it by following up with a note. Whether it is a handwritten note, an email or text, etc., writing down a follow up with a person I threw careless words at is so important.

It becomes this tangible, concrete evidence of my regret and promise to do better. The injured party can re-visit it if they want. It may act as a future means of measurement to them about how far I’ve come in using words as weapons. For me, it acts as a literal pivot point from which I can measure my own growth, my own practice of intentional, encouraging communication.

Next week, I want to discuss how one goes about admitting and voicing that “ouch! that hurt”. If careless words can injure, we are all wounded warriors. What do you do or say if someone hurts you?

Have a great week y’all!

L. Denise Portis, Ph.D.

© 2019 Personal Hearing Loss Journal

 

 

Chronic Pain (Part FIVE) : What Does Giving Up Look Like?

By guest writer, Deborah Marcus.

Part 1     Part 2     Part 3    Part 4

Photography by Deborah Marcus – At Duke Gardens 1/2014

It has been weeks since my last blog post for this series. I wish I had the energy and focus to write about everything I think through! We continue to await word on the first level appeal of the denial of my disability application. I have been incredibly blessed by many with the practical support that is allowing me not to be in a panic over covering my most basic needs and treatment expenses, at least for the next few months. I don’t fully know how to express my appreciation for this, but I hope it is felt by all.

 

I’d like to return to an element that continues to run through this discourse, on living and dying, on choosing to continue to live rather than contemplating and completing suicide. I have written about and spoken aloud the serious consideration of suicide, the culmination of feeling like I’ve been dying for a long while, with acute awareness of this in the past few years of unrelenting facial and head pain. I do not currently have that on the table as an option, and I hope I continue feeling this way, but it does not feel like it would never be an option. I’ve come face to face with some varied and intense reactions and responses to my expressions of thought of suicide. All come from a place of love, but some also come from a place of fear, and this can inadvertently have the effect of making the one discussing the suicidal feelings—in this case, me, but I daresay it applies across the board—feel a deep sense of shame and guilt.

 

Brene Brown has some good talk out there about shame, guilt, and vulnerability. Here is one: https://www.ted.com/talks/brene_brown_listening_to_shame?fbclid=IwAR2YxOI-EYys4X2Pi7Qzi9k65yO79pUEw1-UQpt5KLKdxGL-91Ptje1Czbs#t-942509

Photography by Deborah Marcus – Lenten Rose at NC zoo 2/2014

There was a moment recently that ties directly to this and got me thinking about what we mean when we say that someone is giving up, when they feel can’t go on and begins to actively experience suicidal ideation and perhaps takes those first steps to make a plan to end their life. In continuing to trial different treatments and drugs in an attempt to better manage my facial nerve pain, I’ve recently begun a high dose, long course of Prednisone, along with another drug on board and a third as a potential abortive of one set of symptoms. I’ve been on a moderate dose of Prednisone more days than not for the past 2 years, but this is much higher dosing with a step down plan over 30 days. The 20 mg daily has already had an impact on my body over time, affecting sleep, mood, and weight. There is something of a redistribution of fat or fluids in my face and belly. I don’t look like myself to me, even though my overall weight gain has been about 10 pounds in the past year. So it was with concern about the effects of increased dosing that my therapist commented to me on the challenges of managing appetite on Prednisone. He expressed concern and dislike that I would possibly have to deal with regaining control of my weight, which is already a challenge, once I finish this course of medication.

It’s really something how you can’t know when a moment is going to be so perfect as to open your mind and heart and let some fresh air in.

In the last 2, 3 years I’ve given up on myself in all kinds of ways. As I found myself deeper in depression with the constant, severe pain and vestibular issues and the fear that none of it would ever be alleviated, I also decided that it didn’t matter what I did or didn’t do anymore. If I couldn’t be comforted any other way, I would use the one tool that has seemingly served me throughout my life. Food. I have long been of two minds about what foods I put in my body. On the one hand, I’m this person who likes to eat organic food as much as possible, thinks about the welfare of the animals I eat, contemplates how food choices impact the environment. On the other, I eat Devil Dogs. French fries. Bowls of pasta and butter. OK so pasta isn’t bad for you in moderation, but here I speak of the comfort foods. The ones that don’t require my mouth—and face—to work too hard, that appeal to my taste buds, that fill my belly and calm my heart when I am over the top stressed. You may be thinking: many do that sometimes! Here’s the thing: in the giving up, though I didn’t get the gun, stockpile the pills, or drive to the high bridge to jump, I gave up on me by over and over again making unhealthy and uncaring choices about what I put in my body, with no regard to its impact. I no longer cared. What difference did it make, since I’m not going to be here long anyway if I can’t get a handle on things?

Photography by Deborah Marcus – Uwharries 2/2016

How different is this from the kind of suicidal ideation that gets everyone frightened, that prompts judgment and even anger in those who don’t want their loved ones to kill themselves? To be sure, the more extreme choices have the disadvantage of being quicker to kill. I can probably eat my junk foods en masse on a daily basis for quite some time before it creates the kind of conditions that lead to a downward slide towards extreme poor health and death. I suspect that it’s because of this, we don’t spend enough time talking about the slow, quiet dying when we talk about suicide. I recognized at this medical crossroads that it’s all the same in me. The thoughts of suicide, while I am not actively seeking to kill myself at this time, are still there as long as I care for myself in a manner that says nothing matters anymore. If I am going to work as hard as I have been to try to find solutions, to feel better enough to want to live the next 20, 30 years, wouldn’t it be good to be in the best health possible so I can enjoy those years I’m working so hard to experience? Tell the truth, Deb. There is no point in working this hard if I am not also doing the best I can to love myself. That includes cultivating a renewed mindfulness about how I look after myself. Part of the struggle with mindfulness is that I actively seek distraction from the relentless pain. I’ve practiced mindfulness meditation on and off over the years and I wonder if the reason I kept stopping was not only the psychic discomfort that can come with deep attention, but how it would make me acutely aware of my body, and my body has not felt well for a long time. Who wants to sit with that? Nevertheless, as I come to this fresh perspective, with the stars somehow aligning just perfectly for this moment, I am doing the work. I feel good about taking these steps. They also scare me. I’m doing it anyway.


If you would like to contact Deb personally, please find her on Facebook (Deborah Marcus) or at her website: https://visionsofsong.com

L. Denise Portis, Ph.D.

 

I’m Not Gonna Shelter in Place

I’m not gonna shelter in place. I’m just not. I’m a fighter. I can’t sit idly by and do nothing.

Now… before you FrEaK oUt on me, let me explain.

As I work on a college campus, I’ve taken plenty of workshops about active shooters, sheltering in place, and what to do in an emergency. I have friends who are cops, one in particular the chief of police in a nearby district. He was the first one to converse with me about a new mindset and belief that sheltering in place is not always the best thing to do. Evacuate, fight, run to a safe location as fast as you can AND DON’T KNOCK ANYONE DOWN AS YOU FLEE. It was an interesting concept to me and I got a lot out of the discussion. When active shooters and workplace violence became the “norm” for the United States, initial thoughts were to barricade and shelter in place. Now the experts believe that may not always be the wisest thing to do.

Frankly, I was relieved. One of the hardest things for me to do is sit back and watch and wait and HOPE FOR THE BEST. I’m learning and growing that sometimes I MUST do that, but it was very freeing to come to terms with other options if needed. I’m going to take this out of context a bit for the sake of this 2-part post. I wanted to give you this background though before continuing. I’d hate for you to be reading and thinking, “Um. Denise is off her rocker”.

(would never happen since I can’t rock – the things one gives up when you have a balance disorder *rolls eyes*)

Not Gonna Shelter in Place – When I Could Be Making a Difference Elsewhere

Lost my Dad 9/20/18
Training Service Dog #3, Finn
Retired Service Dog #2, Milo
Love having a grand-daughter

I’ve had the kind of year that I needed and took some “me time”. After finally completing my doctorate, I took some time to re-group. Even then, however, life — like LIFE does so well — continued and I had some great things happen and some not-so-great things happen. I found I had all this extra time and searched for ways to give back. (Temporary switch of gears) — One of the most frustrating things I have to deal with as a differently-abled person is accessibility.

Accessibility is more than having push-button doors, ramps, and handicapped parking. I work at a place (college campus) that is very accessible to me physically – with the exception of push-button doors on bathrooms – and we have a director of Facilities who does a great job of informing students, faculty, and staff about any campus changes that may impact mobility. We have internal professional development courses that work to educate and train other employees about persons with disability in the classroom and workplace. Accessibility also means, however, providing opportunities for people with disabilities to volunteer and work alongside other employees… professional development and opportunities to give back. My campus is outstanding in this type of accessibility.

My church is one of the most accessible buildings I have ever been in to date. Elevators, ramps, push-button doors (even on the bathrooms – grin), a looped auditorium (and if you have a hearing loss, I cannot begin to tell you what a huge deal this is), and numerous handicapped parking spaces are just a few of the ways the building and grounds are fully accessible. I even nominated them for a county recognized award one year, for truly they have gone the extra mile in making the church campus accessible on a physical level. They have always welcomed my service dogs. Chloe, who retired 2014 and passed away 2016, Milo, who retired 2018, and pup-in-training, Finn, have all been welcomed. I attend with them and have been able to use them to assist me in navigating safely with the blessing of those I worship with on Sunday.

I have hesitated to write about this on my blog as I in no way wish to criticize any individual or group, so have decided to go at this as a means to challenge religious and non-profit organizations to welcome and allow people with disabilities to SERVE. For you see? Accessibility is more than a functioning and accessible building. Accessibility is providing opportunities for service. Cuz y’all? We can and do serve. We can and do work. We can and do run for office, volunteer, and folks? We can and DO make a difference. Anyone who thinks or says differently is just wrong. Anyone who doesn’t provide opportunities to allow people with disabilities to serve and make a difference – should. After asking on 3 separate occasions for opportunities to teach at my church, I decided to move in a different direction and found a great place to serve. My challenge to places of worship (with members with disability), is: Don’t forget that people with disabilities are perfectly capable. They are able to and often desire to serve. Make it possible for them to do so.

After sheltering in place for 8 months, I finally “left the room”. There wasn’t a dangerous and armed enemy that I was hiding from and barricading myself into a safe place. I had just finished a very time-consuming and energy-draining endeavor (finishing my degree) and was regrouping and trying to make decisions on how best to use this time that was once spent writing and researching. I was safe and sheltered, yet requesting opportunities to leave that room and GET BUSY. I went searching and FOUND a great opportunity to make a difference in my non-work hours. (I didn’t have to look far as it was a non-profit that already knew me and knew they could use my talents and skills to promote their mission as Director of Client Services).

Just Leave the Room and Go Looking

I “meet” so many kinds of people with disability and chronic illness through “Hearing Elmo”. The condition and challenges may be different in every individual, but I have never met anyone who simply wasn’t capable of making a difference in some way, shape, fashion, or form. I have written about the prevalence of mood disorders and anxiety disorders that accompany acquired disability. It makes sense that a “new normal” does more than create physical and health-related challenges. Disability can affect us mentally and emotionally as well. I truly believe that isolation contributes to mental health disorders. For many of us, we may have to go out searching for ways to make a difference. Maybe it is blogging! Perhaps you can teach a class or coordinate a support group. You may ask for ways to get involved and be ignored and not given opportunities to suit your strengths and capabilities. Please don’t let this stop you. Keep looking and keep asking. I believe that finding even small opportunities to make a difference in the lives of others, contributes to improved mental health which can impact our overall health! (If interested in research that supports this, please email me!)

Part two of this series will be discussing sheltering in place BECAUSE WE SHOULD. I’ve been there and came out “alive” on the other side.

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal