invisibile disability – Hearing Elmo

Support

Published on May 26, 2020May 26, 2020 by hearingelmo1 Comment

I first saw this Willow tree in “all its glory” when we first moved here in 2015

I really love living in Anne Arundel County. When we first moved to our “forever home” in 2015 (worthy of this auspicious title because we finally found an affordable and accessible home), this Willow tree was huge! Located on a nearby farm that I drove by every single day, this tree shaded a large area of pasture that 10-15 cows called home. You can tell by the size of the original trunk how massive this tree was in its prime.

I do not know if my admiration and affection stemmed from the fact the tree was simply beautiful, or that it bordered this idyllic version of a small farm reminding me of my childhood. Regardless, I became really attached to this tree. I passed it on the way to work and on the way home from work. It was hard not to get distracted by which cow or calf was scratching its bovine butt or shoulder on the trunk of this tree as I drove by each day.

One day I noticed that the owners had added some wooden supports on one side. I had noticed the tree had a slight “lean” to it all along and was curious about the farmer’s attempt to provide assistance against the “lean”. After twenty minutes of “googling” Weeping Willow trees, I discovered that their shallow root system can mean a tree can be at risk in high wind areas or areas with high water tables. I was actually surprised the farmer chose to do this as the effort provided support, but certainly was not aesthetically pleasing. It was the only provisional shade in the pasture, so perhaps the owners sought to prevent a problem before it happened. In this way, the farmer insured necessary relief from the heat of the day for the small herd.

Wouldn’t ya know, last Fall “something” happened to this tree. I didn’t see it happen so could only guess as the trunk was split and the vast majority of the tree lay in pieces on the ground. It made me very sad. Don’t ask me why, but I was a little weepy about the broken Weeping Willow! Over the next week I noticed branches being cut and hauled away. I was surprised to see the core trunk of this once stately giant with graceful crown of “weeping” branches still intact. In fact, it continued to be supported.

I like to think this survivor tree held some kind of sentimental value to the farmers. Perhaps it was a more pragmatic reason such as Willows grow quickly and it provided necessary shade to protect the cattle on a day with unforgiving heat and humidity. Still, I prefer thinking it was for heartfelt reasons they chose to do what they could for this “little engine that could” tree.

I watched all winter. Each day I drove by and thought this tree is DEAD and DONE. Much to my surprise, this Spring the tree began to grow again. It looks a little awkward and perhaps even unsightly with the obvious man-made supports in place. Yet it sprouted new branches with blooms and then leaves. I have a feeling this tree is going to surprise us all.

Anne Arundel Community College, like other schools nationwide, was forced to move all instructions online this Spring. Is it because I’m late-deafened that I really prefer interacting with my students face-to-face? Maybe. I know plenty of instructors with normal hearing that were dismayed by the daunting task of providing an engaging learning environment.

Many teachers provide a little blurb in their syllabus and perhaps a “3 minute mention” about accessible options, assistance and supports, and disAbility services. I realize it is likely because my heart beats within the chest of someone who lives with disAbilities and chronic conditions, but to me the issue should not be mentioned once and then never again. For one thing, there are numerous conditions that do not classify as a disability yet students still benefit from support. There are mental health diagnosis and physical chronic conditions that may make it difficult for a student to be “all in” during classes.

This is why I talk about it… WEEKLY. I remind students to come to me if they need support. Perhaps they need a face-to-face meet in my office. After quarantine, it may mean they needed a Zoom call so that they could talk. Prior to the social isolation restrictions in place, I used the ‘RED PAPERCLIP‘ system. My students have nameplates that they toss in a folder at the end of class. If the red paper clip on the back of their name plate was moved to the top, I contacted them via email and we set up a “text meet”, office hours conference, or FaceTime call.

After Spring break turned into a 3-week long, panic-filled transition period for instructors, I thought long and hard about what to do in place of my “RED PAPERCLIP‘ system so that students could still let me know they needed my support for something. These “somethings” included things like:

A 2-3 day extension on a due date
A pep-talk
A listening ear
Further information about the details of a project if the written instructions alone were not enough
Resources and/or connections to virtual mental health practitioners (I’m a teaching psychologist and not a counseling psychologist).
Resources for food, shelter, etc.
Advice and discussion about transfer decisions
Extra credit opportunities
AND MUCH MORE

So what to do if I didn’t have nameplates turned in after class and a visual check of red paperclips? Mid-semester I could only come up with staying in close contact (every couple of days) via email, reminding them of my availability and desire to assist. Do you know during the last 8 weeks of the semester, I received a half dozen texts from students who only sent a picture of a red paperclip? I received OVER a dozen emails from students with “red paperclip” in the subject line of their email. It made me smile. Well… it was a weepy smile, but a smile nonetheless.

For whatever reason, the farmer down the road from me, decided to support this willow tree. Will it ever be self-supporting again? I can’t answer that. Yet with support, this weeping willow provides something needed and necessary to a small herd of cattle. It is growing back quickly. Who knows what it will look like next year? Perhaps it provides some sentimental value to the owner as well. What I can tell you is that without the man-made supports in place, this tree wouldn’t have had a chance at a comeback.

My students know that I get “having a bad day”. I don’t allow them to abuse it but they know they can email me for some additional supports or “course grace”. I am also very transparent about my own good days, bad days, and having to push through ON a bad day. You see? I want to model good self-care. I also want to model the strength required to ask for assistance. Heck, I am “fiercely independent” using cochlear implant, captioning apps, service dog, and cane. However, I have learned there is no shame in asking for assistance. In fact, there is strength in asking for assistance and support.

Do you have people in your life right now who need support? If you don’t, you aren’t looking. We all need some support at different times in our lives. It may be a small “help”, but it can mean the world to someone at a time in their life when they just “need a little something”. I also encourage you to learn to ask for support. I assume many of you who are long-time readers of “Hearing Elmo” have disabilities or chronic conditions. Having extra challenges doesn’t mean you aren’t capable of helping others. It also means that you may need a little support from time to time. Learning to ask in a cheerful, matter-of-fact way goes a long way in positive advocacy. I have learned that many friends, colleagues and even total strangers do not know HOW I need support unless I inform them. It may sound like:

“Excuse me, could you pick up that credit card that I dropped? My service dog has trouble with that unless it is on carpet”.

“The automatic door button doesn’t seem to be working. Could you open and hold the door for me?”

“My fingers are particularly numb today. Do you mind picking up the papers at the end of each row?”

“The elevator in this building is not working today. Can you walk a few steps in front of me as I descend?” (Finn, my service dog, does all the work. However, I need a visual peripheral block to keep from feeling wobbly).

“Can you talk into my phone so my app can caption your voice? There is so much background noise in here I cannot hear you”

“Do you mind carrying my tray from the register to a table? With leash and rolling bag in hand, I cannot manage carrying that safely”.

I have never NOT had someone willing to help.

So keep an eye out for leaning willow trees. Pay attention to any “red paperclips” on the face of or in the body language of someone you meet. In small (and sometimes large) ways, we can make a difference.

L. Denise Portis, Ph.D.

Sometimes It Takes Work to Stay Positive

Published on February 24, 2017February 24, 2017 by hearingelmo4 Comments

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

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:

There are a lot of people worse off than you.
You have so many things to be thankful for! Why are you depressed?
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.

Denise Portis

©2017 Personal Hearing Loss Journal

Feeling Like a Weirdo

Published on July 22, 2016July 23, 2016 by hearingelmo1 Comment

Always thrilled to have a guest writer here at Hearing Elmo. If you live with chronic illness or a visible/invisible disability and love to write, I invite you to post in this venue to share your story.

I don’t remember when Deb and I first met. I feel like I’ve known her “forever”. We just “clicked” early on and she is now one of my dearest friends. Deb has taught me so much just by example. We have a lot in common, but are also different in many fun ways. C.S. Lewis said, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one!” I’m thrilled to share a post from her and hope you will check out her photography site as well. Visions of Song

I was a little bit grumpy when I went into work this morning. Just your ordinary kind of grumpy, at least I think that’s what it was at the time. We had a staff meeting scheduled for 9:30. I was walking down a hall at 9, about to get some water from the kitchen, when I saw a teammate who said “we’re meeting in the first floor conference room”. Thinking I’d lost track of time, I said, doesn’t it start at 9:30? He shrugged and said “sometimes it’s different”. Later, I found out what he meant, but at that moment I was walking in the wrong direction, sans water, notepad, calendar, and orientation. I rushed to grab my things and when I walked in, everyone was seated. Now, let me mention that I am relatively new on this job, and the folks are really nice and teach me a lot about what goes on there. Today, though, I was already grumpy, and now I was LATE (and still didn’t have anything to drink because I’d forgotten to fill up in my haste). I sat at a place around the large, squared set up of tables, strategic for what I knew would be best for me, able to see the faces of everyone should I have trouble hearing anyone. My supervisor said “sit where there are papers” meaning the agenda and other materials. Well, the seats available were not strategic for me, and I was already feeling grumpy and it was obvious that I was late and slightly holding things up. I said “everyone forgets that I am hard of hearing and need to sit where I can best follow what’s going on. So, if it’s alright by you, I’m just going to get these papers and sit over here”, walking to where I intended to sit and feeling quite determined about that fact. Meanwhile, supervisor gestured as if to say “come sit by me”. I did not want to explain why that would not be ideal, and she was trying to be helpful, but it wasn’t helpful, and by the way I was feeling more and more like a grump at this point. Further, I was feeling like a weirdo. An oddball. Someone who needs something special. I deeply dislike standing out, or seeming like I need something unusual. Everyone else was sitting wherever they wanted to, and I had to have this mini-scene because, as I stated rather unprofessionally, no one seems to remember that I’m deaf and use cochlear implants to hear. At the risk of sounding like I’m bragging, among cochlear implant users, I am a super high performer. I am pleased and even thrilled by what I am able to do hearing-wise. Then I get in a typical work situation, and suddenly: I’m a weirdo. It does not help that I am also something of an introvert, friendly, social, smart, funny, but I need tons of time to process and recharge. I really don’t think it has much to do with my hearing, either, as I had relatively normal hearing for the first 10, 12 years of life but was always this way. So I seem a little odd compared to the norm in terms of social interaction to begin with, and then there’s the hearing loss and the special needs.

Grumble.

You know? Most of the time, really and truly most of the time, I am OK with being deaf and hearing again with cochlear implants. I am glad to educate and inform and certainly to advocate for myself (although I have work to do in this regard, and tend to be much better at advocating for others). Today, I wasn’t in the mood. I finally got something to drink, and good thing, because I ended up sitting through three meetings before the day was done.

It did give me time to forgive myself, for feeling badly, for not feeling comfortable about asking for what I needed. I was also glad that I have become that person who knows what she needs and while the sending of the message might be a challenge at times, I can say no, I don’t need that, I need another thing, and know how to pursue what enables me to perform and participate at work. I walked through my apartment door at the end of the day thinking I either needed a drink (the after-five kind), or a good cry. I remembered I had some delicious food to make for supper, and having eaten and cleaned up, I sat and wrote this down. I don’t feel so grumpy anymore.

Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, and is passionate about issues related to substance abuse, addiction, and mental health, serving as coalition coordinator for Project Lazarus of Randolph. In her spare time she enjoys traveling as much as possible, and can frequently be found wandering the backroads and practicing nature photography in the nearby Uwharrie National Forest.

Pressure Cookers and “The BIG REVEAL”

Published on August 5, 2015 by hearingelmo2 Comments

I can hear my grandmother’s voice saying, “Turn up the heat and see what boils out!” None of us like pressure.

None of us enjoy being stressed.

None of us “sign up for” difficult times.

Yet life is full of difficult times. It’s just the way it is. I use to get so aggravated at my mother for responding to my self-pitying tears and hiccup-sobbing announcement that “It’s not FAIR” with, “Denise… life is NOT fair“.

Life isn’t. Bad things happen to good people. Wonderful people suffer. Terrific human beings have their hearts broken.

Sucks, don’t it?

How a Pressure Cooker Works

I don’t know of very many people who own a pressure cooker. I don’t use one. I had a grandmother who used one fairly frequently, however. Why use a pressure cooker?

Pressure cookers essentially do two things.

Raises the boiling point from about 212° to 250°.
Raises the pressure inside the pot and forces moisture into the food.

Using the pressure cooker as a great analogy for LIFE, it helps us deal with higher temperatures, and keeps us from DRYING OUT. That’s right. When you are forced to deal with stress and pressures, you actually work out your “dealing with it” muscles and make it easier to handle the next burden. This is especially true if you are dealing with it often enough that you’ve developed good habits. New good habits include:

Taking it to God and recognizing that “He’s got this”.
Learning to ask for help from trusted friends.
Learning to pace yourself; taking the time to rest when needed.
Looking for the GOOD in a very BAD DAY.
Burning your “Blame Game” after recognizing it is no one’s FAULT.
Showing off your “BIG REVEAL”

That’s right. After the burner is turned down and the pressure is OFF, we lift the lid and take our bows. The big reveal.

My former pastor from North Carolina reminded me however, that the “reveal” is often long before we lift that lid.

“The true test of character is not just seen in your actions but your reactions. We often like to excuse our inappropriate behavior by saying, “I’m sorry I was just under a lot of pressure.” But it’s the pressure that often reveals what’s on the inside and what we’re really like!” (Pastor Jake Thornhill)

While we are blowing off steam, we are also revealing to all who watch, who we really are. I have a dear friend who recently lost her young adult daughter in a car accident. As a person of faith, she knows she will see her daughter again one day. Yet, she has been very “real” in blowing off some steam. She is hurting. She misses her daughter. Her faith is strong. She’s dealing with it. However, I repeat: She is hurting. She misses her daughter. It is a poignant reminder to me that the very best people need our love, support, and prayers. Bad things DO happen to good people.

People who live with chronic illness, invisible conditions, or disabilities have good days and bad days. There will be days that you handle “your normal” in a positive, healthy way. There will also be days that you need to go back to bed and zip your lips because everything spewing out is pretty ugly. Not everyone is going to understand that. (Even some folks close to you won’t understand). Want to know some “ol’ sayings” that get on my very last nerve?

“What doesn’t kill you will make you stronger”

“Shine – don’t whine!”

“Be better, not bitter”

“When life hands you lemons, make lemonade!”

If we take these oft-used encouragements too far in our attitude towards OTHERS who are going through tough times, we miss out on one of life’s biggest blessings. One of the quickest ways to alleviate someone else’s stress and pressures are simply to let them know you are there for them. Pray for them. Hug them. Tell them, “I care about you“. If you deliberately look away when life increases the temperature under someone’s pot and assume “this is good for them”, you miss the opportunity to be used in a special way. Throwing a chirpy little positivism at them will not help them. BEING there for them is what matters.

Love someone with significant challenges? You will learn what to SAY, and what NOT to say, to support your loved one best. Please allow me to mangle one more colloquial expression?

“A watched pot never boils”. Oh yes it does. You can stand there and watch the pressure gauge go up and Up and UP on a friend or loved one’s pressure cooker, and it’s going to boil. There is no escaping the heat. I don’t know about you, but I want to be the kind of friend who is there through the cooking process and present for the big “reveal”, for when the pressure is gone and the lid is lifted. That’s what friends do. That’s what support is.

Denise Portis

How a Pressure Cooker Works

Showing off your “BIG REVEAL”