Hearing Elmo

… NOT that there is anything wrong with therapy. I go to a counselor “as needed” myself! However, I learned early on in my living with disability, that boundaries are healthy, intelligent, and necessary.

“Daring to set boundaries is about having the courage to love ourselves even when we risk disappointing others” Brene Brown

Boundaries are Healthy (part 1)

I have what I call a servant’s heart, which comes from the fact that one of my love languages is “Acts of Service“. Doing little (and sometimes BIG) things are how I express love to other people. Doing little acts of kindness for others makes my heart happy and fills my own “love tank”. This includes acts for those I love dearly like family and “chosen family”. However, I also prefer to express love to my fellow human-being with little acts of service. So even my students (I hope) benefit from due date extensions for valid excuses, my bringing little miniature candy bars or granola bars to the class, and personally signing Valentine’s Day cards or other holiday gestures.

A dangerous misappropriation of an act of service, however, is to allow people to mistreat me or to pick away at my self-esteem and soul. When I was younger I would think to myself, “I will be the bigger person and turn the other cheek”. Other thought processes included, “If it makes them feel better to belittle me, I can let them have that because I know my own value”. Also, excuses such as “They have significant problems for which they have not received any help for, nor recognize their toxicity. I can ignore something they don’t recognize themselves”.

My friends? This is actually very unhealthy thinking. Retaliation is not the answer. Going on the “offense” or even “defense” is not healthy either. Both reek of BATTLE energy. Who wants to constantly be at war? I truly believe boundaries are healthy. My belief in this important work extends to training others as I do a workshop for people with disAbility. My goal is to teach others to recognize when and where boundaries need to be constructed. Boundaries ARE healthy and accomplish two things:

1. Boundaries speak volumes.

When we establish boundaries, we are telling another person who has been detrimental to our well-being, that “it STOPS right here”. It can be either an announced decision, or a quiet establishment of barriers that the toxic person discovers after a barb is deflected. At times, boundaries are necessary for family members and loved ones, for friends and acquaintances, for co-workers, well… really for any people we are (forced) into contact with by choice or by design that are detrimental to our good mental and emotional health.

Boundaries can include any of the following:

1. Refusal to spend time in the toxic person’s presence.
2. Blocking a toxic person on your phone.
3. “Unfollowing” or “hiding” a toxic person on your social media,
4. Filing a restraining order (if needed when the person is able to exact very real harm towards you).

The latter doesn’t even have to be a true legal “order”. At work on my college campus, another professor has a service dog – that isn’t. I’m not sure what skilled tasks her service dog does for her, but in the first year of her dog being on campus, I experienced 2 falls and 1 near miss as a result of her dog lunging for Finn (my service dog) and I. After numerous email exchanges and lots of defensiveness on her part, I finally had to go to HR and explain that for my safety (and I expect others) I needed to be able to avoid meetings with this other professor. Long story short, I knew I was a lot safer after requesting this boundary.

Boundaries may be either blatant creations or subtle constructions. It doesn’t matter which type of boundary you use, these boundaries tell the other person that you care enough about yourself that you refuse to allow them any form of abuse from this point forward.

1. Boundaries are good self-care.

Boundaries also speak volumes to YOU. Once I recognized that the pain and suffering I was experiencing from certain people was not a perk I OWED THEM, real peace became the “norm” for me. Once I determined that I was not required to allow anyone time nor space simply because we were related, I really began to understand safe boundaries. Once I accepted that a healthy boundary might mean “losing others”, I determined that any loss I incurred as a result of a boundary decision, was a loss easily reconciled. I have experienced loss of family members after refusing to allow a human I was related to any power over me with their venom. I respected those who rallied around the person who was toxic to me and cut me out of their lives. I found it was not easy but I adapted to “losing” those folks too.

I think it is hard to refuse “Denise access” to someone I am related to when they may have loved ones that I truly do value. My disAbilities have especially exposed family members who simply DO NOT GET IT and prefer to question or criticize my life choices. They don’t understand nor condone my work as an advocate. I am reminded of a quote by Glennon Doyle (a blogger and author), “This life is mine alone. I have stopped asking people for directions to places they’ve never been”.

One of my good friends divorced about 8 years ago. She discovered that even though everyone knew her spouse was verbally and emotionally abusive, when she cut him out of her life she also lost some friends. These were friends they shared and in-laws she cared for a great deal. Those losses were harder than the divorce, but time (and therapy) also taught her that even losses that were true LOSSES – those she felt at the heart and soul level – were worth it because of the person she now was.

These two things, what boundaries say to others and what they say to ourselves, are important acknowledgments that justify why boundaries are not weapons. They are evidence of strength and character. Do you need some boundaries in your life? Don’t hesitate. Make the decision today. You won’t regret it.

Part 2… Why boundaries are intelligent next post!

L. Denise Portis, Ph.D.

2021 Personal Hearing Loss Journal

Hearing Elmo always welcomes guest writers. This post is submitted anonymously on behalf of one of my many students who live with disAbility.

I learned at a fairly young age that people treat you differently when they know that you have a disability or chronic illness. I have struggled with health issues from a very young age. I didn’t know why I was sick, the doctors didn’t know what was wrong with me for years.

I have had joint and stomach issues pretty much my whole life. Doctors would blame it on my level of activity or my diet. That became a commonly heard thing for me, it was hard to change these factors because I would get injured so easily and my stomach would only tolerate certain foods.

After years of dealing with this seemingly never-ending cycle of health issues and doctor’s appointments, one of my doctors suggested seeing a geneticist. The original doctor suspected that I had Ehlers Danlos Syndrome or some other type of connective tissue disorder.

I saw the geneticist and he did an examination and asked me some questions. I fit the symptoms and had enough markers to be diagnosed. There was just one issue, it takes years of building the history to get the official diagnosis. It would end up taking three years and two shoulder surgeries to get my official EDS diagnosis. Sprinkled in those three years were countless support braces for my knees, hips, shoulders, back, and other things. I also had to have my gallbladder removed because it had been reduced to only 5-10% functioning, having it removed helped some of my stomach problems. 

One of the things that EDS does is makes it so my body doesn’t produce enough collagen, which leads to laxity in the joints, skin, and other tissues. My shoulders didn’t have enough collagen to support them, I have had issues with them for a while, and eventually, they got so loose that they couldn’t stay in the socket. I had my shoulders fixed a year apart from each other. Unfortunately, I will have to have them redone every 3-7 years depending on how fast they deteriorate.

When I got my official diagnosis I was relieved because I finally had a name to put to all of the stuff that was happening, I finally knew what was happening to me. Some people in my life weren’t as happy with me having a diagnosis that there is no known cure for. It felt like they would rather just hope that I magically wake up one day and I am all better versus confronting the fact that this will never go away. It makes sense to some degree that they feel that way, but when you are a teenager trying to explain the newly diagnosed syndrome that makes you have mobility and functioning issues, you just want people to feel the same feelings that you do.

I have been excluded from things for years because other people thought I wouldn’t be feeling well enough to come, I just got used to it at some point. Kids in high school were mean to me before I had my diagnosis because they thought I was faking it, now it seems like they take pity on me at times. I don’t want pity, I want to be treated like everyone else and I want to have a normal, functioning body.

Author: Anonymous – Anne Arundel Community College student

I have been in NC since 7/30 helping my Mom with some doctor appointments and creating accessible spaces in her home. Did you know toothpaste delivery can be accessible?

We have butt heads a few times because she has very conservative tastes and I want the BRIGHTEST and most BLINGY choice that ROCKS my world and yours too! We are compromising, however, and finding a number of ways that Mom can be independent. I have been pleasantly surprised by the number of products that can help folks with mobility challenges.

Even though I am thrilled with all that I am finding to help Mom with those “small everyday things” that are now MONSTROUS in difficulty level when living with ALS, some things are still a struggle. As you know I am late-deafened and hear with a cochlear implant and have Meniere’s disease. Mom’s ALS is Bulbar onset and speech is a real challenge. Some days are better than others, but I have to really focus to understand her and she has to really focus to make herself understood. I’d giggle at both of us if I didn’t feel like crying.

Already I am seeing Mom do things for herself that are simply AMAZING from where I am sitting. Mom has very limited range of motion and strength in her fingers, arms and hands. Yet where there is a will, there is a way. Believe me! I have seen her struggle and adapt and push through every waking moment of each day.

I am even challenging myself a great deal. I absolutely REFUSE to use the phone. The struggle is “real” and my anxiety spikes, so I request email, texting, and webcam calls. Lo and behold, while here with Mom and assisting in making doctor appointments and getting information about assisted living places, I have found a few ways to actually USE THE PHONE. I use a combination of Speaker phone with Cochlear implant bluetooth technology. It is complicated and time consuming and I often have to preface every call with an explanation that I may need to ask for repeats, but I am doing it! Where there is a will, there is a way.

Mom and I continue to work on finding ways to do things that were once simple. Things like pulling a shirt on or off, opening closed doors, brushing hair, and putting on Toby’s (her Shih Tzu) leash, and using utensils. Sometimes we find adaptive devices to accomplish a task. However, although a design may help one person with fine motor skill challenges, it just doesn’t work for Mom. We continue to brain storm because where there is a will, there is a way.

As a long-time member of the disABILITY community, I know how important will power is. But ya know something? Sometimes will power is not enough. I’m not trying to be a “downer” or eschew the power of believing in yourself. However, sometimes the WILL to succeed is simply not enough to overcome. I am learning that this does not equal failure. When I determine the only way to “get it done” is to ask for assistance, that doesn’t mean I am not being independent. Sometimes independence means being willingly dependent.

Say what?

I know! Right? But truly, sometimes independence means that we acknowledge we need other people and their help. This is NOT a disABILITY Advocate “deal breaker”. Think of it this way… asking for help and openly acknowledging I cannot do it on my own means:

I allow someone else to be a”help”.

I teach others that it is OK to not be OK.

I can collaborate with other folks about independence options. (Who knows who might invent some device to help others if I don’t explain the difficulty of a certain task?)

I provide the BLESSING of helping ME.

Having the will to be independent is one thing. Acknowledging the inability to actually do something without assistance is another. It’s not will power y’all. I will always need Finn (my #3 service dog) or someone else’s help to go from a seated position to a standing one. Standing up is not successful because of will power. For me, success in standing means I use the help available to me.

Do you struggle with certain tasks and everyday chores? There is a wealth of assistive devices out there! They aren’t free (though should be for those that need them) but great minds have discovered ways to independently accomplish a great deal of everyday tasks. Using “helps” doesn’t mean you lack will power. If anything, it means you personally house a wealth of will power. For you will take advantage of whatever help is necessary to SUCCEED. After all where there is a will, there is a way. Sometimes that means accepting help.

L. Denise Portis, Ph.D.

©2021 Personal Hearing Loss Journal 

with a positive attitude. Shoulders squared, chin lifted slightly, smile on my face, and oozing one LOUD and focused mantra

BRING IT.

I do this most mornings and have for 32 years. I need my morning pep talks, prayers and inner warrior rehearsal. In 1988, it was done to face the battle and acknowledge I was going Deaf. In 1994, I drank my super hero juice to face being fitted for my first hearing aid. In 1995, it was to gear up to go to the neurologist the day I was told I have Meniere’s disease. In 2005, it was the morning of my cochlear implant surgery, and in 2010 to spend the day in vestibular therapy to learn how to “fall safely” (after concussion #4).

It is August of 2021 and I still wake up each morning and square my shoulders, lift my chin, grin and ooze a “BRING IT” attitude. However, is is 10 AM and I have already cried twice as I struggle to assist and support my mom who was diagnosed with a terminal illness last week. Normally I still have spoons by 8 or 9 PM. (See “The Spoon Theory“). This week I’m spoon-less around 11 AM.

So I woke up this morning…

and reminded myself that sometimes you have to square off, lift your chin, and dig deep even if it is the middle of the day. At 11 AM I haven’t had a renewal of energy after a night’s rest. My spoons haven’t magically reappeared. Instead, of oozing “BRING IT” I’m hoping I can MAKE IT.

Like many of you, those who are going through things that seem

SO hard

Impossible

Too challenging for any “normal” human being,

just remember that we are resilient creatures. It may be 11 AM and I’m “spoon-less”, but I have siblings who are in this battle to support and fight for mom too. I have children who love me and text me during the day to remind me to take care of myself. I have a peer network at work with people messaging me or texting me several times a week to just remind me that I am thought of and valued. I have my faith to remind me that life is more than the 24 hours I breathe in and breathe out each day.

So I woke up this morning…

and I am not afraid that this day is already hard. For you see? I’ve had a day implode before and I survived. You can too. For all those who face seemingly insurmountable obstacles, please remember one thing. I may be sitting 5 feet from you like with my precious mother (currently seated at my 10 o’clock with her Shih Tzu, Toby), or 324 miles from the student who emailed me this morning and included a picture she took last night with her older sister in hospice counting down the final hours of kicking Multiple Sclerosis’ ass, (her words), and 3 time zones from my friend in Greece who is battling cancer AGAIN, but we are in this thing called LIFE together.

It isn’t always easy. It isn’t always pretty. It is, however, WORTH IT.

I’m grown-up enough in mind and body to know that today I started my day the same and petered out early. But you see? I know that I will go to bed tonight and sleep well (or poorly), doing so and knowing that my Apple Watch alarm and Golden Retriever, Finn, will wake me at 6 AM. My eyes will pop open and my feet will hit the floor. My first thought will be,

so I woke up this morning…

L. Denise Portis, Ph.D.

©2021 Personal Hearing Loss Journal 

One thing that I try to remind my fellow spoonies is that everything your able-bodied peers experience simply because it is part of living life, they, too, will experience. Just because you have disabilities or chronic conditions, you are not exempt from normal life experiences. Wouldn’t it be great if, as a person with disAbility, you were excused from having routine life crises and problems? It would be great if we could be “off the hook” for things such as:

1. flu/colds
2. Covid-19
3. allergies
4. caring for aging parents
5. routine doctor visits
6. tight finances
7. broken washing machines

I mean, the list can go on and On and ON! All the stress and busy-ness that abled middle-aged folks experience, we are going to experience as well.

I’ve been under a great deal of stress. I have never handled stress well, though I have certainly found healthier ways to manage it now that I am older. I would go into detail about the types and levels of stress I have been experiencing, but I want to stick with the purpose of this post.

My #3 service dog, Finn, has been a bothersome mammalian velcro doggo. This happens when your stressed partner is taken away by ambulance and is absent for 2 days. Please allow me to provide the embarrassing details:

Wear Your Medic Alert ID

I have four Medic alert bracelets and one Medic alert necklace. On July 15th I was not wearing any of them.

I was experiencing very low energy all day and dealing with typical Meniere’s disease symptoms such as vertigo and dizziness. These are fairly typical symptoms of my disease, especially if you add in stress. I was packing up my bags to spend about 10-14 days with my mom in North Carolina to attend some doctor visits with her. I was also preparing for a face-to-face meeting that evening with my campus Active Minds chapter and had been baking like a fiend all day. I love baking and had planned to bring goodies for everyone to enjoy. Overall, my stress level was “off the charts” from my schedule and from family members experiencing some life-changing crises lately. Bottom line, my stress has been very high for far too long.

I had just zipped my suitcase closed and was getting ready to put make-up on in the bathroom. I had about 15 minutes before I had to leave for my meeting. I realize this is likely TMI for some folks, but if you follow “Hearing Elmo” you know I just tell it like it is and believe in transparency and writing about REAL experiences. I had to pee.

As soon as my bladder was empty my vision went black and within about 30 seconds I couldn’t speak. The right side of my face was in a spasm, my hands were useless and my heart was racing. My first thought was “stroke”. I stood up and screamed as best I could (as I couldn’t speak, remember?). My husband poked his head in the door and after a head-to-toe look, he realized I was experiencing a medical emergency. I managed to push out a garbled “st-ooooke” and he immediately palmed his phone from his pocket and dialed 9-1-1.

I didn’t have my cochlear implant on yet, but I could speech read that he was telling the dispatcher that I was having a probable stroke. At this point, I was still upright but could only shuffle my feet. I was unable to move my hands and arms. My husband stood in the door of the bathroom looking properly scared to death and my only thought was, MY FREAKING PANTS WERE DOWN AROUND MY ANKLES.

I knew I couldn’t articulate that and my terrified husband was distracted with giving particulars to the dispatcher. I kept looking down at my pants while my husband was oblivious to what I thought, was very obvious.

PULL UP MY FREAKING PANTS.

He took my elbow to take me to the living area and I dug my feet in and swung my head in a HARD NOOOOO. He gave me this look like, “What the heck, Denise? Come with me!” With a little bit of SNARK and right back at the sweet, “missing the obvious”, freaked-out male, I ducked my head again to my britches.

PULL UP MY FREAKING PANTS.

Terry finally figured out I wasn’t going to move with my pants around my ankles. (Whew)

After he hitched up my pants, I shuffled to the nearest chair and collapsed. The paramedics arrived within 5 minutes. Pretty impressive if you ask me! The fire department arrived a short time later. Finn was completely freaking out at this point, so Terry locked the dogs in our bedroom and called our son who lives nearby to come and take care of them.

I didn’t have my cochlear implant on my head. I usually put this on last after getting ready to leave. I couldn’t hear any questions being asked (for obvious reasons) and Terry finally figured out my CI was not on my head. He went to the office to dig that out for me. I knew with probable stroke, the medical peeps were going to want to do an MRI. I cannot have MRI’s as I have a magnet in my head. I kept flailing my arm up as best I could and was giving poor Terry the evil eye again. Any blood that was still in his face drained away when he noticed that I didn’t have my medic alert ID on my wrist. He immediately began explaining to the paramedics the issue and making sure everyone knew that I could not have an MRI. As I was being loaded up into the ambulance, internally I kept fussing at myself for being caught without my medic ID. I mean, I preach the importance of this simple yet life-saving piece of jewelry all the time! Here I was having a “come to Jesus” moment about my own hypocrisy in not having my ID on my person. Gah!

Later in the ER and while waiting to be admitted to the hospital, my husband, who prides himself on his corny puns, told me that I literally got caught with my pants down and figuratively did by not having my medic ID on my person. I gave him a wobbly smile but really didn’t find that funny until much later.

I was able to speak and move fairly normally after a few hours, but I was admitted for probable TIA and also had dangerously low potassium. I also had 2 major panic attacks which is never any fun if you have experienced them before. I am a long-time patient with depression and panic disorder, but these two attacks were the worst I have ever experienced.

I’m home now and getting stronger every day. I have a slew of doctor appointments in the next 2 weeks. I guarantee that I will not be caught without my medical ID again. I had never anticipated being completely unable to communicate. If you have disabilities or chronic conditions, wear medic alert ID. In addition to various types of jewelry, there are also QR code options and smart watch technology that will allow medical personnel to immediately access your history during an emergency.

L. Denise Portis, Ph.D.

©2021 Personal Hearing Loss Journal 

It is always such a joy to provide this platform to guest writers who want to share stories and information about their own life journey as a person with disability and/or chronic conditions. First-person stories are powerful reminders that we are NOT ALONE. There are people all over this country who are working hard to be a positive advocate and world-changer on behalf of people with disability. Today I welcome a long-time friend whom I first met in 2002 at a national conference for people with hearing loss. We shared same age children and parenting with hearing loss.

I think you all know that hearing loss is a part of my life and it affects me daily. I fully own my hearing loss, and I do everything I can to work on hearing better. I have overcome obstacles throughout my life, including pushing myself out of my comfort zone so that I can participate in a “normal” life. I also personally try to educate people around me if I can’t “hear or understand” instead of withdrawing. Believe me, this is not always easy to do, I was lucky, I grew up with my hearing loss. Most people suddenly experience hearing loss and don’t have the faintest idea of where to start.

Sometimes, society intentionally throws up roadblocks, by not providing accommodations such as insurance for medically necessary hearing devices, rehabilitation, or outright putting communication responsibility on the person with the hearing loss.

Recently, Zoom became a necessary thing in our society, and many people with hearing loss were left out. Because of advocacy efforts, Zoom added captions to paid accounts, and after advocates cried foul, they have agreed to add captions to all zoom accounts by September 2021. During the pandemic and beyond in our new world, without captions online, many people with hearing loss cannot participate equally in their jobs or join in on webinars, online classes, and other types of online classes.

In my case, I participate in dance classes, and luckily, I have a fair amount of experience and I have bluetooth in my hearing aids that serves me very well, but if I didn’t have these two things already, I would be lost in participating in these classes.

When you have a disability, or your child or family member has a disability, it becomes your personal responsibility to deal with your disability.

What responsibility should society have in dealing with the disabilities of others?

What if it means that someone can have a little bit closer to a normal life, or if accommodating the disability means that someone can support themselves instead of society?

What if accommodating someone with their disability means that they can join in and support others trying to make a living, instead of staying home and not participating at all?

What if the majority of people feel that their daily lives are too complicated to consider accommodating even just one person with a disability?

Debbie Mohney