I am NOT your Lent Project

Perfectly content in my own skin

On February 17-19 I received 2 messages from people I only know through social media. One sent a message through FaceBook, and one sent an email. I thought the short messages were strange but began to piece it all together when I received second messages from both individuals a few days later. I also received a brand new message from someone that I also only knew in a round-about way.

Somewhere, a number of someones, have Lent messed up in their heads and hearts. The third actually only knew me through “Hearing Elmo”. We have probably only communicated three or four times in the eighteen years since I have been blogging. It seems some sort of challenge went out to strive to make a difference in the lives of under-represented, and diverse populations. Notes of encouragement, secret gifts, and words of affirmation were supposedly the goal in brightening the life of a person different than you.

I may be different than you, but y’all? I am plenty BRIGHT. There is just so much wrong with this way of thinking. Let me start with the obvious.

What is Lent?

Lent begins on Ash Wednesday and ends before Easter Sunday. Lent is all about doing WITHOUT. In choosing a sacrifice of some sort, an individual may concentrate on other things that they do not normally spend time doing. Things like meditation, prayer, self-examination, and much more. One can choose to observe Lent by doing without food like Jesus did in His own 40 day fast detailed in three of the gospels (Mark 1:13; Matthew 4:1–11; Luke 4:1–13). In today’s world Lent has become a sacrifice of perhaps “unhealthy foods”, things high in sugar, starches, or choosing to go “alcohol free”. One can also choose to examine what you spend a lot of your life doing and “fasting” from that during Lent. Perhaps that is watching television, or spending time on FaceBook or YouTube. You do not simply “do without”, you replace it with these life-changing new habits. At the end of Lent you may go back to some of things you choose to “do without”, only perhaps with a new mindset and new appreciation for quiet, reflective, purposeful thinking.

What Lent is NOT

Lent is not:

  1. Revealing the underlying and unacknowledged level of PRIVILEGE you have.
  2. Choosing someone to “bless” – someone with whom you never interact with at any other time of year.
  3. Dehumanizing another by making them your project. (A project denotes something that needs work or fixed)
  4. Assuming that your “new focus” is welcomed or necessary for a person you have determined is “in need”.

The fact that one individual who set out to “bless someone who is disabled” (revealed in a flurry of Q&A emails with me trying to determine WHAT THE HECK?) did so by finding me and my email address through this blog. I would love to put it out there for anyone who needs the message that…

I’m OK exactly the way I am.

Oh sure! Like anyone, people with disability, invisible conditions, or other challenges, may certainly appreciate genuine, heartfelt encouragement and affirmation from individuals who have a RELATIONSHIP with us. However, that boost is not given because we have a disability. It’s given because someone loves us and cares about us. It is provided by way of a positive relationship being lived out. Just as unsolicited advice is not welcome from someone you hardly know, unsolicited “feel good messages” are also not welcome.

Please understand that I am not saying you should not do nice things for other people. I simply ask that you be genuine about it. Please don’t make them a project.

L. Denise Portis

L. Denise Portis, Ph.D.

©2021 Personal Hearing Loss Journal 

The Two Sides of Me


I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.

I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).

An Invisible Influence

While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.

Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).

When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).

One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.

I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.

By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:

The Two Sides of Me

I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.

I Get it Wrong – So Will You

I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.


I share this post today for one reason only. You often aren’t aware of your own influence.

Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.

good example

“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.

Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.


Live your life – that’s right, the one that is often TOUGH – as if someone was watching.

Someone is.

Denise Portis

©2015 Personal Hearing Loss Journal

I Was Given Just 15 Months to Live…

Heather Von St. James
Heather Von St. James

Hearing Elmo welcomes guest writers are I am thrilled to introduce you to Heather Von St. James. Invisible illness and disability are not aided in remaining invisible. One of the things that helps to raise awareness is for advocates to write about their experiences, and educate others about “little known” diagnosis. Heather shares in an interview, her passion for mesothelioma research and awareness because it is HER story. You can learn more about her personal experience at: http://www.mesothelioma.com/heather/#.U2PU0ihNuSo

If you would like to contact Heather, please see her contact info at her website.

Heather, many people may not even know what mesothelioma is. Can you explain what it is in layman’s terms for us?

Mesothelioma is cancer of the lining of the organs primarily caused by asbestos exposure. There are three main types, Pleural, which is the lining of the lung, peritoneal, which is the lining of the stomach area and pericardial, which is the lining of the heart.

How common is this type of cancer?

It is quite rare… only about 300 people a year in the US get diagnosed with it every year.

What can you share about those early days immediately after diagnosis? What were you thinking and feeling, and what advice can you give those newly diagnosed with this?

The first few weeks were a total blur. I was going from one doctor appointment to another, then from one scan to another, making travel arrangements to get us to Boston to see the specialist, as well as trying to tell everyone in our lives what was going on was almost more than I could deal with. On top of that, I was caring for a newborn. My daughter was just 3 1/2 months old upon diagnosis.

I remember thinking that I just need a plan to beat it. If I could get a plan in place, then it would be ok. The feelings were all over the place; fear, determination, anger, relief that I finally knew what was wrong with me… then finally a state of peace, because I knew that no matter what, this was happening for a reason, and I would do whatever it took to beat it. My advice would be to find a medical team you are comfortable with, and a specialist. Get a page on Caring Bridge to keep friends and loved ones up to date on things going on, so you don’t have to make 1000 phone calls. Surround yourself with your support system. The more people to help you out in your time of need, the better… and let them help you. That is the hardest thing sometimes, is to open up enough to let others help us.

Heather Von St. James and family

What advice can you give friends and family members? What are “good things” to say and do, and what were some of the “not so good things” you heard that were not beneficial to you?

OH boy… there is not enough space to talk about this! The main thing to remember… cancer isn’t contagious. You can’t catch it from the person who is ill.. Your loved one who is sick has not changed, they just have this going on in their life. Don’t desert them… be honest with them, that yes, it scares you, and you are scared for them, but this is about them not YOU. Good things to say are to tell the person you love them. Be mindful of the person who is ill, and be honest with them. Don’t be a Debbie Downer, and be depressed around them, that does no good for anyone. Just be who you always have been. Trust me, they will appreciate that.

HOPE and staying positive are a central theme of your message. Can you explain why this attitude is so important when a diagnosis you may have seems extremely dire and frightening?

Negativity and despair will do nothing for you in your battle. You have to have a victorious mind set, not victim mentality. It’s been clinically proven that a positive attitude does more than just medicine alone. I let myself have down days. It is impossible not to, but just visit that place, don’t live there… when you are done wallowing in self-pity, get up, dust yourself off (figuratively speaking) and move on. No good comes of negativity. It is not always easy, but fighting something so scary is a lot easier to do when you have hope.

Heather Von St. James and daughter

You have a beautiful daughter who was only a newborn when you were diagnosed. How have you discussed your illness with her and what advice can you give someone if they are a parent?

We have never hidden anything from her. It has always just been a part of our life. She knows I have limitations because of my one lung and for the most part is pretty cool about it. I’m very involved with her life at school and take her places to show her that I’m not a victim, and that I try my hardest, even with certain limitations. Handling a situation like this is different for every family, depending on the child, and what they are capable of. I guess you need to do what is right for you and your individual family. What works for us, doesn’t work for everyone. Some people are very private, and the thought of sharing their life with the world is mortifying, while others don’t mind and put it all out there. It is whatever is right for you.

How can we help YOU raise awareness?

Share my story, my blog, my video… tell people asbestos is not banned. Tell them to call their elected officials and ask for money to be appropriated for meso research and to say NO to the FACT Act. Those are just a few… Thank you so very much for helping, it means the world to me.
– Heather Von St. James


Invisible Disabilities and Relationships

hidden disabilities

Hearing Elmo welcomes Dr. Terry D. Portis as a guest author this week. Terry has worked with the disability community since 1990 with The Brain Injury Association of NC, and then the Hearing Loss Association of America. He now works as the director of the Center on Aging and LifeStages at AACC. He supervises more than 220 faculty who teach more than 1,600 course sections each year, making it the largest program of its kind in the country.

In the September 21, 2013, edition of the New York Times, Katherine Bouton wrote an excellent article on the quandary of hidden disabilities. In the article she talked a lot about workplace issues, and whether or not a person should reveal their hidden disability. It is an excellent article, and I recommend it.

While the Bouton article focuses on the workplace, or potential workplace, what about issues with hidden disabilities with family and friends? Here are three things that happen in relationships where a disability is a factor. 

I’m used to it, and don’t think about it anymore.

Often a person who is facing the challenge of a disability thinks about it frequently. They have to. They have to think about ordinary tasks differently, like going to the grocery store, or sitting in a concert. To their family and friends, it is just “Sue” or “Tim”. Family and friends are used to the disability and might even forget about it. The psychological term is “habituation.”

As family members and friends, we might want to remind ourselves the challenge that the person faces living on a daily basis with a disability or chronic illness. It might have taken all the courage they could muster just to go to work today.

For the person with disability, don’t let this forgetfulness hurt your feelings! How could they forget? Well, you want them to forget. You want people to see you for you, not you, the disability.

Good days, bad days… how bad is it?

With many disabilities, the person will have good days and bad days (like all of us). Numerous factors such as the weather, fatigue, stress, or even diet can have a significant impact. If those issues are managed or under control, then the person’s disability might not manifest itself as prominently. Change one of those factors, and the person might struggle with tasks today that they seemed to handle quite well yesterday. A personal example would be that two days ago my wife,  who lives with a balance disorder, could walk across the room without any difficulty. A major weather system is now coming into our area which means that yesterday I had to grab her elbow to correct her balance a number of times just to talk to her.

For the friends and family members, don’t let this uneven performance cause you to doubt that the person is struggling as much as they really are.  They aren’t “faking” on the bad days, even though to the casual observer it may appear that way.

For the person with the disability, celebrate the good days, and don’t let the bad days cause too much frustration. Realize that the people around you don’t intuitively know whether you are having a good day, a bad day, or something in between. People also do not have your level of understanding of what having a good day or bad day means. They work and live with you; however, you live with the disability.

You’re healed!

With advances in prescription medicines and medical technologies, people often find some relief or remediation for their disability. New hearing technology? Well, glad you can hear now. New medicine for your seizure disorder? Glad that’s over. The truth is, it is not quite that miraculous.

For both friends, family members, and the person with the disability, realize that new medicines and technologies will probably not take away all the challenges created by the hidden disability. In many ways, they are miraculous, and we should be thankful for the day and time in which we live. On the other hand, let’s not allow unrealistic expectations dampen our enthusiasm for the better life that people with disabilities can lead.

Hidden disabilities create challenges in a person’s life, and in their relationships. Relationships are always “messy,” and often unpredictable. Taking a few minutes to remind ourselves of other people’s perspectives strengthens those relationships. In turn, our lives are enriched and we find deeper meaning in everyday life and work.

If you would like to contact Dr. Portis you may contact him at Lightkeeper’s Journal.

Hearing Elmo welcomes guest authors! Interested? Contact Denise at denise.portis@gmail.com

Denise Portis

© 2013 Personal Hearing Loss Journal

Peek-a-Boo! I Hear You!


When my kids were little we played “Peek-a-Boo” just like other moms with little ones. However, I would say, “Peek-a-boo, I hear you!” and uncover my mouth as well as my eyes. Nursery workers very likely wondered who taught my kids such a simple game – incorrectly!

My readers tell me that one of their biggest frustrations is when hearing folks around them act as if steps they have taken to manage their symptoms = normalcy. Readers with MS have told me that family members behave as if they should now be symptom-free since they are on medications. People with hearing loss are frustrated when family members and friends communicate as if a cochlear implant or hearing aid means they now have normal hearing in all situations. A friend of mine who lives with chronic depression told me how aggravated she was when friends did not understand that she still deals with symptoms of clinical depression despite medications and therapy. I try to tell people that managing our symptoms does not cure the disease or eliminate a disability.

I hear SO WELL with my cochlear implant…

In quiet places

when I’m not distracted

when I’ve had plenty of rest.

At my annual mapping appointment each year, my audiologist continues to say I’m hearing super well! But there are environments in the “real world” where I don’t hear as well as I do in the sound proof booth or in her office. Because of this, my family have learned that despite how well I’m hearing, I need to still see their faces in most “real world” situations. Yes. I get a thrill when I am able to easily talk to them from the other room. But the water isn’t running in the sink, the dishwasher is finished with its cycle, and the television isn’t on as they speak from the distant living room.

Ever once in awhile I reach up to gently move a hand or turn a face. They sheepishly say, “Sorry” and continue what they were saying – now fully facing me. I can’t do this with people I don’t know well, however. How important is seeing speech to understanding and hearing well?

Seeing Clear Speech

We all know a mumbler. Even people with normal hearing ask them to repeat. We all know someone with a heavy, “Duck Dynasty” kind of beard. We all know someone who shyly covers their mouth with their hand when they are laughing and talking.

In a study by Cassie et al., (2005), adults with hearing loss scored the same as those with normal hearing after the speaker was given instruction to face the other person and speak clearly (not loudly). Volume doesn’t help by the way… it only distorts speech. Hard to remember when a friend or loved one with hearing loss says, “huh?” You default to yelling! 🙂

Another study by Reed and Delhorne (2009) showed similar “near normal” results in adults with profound hearing loss when other conditions such as clear, visible speech was included in even noisy environments! (These folks were also aided or had cochlear implants). There are simply too many studies to cite that show how important visible, clear speech is to children who have hearing loss and are learning language.

Bottom line? People with hearing loss hear better if they can see your face. I’m not saying shave your beard (trimming it would be nice, however). Even if the person with hearing loss seems to hear you really well in a quiet room and actually looks away from you while communicating, when other people start filing into the room for the meeting they may need to see your face when you speak to hear well.

As to other kinds of chronic illnesses and invisible disabilities? Please reach out and celebrate the GOOD DAYS with the person you know who lives day-to-day with a diagnosis that is permanent. Your own circumstances could change and you find yourself living with a similar condition.

Denise Portis

© 2013 Personal Hearing Loss Journal

Caissie, R., Campbell, M., Frenette, W., Scott, L., Howell, I., & Roy, A. (2005). Clear speech for adults with a hearing loss: does intervention with communication partners make a difference?. Journal Of The American Academy Of Audiology, 16(3), 157-171.

Reed, C. M., & Delhorne, L. A. (2006). A Study of the Combined Use of a Hearing Aid and Tactual Aid in an Adult with Profound Hearing Loss. Volta Review, 106(2), 171-193.

You’re So Vain…

chloe hug

I love my local grocery store. Not so much that I was pleased I had to go twice this week after forgetting a few items, but the aisles are spacious, the employees know me (and Chloe) by name, and I save a lot of money in both sale items and even gas points. My unexpected impromptu second visit this week was disastrous, at least from an emotional standpoint. I came down the aisle looking for those elusive cotton balls that I failed to remember on my first trip and met a lady only slightly older than me with two canes. We stopped to chat for a minute and thought I had met another who understood when she surprised me by saying, “I just couldn’t work with a dog. It seems so vain because so much attention is brought on by being with one“.

I could feel the heat creep up in my face and I blinked back tears as I stuttered out, “Well different strokes for different folks I suppose“. (I’m always so proud of how eloquent I am in a pinch *rolls eyes*).

I really had very little left to say so quickly cut it short and moved on to find those STUPID cotton balls. Because ya know? Now I was MAD after that initial “kick in the gut” feeling so I determined then and there those cotton balls were stupid. Made me feel better anyway.

My husband and I kid around about how vain Chloe is. Her biggest fault as a service dog is that she is too friendly. She’s a flirt. She gets gently reprimanded on days my balance is really off if I put her in a sit/stay while talking, but then she wags and flirts and stretches for a kiss. Heaven forbid someone actually switch their attention to HER! Then she is like, “You love me. Denise loves me. We all love me. I love me.” She’s so vain! (♫♪ Chloe, you probably think this post is about you! Don’t you? Don’t you?♪♫)

Many people with invisible disabilities are not in favor of mitigating their disabilities with a service dog because it DOES bring attention to you. As a matter of fact, I know of cases where folks drop out of training programs when they discover that this service dog will bring unwanted attention to them. That isn’t worth it in their opinion. And… that’s OK. I have Meniere’s disease (a balance disorder) and am hearing again with cochlear implant technology. I HAVE chosen to mitigate those invisible disabilities with a service dog. I wear bling-bling on my cochlear implant processor. On days my balance is REALLY bad, I use a bright purple, metallic cane. This works for ME. It doesn’t mean it will work for YOU.

could’ve should’ve would’ve

If I could’ve… if I shoud’ve.. or if I would’ve – I suppose if I hadn’t been on the verge of tears I would have told this woman:

Do you know that before Chloe, I spent 20-30 minutes before work each day changing outfits trying to find one that hid all the bruises from my falls?

Do you know that when the elevator was temporarily out of service this week I didn’t have to cancel class because Chloe was able to counter-balance for me on the stairs?

Do you know this cochlear implant bling-bling helps people remember to face me when they speak if it is obvious I’m not hearing well?

Do you know all these patches and certification tags on Chloe’s vest legitimize her role as a service dog so that I have less access issues?

Do you know it takes me 45 minutes to get groceries each week now because Chloe picks up the things I accidentally drop compared to the 2 1/2 hour trips I use to have?

Do you know I never have to ask a stranger to pick up something for me now?

Do you know I’m working again because I don’t have to worry about putting students out to pick up pens, erasers, markers, or papers for me in the classroom?

Do you know I never have to worry about missing a phone call now?

Do you know I have the sweetest, “kiss me awake” alarm clock in the whole, wide world?


Ok… maybe that last one is unnecessary.

But the reality?

weather vane

People with invisible disabilities or chronic illness are more likely to deal with VANES instead of vanity each and every day. We have things we pay attention to so that we stay SAFE, red flags that remind us we are pushing our limits. Boundaries in place to keep us from over-doing things. I know my body better than anyone… even my doctors. This past week we had torrential rains on Thursday. On Wednesday, I was in “full disability regalia“. Chloe, cane, and fresh batteries in the “ears” and still I wobbled and fumbled my way through the day because there was a system coming into our area! A student said, “Wow your balance is really off today!

I replied, “Yes! I’m a human barometer and much more accurate than the Weather Channel!

A thoughtful pause and then, “Is there an app for that?” (snicker… I love my students).

Like a weather vane that helps farmers or meteorologists know which way the wind is blowing, people with disabilities have things in place that allow them to “take their pulse” each day to see how to safely navigate the world around them.

I’ve met a good number of people who have a service dog. I’ve never met anyone that I suspected of choosing to do so because they wanted the attention. And so please understand that the only one who is vain in my partnership is CHLOE.

♫ You’re so vain
You probably think this POST is about you
You’re so vain
I’ll bet you think this POST is about you
Don’t you? Don’t you? ♫

That’s OK. If Chloe’s weakness is that she is warm and friendly… I can live with that.

Denise Portis

© 2013 Personal Hearing Loss Journal

Intimacy and Invisible Illness


I had numerous emails come in just during the last week, asking me to reconsider letting readers share their own personal stories about intimacy. We have enough, I think it makes a “good read”. Why I think it is really special though, is because it is a topic that is important, yet one that can be difficult to talk about with others. As always, I invite you to write for Hearing Elmo if you have issues, topics, or concerns that mean something to YOU. A person who lives with invisible or chronic illness, or love someone who does. Just email me at denise.portis@gmail.com to find out how. I don’t want to take away from the message and influence of this post. So I’ll shut up now. BIG GRIN! Here are a few of your stories – in your own words. I’ve made only minor spelling corrections and omitted only minor sections (with notice to the writer) for things that were maybe a little too detailed. 🙂

Intimacy and “Me”

Life happens with or without a hearing loss. Most intimacy doesn’t have anything to do with our hearing loss, but yes, hearing loss can impact how we interact with others.

I longed to have more close friends when I was in junior high and high school. The deal breaker was not that I giggled a little too much, or was a little shy at times. The deal breaker was that I was the odd girl out. I didn’t get included because I couldn’t hear well enough to be like everyone else. I didn’t get the printed memo on social activities. Maybe I was blissfully ignorant, because I ended up with a close dedicated relationship with someone I truly love, and who loves me for who I am.

I do have a few intimate friendships (non-sexual) with just a few friends. I get support that I need from a few individuals, and then I have a lot of acquaintances that I can talk to. And, more importantly, I do get out and participate in activities that I’m interested in, and I am connected to other people.

What I really miss? Is that I don’t have a close friend to call up and do something with on the spur of the moment. I don’t have a girlfriend that I talk to every day, and that asks if I want to grab lunch, or go shopping. I don’t get invited to parties, and I’m not asked over to the neighbor’s house have a drink or sit and chat. I missed out somehow, and I’m not quite sure how to correct that. Is it hearing loss? Or is it personality?

Maybe it’s confidence. I’ve gained confidence in some areas, but maybe I’m still hesitant when I should be reaching out to others. Is it hearing loss? Am I afraid of what others will think of me? Or should I embrace that perhaps it’s a little bit of hearing loss, and a lot of who I am as a person?

One thing I do know, is that I have to make things happen for myself, I can’t wait for the world to come and get me. Hearing Loss or not.


Intimacy is affected in my relationship because I’m always fatigued and in the bed resting a lot. My illness also causes pain which comes and goes. Since I’m fatigued and in pain a lot, there are many times that I don’t feel like being intimate. My partner lets me rest and after enough times being told no, he stopped along. This quickly turned into almost no intimacy at all.


My partner and I are intimate despite her disabilities. I guess if we have problems it is that both of us wish we could be more spontaneous, but it just isn’t possible. Because of the issues she deals with, I know it has to be a “good day” in addition to it needing to be a low stress day. She is fast getting to where she will need to stop working full-time. We can’t afford for her to go through the lengthy process of SSDI but working part-time would be in her best interests. I think maybe things can be more spontaneous after she is able to rest more. A 40 hour a week job for some kinds of disabilities is really difficult. It makes all other parts of life shift way down the list of priorities. I love her. If the shoe were on the other foot I know she would be just as supportive. So the spontaneity I do miss, but one does what one must to make sure both are getting their needs met. There is so much more to love than the physical anyway. At least that is what we believe.


As two adults with hearing loss, my husband and I are used to intimate relations with limited sound. That never deterred us; I would say we have a very close, loving relationship. Hearing loss has never affected us much in that area, except that there’s not a lot of ‘giving directions’ happening in our lovemaking since neither of us would hear it! We rely more on observing each other physically than listening for sounds of pleasure, for instance.

For me, the hardest thing was going completely deaf. Lovemaking feels more isolated to me now, especially since we are ‘bedtime, after lights-out’ people. I’m extremely nearsighted and, of course, don’t wear my cochlear implants to bed. Without them, I’m 100% profoundly deaf. So in the dark of night, I can’t hear (or lip read) and I can barely see. The absence of sound is very pronounced to me in that circumstance; even though I didn’t have much hearing before, I had enough to make me feel more connected during lovemaking and less isolated. This bothers me more than I realized it would, but unless we get busy with all the lights on (not happening!) or only if I have my CIs on (very, very rare) then it’s just something I have to get used to.

I miss the closeness of lying in bed, at bedtime, and chatting with my husband. There is no casual conversation for us – I have to actively face him and lip read, and make sure the lights are bright. So now we lie next to each other and read in silence. It’s frustrating to me that I can’t just make casual comments to him like I used to, and have that ease of conversation. It’s now a huge chore because of my deafness.


I became deaf later in life, I am now 21 but I also have Chronic Regional Pain Syndrome. Intimacy and relationships are difficult regardless of ability sometimes however illness or invisible disabilities further complicate matters. My boyfriend has been wonderful, from learning signed English (ASL confused the poor man) to supporting my decision for a hearing/service dog, but we have our problems too. He sometimes forgets that I cannot hear him and will get exasperated at having to repeat himself, or he may become slightly terse when reiterating what others have said. At the end of the day it’s our open and honest communication that allows us to continue the relationship. Sometimes the little things he says maybe helping me answer the phone or telling me I’m beautiful no matter what, and the not so little things like our date nights or the days I cannot walk, where he me to my wheelchair or through the house, to reminding people at church that I cannot hear and that at certain times even small touches are excruciatingly painful. Our lives are not perfect but no ones is, we each have our faults, but our love lets us see beyond them.


I have multiple disabilities and have been married for over 25 years. My husband and I are no longer intimate. Some of it is his fault (high blood pressure meds and failure to discuss options with the doctor), and some of it is mine. I know you, Hearing Elmo, from a Meniere’s forum. For many of us even laying flat is impossible. Being held, or other things that lead up to intimacy is just impossible without passing out or feeling so disoriented you want to throw up. That isn’t exactly helpful to a male ego. I’ve said “not now” so often it is “not ever”. We love each other. We just aren’t loving in that way now. We seem to have reached a point where there is an unspoken agreement that this is the way it is. I’m sure it isn’t healthy on our relationship, but it is where we are right now.


First a little about my chronic illnesses:

Like you I have bilateral Meniere’s, I have a cochlear implant, and will be getting a second next month. I have pretty much constant disequilibrium and use a walker to get around. I also have chronic migraines (most days I have a headache on the scale of 5 or above). I have asthma that has gotten out of control, so we are working to get that better. I have Idiopathic Intracranial Hypertension (high cerebral spinal fluid), this can cause severe headaches when exercising. But the two things that often inhibit physical intimacy the most is chronic hip and pelvic pain.

My husband and I used to have a very hard time showing intimacy. Mostly this was my fault, I was paralyzed by fear of pain. He was trying hard not to make me feel that I needed to do more than I was comfortable with so he would not flirt or do anything like that. This made me feel more uncomfortable.

After we started going to therapy because I was having a hard time dealing with the loss of my independence, we started communicating better. We’ve always communicated well, but when I started feeling like I was a burden it was hard to hear what was being said….I hope that makes sense. And my husband was having a hard time knowing how to voice things he was feeling. We did not show our intimacy for fear of hurting each other, or for fear things would get started and I would end up having to stop things because of pain or dizziness.

We began getting even closer than before, (we’ve had a great marriage, so it amazed me when things started to get even better.) We talked about everything. Communication that is understood has been so important to our marriage. We’ve always communicated, but we didn’t always make sure the other understood what was being said, we simply assumed it was.

We are now very intimate. Not always sexual, but always loving. It was important for my husband to know that I still wanted a sexual relationship with him, I was just scared. It was important for us to understand that if something happened because of my illnesses that caused us not to be able to follow through, it didn’t mean I was less of a woman, or he wasn’t doing something wrong. It was also important for me to know that he still found me sexually attractive, even at those times when I couldn’t possibly think of doing more than cuddling. Every day we say little sexy things to each other. Like when he’s getting dressed I’ll make little remarks to let him know how sexy he is. He tells me these things all the time, or we reach out and touch each other suggestively. We’ll joke telling the other they are a tease, then answer with, “No it’s a promise”. It’s so important to know that even though our sexual relationship has changed we still find each other as sexy as we ever have. A little flirting here, a little touch there….it all means so much.

When my husband looks and me and tells me that it amazes him that he is still so attracted to me even after all these years, it makes my heart swell…and I know that he is not thinking of my illnesses, or the weight I’ve gained because of the medication, he doesn’t see that, he sees me…and I love his so much for it, and it makes me want to try to have sexual relations more often. Our actual sexual intimacy doesn’t happen as often as either of us would like, but we both make each other feel desired every day, and that has kept our marriage fresh, and sexy.


I served USArmy and was discharged in 2010. I am 26 and do not believe I will ever be in a relationship again. I have scars, both inside and out. This subject is important so I’m glad we have a chance to talk about it. PTSD rules my life. Sometimes the scars on the inside are worse than outside scars. I cannot imagine being intimate with someone. Doctors tell me I need more time. I don’t know how time can help since I even have anxiety even in my sleep. I look in the mirror and can’t love myself. How could I hope for someone else to love me? For now I am working on relationships – the friendship kind. Even that is hard. There is so much broken. Maybe for some of us intimacy is hoping for too much.


I have a hearing loss and am 23 years old. My hearing loss has become a lot worse in the last 5 years. I don’t date. I’m reasonably attractive and work out to try and stay in shape. I work full-time and have about 4 semesters of school left. So I am in a position that I see a lot of people some of who I’m attracted too. Some are attracted to me too, but once they learn how hard it is to talk to me they stop trying to get to know me that way. At work, I’m able to speech read and write notes to clarify. I follow-up with email a lot after our team meets. I guess it is too many hurdles to jump over to date me. Right now I’m content with finishing school and then seeing if I can get into grad school fairly quickly. My goals keep me going right now. But someday I want to have a family. I would make a great mom. I cannot imagine being intimate with someone. I can’t even communicate on a date in a dark theater! So for now I just keep plugging away reaching personal goals. I do worry that a goal of being a wife and mother may never happen, however. Hopefully I can meet someone who can see past the hearing loss. I’m not contagious!


I have MS and I am a male. I always liked to be the odd ball. My wife left me about two years after my diagnosis. I work from home right now and have a service dog. I have my routine but don’t actually get out there and mingle much if you know what I mean. I think maybe I should go back to church. I stopped after my wife left me because I was pretty peeved at God. My brothers tell me I would probably be more likely to meet people at church to look past the MS and be willing to be my friend. Why does that make me sad?


I am in my 30’s and have a great sex life I suppose. I date a lot and enjoy the company of others. My friends and family tell me I pick real losers though when it comes to intimate relationships. Some question if I think I cannot get anyone better, someone who will treat me right. I have friends who don’t have neurological disorders who choose losers to be with too though. So it isn’t because of my own invisible illnesses. I guess I just have poor judgment. I’m willing to accept I might lack the self-esteem to try for better though.


I am a TBI survivor – motor vehicle accident. I’ve been in a chair for six years and have had no intimate contact since the accident. I don’t speak well. I don’t move well. I’m still here though. I have hopes, dreams, desires, and goals just like everyone else. Do me a favor and don’t tell people like me the right person will come along. Or that someone will love me enough to look past all of this. Love starts with friendships right. So just be my friend. Don’t be afraid of people in a chair. Just be our friend. We aren’t asking for a commitment of more than that. People are afraid of wheelchairs. My left arm moves funny and people either look at me like I’m weird or like they want to help. I hate both of the looks. I have to think a long time before I speak. People come up and talk and then continue to talk even when I’m trying to think about what I want to say. They walk away after they stood there doing all the talking. I want to scream at them. My dad says that people are not comfortable with silence. They don’t understand I’m trying to respond. I would love to have people that would just sit with me and enjoy the scenery. If I could sit without having to listen I can say what I want to say. I have a lot to say.

How Should I Take That?

Ever scratch your head and wonder what the heck did they mean by that?
Ever scratch your head and wonder what the heck did they meant by that?

Did you know that hearing loss is considered a communication disorder? However, I know plenty of people with normal hearing that seem to have a communication disorder. People have trouble communicating. Either they have the right words to say but the receiver interprets them wrong, or the person has “foot in mouth disease”.

Even more tiresome is the fact that we communicate with far more than our mouths. Our facial expression, body language, even our “vibe” or “aura” communicates something to others. Peter Drucker said, “The most important thing in communication is hearing what isn’t said.” Isn’t this the truth? Yet, it is so difficult to master the ability to accurately “hear what isn’t being said”.

I am learning, slowly but surely, to use reflecting – or paraphrasing – when I don’t completely understand what someone said. Either I’m not hearing all the words, or I’m hearing them but they don’t jive with what I’m seeing (either from speech reading or facial expression and body language). Here are some examples:

1. “Oh wow, I can’t believe you’re Deaf! You speak so well!”

While my first, knee-jerk reaction may be to respond: “Oh wow, I can’t believe you said that. You don’t look stupid!”, I try to take in the whole situation. What prompted their statement? Does their facial expression show confusion or delighted discovery? Do they look embarrassed seconds after having diarrhea of the mouth? I try to respond positively.

(small laugh) “Well thank you – I think. Is it your understanding that deaf people cannot speak? You know, most people with hearing loss are not culturally Deaf. They speak perfectly and are adventitiously deaf.”

2. “Why do you need a service dog? You don’t look like anything is wrong with you!”

Again, I try not to wince as I explain, “I’m glad I don’t look like anything is wrong with me, but I have invisible disabilities. Standing here you wouldn’t notice that I fall flat on my face if I try to pick things up that I’ve dropped. You wouldn’t know I have a balance disorder and am deaf by looking at me”.

This usually prompts a repeated brain fart response of #1. Scroll up and re-read.

What if it isn’t “SAID” at all?

Many of us communicate through email, texting, or even FaceBook. It is a whole ‘nuther set of problems when you take something wrong that has been written. We don’t get the extra cues of facial expression or body language. We rely more heavily on context, or what we already know about the person.

I have actually responded to an email or other written communication by asking for clarification. I do indeed have TMI (too much information) disease, but I’m learning to keep it brief. “What did you mean by that?” and then copying the sentence or question that I took wrong or in a negative way. Many times the person re-reads what they wrote and are appalled at how it came across to you. They re-word it, apologize, and you gain a better understanding of what they really meant.

I live in a family of very sarcastic people. We also text a lot. I have a family that is super thankful for unlimited data plans because we’d be homeless if we had to pay for every text kind of gratitude. Despite how much we communicate this way while apart…

SIDE NOTE: I’ll just slap you up side the head if you ever text me when we are standing next to each other.

… sometimes I can’t accurately interpret the meaning when I can’t see their faces. I’ve learned in face-to-face communications that a certain twinkle in the eye, quirk of the lips, or tension from suppressed laughter, means that the family member is being sarcastic.

So I put the gun down.

In texting or email I don’t get that. My usual response?

“Ummm. what?” (Took me a long time to teach auto-correct that for ME, ummm, is really a word).

This allows my family member to repeat in a more direct way. “Say what you mean. Mean what you say” is morphed into “Text what you mean. Mean what you text”. Hey… it works for us!


What happens when you are flat out misunderstood though? You meant well, but someone jumped to the wrong conclusion. They are mad. They took it wrong. You are shaking your head and silently recording into your thinker, “Note to self: Never try to help so-and-so again”. Before you hit SAVE, try giving the person a chance to understand what you REALLY meant by helping, or by what you said.

I have actually said something along the lines of:

I tried to help and only meant to encourage you. You took what I said wrong and that grieves me. I wish you could see my heart and know how I meant for this to be taken. I know you’re mad. I’d like to work this out. Let me know if we can discuss this further.

Nope. It isn’t a guarantee you will make things right. Offering that olive branch may mean that the person grabs it up and smacks you on the head with it. But hey! Who did the right thing? Pop an olive in your mouth, puff that chest out, and walk away with the kind of swagger only those who know they did their part in communicating WELL can do.

Sometimes I wish we were all dogs. I’d always know you meant well if your tail was wagging.

Denise Portis

© 2013 Personal Hearing Loss Journal

Team Chatter

In public, I talk to Chloe constantly. May 4th I learned what this is called...
In public, I talk to Chloe constantly. May 4th I learned what this is called…

Photo by Julie Wu, volunteer and therapy dog handler for Fidos For Freedom, Inc.

A trainer exited Pi’s Deli behind me and said, “Great team chatter”.

I’m always so eloquent. I responded, “Ummmmm”, with a questioning look that spoke volumes.

Fidos For Freedom’s trainers have had a LOT of practice and experience with people with hearing loss. She rephrased. “Good communication with your dog”.


When I hear a “new for me” phrase, I am often scrambling to catch up to the conversation as I work to interpret the meaning. Having been partnered with Chloe since 2007, I think I can safely say I’m a veteran team. That doesn’t mean that I don’t still learn new things, however. Phrases like “team chatter” may be heard, but not understood until I spend a few minutes pondering it.

What does it mean?

Team chatter is important in a service dog team for two primary reasons. Team chatter keeps your dog’s attention on YOU if you use their name a great deal and talk to them. A second reason, however, is that service dogs need to know when they are doing something right! The tone and certain words connect with them.

This trainer may not have put two and two together like I did when preparing for this post. But the trainers use team chatter as well. When I did something right, this trainer told me so. If something needed polishing, she would tell me. She gave feedback throughout the certification segment we were doing that morning. She is a trainer and I am a client. However, we too, are a team. We are co-volunteers – even teammates in an organization we both love. Fidos For Freedom, Inc. (see http://www.fidosforfreedom.org/ for more information).

Why People with Invisible Disabilities Need Team Chatter

In psychology we use the phrase, words of affirmation, to explain the inherent need we have to receive “high 5’s” literally and figuratively.

Paul Hulijich explains, “The mind is very powerful, and it needs to be spoken to. We are all aware of the power of being told, for example, that we look well; it often immediately evokes the feeling of being well. We are influenced by what people say to us” (Hulijich, 2012, para. 3). Since I have had to learn to do a great number of things “differently”, it means a lot to me when a trainer, friend, or family member tell me that I handled something well.

At my daughter's college graduation, May 11, 2013.
At my daughter’s college graduation, May 11, 2013.

My husband praised me for how I chose to ascend and descend a number of steps in various arenas this last weekend. Even with Chloe in a close “heel”, I’m just not safe on steps in large cavernous – or open air – places. I didn’t make a big deal about it, only reminding Terry, my husband to either stand immediately in front of me, or behind me. Placing a hand on his shoulder is all I need to keep from falling when going down steps. Going up is a little trickier, but we still have a well-rehearsed plan. He told me, “You use steps with a lot more confidence now. You don’t even miss a beat”.

I don’t know about YOU, but it means a lot when someone notices what was once trial and error, becomes a well-polished, good habit. I need affirmation when I’m told that I pick up cues about my volume better. It means a lot when someone notices that I grin and advocate when having a near miss in a crowded hallway, and make it a learning opportunity.

One day last week, Chloe did not accompany me to work as she wasn’t feeling well. (She has chronic early morning acid reflux). I only had two classes that day and so opted to let her stay home with my husband since he was off. Just like any normal day, I dropped a number of things in the classroom. One student watched with wide eyes as I braced myself against a desk and used my foot to pick up a stack of quiz sheets with a rubber-band around them. “Oh my gosh, you do that without even thinking about it! You live YOU very well!”

I blushed but also BEAMED at the impromptu praise. What Greg said, echoed the beat of my heart. This is what I want – to live ME very well.

We Can Use Team Chatter too!

Do you have a hearing loss? Do you live with a balance disorder? Have you learned to navigate life with low vision? Do you have a chronic or invisible illness? Whether you are new to “the new you”, or a veteran, there are people around you who could use some team chatter.

I know, I know! It may not always seem as if they are ON YOUR TEAM, but there are still co-workers, friends, and family members who could benefit from being told when they are doing something RIGHT.

Sarah, a person with low vision, once asked me where her husband was. I pointed and said, “He’s right over there”. She reached up and grabbed my pointing arm and followed it with her hand in the direction I was pointing. Off she went in the RIGHT direction, leaving me pondering my own OOPS. After that, I did much better about responding with phrases like, “at your 9′ o’clock”; or, “over your left shoulder about 25 feet away”.

She noticed. “Denise, you do a great job at giving me directional assistance. It really helps!” I’ve tried to remember to do the same for the folks in my life.

“Thanks for re-phrasing that. I understood it perfectly the second time. You don’t even have to think about doing that for me now. Thanks!”

“I appreciate you habitually moving to allow me to stand next to the side when we get on the elevator. It really helps to have something to lean against”.

“Thanks for ignoring Chloe when we talk in the office. I know you love dogs, and because she knows you it can be hard to ignore that wag! It really helps me though, so thank you!”

As a person with both Meniere’s disease and hearing loss, I do a lot of reminding about what works well to assist me, and what does not. (This can be tricky because we don’t want to embarrass or offend someone!) Sometimes I feel like I’m constantly in “education mode”. Yet, we need to remember to tell folks around us when they get it right! It affirms what they do or say in interacting with us. Perhaps they even just need to hear that they “leave us be” in a healthy way! “Thank you for not assuming I needed help with that and waiting to see if I ASKED for help”.

I hope you will work to incorporate team chatter into your own relationships. Words of affirmation and open communication can be so important. Don’t assume others know when they are doing a good job. Let them know!

Hulijich, P. (2012). Affirmations. Psychology Today. Retrieved, May 12, 2012 from http://www.psychologytoday.com/blog/mind-wellness-awareness/201211/affirmations

Denise Portis

© 2013 Personal Hearing Loss Journal


This past Sunday, my pastor spoke on discipleship. In discussion of what discipleship actually is (growth), he discussed how some people may get confused that at the end of twelve years of high school they graduate and participate in commencement. Commencement is not the end of something; rather, commencement is the beginning of the rest of your life. However, for some that may be the defining moment of their life – the culmination of all they will accomplish.

According to dictionary.com, commencement is a beginning, or a start. Merriam-Webster defines it as a point in time in which one “enters upon the next”. In just a few months, commencement will take place at a number of schools. At the community college where I work, reminders are going out to students reminding them to petition to graduate by a certain date. At Fidos For Freedom, a service dog and therapy dog organization, commencement takes place at the banquet that takes place each May. Clients who are “graduating” this year are already gearing up for speeches, festivities, and recognition of a completion of training.

Yet these exercises are not an ending to anything. Rather, they are a beginning. For college students they may be transferring to a four year college to obtain a higher degree. It may mean looking for that ideal career. For clients at Fidos For Freedom, it is the start of a new life of independence – with trainers and “family” in the wings should any further assistance be needed.

Safe People

The topic of my favorite book, “Safe People”, has been a recurring theme in many of my discussions with family and friends lately. I actually dug my copy out to read it again, because I found myself recommending it to several different people. Learning to identify and avoid unsafe people and relationships can be a hard-learned lesson. I think the truths that have permanently etched themselves on my heart and mind from this book, are how to be a safe person MYSELF. For me, it was reaching a point in time when I could turn my back on the past and boldly face my future. Sure! I took lessons learned from the past – in my relationships, problems, and successes – but armed myself with those lessons to be better equipped for my future.

It has been a commencement for me. Like Merriam-Webster explains… it is a period of time where I chose to “enter upon the next” chapter of my life.

Progressive Illness/Disability

I think one of the frustrating things about having progressive hearing loss, or chronic illness/disability, is that one may commence living life with a new charge for life , equipped to be as independent as possible, only for changes in our health to take us back to square one. Prior to my cochlear implant, I remember learning to cope with the telephone, conversations in crowded places, and learning to speak with people with poor communication habits. However, in a matter of months my hearing would take a dive and I would discover that what worked last month, didn’t work at all now! Like most families with small children at home, we lived paycheck to paycheck. We pinched pennies and scrimped and saved to purchase an amplified telephone for me. For five or six months I was in telephone heaven! I used the phone every single day with confidence and enthusiasm. It didn’t take long, however, before I was struggling to even use that new gadget. I earned a little extra time by using it when the kids were outside and the house was relatively quiet. What was once easy became increasingly difficult. Eventually, the frustration of what I wasn’t hearing, despite hearing aids set to t-coil and begging people on the other end to speak clearly into the phone, had the phone collecting dust from lack of use. I’d talk to other HoHearies and get some new ideas. At some point though? The phone became a thing of my past. I had to come up with ways to contact people other than the phone. For the late-deafened community, the emergence of email, texting, and even FaceBook became very real “life-savers” in terms of being able to freely communicate with others. Although I hear well enough on the phone now that I have a cochlear implant, these other forms of communication are still my own first choice.

Resilience is a Special Kind of Strength

Many readers of Hearing Elmo have various disabilities, invisible illnesses or chronic health problems. For some, those difficulties are progressive and force them into a constant state of evolution. This can actually be healthy. (I see some of you grimacing out there!) Yet progressive illness can produce resilience – the likes of which create a strong and capable individual who can face life’s problems with the confidence earned through experience. Resilience is a special kind of strength. These individuals know that living successfully with progressive health problems is simply adopting an attitude of commencement.

Some people never graduate. They never enter that next stage of life. Even though the past may be painful, they cling to it with a tenacity that may stun family and friends. If they have progressive health problems, they may be stuck in the grief process. The grief process is a PROCESS. In a healthy situation, one moves from one stage to the next, eventually reaching acceptance and a new normal. Even psychologically we can get stuck in the past. Everyone else has moved on, but we have super-glued ourselves to unresolved situations instead of letting go and moving on with our lives (like everyone else has). Living this way yields toxicity to both ourselves and to others. We become “unsafe people”. It can have a negative influence on our relationships, self-esteem, and emotional/mental health. Dr. Seavey addresses how to face the future in a terrific article that can be accessed HERE.

Can you look back and see different points in your own life where commencement took place? Using all you learned in a specific period of your life, you chose to begin the next chapter of your life. May we all view commencement as springboard to usher in a successful, victorious future and not as a monument that designates an END!

Denise Portis

© 2012 Personal Hearing Loss Journal