Category: chronic disease

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

When Family Can’t Forget

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For the sake of this post, I’m brave enough to admit my age. I’m 45-years-old. I remember thinking that 45 seemed really old when I saw my parents celebrate that birthday. Now that I’m 45 myself, it doesn’t seem very old at all. As a matter of fact, I spend a lot of my time wondering when I will grow up.

Are you who you were at 10-years-old? (Can you remember back that far?)

Are you who you were at 16-years-old?

How about 20-years-old? Are you the same person you were then?

I think about who I was at these *mile stone* birthdays and realize how much I’ve changed over the years. Oh sure, our personalities, quirks, and even some habits remained ingrained in our make-up even decades later. But something happens to an individual growing older.

Life.

And you know what? Life can be hard. Oh yes – I know! Life can be very good. However, in my own life the more positive changes in who I am, occurred as the result of crisis and difficulties. One of the more frustrating things about “growing up”, however, is that our families won’t let go of who we were.

Think about it for a second. I left home at the age of 18-years-old. Many of you did the same, or perhaps even younger. Our parents, siblings, and close relatives who sat in the same pew as we did at church and attended the same high school football games, very likely have had very little participation in your growing up since that time. That’s what leaving home is all about. We make our own lives, invest ourselves in our own families, make mistakes, and grow. All this happens with very little influence of the people that were ONCE a major influence!

It’s very frustrating to me, however, to not be seen as who I AM around my family as they think I’m still who I WAS. I wasn’t the best big sister in the world. Having dealt with a number of emotional issues in my late teens, I can admit I wasn’t the best daughter in the world either. Now that I’m 45-years-old I don’t get to see my family nearly as often as I prefer. I have seen my sister 5 times since 1986. I have seen my brothers one time in the last 9 years. We all live in different states – spread out all across the U.S. I am able to see my parents at least once a year. However, I haven’t seen my grandparents since 1999 – which grieves me to no end bein’ they had such a major influence on my life in my developmental years. (Colorado is a long way off from Maryland). I was getting a bit aggravated when family members would make comments about me – even in a teasing fashion -as if I’m still the same person that I was. But then it hit me! How could they know who I AM, since they have not been involved in my life on a daily basis for the last 2 decades? The answer to that is that – they cannot!

As a result of this “middle of the night” epiphany, I began to ease out of feeling frustrated at not being able to leave my past – in the past – around my family. Worse? Try evolving into a person with an acquired disability when your family can only remember you “disability free”. I feel for them! It can be very hard to understand exactly what it may mean for you to live life on a daily basis – different now- solely because of an invisible disability or acquired chronic illness. For my immediate family members the process was gradual and progressive. They would be unable to pinpoint a point in time when I began to be who I AM. But for other friends and family members it can be very difficult to understand who you are now that acquired disability or invisible illness has changed you.

A young woman with fibromyalgia said: “I guess, where i’m very frustrated today, is, i’m having a fibro flareup, no doubt due to stress, i work at a bank, and we’re getting audited tomorrow, so checking, double checking, to make sure everything is just right, and i am so tight, and sore today, and NO ONE gets it, to look at me,i might look tired, but they just assume i’m ok, well, i’m NOT. It’s one of those diseases that no one can see that you have it, they have no idea how much pain we’re in, and they just assume everything is ok, and they don’t understand why I’m being so quiet, and they think i’m mad, and it is not that, i just feel like dirt” (Dannape, 2011).

Invisible illness with invisible symptoms are difficult to explain or even complain about. You LOOK fine.

On a hearing loss forum, 16-year-old Xatego explained:  “How do I deal with my family who claim they completely understand my hearing loss? I appreciate the fact that they were supportive and gave some of their time to look after me. But it annoys me when they like to think that they understand my hearing loss and the implications it has on my day to day life. I basically have a 90% loss of hearing. For example, my parents question my need to have subtitles when I’m watching TV. They say if only I watch TV without subtitles, it would reduce my need for it. I explained to them why, they didn’t listen. My cousin and I are basically the odd ones out of our whole family. He has severe autism and behind his back he is labeled by other relatives as the “crazy” one. I wonder what they call me since they treat me like an idiot. One of them even asked me if I was ‘still’ deaf. My sister and my mother gets irritated when I ask them to repeat their words. I get so frustrated; it’s not like I like having to ask them to repeat what they’re saying continually. When they say they understand.. They don’t. If you don’t have a hearing loss you don’t understand the way it cuts you off from people” (Xatego, 2011).

It can be really hard to explain what life is like for you when you are only beginning to understand it yourself.

Trying to Leave your Past – in the Past

Have you ever lived with someone who was losing weight? Someone with a great deal of weight to lose has learned that in order to keep it off, weight loss should be gradual with numerous lifestyle changes. The people who live with you may not SEE a lot of weight dropping off of you. But if a friend or family member came to visit who has not seen you in a long time, they are astonished at how different you look! I think it is the same for family members who spend time with me that have not seen me in a really long time. They are taken aback by the cochlear implant, hearing aid, and assistance dog. They remember who I WAS.

Earlier I asked if you were the same person you were when you were 10, 16, and 20-years-old. As for me? I didn’t really like who I was at any of those ages. Did you make stupid mistakes when you were younger? Did you ever make a decision that left long-term consequences? Ever feel as if you are wearing “scars” as the result of some past experience? I think some of the most crucial, vulnerable moments are in the weeks, months and years immediately following a firm decision to be DIFFERENT. An alcoholic may remember the day and time of their last drink – even if it was decades ago. But they will be the first to tell you that family and friends hurt by their alcoholism had a hard time believing “this time” was for real.

The ex-con will tell you that when they made 180 degree turn and CHANGED, their skeptical family and friends had a hard time believing it was for real!

The drug addict who is now free from the poisons they once put into their body will tell you that family and friends who had “seen it all” – wait around waiting for the other shoe to drop! For a significant amount of time everyone’s expectation is that the person will go back to being who they WERE.

Why do we long for people we love to break bad habits, yet make it hard for them to really do so? Why do we believe they will only fail again? In spite of testimonies of people who have gone on to serve in their communities and churches, raise families of their own, and be contributing, POSITIVE influences in their homes and workplaces, we who knew them “when” expect more of the same. Shame on us! I have seen God use people who were once drug addicts, alcoholics, and criminals in ways He could never use people who look perfect.

At some point in time these changed people made a choice.

and they never turned back.

Victor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. God uses hardship to change us. But our biggest skeptics may be those who love us best. We may be misunderstood and even spurned. You may feel as if your family cannot let go of who you were. But I’ll never be that needy, selfish, emotional basket-case of young womanhood again. My trials have made me strong. Angela Barron McBride once said, “Full maturity is achieved by realizing that you have choices to make”. I made choices. You’ve made choices. Hopefully we are ALL continuing to reach towards what being mature is all about! For the Christian, it is becoming more like Christ. We’ll never “get there” – but our goal should be to become more like Him day by day.

Because I’m not who I was 2 decades ago, I long to be the kind of person who believes that people who hurt me years ago are not who they were either. That sister-in-law you couldn’t stand? Twenty years may have changed her into someone you can now not only like – but love. That brother who was in and out of rehab and managed to drag the family through the disaster of three failed marriages may not be who he was. At what point do we believe the BEST of people? If God can change ME, He can change anyone. I’m not perfect… and I have not “arrived”. But I do like who I am. I wouldn’t change a thing. The process was (and IS) painful, but worth who I see in the mirror each day.

Try not to be aggravated when family members have trouble letting go of who you were. Time will tell – and if you are lucky? You may live to hear one of them say, “You aren’t who you were… you’ve changed!”

Dannape (2011, April 27). Fibromyalgia General Discussion. Message posted to “The Pain No One Sees”. Retrieved May 25, 2011, from http://www.fibromyalgia-symptoms.org/forums/Fibromyalgia_General_Discussion/The_pain_no_one_sees/
Xatego (2011, April). Yahoo Answers: People with disabilities. Message posted to “How do I deal with my family who claim they completely understand my hearing loss?” Retrieved May 25, 2011, from http://answers.yahoo.com/question/index?qid=20110424135942AA52fMB

Denise Portis

© 2011 Personal Hearing Loss Journal

Soul Surfer

Published on by hearingelmo2 Comments

My daughter was home for Easter weekend so the family enjoyed a rare night out to the movies. The movie “Soul Surfer” had been recommended to us so we chose to attend on Sunday afternoon. I was in a bit of a huff when I arrived due to some family conflict, missing the first part of the movie while I sat and fumed. (Yup… I definitely need to learn to fume a little quicker).

Once I started paying attention, however, I really enjoyed the movie. When you “hear again” with a cochlear implant, you really do have to make the concentrated effort to PAY ATTENTION as listening is no longer a passive exercise – rather an active effort. On occasion, I’m lucky to snag a movie we are attending that is open captioned. I do not have to focus with nearly the same concentrated effort when the movie is open captioned. As it was, I finally TUNED IN and really enjoyed the movie. I won’t spoil it for you in case you haven’t seen it, but basically a teenager learns to live life differently due to circumstances that were neither predicted nor expected. She learned that “in spite of” she can continue to make a difference in the lives of others… to touch souls.

Individuals with acquired disabilities of any kind have to do the same, don’t they? I mean the alternative is isolating yourself and giving up. That isn’t a life I’d wish on anyone. (Believe me I know, because I tried it for a short time!) It takes a lot of courage to persevere and learn to do some things differently when life throws you a curve ball. I’ve always been a lousy “catch”, so wouldn’t you know when my own disabilities took hold and changed my life that I was totally unprepared?

I was at a Fidos For Freedom training with my assistance dog one Saturday and a fellow client that I have come to know quite well wasn’t at all surprised by a blunt question. We had learned to be “straight” with each other early on because we discovered that by doing so we could learn from each other. She is a client who has been matched with a service dog trained to assist her with mobility tasks. Having experienced a recent “wet week” due to spring showers in our area, I asked her how she found the wherewithal to come to trainings after having a “bad week”. She has had to learn to do things differently because of her disability and must prepare well in advance when attending trainings that other people may be able to spontaneously decide to attend! She said, “I simply remember that by coming I have opportunities to encourage someone else. I don’t want to miss those opportunities so I get my butt out of bed!”

I’ve never met anyone that was not able to MAKE A DIFFERENCE in the life of another. I don’t care who you are or what your circumstances are. The only necessary ingredient to successfully touching the life of another is BEING WILLING. If you aren’t willing, it will never happen. People with acquired disabilities have learned to maximize technology. We have learned to perhaps do something DIFFERENTLY in order to accomplish a task. We have also learned when to cut ourselves some slack. People with acquired disabilities have learned to ask for help at times. We are malleable, persistent, and BRAVE. No worries. I’m not “tooting my own horn” here, I’m simply pointing out the obvious having met numerous people with acquired disabilities.

Surfing for Souls

There are numerous ways individuals can make a difference. My “short list” is below. Feel free to leave comments and add to this!

1. Join online support groups and be active in the group. Reach out to others who are perhaps struggling with a new acquired disability.

2. If possible, participate in local support groups or chapters that meet physically each month. Go prepared to learn, but look for opportunities to serve.

3. Be open and honest. Don’t hide the fact on your Facebook. Don’t make your disability invisible. Visibility allows others to see you active in your community, doing things others do without thought. Shopping, church, or GOING TO THE MOVIES are all activities we can still accomplish. Welcome questions and be prepared to be a positive advocate.

4. Have business-card sized cards available to give to people who stop to ask questions about the: Cochlear implant bling, service animal, hearing aids, wheel chair, walker or bright purple cane! In this way they can contact you at a later date and ask questions in a more controlled, confidential way. They may need the information for themselves, or for someone they care about who struggles with their own acquired disability.

5. Don’t apologize for being different. Celebrate it!

6. Advocate, advocate, advocate! When the support groups and organizations to which you belong do annual fundraisers, DEMOS, or community service appearances, do not hesitate to get involved and advocate! At times you will be called upon to write local or state government officials. Take the time to do this!

I remind myself as I encourage you to do the same. I need to be be aware on a DAILY basis. I can surf for souls to touch. I can make a difference!

Denise Portis

© 2011 Personal Hearing Loss Journal

Disabled (Grimace)

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Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

We Are All Ambassadors

Published on by hearingelmo3 Comments

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

Frost Heave

Published on by hearingelmo1 Comment

picture from blog post at: Herding Grasshoppers

I recently read a post from one of my favorite bloggers. I love Herding Grasshoppers and NOT just because her son is hard-of-hearing. She is witty, adventurous and “real”. I rarely walk away form reading one of her posts without a smile on my face.

She recently posted about “Needle Ice” and frost heave. I was very intrigued. I’ve seen frost heave when walking trails before, but wasn’t really aware of what it was I was looking at. After reading her post I immediately went to look for more information about this phenomena. Frost heave occurs when moisture-retaining soils freeze in cold temperatures. As moisture sinks into the ground the freezing temperatures cause the water to freeze into ice. When water freezes… it expands and creates pressure. The soil presses up and may expose the roots of plants and has been also known to bring rocks and pebbles to the surface. Take a close look at the picture. The ice crystals have actually brought small rocks and pebbles to the surface. Once this thaws, the rocks and pebbles are left on top of the ground. One would almost think someone had “planted rocks” in an area that may have once been clear of them!

What “Heaves” out of you?

I have given a lot of thought recently about what kind of thoughts and actions are seen in my own life when the going gets “rough“? When my life becomes saturated with a seemingly endless bombardment of trials, problems, set-backs, health problems, and struggles, I am often left pleading with God “PLEASE! Not ONE more thing!” But ya know something? God must know my limits better than I do. Because there have been some difficult times that I have prayed and pleaded “not one more thing – thanks so much“, only to have a blast of cold air on top of my already “saturated life”. Exhaustion, pain, fear, depression and plain ol’ “bad attitudes” may have HEAVED to the surface of my life. These things are usually hidden. Some of the heaving exposes some thoughts and actions that just aren’t pretty. Some of it is just “junk” and “rocks”. The “heave” may expose “roots” as well and leave areas of my life vulnerable.

This past summer, I was having a pretty difficult time. I was doing my best to stave off depression as it is an unwelcome visitor that worms its way into my life at inopportune times. I was to the point of pleading, “Not ONE more thing God – please! Hello? Are you listening?” The next day Chloe was hurt in the park. For whatever reason (as we often will not understand this side of  Heaven), God allowed ONE MORE THING. Chloe’s foot took a really long time to heal and I even had fears she would ever be able to work again. Yes, she is special to me because she is my hound dog and  “doggie friend”, but she really enables me to be more independent too! What would I do if her foot would not heal? During the months (yes you read that right) that followed a lot of “stuff” heaved out of that pressure and into full view – especially to my family. It wasn’t all pretty. I was cantankerous (a nice way of saying PAIN IN THE BUTT) and aloof. I knuckled down and did the things I HAD to, but did not exert myself to do anything else. I had a major pity party several months long.

But not everything that HEAVES out of our saturation point is bad. Sometimes we discover that in spite of disability – we are very ABLE. You learn pretty early on what you CAN do, and end up doing it really, REALLY well. My saturation points have received an extra dose of FREEZE and heaved up compassion for others, patience, encouragement, and determination. I may stand and look around at the defrosted ground and spy a rock here and there. But sometimes? Sometimes I see beautiful geodes or prisms. I’ve not discovered a diamond yet – but heck. I’m only 44. I’m certain I’ve a great number of frost heaves in my future. Diamonds come with maturity. (If you ask my family – I’m not exactly THERE yet).

Have you experienced difficult times? Things that have happened in a life that already seemed completely saturated with problems and struggles? Don’t fear the weather forecast of overnight “freezing temperatures”. Meteorologists are RARELY accurate! If they happen to actually nail it one time? Welcome the heaving frost crystals to the surface and determine to unearth GOOD THINGS. Prepare your heart in advance to showcase determination, patience, long-suffering, gentleness, kindness, and love.

Experience enough frost heave and you’ll find that the soil of your heart and life is well aerated and primed for Spring.

Denise Portis

© 2011 Personal Hearing Loss Journal

Meniere’s Rant

Published on by hearingelmo3 Comments

I don’t usually go on and on about Meniere’s disease, but I’ve had a pretty bad week with the “little Rascal”. For one thing, I count myself extremely BLESSED as I seem to have only one major trigger. Rain. I know plenty of other folks who have other types of triggers that include flying, change in altitudes (vacations in the mountains!), alcohol, head cold or allergies, chocolate (oh my!), smoking, and even certain foods! So since I only have “rain” as a Meniere’s trigger, I really try not to complain very much.

A fellow Meniere’s patient pointed me to a terrific support group through Facebook today. I have already found a lot of great information. If you belong to Facebook… check it out here. There is a simple but helpful Meniere’s organization on the Internet which can be accessed here. A website providing basic information and clinical trials can be accessed here. My favorite website is the National Institute on Deafness and other Communication Disorders (NIDCD). They have a terrific Meniere’s Disease section that can be located here.  Thanks to the Meniere’s disease Facebook page, I was even directed to our very own Super Villain – Count Vertigo. Who knew?

Being a former farmer’s kid and because I still have numerous relatives that I love in a farming community in SE Colorado, I try to never belly-ache about the rain. Rain is necessary and in most cases a “shower of blessing” to farmers, ranchers, and those who get tired of moving their sprinklers around.

But this week? SIGH. I’ve had some bad experiences. On a rainy day, I fell in the laundry room this past week and happened to find the only exposed nail in the “unfinished room”. Thankfully, I hit it square and impaled myself through the fleshy part of my arm. I was able to pull it clean away and stop the bleeding very quickly. A quick verification that I had a tetanus shot recently, a severe pounding with the hammer on that (stupid) nail, and I escaped “nearly” unscathed.

This morning my alarm clock went off and my well-trained assistance dog was in my face immediately to “kiss me awake”. As soon as I sat up I knew it was raining outside. When the room spins the moment I become vertical, I rarely need to look outside to verify that it is raining. I didn’t fall until about 10 AM. Unfortunately, when I lost my balance I was on the stairs with my arms around a large load of laundry. Missing three steps means I have a pretty good chance of landing “gracefully” and still on my feet. Missing four however? Not a chance. I lay sprawled on the floor staring at the ceiling and a concerned hound dog with dirty laundry scattered all around me. I have a standard set of “OK, I’ve fallen – now what?” questions I ask myself.

1) Am I conscious? (duh)

2) Is anything broken?

3) Am I laying on anything important (like a dog or a cat)

4) Can I close my eyes and open them again and stay conscious?

5) Do I need to call a family member?

If I can answer No, No, No, YES, and NO… then I simply sit up and take my time to re-group. This time I didn’t hit anything other than my elbow on the way down. I may or may not be sporting a pretty blue spot tonight.

There is no cure for Meniere’s Disease. (Hope you aren’t new to the disease and I just depressed you for the remainder of the year!) There are some treatment options, but they only work for “some”, and all the options only serve to reduce the severity of symptoms or number of attacks. NIDCD lists several treatment options that include:

1. Medications – Prescriptions such as meclizine, diazepam, glycopyrrolate, and lorazepam can help relieve dizziness and shorten the attack.

2. Salt restriction and diuretics – I take a prescription diuretic and do restrict my salt. I’ve not seen any real difference, but continue to do these in case it has a cumulative effect.

3. Cognitive therapy – Doesn’t treat the Meniere’s but does help the patient deal with anxiety and coping with “future attacks”.

4. Injections

5. Pressure pulse treatment

6. Surgery

7. Alternative medicine. I take Manganese (5 mg) and a B complex vitamin. Researchers have found that Meniere’s disease patients have a Manganese deficiency. Manganese can be hard to find. (Magnesium is plentiful, but you’ll have to go to a specialty store or order online to find Manganese). Other treatments include acupuncture, acupressure, tai chi, and other supplements. Always tell your doctor if you are taking other supplements as many may interfere with prescription drugs.

This past year, Gene Pugnetti was surgically implanted with a special cochlear implant to treat his severe Meniere’s disease. You can read about the latest update here. The original story can be read here. I will be looking for updates about Gene and wish him the best!

Some things I have learned that help me with Meniere’s disease:

1. I take 5 mg of Manganese and a B-complex vitamin.

2. I limit my salt and take a prescription diuretic.

3. I take 50 mg. of Benedryl before bed.

4. I have inexpensive molding about 4 feet high along the hallway, kitchen, and bedroom. At night, if I have to get up in the dark, I only need to feel my way around the room to discourage getting disoriented. Without it, my eyes “play tricks on my brain” about how close the floor, walls, and doors are as I am struggling to see in the dark. The molding has allowed me to move about the house as needed in the dark without injury.

5. I never EVER go down the stairs without holding on to something. If I have something in my arms, I balance the “something” on one hip. On bad days, if it takes me 3 or 4 minutes to get down the stairs instead of 30 seconds, that’s OK. Patience is a virtue… and may prevent broken bones!

6. I avoid looking directly at ceiling fans or other contraptions that “spin”.

7. I do not ever ride roller coasters, or rides that spin in any way. If I am “spun” into an unconscious state, it is rather difficult to hold on! I made a promise to my family after “Space Mountain” in 2002 to avoid these rides for the remainder of my life. I’m finding it isn’t a difficult promise to keep.

8. I stand and sit with pre-meditation. To simply “pop up” or sit down quickly only means I will experience dizziness. Why bother when moving with a little more care will help to avoid it?

Hopefully this information may be of use to someone! I’m very thankful Meniere’s disease rarely necessitates I write about it!

Denise Portis

© 2010 Personal Hearing Loss Journal

Fallow Ground

Published on by hearingelmo3 Comments

I have really enjoyed FaceBook and reconnecting with old friends and family. However, FaceBook gets a lot of “flack”. My husband wrote a terrific, short post on his blog about this very topic and you can view it by clicking here. FaceBook has become much more than a way to “re-connect”. Because it is so simple to use, I use it connect to people I care about every single day. One can quickly see what people in your life are up to and honestly? It makes it easy to write a quick word of encouragement.

It also has some games. I’m not a big game person, but FarmVille is a popular one. I’ve become a little complacent about my own “farm”, but it is still fun to check in each day. I allow much of my farmland to be “fallow”. My busier, more industrious farming neighbors will “drop by” from time to time to take care of my fallow ground and plow it for me. If I’m really lazy and don’t plant anything, they will also fertilize the newly tilled ground.

I get tickled at the fact I don’t have to do a whole lot of work to my farm some weeks. At times, I wish that fallow ground would stay that way because it saves work for me later. (Like I said, I’ve become a lazy farmer). I grew up on the farm. Fallow ground is an important part of farming. Sections of farmland are intentionally left unplowed and unseeded during a regular growing season. Even though it is undeveloped, it is potentially useful to the farmer because it allows the ground to “recover”. The stubble left over from the previous harvest will break down and leave valuable nutrients in the ground. Because of my own sections of fallow ground on FarmVille, I have been thinking quite a bit about the concept of fallow ground.

Fallow Ground Symbolism

The Bible mentions fallow ground in Hosea 10:12 and Jeremiah 4:3. In both places it talks about breaking up the fallow ground as a word picture of cultivating your heart and life so that you can serve and minister to others. It lends the idea that a heart or life can be “hard” and unusable.

For a farmer, however, fallow ground IS useful. I am a big supporter of taking time off and having a designated time of reflection. Perhaps it is because I recognize that we are all way to BUSY. I have been emailing a lady in her 30’s who is a referral from Johns Hopkins Listening Center (their cochlear implant clinic). I’ve agreed to be a mentor and contact for people who are considering cochlear implants. (I’ve asked her permission to share this). It is difficult to be blind-sided by an acquired disability. Sometimes, the change can be sudden, extreme and permanent. Sudden sensorineural hearing loss (SSHL) had robbed this lady of her ability to hear well. She is feeling overwhelmed and at the breaking point. Her life has been in over-drive for some time, and SSHL made her feel like someone had “jerked the carpet out from under her and she lay dazed staring at the ceiling” (her words).

I said, “What you need is to allow some fallow time in your life. You are so busy and yet trying to cope with a major life-altering change. You are giving so much of yourself to so many others, you aren’t even able to weigh the pros and cons and investigate CI’s. I recommend taking time off. Allow your life to go fallow for a designated time. You need this time to re-group, think, and rest”.

She is now doing “just that”. She isn’t WASTING time. She is deliberately taking some time for herself so that she can work through her thoughts, feelings, and investigate cochlear implants.

“Fallow” is not Wasted

I think more people should determine to take time to reflect. I try to meditate and pray at least once a day. There are occasions where I take longer periods of time. But let’s face it… most of us are too busy to really have the time for reflection. What can we do about this?

This is an unpopular idea, but I firmly believe everyone should step back from “all their extra-curricular activities” from time to time. I believe elected (and volunteer) community service, non-profit, and support group positions should have specific limits on terms of service. It forces a change in leadership and allows over-worked, committed volunteers to rest (provided they don’t launch themselves into some new role).

Before insecticides and chemical fertilizers, more farmer’s left ground fallow to aid in replenishing the minerals that occur naturally from “resting the ground”. Today, leaving ground fallow may cut potential yield and profit. I believe that too many of us believe the same in our lives. If we do not keep volunteering for everything, who will do the work?

I had a real test of this in 2010. I have been told by folks I respect that, “If you step down from a leadership role, the vacancy allows God to fill it with someone He has already prepared for that position”. In 2010 I would be beginning the last year of school, and just simply could not lead my local chapter of the Hearing Loss Association of America. Numerous personal reasons and simply feeling BURNED OUT had me dreading yet another year of having to step up in a leadership role. The young mother who had taken the “reins” for 2009 had done an excellent job. I made the mistake of simply “moving” my available volunteer hours to another position of leadership within the chapter. As 2009 came to a close, this busy young mother wisely chose not to run another term. I was getting some pressure to step back up to “the plate”. Because I knew what this last year would entail for me I had to really think about it. Because I was already weary, burned out, and overwhelmed, I decided to put a “year sabbatical” to a vote for the chapter members. Incredulous that I was not going to step up and fill the vacant role, they unanimously but grudgingly agreed to a “year off”. I could tell that many were worried! We have elections in October and November each year. I actually had high hopes that God would press on someone ELSE’S heart the desire to step forward so that our chapter would not really have to close for a whole year.

I waited.

No volunteers stepped forward.

I “stuck to my guns” and we entered 2010 only meeting virtually. You know what? We didn’t “fold”, nor close our doors. As a matter of fact, numerous people once in leadership roles really needed this year off for various reasons. Elections are already underway for 2011, and we have a wonderful lady who is now able to devote her time and resources to leading our chapter in 2011. She wasn’t available last year. She needed this year off too!

I felt a little bit of pressure from well-meaning “others” to step back into the role of newsletter editor for 2011. I chose not to do so, simply because I know what my 2011 is gonna “look like” (to some degree… like many of you it is the part I DON’T know that causes significant stress – grin!). I need a “fallow” year. I’ll be finishing up school soon and will be starting to put an effort into finding that career… that position that helps shape a “better me”. Really this last year my free time was taken up with doing school! Next year? I need my life to become “fallow” in terms of allowing a rest and reprieve from even worthwhile activities and groups of which I am passionate about. I’ll still be an HLAA active member and participant, but my free time I need to be “me time”. I feel undernourished. I refuse to feel guilty.

How about you? Do you feel guilty when you aren’t OVER-involved in important, mission-minded organizations? Do you feel like you have to say “yes” to everything? Do you yearn for a bit of quiet and time to rest your soul, mind, and body?

I came across a poem written by a lady I know from FaceBook. (Like I explained earlier FaceBook is far more than reconnecting with high school classmates). She wrote a beautiful poem that I really felt “fit” the idea of needed and necessary “fallow” time in life. She agreed to let me share it here at Hearing Elmo.

Ocean’s Healing Grace
by Nancy Wilder
a lone figure sits easily on the sand
bare feet playing tag with icy foam;
so small in this vast ocean panorama
she gazes out over the horizon hues.

heart heavy and a mind in turmoil
sand and surf her refuge of choice;
breathing in the strength of nature
an open invitation for healing balm.

dawn has come and turned to morn
gray sky meets water in chilly repose;
pretty escape is not what she requires
peace provides nourishment to heart.

slowly the small figure begins to ease
battered mind gently clears in relief;
absently tiny fingers draw in the sand
as gulls dive for their morning repast.

the ocean’s healing grace envelops
urging an embattled soul to find joy;
life’s small blessings are apt minion
to supply happiness on daily course.

acceptance calls a smile to gentle lips
as she stands, the sun kisses the sky;
twirling gaily she casts away sadness
her heart and mind embrace a new day.

If you are feeling overwhelmed and near burn-out, I challenge you to allow yourself to become “fallow”. Don’t falsely bully yourself into believing this time is wasted. Go find an ocean…

Denise Portis

© 2010 Personal Hearing Loss Journal

Is INVISIBLE good?

Published on by hearingelmo5 Comments
Chloe and Denise at 2010 Fall Family Weekend

A person that I know with invisible challenges (Fibromyalgia, IBS, and Chronic Fatigue) said to me recently, “Denise… you have mostly positive advocacy experiences because you make your invisible disability – visible. That isn’t always possible for other people with invisible problems!”

I thought about that statement for a week. Then I thought about it for another week. I actually thought about it for a third week, which for me? It’s nearly impossible for me to “simply think” on an issue without going ahead and blogging about it! I decided to do a “test”. I would dampen the visibility of my disability and see if I had any problems as a result. If you don’t want an invisible disability to ever become apparent – don’t get an assistance dog. Nothing shouts, “THERE’S SOMETHING DIFFERENT ABOUT YOU” more than having an assistance dog with you. Let’s face it… it’s not the norm to see a dog in a public place. Having a canine partner is not for the faint of heart, for you will have questions, be stopped constantly by admirers, skeptics and the occasional unattended child. Because of my balance problems, having an assistance dog has yielded far more benefits than any negatives. I wasn’t about to leave my assistance dog at home for the sake of a “test” so I had to think of other ways. Thankfully, those who know me well are so accustomed to seeing Chloe with me, she is almost invisible as well.

I have always worn my hair up since acquiring hearing loss. I made the decision early on to make sure my hearing aids could be seen. The decision came as the result of being knocked out of the way in a Sam’s warehouse in 2000. Someone had been trying to get by and I continued to look at the shelves since I couldn’t hear the “excuse me” in such a cavernous place. I think the woman who knocked me down was equally as startled as I, for she certainly had no intent of sending me to the floor. She said, “Why didn’t you move?”

I replied, “I’m deaf”, and watched the color drain out of her face. She helped me up and hurried away. That week I began to wear my hair up AND I opted to purchase brightly colored earmolds for my hearing aids. In 2005, I was implanted with the cochlear implant. It was very natural for me to continue to wear my hair up and to add the CI “bling”. Making an invisible disability – not – has helped me. The only time I’ve had a problem with my CI being so visible is when I would on very rare occasions run into a defensive, belligerent, culturally Deaf person who was vehemently against the technology.

So for my “test” I thought I’d wear my hair down and not have any visible assistive listening devices. I chose to do it on a “long” work day. Shortly after arriving at school I ran into one of my student’s parents. I couldn’t discern any difference in the way we interacted and communicated. I went to the office and made copies for my classes, and checked my folder for any notes from the administrator. My first class seemed to go OK. During discussion time, it can get pretty noisy. It seemed to me students addressed their desk instead of looking up when speaking, but I was very aware I could just be guessing at that. Another student helped me pull the overhead projector screen down and I could tell he was responding to a question with his back to me as he reached to pull it down. Again, I was very aware this was probably just my imagination and… after all what proof did I have that this doesn’t happen on a normal school day?

I was well into the afternoon classes and began to think that this was a poor test since all of my students know I have a hearing loss. I was already “plotting” to venture into a store or restaurant with my hair down for a more accurate test. That may actually BE a better way to test my theory, however I was surprised by a late afternoon comment.

After a requested “repeat”, a student said, “Oh sorry! I forget you have a hearing loss when your hair is down!”

Yes. I realize that my students interact with me quite a bit and are more likely to notice a change in my hair. This meant I needed a new test.

I went to Costco this weekend with my son. He’s 6’3″ and strong enough to assist with all those items we buy in BULK to save money. I deliberately wore my hair down. I hate going to Costco on a Saturday because it is always so much busier. However, I figured for this test… that would be a good thing. I pointed out items and my easy-going, “glad to be of help” son would load them up on the big cart. I had several people stop to admire Chloe and ask questions about her. It seemed pretty standard until my son pointed out…

“You know they only ask how long you’ve been training her because they can’t tell you have a hearing loss, right?”

Ta da! This was the proof I needed, right? Who knows. I did know that my friend with invisible challenges was right about one thing. I do try to make my disability visible and usually it is to my benefit.

I enjoy answering questions about my CI and my assistance dog. People ask great questions for the most part, and most are curious because they know someone who has hearing loss or someone that could use the assistance of a canine partner.

Should everyone with an invisible disability make it visible?

No.

Cochlear implant manufacturers produce the CI’s in a variety of colors… usually HAIR colors. Individuals choose a processor and magnetic coil based on their hair color in order to eliminate the visibility. The idea is to help you keep it “your business” if that is what you desire.

I’ve heard from others with invisible challenges or disabilities who have said:

1. I don’t want anyone feeling sorry for me. If I want someone to know about it, I’ll tell them at an opportune moment.

2. I don’t want my co-workers treating me any differently. It would be terrible if they thought any advancements or promotions I got were the result of special privileges.

3. I don’t want to appear weak. I have bad days but do my best to camouflage them.

4. I don’t want to draw a bull’s eye on my disability, putting me at risk for crime or making me a target.

5. I want people to know who I AM, and not judge me or define me by my disability.

These are legitimate and persuasive arguments. If you have an invisible disability or challenge, it is YOUR CHOICE how open you want to be about it. My heart goes out to those struggling with depression or mental illness. These challenges can be very difficult to disclose. Sometimes invisible challenges carry with them a stigma that can wound and demoralize an individual. Never forget that we are people first. We are NOT our disability or challenge. I chose to look at it as my disability is simply a part of who I am now… a new me. As we mature and/or age (as the two do not always coexist), all of us change. We may choose to color our hair, or take care of wrinkles through the help of a trusted plastic surgeon. Maybe we wear glasses or contact lenses now. Many choose to do what they must to avoid the stigma of an invisible challenge. Those who choose to keep their challenges hidden have the right to do so. I do not judge them and trust my personal choice is treated with the same respect.

Care to comment on why you do or do NOT make your own invisible challenges or disability more visible?

Denise Portis

© 2010 Personal Hearing Loss Journal

We’ll Never Be the Same

Published on by hearingelmo2 Comments

“observe a leaf falling from on high…listen to the sounds it makes as it touches branches on the the way down…then the sound of landing. I didn’t realize until today that I can do that. I cried. Good thing no one was there. 🙂“

A friend of mine penned the above words in her “status message” on Facebook, yesterday. Honestly? When I read the words, goosebumps erupted on my arms and neck and I felt an overwhelming emotion well up in my chest. I sat at my desk and “cried like a baby” if you must know. Deep, wrenching sobs that shook my entire body and caused my assistance dog to lay her head on my knee and look imploring up at me … asking to “help” as best she could.

Why?

Unless you’ve lost something and regained it through surgery, rehab, hard work, and perseverance you could never understand completely. When an individual chooses to be surgically implanted with cochlear bionics, they can only do so after their “natural hearing” has reached a point that other assistive devices provide little help. Many resign themselves to not ever hearing again “this side of Heaven”. To regain that and as an added benefit, the ability to interact and communicate with others, strengthening old relationships or forging new ones, repairing self-confidence and esteem, all “sweeten the deal” and make the decision even more life–changing. For some, aural rehab goes very quickly, while for others that first year can be frustrating and challenging. In the end, we’ll never be the same. We will never take for granted our hearing and the ability to listen to the sounds around us. One becomes a part of a “family” of other folks who are “hearing again” as well. We get it. We understand. We’ll never be the same.

The Internet has changed our world, but there are some unheralded benefits of having the Internet. It has provided a connection for people with disabilities, health concerns, or chronic illness. Support groups and message boards exist for every type of health issue.

Those with the invisible illness/disability of fibromyalgia or chronic fatigue syndrome are connected to others who live with the knowledge that today things might be pretty good – but tomorrow you may be bedridden. Those with chronic, hard-to-explain pain disorders can communicate with others who live the same life and share the burdens and triumphs of living with a disease that WILL NOT squelch their inner spirit.

Those who have a loved one that has survived a traumatic brain injury can find others who “miss the person they once loved” and are “learning to love the person left behind”. They can share successes and set-backs, fashioning relationships with other parents, spouses and loved ones who understand because they LIVE IT.

Individuals who live with mental illness can connect with others who understand the stigma and prejudices. They can connect with others who are SURVIVORS.

People (finally) diagnosed with the new epidemic of Lyme disease can find a community of people who have learned how to talk to their doctors, discuss holistic practices that provide relief, discover medications and lifestyle changes that can make a difference in the number of recurring flares, and how to remain positive and proactive in living with the illness.

I have a cousin in the latter stages of treatment for breast cancer. Her “voice” has changed throughout this process and I can tell by reading her penned words that she has a new fascination, anticipation and appreciation for life. She will never be the same.

I think we are slow to recognize how hardship, tragedy, trials, and adversity can provide the surprising and unexpected benefit of a permanent change in hearts, minds, and bodies. For many of us our very foundation has been rocked and rebuilt. Life is different. Sweeter.

We’ll never be the same.

Denise Portis

© 2010 Personal Hearing Loss Journal