Hearing Loss Association of America

A great little promo about HLAA! It’s a little long, but covers every aspect of “who, what, where, why, and how” of HLAA.

Denise Portis

© 2011 Personal Hearing Loss Journal

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Reflections on National Invisible Illness Awareness Week

According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FASTever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal

10 Year Anniversary of 9-11

Patriotic Cochlear Implant "Bling"

It is hard to believe we’ve seen the 10 Year Anniversary of “9-11” come and go already. It really put it into perspective for me when my 21-year-old daughter relayed an amusing anecdote to me. She had gone to Union Station to pick up “the boyfriend“. They walked around a bit before getting on the METRO and she spied a police car outside with “9-1-1” on the side. Because of the anniversary of 9-11, and a result of what I think those numbers MEAN to someone of her generation, she pointed at the car and said, “Oh look! I guess that is on there to commemorate the 10 year anniversary!”  I think “the boyfriend” was hard pressed not to laugh.

Hers is a generation that grew up without William Shatner and his “Rescue: 9-1-1” television show. Although 9-1-1 was covered in school, for her it left a permanent link to a different meaning other than how to call in the event of an emergency. For her, those 3 numbers meant something far different. She was old enough to understand that the world had changed for those here in the U.S.A., but young enough to experience different kinds of fear, anxiety, and apprehension experienced by parents and their peers.

On 9-11 I was “only” hard-of-hearing at the time. The progressive loss and downward spiral of my own hearing had not left its life-changing mark as yet. However, even with my first hearing aid, I still relied on closed captioning. I think if I had to put my finger on ONE memory of 9-11, it would be being afraid and confused about what was happening because those professionals who did closed captioning were FREAKING OUT. At times, the closed captioning was just gibberish, and there was a great deal more of instantaneous corrections being made for “Live” television. When the first tower came down I remember sitting – quicklySTUNNED.

Ten years later I am a different person. Hopefully, all of us can say we are “different” after a decade of life. Our goal should be to mature, learn, and even blossom. I am completely deaf now, but “hear again” through cochlear implant technology. Who I count as friends are peers who also live with hearing loss, live with invisible disability/illness, or work with those populations. Sometimes we live victoriously and sometimes there are setbacks. I have found a “community”, however, and they have become family and friends to me. I watched a number of specials about 9-11 and still used closed captioning. However, it was with some confidence that I also HEARD the commentary and watched the speeches at various memorials. I am grateful for my cochlear implant and for the privilege of living in America.

We will never forget…

Denise Portis

© 2011 Personal Hearing Loss Journal

30 Things

From Invisible Illness Week

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is:

Invisible if I want it to be, but I wear bling and use a service dog so that it is not.
2. I was diagnosed with it in the year:

1993
3. But I had symptoms since:
I was 6 years old after a car accident.

4. The biggest adjustment I’ve had to make is:
Learning to hear with a cochlear implant and learning how to adjust on days my Meniere’s disease symptoms have me wobbling around with poor balance.

5. Most people assume:
My cochlear implant has “fixed me”.

6. The hardest part about mornings are:
Not being able to hit “snooze” on my alarm clock since that happens to be my service dog, Chloe. When the alarm goes off, she kisses me awake and there is no going back to sleep. The dog is definitely a “morning dog”.

7. My favorite medical TV show is:
Not really a medical show but I do like Dr. Phil. He’s a “reality therapist” and I think everyone who has an invisible illness needs to have a healthy dose of reality!

8. A gadget I couldn’t live without is:
FM Clipboard for classes.

9. The hardest part about nights are:
Trying to ignore the tinnitus that comes roaring into play after removing my cochlear implant.

10. Each day I take __ pills & vitamins. (No comments, please)
1 prescription (blood pressure) and 9 different vitamins – one of which is Manganese. Studies have shown that people with Meniere’s disease may have a Manganese deficiency.

11. Regarding alternative treatments I:
Have tried numerous ones including acupuncture, chiropractor, and vitamins.

12. If I had to choose between an invisible illness or visible I would choose:
Visible – no question. This is why I try to make my invisible illness – VISIBLE.

13. Regarding working and career:
I am proud that I am able to work having made a number of adjustments and having chosen to be partnered with an assistance dog.

14. People would be surprised to know:
That I dread group activities because I don’t hear as well as they think I do.

15. The hardest thing to accept about my new reality has been:
That I must sometimes choose not to do things I once enjoyed because of my symptoms. For example: If there is a movie I wanted to see that is coming out, but the weather is bad and my Meniere’s disease has flared up, I cannot go and have to put it off.

16. Something I never thought I could do with my illness that I did was:
Go back to school and finish my MS.

17. The commercials about my illness:
There are none. I’ve never seen a late-deafened/cochlear implant commercial, nor a commercial about Meniere’s disease.

18. Something I really miss doing since I was diagnosed is:
Listening to music.

19. It was really hard to have to give up:
Friends who couldn’t cope with the new me accompanied by a service dog.

20. A new hobby I have taken up since my diagnosis is:
Blogging/writing

21. If I could have one day of feeling normal again I would:
Go to an amusement park and ride every roller coaster there!

22. My illness has taught me:
That the disability community is live and well and fully utilize the Internet to connect, support, share information and to be proactive.

23. Want to know a secret? One thing people say that gets under my skin is:
“Nevermind”. If you aren’t willing to repeat it for someone who hears differently are you not behaving as if it doesn’t matter to THEM?

24. But I love it when people:
Include me.

25. My favorite motto, scripture, quote that gets me through tough times is:
Helen Keller:  “Blindness separates us from things but deafness separates us from people. “

26. When someone is diagnosed I’d like to tell them:
Email me. Ask questions. I want to help!

27. Something that has surprised me about living with an illness is:
How family members who once knew you “when” are not willing to learn about the new you.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Email me and ask how I was doing.

29. I’m involved with Invisible Illness Week because:
Many illnesses and disabilities are invisible. I want to raise awareness.

30. The fact that you read this list makes me feel:

Appreciative that you care enough to learn more!

Denise Portis

© 2011 Personal Hearing Loss Journal