April 2008 – Hearing Elmo

True Belongings

Published on April 28, 2008April 28, 2008 by hearingelmo1 Comment

There is very little in our lives that we can control. We can make plans and be incredibly organized. In the end, however, this only guarantees the likelihood that we will be prepared for things we’ve predetermined may or may not happen. Planning does not illuminate nor prepare us for things that are impossible to imagine. Robert Burns wrote “To a Mouse”, from which we know the familiar line, “The best-laid plans of mice and men often go awry“.

We do not plan nor prepare for accidents, illnesses, or disabilities. We don’t plan for things to go “awry”. Even when trying to prepare for confrontation with an individual, we cannot fully prepare for every scenario as we cannot accurately anticipate how someone may respond. We do not plan to “get fired from a job we love”, and we do not plan to lose a parent in death, or a child to poor decisions and sin. (I do not plan in advance for Chloe to drop a wet, slobbery duck in the middle of my keyboard attempting to get me to play with her on this wet, rainy day! Play breaks are important to my intelligent assistance dog! If I’m at home working all day, she needs some form of stimulation. I embrace play breaks with wet, slobbery ducks with… umm… enthusiasm?)

I’m a “planner” and someone who happens to be “big on details”. It means that I have developed great organizational skills, having honed some God-given talents to the point that I basically drive my entire family crazy. Someone who has great organizational skills often struggles with control issues as well. I can openly admit that I have “control issues”. I don’t like surprises. Heaven help the person that ever throws a “surprise party” for me. I don’t like them. I’m a planner, and one can’t plan for surprises. Planning for things, and preparing for activities are important to me. The one thing that can suck the air out of my lungs and leave me struggling for breath is a surprise. Have I mentioned yet that I hate surprises?

I never planned to have a hearing loss. I didn’t sit down at the age of twenty-five with a babe on each knee and daydream about being deaf. “I think… in ten years I’ll lose all of my hearing and rely solely on advanced technologies in order to hear and communicate!” We don’t ever plan for loss of any kind. Sure! We all know we WILL experience loss. It’s not a question of “if” we will, rather “when” we will. All types of losses, although expected, cannot be fully anticipated. At some point in time we are going to be sitting in the dirt on our caboose wondering… “What just hit me?”

I am in the process of reading for the third time the book entitled: When the Game is Over It All Goes Back in the Box by John Ortberg. God has used this author in my life a great number of times, and I highly recommend his books. He quotes from Thich Nhat Hanh,’s “I am of the nature” in chapter six.

I am of the nature to grow old. There is no way to escape growing old.

I am of the nature to have ill health. There is no way to escape ill health.

I am of the nature to die. There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.

The only thing we will ever really own are our actions triggered by personal choices. I have to smile when I hear someone say, “I made an intelligent, informed choice!” We cannot ever truly be completely informed of all of the facts. Life is unkind in that regard. We can make decisions based on things we know, but what we do not know is far more likely to affect us. What we fail to anticipate tends to be the driving force behind change. Who I am today was shaped by what I was not prepared for; I am the result of a Master’s plan and not my own. I am the consequence of my actions, which are my only true belongings.

I try to begin each day by waving a white flag of surrender. I do not have access to the Master Plan. I am not able to even peek over His shoulder to see what my day holds. But I do, however, have access to the “Master”. My daily surrender is to self… I do not have control over my life. But I can actively choose to trust the “Master” and His plan for me. (One of my earliest posts was about having a blueprint for my life).

It gives me a great deal of satisfaction to know I have true belongings. I own my choices and am responsible for my actions. To find true peace, we must trust the Master to the “plan”.

At the request of my husband, I watched the movie “Master and Commander”, starring Russel Crowe. He had to twist my arm to see it as “war films” are not what I normally choose to watch in order to unwind! I actually learned a lot from the movie, but likely not the historical war highlights my husband had hoped. One particularly “educating” moment was when Captain Jack Aubrey, said, “England is under threat of invasion, and though we be on the far side of the world, this ship is our home. This ship *is* England.“

I had one of those incredible moments in time where everything about my life sort of “snapped” into focus. My testimony is a reflection of my Savior… my Master. It gives me great comfort to know that Heaven – “on the far side of the world” – is my Home. But for now, this life… this “ship” is my home. I live each day faced with decisions about how I will live with my disability. Reacting” is subconscious, but it births the conscious decision to “act”. Those actions are my true belongings.

We all have true belongings. Those of us who have “control issues”, need to learn to relinquish our “plan” and focus on our actions TODAY.

Denise Portis
©2008 Hearing Loss Diary

Kiki’s friend… Denise’s assistance dog

Published on April 18, 2008 by hearingelmo1 Comment

We are blessed with 3 cats. I say “blessed”, because if you’ve ever had a cat… one that was a real pet and not the “mouse police” for the barn, you know that cats have their own endearing ways and are a blessing.

I don’t know that families ever own indoor cats, as really indoor cats own families. All 3 of our cats have completely different personalities. Kiki, (shown above with Chloe), is rather fond of my assistance dog. You’ll note that Kiki gets the comfy chair and Chloe? Well Chloe knows her place. Kiki and Chloe have a unique relationship. Kiki is a very smart cat. She knows that Chloe is mine, and that I’m her “pack leader”. I know this because Kiki will come and “tell on” Chloe, and also let’s Chloe know that although she may be a working dog… Kiki will never, EVER… be caught working.

Wednesday I went out back to mow the lawn. I walked out the back door, across my deck, commanded Chloe to stay in a “down”, walked down the steps and over to the shed, drug the lawn mower out… started it and mowed the backyard. These details are important. It took me 30 minutes to mow the backyard, and Chloe watched from the top of the steps the entire time. She’s not crazy about the noise of the lawnmower, but she trusts me and she obeys. She was very glad to have me come back up the steps to her. She seemed a little extra excited to see me, and it didn’t take me long to discover why. It seems Kiki darted out the door with Chloe and I. She couldn’t get down the steps because Chloe was in the way, and the lawnmower is very noisy. So she lay down right next to Chloe in the morning sun and “made biscuits”. She purred and slept, and kneaded that 30 minutes away. Chloe obediently stayed in a down. The hair on her back was sticking up ever which way, but she obeyed ME… and tolerated her friend’s massage.

It struck me that the two have actually become friends. Chloe is my alarm clock and wakes me up when she hears my alarm. First thing we do is run Chloe outside to “hurry up”. The cats have their own room. (Don’t think very hard why the cats think they own the family and not the other way around!). I’ve been noticing that when the cats are let out of their room in the morning, Kiki comes over to actually greet Chloe. Chloe has learned not to sniff Kiki’s umm… Kiki’s… Chloe has learned not to sniff Kiki. However, Chloe has also learned that Kiki will tolerate nose sniffing and some playful face licks. Kiki will curl around Chloe’s legs and rub up against her purring all the while. They are buddies. “Who’d have thunk?”

One of the reason’s I love Fidos For Freedom, is that the puppy raisers are encouraged to have all kinds of pets. The assistance dogs have really “seen it all”, by the time they get to their partner’s home. However… I don’t think Chloe’s puppy raiser had rabbits.

Denise Portis
©2008 Hearing Loss Diary

Why I Don’t Use Sign to Communicate

Published on April 15, 2008 by hearingelmo4 Comments

A hearing loss is often referred to as an invisible disability. Even though I wear “bling” on my cochlear implant, and have a bright red/orange ear mold on the hearing aid in my other ear, one can’t look at me and tell I have a hearing loss.

The reality is, I’m deaf. But… I’m not culturally Deaf. (The culturally Deaf usually identify themselves with a capital “D” for Deaf). Without my cochlear implant, I can hear less than 5% of consonants from only certain individuals. I could go into the nitty gritty details of what my audiogram shows without my implant, but as it’s almost “Greek” to me, I’m sure it would be “Greek” to you.

I needed an assistance dog for a variety of reasons. Although I was warned by my trainers at Fidos For Freedom, I was unprepared for how visible Chloe made my hearing loss. It’s not every day you see someone come into a store, post office, or restaurant with an assistance animal that is very obviously not blind. Chloe makes my implant bling virtually non-existent in the way she so quickly brings to attention the fact that I have a hearing loss!

It’s funny to see people creep closer to read her vest, and then look at me quizzically until they spot the cochlear implant and/or hearing aid.

At Costco this past weekend, I had several strange encounters. Not “strange” like the “X-Files”, but strange in that it was really weird how different people responded to my hearing loss.

The folks at Costco know me well… they should as I spend a small fortune there each month! They know Chloe even better, and sit on their hands so they don’t reach out to pet her wiggly hello. But the customers are all usually “new” to seeing this bright red hound come into the store with her “deaf” partner.

I had a man/wife couple tip-toe up to me and enunciated very clearly (and with extra exaggeration to the point I almost laughed),

“Doooezzzzzz yourrrr dooooog….. hearrrrr…. fooor…. youuuuu?”

I smiled and said, “She does indeed do that! She has the best ears! She helps me with my balance on rainy days too!”

After they picked their lower jaw up off the floor, they talked to me at length about what Chloe does for me and how I came to be matched with such a wonderful companion. I noticed after about 7 or 8 minutes, that the husband was bi-laterally fitted with hearing aids! No wonder they were so curious… and he talked as clearly as I do with no hint of sign language, etc. (I say that carefully, as I do not mean to infer that those culturally Deaf cannot speak clearly… some do so amazingly well… and it’s not a language that is their own! Many Deaf are able to speak well! But those who do… often have a “Deaf accent” for lack of a better way to explain it. Hey! If I spoke a 2nd language, I’d have an “English” accent for sure!) We parted ways after I deposited pamphlets and brochures about Fidos into their eager hands.

I also ran into a fellow Fidos For Freedom volunteer! Small world!

I rounded the corner of the dairy section… and wouldn’t ya know? I ran into a group of teenage girls. They squealed and came rushing over to Chloe. (I wasn’t about to think they were rushing ME!)

One of the girls… likely around 16-years-old or so, began to painstakingly introduce herself to me in sign. “Hi. My name C-r-y-s-t-a-l”. (This took her about 5 minutes to complete). I patiently waited, and then dropped Chloe’s leash, stepped on it, and used both my hands to sign, “Nice meet (you!) Name-mine, D-e-n-i-s-e, This (pointing to Chloe) ” ” hearing-dog, mine. Name C-h-l-o-e”

They squealed and excitedly tried to figure out what I said for about 30 seconds. Then they got nervous. So I put them out of their misery, and voiced in English:

“Actually, I don’t use sign language to communicate. I am “oral” and use English just like you! My name is Denise and this is my hearing dog, Chloe.”

The sweet young lady who had been brave enough to sign blurted out, “Oh! Well WHY? If you can sign, why would you speak English?”

$Chloe alerting to the timer in the classroom so I know class is \$ As a teacher of ASL (American Sign Language) I had one of those moments… the kind where you hear yourself speaking in a lecture that you did and it echoes in your mind during the moment it actually hits you! Of the 34 million Americans with hearing loss, less than 2% sign. Yet, hearing loss is almost always equated with sign language.

I took a few minutes to explain that everyone in my life has normal hearing, and everyone uses oral English. My daughter’s boyfriend, Mark, has normal hearing. (How can I get to know HIM if I can’t speak English and and use my bionics to hear his responses?) I am the only person with hearing loss in my family, the only one in my church, and the only one at work. I know and teach sign language, because I made a very dear friend in college who was Deaf. The college just happened to have a “College of Deaf studies” as well. I learned sign language to talk to her, I later used it in my church to serve in a Deaf ministry… and then I lost my hearing. If I only signed and didn’t choose a cochlear implant, hearing aids, and reading lips to communicate… I would not have very many people to talk too. Sure… they can learn sign language, but I’ve never been convinced that my world would do anything other than become a lot smaller. (Besides… my husband is truly manually dyslexic! He’s tried to learn for years!)

I teach sign language because I do love the Deaf. I have numerous Deaf friends still! I hope to instill a passion for the language in young people who will go out and make a difference to someone who is Deaf. They may be interpreters or teachers of the Deaf, or… they may only have a one-time opportunity to be a blessing to a Deaf person. I love sign language! It’s beautiful, and many times “says” what spoken word cannot. I “sing” in sign… (I am after all – deaf! Truly, and fully “tone deaf”!)

I realized I had begun to ramble as I saw the girls’ eyes glaze over. TMI!

I know sign language, and can teach it as well. I don’t use sign language to communicate 98% of the time. (Likely, one of the reasons my receptive skills are so poor).

Having Chloe with me 24/7 is like putting a spot light on my disability. And… I’m OK with that! I love to talk about hearing loss. I love to talk about assistance dogs! Heck! I love to talk!

Denise Portis
©2008 Hearing Loss Diary

What HLAA Means to Me… “Now”

Published on April 4, 2008April 5, 2008 by hearingelmo6 Comments

Many of my regular “readers” have asked me to post my thoughts on the Hearing Loss Association of America, and how I “feel” about the organization now that a bit of the heartache is in my “past”.

It has been difficult to sort through my personal feelings, in order to look at things objectively. Frankly, I’ve given up trying to seek an objective viewpoint as the way the Board of Trustees behaved this past Fall, DID affect me personally. I realize that I cannot pretend it did not hurt me, when in reality it did.

So as I write, I hope you’ll allow me some leeway to sort through how I feel personally as well.

I’ll never forget what HLAA’s founder, Rocky Stone, told me at the Atlanta convention in 2003. “Terry’s biggest obstacle will be the board. It has always been the biggest obstacle to any of the Executive Directors… including myself!” The last convention I saw him at was the Omaha convention. He always cared about how I felt, and how Terry was dealing with the board. Rocky is in Heaven now, and I miss seeing him at the conventions!

Many local chapter leaders of HLAA have discussed and analyzed why it is that HLAA does not grow. I have always believed that part of the reason it does not grow, is that hearing loss is an invisible disability. Those whose seek support and information, are usually those whose hearing loss has reached the level that it directly affects their communication and therefore, their lives. The disability has reached the point that it is really no longer invisible. It is difficult to hide. I had always hoped that HLAA would begin to steer it’s efforts towards “hearing conservation” and in doing so garner the interest and attention of the nation and it’s professionals.

HLAA’s median age is not that of a younger generation. Even though there are record numbers of young people with hearing loss as a result of iPods and music concerts, even though thousands of young soldiers are returning from Iraq with hearing loss, HLAA’s membership still consists of those who are older. I do not believe for a moment that those past the age of 50 cannot recruit, mobilize and educate the press, professionals, and politicians about hearing loss. I believe they can… and yet it is not happening.

Terry “inherited” a great number of problems when he became the Exec. Dir. of HLAA. Many were problems that he and I should have investigated prior to uprooting our family and heading to DC. In MANY ways, I’m glad we did not know what we know now. Our home is now in DC, and we have made a life here with our family. As the Executive Director, Terry knew that he would serve at the “pleasure of the board”. He also knew that even if escalating problems were the result of past failures and mistakes, the “buck stopped” with him as he was the current Executive Director.

I think Terry stuck it out as long as he did because bottom line, there is not a group of people he cares about more than those with hearing loss. He began to love folks with hearing loss because of me… his love grew and his determination to continue trying to make a difference happened because he met many of YOU.

Being asked to resign, is not uncommon for Executive Directors… especially those who work for a non-profit organization. As Terry had been living under a great deal of stress due to dishonest accusations for over a year, he and I had already discussed that he needed to seek a new position as the stress was no longer worth the satisfaction of working for HLAA.

The board “encouraged” him to give his resignation and told him to “take care of his family”… take his time looking for another job, etc. Warm fuzzy feelings, ya-da, ya-da. (grin) Within two weeks the president had called Terry and retracted all that the board had told him during the November meeting… a meeting where he could have had the opportunity to speak the truth about what was really going on with documented proof to back him up. He was told that his last day needed to be mid-January. As we already knew Terry’s health would not survive staying in non-profit leadership, we did our best to encourage our kids (as they were scared to death) and begin looking for “something new” for Terry’s career.

Do I still love HLAA? Of course I do! HLAA is the ONLY national consumer organization whose mission is to serve those with hearing loss through information, education, advocacy and support. The fact that HLAA’s board is “dangerous” and does indeed effect the overall health of the organization, does not change the fact that “good” is still being done across the country through local chapters and state organizations. However, board members are the key to successful development efforts. They use their circles of influence to connect development staff with funding sources.

Why do changes need to be made on the board of HLAA? If you read and research, non-profits who are really making an impact have boards whose members are experienced and influential. A good local chapter leader does not necessarily make a good national board member. It’s not meant to sound snobby – grin – but the non-profits who are really making a difference and whose cause is on the national radar, are made up of board members who have experience serving on boards… people who are presidents, vice-presidents, senior directors, and chairman.

The CEO and development staff do have an important and critical role in fund development. However, fund development begins and ends with the board of trustees. The CEO and staff need the support of the board. Boards who overreact to complaints they hear instead of supporting and giving the benefit of the doubt to the staff, ultimately affect the trust the staff has placed in them.

Healthy boards have a shared strategy and clear vision for achieving the organization’s mission. Committees are tasked with elements of that strategy, and budgeting occurs around it. Boards stop working well when new ideas and initiatives… “pet projects”… are constantly brought up as “recommendations”. Frequently, especially with small staffs, shell-shocked employees sit in the back of the room and wonder where the time and money will come from to do yet one more “pet project”.

It is also unhealthy for the majority of the board to be picked by the board, instead of voted on by the members. Yet, HLAA has a long history of members who fail to nominate and vote on national board members. It is not unheard of for a “voted in” board member to have less than 15 votes! I’ve never completely understood why the members of HLAA fail to take this task seriously. Really, the board votes on the nominations, and majority of the board members themselves because the membership has failed in this task. Stagnate and ineffective boards tend to nominate “like-minded” people, however!

So as a member of HLAA I have no confidence in the board of trustees. I love and appreciate the HLAA national staff, and likely understand better than most members what the staff does and deals with on a daily basis. Each staff member does the work of 3 or 4 different professional positions, and are paid far less than what the DC area currently pays for valued staff. Most who work there do so because they have a personal interest… they have hearing loss themselves. The board of trustees more often gets in the way of their work, than they do in making it possible for them to do their jobs with their support.

I will always love and support HLAA both financially and with my time. They have made a difference in my life, and I want to “give back” by making a difference in people living in my community who have hearing loss.

I want HLAA to succeed, to grow, and thrive. I do believe, however, that this will only happen if the board of trustees is “disbanded” and then “put back together” by professionals and experienced BOT. Right now, I think the biggest weakness in the organization which is HLAA, is the board.

My family and I are doing great! I received over 470 emails after Terry’s resignation, from members and friends that I have made over the years. Terry has a job that he loves, and I’ve every hope that I can talk my kids into supporting HLAA again one day. I appreciate the love and support that you’ve shown to us during this time!

It is important to me that my hearing teenagers love and support HLAA. Why? Hearing loss is not going away. People like myself, needing support of an organization like HLAA, need the support of the entire family. I’m so proud that my own local chapter has so many “hearing family members” attend with the one they love with hearing loss. People with normal hearing SHOULD be concerned about hearing loss in our country, and knowing and loving someone who already lives with it tends to make one support the cause.

The Walk4Hearing is a wonderful annual event. Entire families, staffs, churches, and schools unite together to walk… for hearing. I’ve never felt anything quite as wonderful as the feeling I have experienced walking with so many for a cause so worthy!

So “what does HLAA mean to me now?” I love the organization, and I want to see it grow. Just as each of YOU try to make an immediate difference in your communities, at work, and at your churches… I too try to advance the cause of hearing loss awareness and to advocate in a positive way.

Who I am has not changed. What I am passionate about is not different now. I will always have a hearing loss, and I will always care for those who share this acquired disability with me.

Thank you for your love and support!