It’s the little things that make a difference when you are “hearing again”.
This morning we had to put my daughter’s cat, Mandie to sleep. Kyersten is a junior at Liberty University in Lynchburg, VA. She doesn’t have a car and yet through friends was able to get home. (We currently only have one car and couldn’t do it).
It was a series of phone calls – some in a panic, to get all the plans just right so that she could get home in time. The cat could not wait. I’m just amazed at what a difference being able to hear on the phone means even in the midst of a small family crisis.
Not only could I hear to communicate plans, etc., but when we went to the vet I could hear whispered voices as the technicians tried to remain sensitive to the reason we were there. WHISPERED VOICES.
I am so thankful for cochlear implant technology and for being able to “hear again”. I’m certain that if I had not been able to have CI surgery, we would have still found a way through family crisis without my hearing. However… it just makes the biggest difference. You just really can’t imagine what it means unless you’ve lost your hearing and regained it through cochlear implants.
The bathroom downstairs is decorated with cats. Lots of them. (Yes I know… decorating a bathroom with “cat stuff” is unusual, but it is what my cat-loving children picked out!). The above picture hangs in the bathroom near the sink. As a result, I’ve given a lot of thought to this painting!
Who IS that?
This morning I was getting ready and caught sight of myself in the mirror. I had already fixed my hair, put on my make-up and “made pretty”. Yet, I was taken by surprise at what I saw in my reflection.
It’s raining today. We really need it too. Yet… I really dread rainy days. I usually know it’s raining even before I roll out of bed in the morning. I get this “sense” that all is not right. Weather systems do a number on my balance and I walk like a drunken sailor if bad weather prevails for more than a day or two. Looking at my reflection I could see IT on my face. Fatigue, dread, worry, and acceptance of the unavoidable. There it was in the reflection in the mirror. You would have to really know me to notice. Something in the eyes… tension in the facial muscles. Since I know myself pretty well (grin)… I could spot it right away.
Am I Defined or REFINED by Acquired Disability
The people I find most difficult to be around are those who “knew me when”. Folks who grew up with me – my parents, siblings, and family members – have a hard time being around me I think. I’m not who I was. My family are spread out all over the United States. We are currently in four different states, and unfortunately this necessitates rather infrequent visits. (Thank goodness for Facebook, email and SKYPE so that we can at least touch base virtually). My immediate family (husband and children) transitioned along with me as my life gradually changed from “what was” to “what is”. It seemed less like CHANGE to them, for life changes gradually grew who they were as well. However, when you haven’t seen someone in a very long time and then have the opportunity to be with them, changes are not only obvious they can be surprising!
I’ll never forget shortly after receiving my bionics and cochlear implant, I was visiting my sister while I was in Texas on business. I reached up to remove my CI to hand it to her so she could look at it because she seemed a trifle intimidated by it. She screeched, and said, “No, NO! Don’t take it off!” I got the impression she thought I was going to remove it from my brain or something! As if removing it meant you could peer down into the cavity of my skull! Her grimace and horror at what I was trying to do really threw me off! At first I was REALLY hurt (I’ll just be honest here). I couldn’t believe that in something so life changing for ME, that someone this close to me had done so little investigation themselves about what my having a cochlear implant would mean. But honestly? Researching and finding out more information about the CI that would change MY life is not HER job. I should continue to be the best DENISE I can be, using whatever means necessary to “do a good job” at that. It isn’t her job to completely understand what that transition will look like nor to completely understand the technologies I use to cope and HOPE.
Adaptation is “A change by which an organism or species becomes better suited to its environment” . My family and I have made adaptations. I don’t believe my disability DEFINES me, but it’s ridiculous to pretend it isn’t part of who I am now. I do believe it REFINES me. This isn’t a NEGATIVE thing. I’m still me… but a BETTER me because of the things I’ve adapted to as the result of having an acquired disability.
But sometimes… like this morning… I do a double-take when I see IT in the reflection of the mirror. I suppose it’s because there are days – thankfully few and far between – where my hearing loss and Meniere’s disease get the best of me. It would be so easy to just turn around and crawl back into bed. Heck! Honestly? There are days that would be the WISEST thing to do! I think of the people I know who are living with Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, MS, HIV, or cancer. Invisible disabilities and chronic illness that, unless you knew the background and testimony of the person standing in front of you, one would never know the courage it takes to live life each and every day with some semblance of normalcy.
Standing and looking in the mirror – you may notice a little bit of IT peeking out at you from time to time. I walked away from the mirror this morning totally OK with the fact that the stress of my life was showing a bit in my reflection. I don’t have to let how I FEEL influence the way I BEHAVE. Frankly? I think every person has days they have to try a little harder to PUT ON A HAPPY FACE. They don’t have to be people who live with invisible disabilities. It’s normal to have bad days. And normal? Well… that’s just exactly how I want to be.
I’ll leave you with a super song that I discovered long ago when that animated movie “Mulan” first came out in 1998. It wasn’t until I saw the lyrics for the first time that it was really driven home – the truths of reflection for every woman, every person, every individual living with invisible disabilities or chronic disease. When will my reflection show, who I am inside?
Truthfully it shows every single day. You just have to look harder on some days than on others. I don’t ever stop being ME though. I usually walk away from the mirror pretty satisfied with the evidence of things not seen on the surface. May we all be great reflections of who we are INSIDE…
“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”(Elisabeth Kubler-Ross)
“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.
To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.
I’m safe.
It is cooler.
We walk faster.
No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.
Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE
I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.
So what do you do?
Give up? Try to get a refund? Sue?
Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.
Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:
1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.
2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).
3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.
4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)
5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.
6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).
7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.
8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:
A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?
B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!
C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).
D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.
E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!
F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.
There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:
A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!
B. Would you quit mumbling and speak slower please? Gee whilackers!
C. HUH?
D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).
E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).
F. STOP STEPPING ON MY DOG!
Preparation = Ownership
In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?
It’s so nice to have guest writers from time to time if not for any other reason, than to give you a break from me! Today I am posting a well-written and thought-provoking comment from Dr. M.E. Osborne, whom I share a “community” with at the Cochlear Community. Feel free to leave your comments (as always), and if you like I can forward personal messages to her via email.
Dr. M. E. Osborne
Denise : We are all thankful you are a member of the Cochlear Community. You bring us different, clear viewpoints and concepts to think about.
Your description of the grocery store incident put me there as if I had been a butterfly on the top shelf. Some thoughts flew instantly to mind, and others developed as I thought about the incident throughout the day.
FIRST: How sorry I am for the little boy; he is being taught prejudices. If a parent actively, consciously imparts a narrow connotation of “normal” – for 7 years – you know there are other interrelationship terms that are also skewed.
SECOND: I take it she also was hearing impaired and was referring to “normal” in the “deaf community” through her experiences and the results of the choices she made. By 7 years of age a child’s basic personality and framework of values are 80% set. But the input of details that determine our ability to make our own choices is only about 30% set [Kaugher, 2004] That little boy is on the cusp of making important choices for himself.
His language development is still open. Unless his parents permit his examination, it will be another 11 or 14 years [depending on “legal age for self-care” in the state where he is then living]. Those of us in the Cochlear Community each know at least three people who had no hearing until Cochlear Implant[s] happened. That might be case for that little boy. He would be eligible for speech/ auditory/ aural/ oral services. He might come to speak as clearly as a couple of Cochlear Volunteers. IF THE MOTHER’S ATTITUDE PREVAILS, HE WILL NOT HAVE THAT CHANCE EARLY IN HIS LIFE. HOW TRAGIC.
THIRD: You were SO much more polite than I would have been. I would have flown after her to “ask” her, HOW DARE SHE MAKE THAT IMPORTANT CHOICE FOR HIM! No matter how I had to communicate – sign with the ASL I remember, spell words one letter at a time, or write it. She would understand my intense furor with her making life choices for another person.
She is exactly the type of parent who drives people in my chosen area of expertise out of our minds. She is afraid of technology and teaching that prejudice to a child, not describing options.
[For those of my Cochlear Cousins who do not know, one of my doctoral concentration areas is Special Education Administration. The program I completed was heavy in being an advocate for the client – especially for youngsters.]
Then I would have emphatically flown off into “WHAT IS ‘NORMAL’ IS SITUATIONAL.” The two of them “out in the usual world in a grocery store, using ASL to communicate,” was not normal right then – unless everyone in the store at the same time was using ASL
“Normal” implies behaviors, clothing, manners, foods, rules, customs etc. that are highly predominant among a group of people.
THERE IS NO ONE NORMAL FOR EVERYWHERE, ANYTIME. I have lived both as a citizen and as a military member, literally around the world; traveled extensively on four continents, and have been privileged to be part of many social communities. Communities may be defined internally – people who have chosen to be self-segregated from interaction/ participation with those outside. Communities may be people forced to separate, by customs, laws, etc. Communities may be segregated from each other on some binding reason the members consider enough – an example is the “upstate homies” and the “downstate homies” in a juvenile prison.
While teaching in a southern city, I was accepted by the Deaf Community as one of them because I tutored/ taught the children. The same reason was in force in a northern city as I taught three young people for 6 years. Their three “accompanying interpreters” in public school, agreed to provide a concentrated ASL class for the 24 teachers involved.
What are perceived as communities, sometimes must merge, not just function, but each individual interact successfully. Consider the situation: Nancie was one of the school interpreters; Black; attending an active Catholic church with an almost total Black congregation, and the congregation kept many traditions of Black, southern churches – the Mother of the Church and the Sodality Members wore white, all other members wore navy blue, to any church service. Nancie’s mother passed away. The three students, the two other interpreters, all 24 teachers, students close to the signing student’s, & the students’ families, piled into a school bus at the school located on the fringes of the city, to ride deep into the city, down to the river. In the melee of people were Black, European, Hispanic, Jews, Catholics, Baptists, Methodists, hearing, partial hearing, and totally deaf. We were greeted and welcomed by the Priest and the Mother of the Church. You bet we had it together … because it meant something to Nancie, and us. We sat behind the Deaf Community – one of the two interpreters signed in the front – the other about in the middle, both up high enough to be seen. All teachers, families, etc were in navy blue dresses or suits. The Catholics spread out through the group to help the others get through a completely sung, old fashioned, high Mass. [For those of you who wonder, the cemetery was a short drive to the north. Yes, our bright yellow school bus was in it.]
Imagine the chaos, the pathos, the inflicted insults and injury had every individual clung only to what made them comfortable.
Currently I am in the USA, living in a SC rural area near an average small city, 50K people. Permit me to list some things that might not be the norm, the usual, in public situations:
ASL, or for that matter, any language other than English;
an assistance dog, lemur, ferret, or tree monkey;
a lady who covers the left side of her head, but puts a finger in her right ear when eight F-16s go fly low, landing/ taking off. [Guess who with a BAHA]
people using heavy, metal, leather braces and cup crutches;
families of 21 children;
people wearing clothing that openly indicates their choice of religion/ religious practices – Hutterite plain clothes, burqa, nuns in habits, yarmulke/ Kippah;
people with little screens on their head attached to a weird looking hearing thingy – you can see one on Rush Limbaugh.
Some things that here are the norm:
No matter the time of day, lots and lots of men and women in military uniforms for the Air Force or Army [NOT Navy or Marines] Shaw AFBase is in Sumter, Ft. Jackson Training facility is in Columbia, and the 3rd Army is coming to Sumter piece by piece
Many large, off road capable, pick-ups with a full gun rack inside the back window of the cab. Often there is not a need to lock the truck, there are a couple sets of large barking teeth on guard
After people have been home from medical, banking, other “white-collar” jobs, welding shops, construction, several groups of motorcycle riders gather – Legion Riders, Sons of God, Hyundai Hots – each in a different huge, parking lot
Men and women who proudly have Concealed Weapons Permits, carry their handgun, and love to take them out [unload all] and compare. [Me too]
NONE OF THE LAST FOUR ITEMS WOULD BE “NORMAL” IN DOWNTOWN CHICAGO AND ZIP CODE 60625.
Thank Our Lord for people in the Cochlear Community who
chose to create and maintain an open, welcoming community
accept input from professionals, family, and friends in making decisions; and also welcome the prayers of us who offer them
respect and embrace the decisions community members make
have the personal courage – sometimes at the cost of pride – to ask for support from others who also live with Cochlear technology
encourage us who are slugging our way through our CI/Baha journey by sharing in both disappointments and joys
are ready to show their own personal hearing technology to people – recently I listened to a campaign manager explain that a car magnet was worth 300 votes for a political candidate – so I was thinking, can we assume every CI magnet explained will bring 300 more people to hearing ? Maybe the person spoken to, maybe someone they talk to ?
belong to SEVERAL social communities and move comfortably from one to another – even if we make a mistake now and then – such as when I heard my name called in exasperation in Eastern Star meeting, and snapped to my feet, smartly made a Navy military about face, to attention, and said sharply, “Ma’am”. Wrong community. The response should have been to stand graciously, make a small bow, and say respectfully, “Worthy Matron.”
are not afraid to risk making new friendships, that begin in the ether of the Internet, and because of geography, might never move to in-person friendships.
Recently Chloe and I were at our neighborhood grocery store. I rounded a corner and came face-to-face with a young boy approximately 6-years-old. His eyes grew wide as saucers and his mouth dropped open. Curious, I looked around quickly to make sure his astonishment was at my own appearance and not on someone in my vicinity. Since it was just Chloe and I… I surmised he was surprised at ME. He looked at Chloe carefully and read her vest. I could see his little mouth sounding out the words on her vest. I could “see the light bulb go on” for him about what Chloe does as her job. He took a step to the side and leaned so as to better see the side of my head. My smile let him know I was OK with that – I even turned my head so he could better see the cochlear implant. His answering smile seemed thrilled to understand as the result of his attentive perusal. I wasn’t prepared for what happened next. So unprepared was I, my own mouth dropped open in surprise!
A lady who looked like she’d lost a 7-year-old boy came around the corner in a near trot. She stopped dead in her tracks and looked with relief on the boy and waved at him to “get over here“. He shook his head “no” and signed, “Look (towards me)! Cochlear Implant receive me, able dog own can/able? yes?” His mother practically interrupted his sign and shook her head NO.
She signed back, “Dog want – cochlear implant want not. Appear normal important!” She took him by the hand and drug him away to the cereal isle. I stood there for a few minutes digesting what I had over – erm – HEARD. Obviously, she didn’t realize I am fluent in ASL. I stood there … in all my NOT NORMAL glory… not fitting in… while Chloe sat and stared at a box of Uncle Ben’s rice that happened to be nose-level.
I was speechless! For those of you who know me – well that is a RARE THING – THAT! I finished my shopping in a near-daze.
Not Normal
I wear “bling” on my cochlear implant and have a bright, red ear mold on the hearing aid in the opposite ear. I have an assistance dog who alerts me to direction, sounds I miss, and helps me with balance related tasks. You can look at me and guess pretty quickly there isn’t a lot NORMAL about me. But that isn’t because I have a hearing loss and balance problems. Plenty of people wear cochlear implants or hearing aids. Plenty of people have balance problems. I believe my not being “normal looking” lies in the fact that I make sure my invisible disabilities – AREN’T. There are numerous reasons for that… likely best left for another post. It is in my best interest to be visible. It keeps me from getting injured – although it doesn’t guarantee that.
Not everyone with hearing loss chooses to be as visible with bionics or assistive listening devices and technology. Not everyone with Meniere’s disease is partnered with an assistance dog. Yet this works FOR ME. I’m happy, confident and independent. Isn’t that what every adult wants, after all? Sure – like everyone I have things I am dependent upon. My faith – the love of my family – connections with others. However, what I choose to use in order to live my life independent of the help of others is my desire. I’ve taken steps that I felt were necessary to ensure that independence.
A “Brag” on the Hearing Loss Crowd
Can I just brag for a minute? Do you know that I believe people with hearing loss tend to be more accepting and understanding about differences than any other group? I am MOST at home in a crowd of people who all have hearing loss yet are extremely different.
Some have assistance dogs
some “sport” various CI’s represented by all three manufacturers of cochlear implants
some have vision loss as well
some have hearing aids
some wear neck loops and are using assistive devices
some use sign language
some carry notebooks and READ and WRITE messages…
Yet I am at home among this group. I was reminded of how at home I feel after enjoying the numerous pictures taken by friends who were able to attend the recent Hearing Loss Association of America convention in Milwaukee. Everyone “fits in” at these conventions. It’s much like a family reunion. I don’t agree with everything HLAA does, nor do I believe they always seek to fulfill their original mission. But one thing HLAA does very well is – COMMUNITY. Through forums, live chats, national conventions, state conferences, local support groups, and the Walk4Hearing, HLAA provides community to an every-growing population of people living with hearing loss. Being a part of this community encourages people to do more than live with hearing loss. This community encourages LIVING WELL with hearing loss. I think we all want an abundant life!
William Mather Lewis: The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber.
Socrates: Living well and beautifully and justly are all one thing.
Kyersten standing in front of her new dorm at Liberty University.
This past weekend my husband, firstborn and I headed to “Summer Orientation” at the college my daughter is transferring to this fall. She will be transferring in as a junior and we came to complete the remainder of her check-in requirements and participate in some on-campus meetings.
I’ve been deliberately and methodically choosing not to think about this fall and the impending separation from my firstborn. I’ve always been pretty good at that and it keeps me from perseverating about unpleasant events. However, attending meetings about “how to let go” and how to encourage independence, forces the issue to the front of my mind.
Because of the forced concentration on this coming fall, I came to a startling discovery. I’m actually going to be OK! Kyersten is confident and excited. She received fantastic scholarships and is lined up for Work Study. One of Kyersten’s roommates is a young lady who graduated high school with her. Elise will be transferring in as a junior as well. I have easy access to email, SKYPE, Facebook, cell phone, and texting. I may shed a few tears after dropping her off this fall, but truthfully I am more excited than devastated about our family beginning a new chapter. We’ve prepared for this and we are ready. I have faith that God will keep her in the palm of His hand. I can let go – and let God.
Kyersten overlooking her "new city", Lynchburg, VA
I’m not as good at that about all things, however. Some things I find it more difficult to… “let God”?
1. Finances: My husband works full-time and also works part-time as an adjunct professor. I work “very” part-time as a teacher at a private school. I currently only work one day a week, and only during the school year. I will not be finished with my Master’s degree until the end of this year, and even then I will probably have to wait until the following school year to work a truly “part-time” schedule. This means that things are tight financially. Really tight! I try not to complain or worry because I know so many who are unemployed or struggling with more difficult financial issues than we are. Our car needs fixed. We have debt. It’s really hard for me to release some of these worries to God. I want to “fix” things… stay in control. I believe God equips us to make decisions to work through financial problems, but at some point you have to have faith too! I struggle with having that faith…
2. Hearing: I am truly blessed to have bionic hearing and experience daily the miracle of “hearing again”. Each morning when I slip my coil magnet into place, I am reminded of the miracle of hearing again. A confession? I always fear “how long will this last”. Perhaps it’s because I experienced profound deafness for a couple of years prior to implantation. I know what it means to not be able to hear and communicate well. It had such a devastating effect, it left invisible scars on my heart and mind. I am implanted with the “most reliable” cochlear implant on the market. Yet because of FEAR, I always get a hitch in my breath right before I connect the magnet each morning. I have trouble letting go of this fear… and letting God give me the confidence that He is in control.
Do you have trouble letting go – and letting God? I believe it is because there is a small part of us that wants to control our own destiny. In some ways, if we are the only ones in charge of our destiny then we are the only one responsible for the outcome. But is that true?
Reality check: Decisions OTHER PEOPLE make often impact our lives and our future. Natural disasters can have an influence. A devastating health diagnosis can impact our future – our very life. Stock markets crash, wars continue, the housing market may plummet. Someone we love may be killed by a drunk driver. People may be robbed, raped or murdered. Nothing like painting a rosy picture for you, huh? GRIN.
The good news? God is in control. John Ortberg said, “Peace doesn’t come from finding a lake with no storms. It comes from having Jesus in the boat”. I don’t think we can truly “let go – and let God”, if we aren’t in the habit of daily interacting with the God who loves us. You cannot think about God part-time and expect His peace full-time.
I love studying and using the names of God in my daily interactions with Him.
Jehovah-Rophe or Jehovah-Rapha: The Lord God heals
Jehovah-Sabaoth: The Commander to the Angelic Host and the Armies of God
Jehovah-Jireh: The Lord will provide
El Shaddai: God all sufficient
Jehovah-Shalom: The Lord our Peace
The names of God remind us of all the things He IS. These reminders make it possible for us to “let go – and let God” with confidence.
I encourage you to make a list of things you have trouble letting go of and discussing them with the One who really cares. I still have two big issues that I have trouble letting go of… yet learning to release these worries daily create a confidence that I can feel is growing. My hope is that I will one day realize I have truly “let go”.
My parents came to visit last week as they wanted to attend my son’s graduation. They live in Florida, so it was great they could stay awhile after Chris’s ceremony as we don’t get to see them that often. Mom and Dad live in a gated community in Florida. They play cards there… a LOT of cards. When they come, they often teach us a new game. That may seem pretty “ho-hum” to most of you, but I grew up in a household that played ROOK and Gin-Rummy. That Mom and Dad come and teach us brand new games with elaborate sounding names like Shang-hai Rummy, we are pretty thrilled. It gives us a chance to sit around the table and visit while playing cards each night.
They brought a new game with them this time called “Bohemian Poker”. It was really fun, and the hands are relatively short so that those of us with short-attention spans can concentrate. Without going into the details of how the game is played, mom reminded us all through the game (usually after a mistake was made) to “play your own hand”. Eventually I was able to do just that, but it did take quite a bit of repetitious reminding on her part.
The opposite of “playing your own hand”, would be to look ahead at the person or persons after you and intentionally play in such a way that they do not benefit from your play. Some players go so far as to collect more points in their OWN hand to keep others from benefiting from their play. (The object of Bohemian Poker is to have the FEWEST points). Mom reminded the novice players at the table to concentrate on what would benefit them the most… to not look at other’s hands, and concentrate on your own. I suppose another way of putting it would be to “mind your own business”!
So freshly ingrained is this new phrase, I have been thinking about how that applies to so much in our life. With her permission (and blessing) I decided to blog my thoughts on the idea!
What It Is NOT
“Play Your Own Hand” does not mean that you intentionally live an isolated, segregated life. It does not mean that you ignore the needs and problems of others and concentrate on taking care of your “own” exclusively. It does not mean that when we see an opportunity to serve or minister in our community or circle of friends, that we do not reach out to those we see in need.
“Play Your Own Hand” does not mean that you do not make short-term and long-term goals, for in truth, both are wise practices in the life of any adult. Sometimes those goals include relationships with others, and so we must determine how our goals affect those who are in our circle of influence.
What It DOES Mean
I believe that “Play Your Own Hand” teaches the following lessons:
1. Pay attention to what God has given you to do. Don’t worry about what others are doing as it is not your responsibility. Your choices, decisions, and planning ultimately affect YOUR life.
2. Don’t live defensively, countering wise decision for your life in order to keep someone else from benefiting.
3. There are gambles in life. They can be both exciting and nerve-wracking. May the chances you take only influence you, unless some benefit or blessing is passed on to another.
4. If someone you care about is ruining their life, try to be a good influence… pray for them… encourage them. But don’t allow their problems to become your problems. They may have some hard lessons that need to be learned through reaping the consequences of their own decisions.
Hearing Loss – So Much Variety!
I have met a great number of people with hearing loss through the years. Through speaking engagements, conventions, online support groups, HLAA and other hearing loss venues, I have discovered that hearing loss is not “one size fits all”. I have Meniere’s disease as well, and am amazed at the variety of symptoms and triggers individuals who struggle with this disease exhibit.
I have also seen people with hearing loss criticize decisions others have made to best cope with their hearing loss. Those who are pro-ASL, often butt heads with those who are anti-ASL. In my opinion, it makes both crowds… BUTT HEADS. Some people choose to use technology, or to be surgically implanted with a cochlear implant. There are three cochlear implant manufacturers. I have seen “CI Wars” both in forums on the Internet, and also face-to-face. Cochlear Americas, Advanced Bionics, and Med-El seem to have enthusiastic and loyal recipients. Is it not best to celebrate “hearing again”? Why does it matter what implant an individual chooses in order to best hear again? Sure – some companies have different perks, low “fail” rates, etc., but being negative or belligerent to an individual sporting a different brand is stupid and immature. (Not really pulling any punches am I, grin!)
“Play Your Own Hand” and do whatever it takes for YOU to hear best. To do so, insures you may communicate as best you can and to practice independence towards hearing all you can with the ears you have. Celebrate when others are learning to be proactive about their own hearing loss. Always be willing to try something new… you may learn a thing or two about your hearing loss even decades after you began living with these communication issues.
~ All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit of our neighbors ~ John Calvin
My young adult children enjoy going to the bank with numerous paychecks and depositing their money into both savings and checking accounts. I envy them sometimes, for my husband and I certainly cannot wait to deposit numerous checks. Instead we worry about looming car repair bills, vet expenses and other various “unexpectedness” that ensures every paycheck is automatically credited to our account.
This week I have been thinking about “divine deposits”, perhaps because I’m feeling DIRT POOR but more likely because I’ve experienced what it means to have someone deposit part of themselves into my life. No matter how hard things are in my life, I can always “count my blessings”. I’ve experienced financial crisis, loneliness, loss, fear, disability, heart break and depression; yet, I’ve never been completely bereft of blessings.
An old hymn once sung with some frequency before churches switched to more contemporary worship music, is entitled “Count Your Blessings” and written by Johnson Oatman, Jr. The first verse:
When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.
Bing Crosby use to sing a song entitled, “Count Your Blessings Instead of Sheep”. The first verse, crooned by this music legend, is:
When I’m worried and I can’t sleep
I count my blessings instead of sheep
And I fall asleep counting my blessings
When my bankroll is getting small
I think of when I had none at all
And I fall asleep counting my blessings
I’m certainly a believer in considering the “good” and recognizing the power of blessings perceived. However, I believe John Calvin best described the REASON for our blessings. Blessings aren’t actually blessings unless we turn around and do something with them. If we simply receive a blessing and let it “sit in our soul bank”, the value of that deposit plummets.
So HOW Do I Bless Others?
Oh sure! Some people use anonymous gifts of money to be a blessing to someone else. However, I believe that blessings are rarely monetary. The cash value of blessings may be low, but the eternal value is considered priceless!
I recently stood in the hospital room of a dear lady dying of cancer. She could no longer speak because of the difficulty in breathing. Yet even in her pain-wracked body, you could see the yearning in her eyes to “give back” to those visiting her crowded hospital room. Each person who entered was greeted with a small smile, warm pat on the hand and dazzled by the twinkle in the eyes of this “walking blessing”.
I know of people who have adjusted to a life-changing, unexpected hearing loss, who cheerfully participate in the Walk4Hearing so that others can benefit from the local and national support of the Hearing Loss Association. Cochlear implant recipients often become mentors to others who are thinking about being surgically implanted with these bionics, or are new to “hearing again”. An investment is made in the life of someone else… an investment of time, advice, friendship, and understanding.
The trainers at Fidos For Freedom are volunteers. Countless hours of dedicated training and expertise are poured into every match of client and canine. The trainers are not paid for their work… at least not on THIS side of Heaven. I believe these compassionate trainers do what they do because someone else invested in them… they are simply “paying it forward”.
Who Are Your “Neighbors”?
“All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit our our neighbors.”
Sure, the neighbor that benefits from your own “dispensed blessings” may be someone who actually lives nearby. Yet a ‘neighbor’ is often someone you have never met. It is possible to even be a blessing without being consciously AWARE. This is the result of living a life in such a HABIT of kindness, that blessings just ooze from your pores and influence complete strangers!
“Pay it forward”. To whom, you may ask? Anyone you can! I’ll leave you with one of my favorite commercials:
This week marked the end of my son’s life as a high school student. In a couple of weeks, my parents will be here to celebrate at his graduation ceremonies for Chieftain Christian Academy. Although Chris did most of his senior year at a local community college (since he goes free thanks to “Dad” working there), he still did a couple of classes at home. I’ve been more “hands off” in his education this year, but still had the opportunity to make sure he was logging hours for that 1/2 credit of Bible he needed. I was still his “teacher” for Geometry, something we put off far too long! I was still busy grading papers, generating paperwork for our co-op, and preparing lesson plans for the kid.
Now the “kid” is done, and I find myself asking, “What do I… want to be when I grow up?” My life has pretty much been on hold for twenty years, in spite of working part-time as a teacher throughout. Every school year revolved around the kids, as did every activity, field trip, book purchase, and support group meeting. Now we are “done” with this chapter in our lives and I once feared I would be left feeling deflated.
But… I have a plan of action. That is part of the reason I have been going to school part-time. I’ve been taking 6-9 hours a semester of graduate level courses in Psychology. I’m set up to complete a Master’s program at the end of 2010.
Looking Back
In spite of all of these years of concentrating on my family, I really didn’t think there would ever be a day I could look to my own dreams. It’s hard to believe that it has been almost twenty years since I first began to notice a dramatic change in my hearing. In the beginning it was so hard! Even my own parents and siblings had difficulty believing I was really losing my hearing. After all, when I was being raised at home, I only had a mild hearing loss in one ear. It didn’t make sense to them that ten years could make that much difference in my hearing. I remember one of my kids coming home from Colorado after visiting family, visibly upset because someone had told them that my hearing loss must be “put on”… that it wasn’t real. They had no idea how to respond to the lack of belief in acquired disabilities. They knew I couldn’t “hear” in the dark (since I speech read). They knew how frustrated I was when my hearing aid battery would die. They knew how terrified I was of the phone and how I was slowly dropping out of activities at church since I couldn’t hear. I remember talking to my little sister on the telephone prior to my cochlear implant surgery.
She wanted to know why I would consider surgery and take that risk. I remember staring at the phone incredulous at her question. Here I was reading captions from a Cap-tel phone, in order to even know what she said… and THAT wasn’t 100%. I explained how minimal the risks were to cochlear implant surgery and tried to explain how desperately I WANTED MY LIFE BACK.
Looking Ahead
I didn’t let their reservations stand in my way. Thankfully, my immediate family understood the struggles I faced each and every day and were so supportive! Other late-deafened adults were encouraging and enthusiastic about my surgery. Getting a cochlear implant allowed me to dream again. Because I can hear as well as I do, I look forward to giving back in some way… of doing something outside the home. Don’t get me wrong… I have loved being a keeper of the home and the opportunity to spend so much time with my kids. However, I really thought that at the end of this time I’d be facing an empty nest and feeling unnecessary. Once I could “hear again”, everything changed. I’m at the end of this journey and at the beginning of a new one! I’m feeling rather hopeful, excited and NECESSARY.
I suppose if the posting this week had a POINT, it would be this:
Do you have a hearing loss? Do hearing aids and other assistive devices no longer help you very much? Have you been evaluated and been told that you qualify for a cochlear implant?
DO NOT PUT IT OFF.
The risks are minimal, the pay-off is HUGE. It has been five years since I was activated (May 13, 2005). I have no regrets other than I waited as long as I did. I qualified for a cochlear implant three years before I finally went through with the surgery! I’m dreaming again. I’m excited about the future. I have plans, goals, and am slowly but surely “getting there”. I can hear with this bionic ear of mine!
Today I went to Johns Hopkins for my 5 year mapping. It always feels surreal when I go, for five years is simply not enough time to pass that I have already forgotten what it felt like not to hear. As I go in the parking garage, I can clearly hear the ticket machine ask me to take my ticket with me so that I can pay before exiting. When I approach the hospital, I can hear the revolving door “clicking” as it slowly rotates inward. I clearly hear the “ding” of the elevator as I wait for one to come to the first floor. None of these things were discernible to me 5 years ago. I guess you could say my ears became “reborn” on May 13, 2005.
Below is my audiogram 5 months before my surgery. It shows I had a 90 dB loss in my right ear and a 98 dB loss in my left. My left ear is the one I decided to implant.
Audiogram 11-4-2004
Below is the audiogram from today. My audiologist is one of my favorite people. She’s very easy to talk too, and VERY good at what she does. She created a new program in my “P3” slot that I’m going to work with to see if I can hear my son’s voice any better with in comparison to my normal program. In the sound booth… I actually tested “best” with the lower tones, so it could be that I’m going to have to start fussing at my son to project a little better with that deep voice of his! (Look up when you talk… don’t have your face buried in your laptop).
She doesn’t test my right ear anymore, but you’ll note that my left ear (once a 98 dB loss) is now testing at 15dB loss. Better yet, check out the bottom where it has my words/Phonemes and HINT sentences testing in quiet/noise!
Audiogram 5-7-2010
My audi is never “pushy” but she reminded me that should I ever wish to consult with Dr. Niparko about getting a 2nd CI, that I can just call and make an appointment. Right now with my balance issues, I just do not feel the need to pursue that as I’m “hearing” so well. Maybe… SOME DAY.
Hearing Elmo 