Markers

Sunday I had the rare treat of hearing my husband, Terry speak. In the past I was able to attend and listen to numerous speaking opportunities that he had, but our lives do not “intersect” outside of HOME as often as they once did. So the opportunity to hear him speak on Sunday when our pastor invited him to “fill the pulpit” while he was gone was pretty special. Our church is beginning a study on the book of Ezekiel.

We don’t have a “deaf ministry” in our church. We also do not have a loop system. Our church family is a pretty small group – but we love it! There are two of us with cochlear implants. Myself and a young teenage boy are the “hearing again” crowd in our church family. When you hear with a CI, there is a teeny, tiny delay in processing what you hear until you understand what it is you hear. Most of the time I do not notice the delay at all. However, in large cavernous place like the auditorium in which we meet, plus the fact I have all this noise around me which includes children, rustling of papers, sneezes, adjusting body weight in chairs, etc., I’m a little more distracted by what I’m hearing! It’s also strange to focus your attention on a speaker, but the sound of their voice is coming from another place. I suppose since I was without sound completely for almost two years, I still habitually speech read. Looking at Terry, I “understand” much of what is enunciated on his lips. However, Terry’s voice was coming from the two large speakers from the side. Since we aren’t “looped” for hearing assistive technology, what I heard was what everyone else heard… coming from the speakers. (BIG GRIN). It’s hard to explain… but trust me when I say it can be difficult when you hear with a CI!

Anyway, Terry began by talking about his past work with BIANC (Brain Injury Association of North Carolina). He brought up examples of people talking about markers in their life. As I’m playing a constant game of “catch up” throughout the study… when he said this the first thing that came to mind was Crayola Markers. After I understood what he meant, I was pretty cracked up. Some examples he gave:

“Well before my brain injury, I ….”

“After I lost my hearing, I…”

“Before I got married, I…”

“After we had kids…”

We all have these markers in our life. At some point – LIFE HAPPENS. And when it does, you are left with a permanent “marker” in your life. Things at THAT POINT changed and your life would forever be different. These markers are not always a BAD thing… they can be a good thing too! These markers in our life indicate a point in time where our focus changed. They indicate where we ‘chose a new road’, or embraced a new calling or mission. The markers can also indicate a point in time where the “bottom dropped out” of the world as we knew it. Tragedy, loss, and heartache have a way of searing a painful scar on our hearts and minds, leaving a point in time where we recognize our lives changed.

Terry had some main points from Ezekiel chapters 1-4. Ezekiel’s marker was an encounter with God. Before this “marker” in Ezekiel’s life:

BEFORE

He was entering a new season of life.

He was with people who were dealing with problems.

He was looking for opportunities from God.

Then during the “great moment in time” that would forever change Ezekiel’s life:

DURING

It was impossible to ignore.

Impossible to explain

and Impossible to get over.

After the encounter, Ezekiel found that:

AFTER

What defined him would be different.

What discouraged him would be different.

What satisfied him would be different.

I think all of us can say that these points hold true to any “marker” we have in our own lives. Invisible disabilities may define individuals in different ways but there is one thing we have in common. Our lives will never be the same. That isn’t always a bad thing… for even in “losing something” we often gain so much. It may be hard to recognize at first, but the ‘gain’ is there if you really look for it. I think of my own life and the marker of “After I lost my hearing…” What now defines me and discourages me is different than before the marker. What SATISFIES me is different. My goals, desires, and passions are much different than they were. I have a friend who deals with numerous invisible disabilities. I love her. She has ministered to me in ways she does not understand. She once wrote about her new satisfaction about what a friend was. Allow me to share…

“Several years ago I fell ill, unable to continue a life that was full of people. They were genial folks, kindhearted and interesting. As they faded away when I was no longer able to do things with them and for them, I discovered the difference between a friend and a friendly acquaintance… A good friend changed from something I was owed to a breathtakingly beautiful gift. The sorrow and grief made that change possible, leaving behind it a bit of wisdom. There have been many an acquaintance made after I lost my pre-illness social circle, but now they are held rather lightly. I enjoy them, but resist having expectations of them. Often I will find myself sensing when a relationship feels more like a requirement, or when I seem to be taking more than I give back. Not in IOU or UOME terms, but in an awareness of balance.”

She goes on to explain that really the only ONE who can meet our needs is God.

I am reminded of an Ebenezer. To some of my readers, you may recognize that word from a VERY old hymn, rarely sung in churches today. “Come Thou Fount of Every Blessing” is not widely known in today’s churches. I had a grandmother who was not only fond of old hymns, but also of explaining what words meant. Ebenezer comes from two Hebrew words Even and Haazer. It looks like this:

It means “stone of help” and represents a memorial stone set up specifically to TESTIFY and REMEMBER.

These markers in our life are indelible, permanent fixtures on our own hearts and minds. For some things, however, I like to have a literal Ebenezer. Something tangible, something I can hold, and something that forces me to remember.

You are going to think I’m crazy… but check out this Ebenezer:

Nope! Your eyes do not deceive you. These are two shed cicada skins. Before you think I’ve lost it and am “gruesome beyond belief”, read the LID of the box:

Unless you’ve lost your hearing… only to regain it through a cochlear implant, you cannot understand what it means to hear and recognize a sound from your past.

You cannot understand what it means to bend and pick up something unless you live with arthritis.

You cannot understand what it means to see again unless you’ve lived with cataracts and then had them removed.

You cannot understand what it means to stretch for a glass from your cubboard and realize you feel no pain today, unless you live with fibromyalgia.

You cannot understand what it means to have independence because of an assistance dog, unless you live with mobility issues and difficulties.

You cannot understand what it means to look forward to “today”, unless you live with mental illness.

Life challenges bring a new appreciation… a new satisfaction for what once were mundane tasks. If you haven’t yet identified markers in your life, well my friend? It’s one of two things… you either aren’t living life, or you haven’t lived enough of it YET.

One of the hardest things about being a parent is seeing my young adult children identify and experience things that etch permanent markers in their own lives. Perhaps you aren’t a parent, but you know someone who is experiencing a first “marker”. Do your best to encourage them. Be a living testimony of someone whose own life markers made them “better”. Make a difference…

Denise Portis

© 2010 Personal Hearing Loss Journal

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Not Taken For Granted

October 2000 - September 20, 2010

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.

I do not take it for granted.

Denise Portis

© 2010 Personal Hearing Loss Journal

Who Is That Person?

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

Denise Portis

© 2010 Personal Hearing Loss Journal

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)

Prepared For It?

We simply do not take ANY chances

“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?

Denise Portis

© 2010 Personal Hearing Loss Journal