It’s a Shame You Don’t Burn Calories

Darn, but his voice is changing YET AGAIN!

Geesh, I’ve had a tough week. I hate to complain because I am aware that my frustrations in no way compare to what some folks are going through right now.

I mean, everyone in my family is relatively healthy; we’re employed; doing well in school; have connections with people we care about… but let’s face it –

We can still have a tough week in spite of how well things may be going generally.

Part of the reason I enjoy connecting with people through their blogs, Facebook, email and SKYPE is because it can serve as a sobering reminder just how well I have it!

Hearing Loss Can “Suck”

I do hate to admit when a “bad week” is because of the fact that I have a hearing loss. After all, I make a great effort each and every day to live my life as a positive role model, proactive advocate, and enthusiastic recipient of a cochlear implant. But ya know? Sometimes I’m going to have a bad week because of problems I encounter as the result of being deaf.

1. My son’s voice is changing – – AGAIN. Like it could get any deeper? I noticed this last week that it has become more difficult for me to understand my son’s voice again simply because it is so much deeper. I have a mapping appointment at Johns Hopkins Listening Center in May. Do I drag the kiddo with me so that my programs can be tweaked to hear him better? Or, because I’m “so darn independent”, simply tell my audiologist that I’m having difficulty with deeper voices and let her “tweak” based on what the computer tells her to do?

Honestly I inwardly “grimace” when I’m trying to have a conversation with him. I have to actually be face-to-face in order to lip read some as that voice of his just DISAPPEARS in some lower octave that I’m unable to hear. You’d think I’d burn calories as I must intently concentrate and fixate on the conversation.

2. My wonderful husband is having allergy problems like many in the mid-Atlantic states are having this year. It seems pollen is at an all-time high, breaking records across the state. (How exactly does one measure pollen I wonder?) I do know that our cars and porch are always covered in a coat of fine particle yellow dust! For some reason, this year it has really “done a number” on my husband’s voice. Some days (especially in the morning) he actually HAS no voice! It can be very frustrating trying to talk to someone whose voice cuts in and out! Normally, I can be in a different room and carry on a conversation with the man! (Thanks to the Nucleus Freedom!) But this week, I can be looking right at him and some of the words just sort of disappear into space. How can something SO HARD – intently concentrating and trying to understand conversation – be so exhausting? Honestly I’ve been going to bed with a mushy brain.

So yeah… most days I embrace the fact that because of invisible disabilities I live life a little differently, but certainly with an attitude of gratitude. This week? Not so much.

That’s OK, too ya know! We are not always going to be accepting or appreciative of having to do things a little differently. A short list of hearing loss belly-aches?

1. Having to PUT your “ears” on each and every day before being able to hear that first sound of the morning.

2. Having to change batteries to “hear again”… and they never die at an opportune moment!

3. Having to fumble and juggle THREE Size 13 batteries to start with!

4. Not being able to hear myself sing in the shower. As memory serves I am pretty darn good at it!

5. Not being able to run out in the rain and splash and play while HEARING.

But ya know? My list of jaw-dropping, heart-warming, deeply perceptive acknowledgments of what I CAN hear is much longer!

Denise Portis

© 2010 Personal Hearing Loss Journal

Acclimation

I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.

I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.

Use to the Scum

I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.

Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.

I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.

The SHOCK Killed Them

I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.

I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.

Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.

My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.

I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.

Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.

One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.

If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!

Denise Portis

© 2010 Personal Hearing Loss Journal

A Little TOO Helpful!

Chloe and I can be found in Wal-mart on most Tuesday mornings. A friend from my home church in North Carolina (thanks Kim!) told me that the best time to go to Wal-mart was on Tuesday mornings. As I rarely stand in line to wait AT ALL, and as the aisles are usually clear of shoppers, she was exactly right. I save a lot of money at Wal-mart, so it is worth my while to even get my groceries there as one of the two Wal-marts in Frederick is a “super” Wal-mart.

This morning the weather was gorgeous! Not a cloud in sight, so I didn’t even bother bringing my cane. Not only was I not wobbly today, but I had a spring in my step! (Well… a spring for ME!) We hadn’t been shopping very long when we approached an elderly lady pushing her cart and shopping. She asked me if she could help me find something.

I took a good look at her and noted that she wasn’t a Wal-mart employee.

“Erm… No thank you!” I replied. “I’m finding everything I need”.

What do you need dear, let me help you!” she insisted.

She even turned her cart around so that she was now headed in the SAME direction as I was. I stammered, “Well … umm… I’m looking for golden raisens. They come in a big yellow box”. She spotted them for me and placed them in my cart.

“What else do you need, dear?” she asked nicely but firmly.

“Really, I’m fine. I appreciate your help,” I said a little nervous now. I moved on down the aisle and the little lady stayed right beside me with her own cart.

I’m really not a DUMB person, but it took me until the third aisle of us shopping side-by-side that I finally realized something. She had just handed my list back to me after noting something I needed and bringing it to where I was. She thought I had vision difficulties! I quickly put together that having Chloe by my side meant she thought that Chloe was my seeing eye dog!

Now hiding a big smile, I finally tapped her and said, “Ma’am? I’m not blind. I have a hearing loss! I’m a late-deafened adult and this is my hearing assistance/balance assist dog”, I said as I pointed to Chloe’s vest.

She paused a moment, read the vest more carefully, and then looked at me with a big beaming smile and said, “Oh! I can’t hear either!”

Too helpful?

This little lady certainly didn’t mean to be a “pain”, but I had tried to explain that I didn’t need her help a couple of times. Without being almost rude… I didn’t know how to get rid of her!

She really DID mean well. She was trying to help. She thought I was a young woman (compared to HER) who couldn’t see well and was trying to shop on my own. She was being helpful. It wasn’t until I realized what she thought my limitations were, that I was able to explain exactly what I could and could NOT do.

Many times a person with a disability may feel frustration building up inside because of how HELPFUL everyone is! It is important to find out exactly what it is that a person with a disability may need from you – if anything. I attend Fidos For Freedom a couple of times a month with Chloe for training. I work side-by-side with people who have many different kinds of disabilities. Everyone is different. Even those of us with hearing loss vary in how our disability impacts our lives. I am more likely to need you to offer me a steady hand when getting up off the floor, than I am for you to repeat something that I missed. Our training floor is looped, and I hear really well in spite of the huge training floor. Other hard-of-hearing people or late-deafened people may not hear as well as I do, but are more steady on their feet. Chloe actually helps me with balance-related tasks almost as much as she helps me with sounds I cannot hear or “place directionally”.

Some of the clients use walkers, wheelchairs, or power scooters. Some have canes that they use all the time – not part-time like I do! Yet, each of them have varying degrees of ability. After being matched at Fidos For Freedom, the trainers work hard to have YOUR dog learn specific tasks that will help YOU. So I have learned to not “help” unless I have already established a relationship with someone and I know exactly how I might best help them.

One thing I have learned about people with disabilities… they don’t want to be treated like they are disabled. They usually try to maximize their ABILITIES so that they can live a good life in spite of a disability.

How Can I Help?

Having two young adult kids is another good reason to learn to ASK how one might help. Try not to assume what someone else needs. Simply ask. If they want or need your help, they are given the chance to take control of their own needs by requesting specific help for specific tasks. My son? Yeah, he’ll let me do his laundry until he leaves home. Because I LOVE doing laundry (I realize I’m strange), I don’t mind doing this. However, I have learned to ASK if one of my kids needs my assistance. Because I respect them and have shown them that I trust them to let me know if they need something, they have learned to ask for help when they need it.

We should take care about not being to prideful to ask for assistance when needed too. That can be harder for some than others!

What type of things do people try to help you with even though you may not need it?

What types of things do you have trouble ASKING for help with doing?

Denise Portis

© 2010 Personal Hearing Loss Journal