Round and Round She Goes, Where She Stops…

… is USUALLY on her nose.

If you live with invisible disabilities or chronic illness, have you ever stopped and tried to make sense of it all? More often should I choose to do this, I find it simply doesn’t make sense. What can be more difficult, however, is trying to help someone ELSE understand what it is like to be a little “different”.

The words disability is a like a nasty tasting curse word to many. Personally? I’m not afraid of the word because it does currently define my rights under the ADA – something I wish wasn’t necessary but is in order to make sure that those who navigate life differently have the same access and rights as everyone else. I’m not here to today to discuss the WORD, however. I am here to bellyache.

A friend of mine posted a link to a terrific article currently taking up space at Invisible Illness Awareness Week. It detailed why it is important to just LISTEN sometimes. You can access the article HERE.

I belong to a number of online support groups for people with Meniere’s disease. I’ve never met anyone with symptoms exactly like mine. As a matter of fact, Meniere’s disease often frustrates perplexed physicians who are trying to help treat the disease. However, because there is no cure, one can only learn to manage and treat the symptoms. What may help one person, does not help another at all.

My assistance dog, Chloe, from Fidos For Freedom Inc., is a big blessing. Originally trained to be a hearing dog, she still performs all her hearing alerts with finesse and enthusiasm. As a matter of fact, 7 AM came WAY to early yesterday morning when my alarm went off. I tried to tell her to go back to bed and stop kissing my hand, elbow, and right ear. My husband rolled over and said, “Hello? Your alarm is going off!” Oh.

But Chloe actually helps me with far more balance related tasks each day than she does hearing alerts. I tried to “track it” one day and she performed 17 hearing alerts (alarm, kitchen timer, automatic retrieve of items I’d dropped and hadn’t heard, door knock, and cell phone ringing) and over 40 “other” tasks. (I quit counting after 40). These usually consist of directed retrieves. I drop things. I drop things a lot. Picking them up myself takes time as a bend all the way to the floor often precedes a fall. To avoid that, I simply let her get them for me. She also acts as a steady brace when I stand, sit, or go up/down stairs. She also acts as a brace if I begin to weave in a large cavernous place. The picture I chose for this post reminds me how bad my visual field was on Saturday. I ran into the mall with my husband to pick up something at a favorite store. When sound echoes, I tilt. (Picture Denise, aka Leaning Tower of Portis). Chloe has a large handle on the top of her vest that works perfectly. On my lower left is a solid helper that keeps my world from being quite so off center. I’ve been in JCPenney before and let go of her handle to look at some clothing on a sales rack. I immediately felt “swishy” because of the tall ceilings and lights. I grabbed out to keep from falling and clutched the breast of a nearby mannequin. I don’t make these things up. Thank goodness she/it wasn’t real, right?

Yet there are things Chloe cannot help me with, too. Here are some things about Meniere’s disease that surprise some folks:

1. Scrolling words or moving backgrounds on PowerPoints make me sick.

Our church places the words to songs and notes for the message on the walls in the sanctuary. This is very helpful for anyone with hearing problems… or ADHD (smile). However, sometimes there are moving points of light or star bursts that move behind the words or notes. I’m fine as long as I’M SITTING.

2. I have to sit to brush my teeth.

Yeah. I know, I know! Strange! But there is something about moving a toothbrush around in my mouth while in a standing position. I have to sit, and there are days I actually have to close my eyes on top of that!

3. Stepping down can be problematic.

This one really bugs me. On sunny days (weather is a trigger for me), I love to hike and climb around. I love rocks. Big rocks. I love heights (believe it or not). However, stepping down more than 6 inches is enough change in my altitude that I black out. It may only be for a few seconds, but if both feet are not on the ground, I’ll be picking blades of grass out of my nose hair. Chloe has learned that a “Whoa!” from me means

Move.

NOW.

4. Must… AVOID… looking… at ROTATING things (gasp)

Ceiling fans are not my friend. Neither are signs hung from ceilings when the air conditioner vents blow on them to make them twirl. For me this means heave, deep breath, heave again. I’m serious. 🙂

5. I shower while looking at my feet.

I didn’t realize how difficult it can be to get clean when you can’t look up at the shower head. Raise your eyes to reach up for shampoo or your razor? Honey? Do you want to get up close and personal to the DRAIN? Heaven help the family member who moves my shampoo or washrag from their designated place. I count on where they are so that I can shower safely… while looking at my chipped toenail polish.

6. Watching the effect of the wind can topple me too!

We’ve had some terrific storms lately. Since it has brought much needed rain, I’ve been loathe to complain. I love standing on the deck and watching the wind blowing the towering pines behind our home. Clarification: I like hanging on to the rail of our deck and watching the wind blow the towering pine trees behind our home.

7. Gingery’s Baby Pegasus can be mesmerizing to my detriment.

My daughter’s 12 pound hairless Chinese Crested likes to spin. For fun. Imagine that. It is quite captivating, but it only means CAPSIZING for me. “Look away, Denise, Look AWAY!”

8. I fuss at my son’s stomach.

My son… you know the one who was 7 weeks premature? He is 6 foot 3 inches tall. He’s a terrific kid. However, even at 21-years-old, he still needs the occasional “mama sermon”. I dare not look up, Up, UP into his eyes. One isn’t able to reiterate needed reminders when flat on the floor. Instead I point my finger and give his belly and chest “what for”. The kid laughs at me. LAUGHS. (sigh)

9. Glass elevators have speckled carpet.

I know this because I only see the carpet in glass elevators. Why not solids? Stripes? Only speckles. This confuses me.

10. I remind my doctor that I will NOT hold my breath while he’s listening to my ticker.

Because… well otherwise I’m waking up with nurses, hound dog, and doctor crowded around. (Why crowd someone who has swooned? Can I just ask that?)

Like many people who get up every morning and “manage” their symptoms, I hope perhaps I’ve helped you understand balance disorders a little better. Feel free to share your own “management techniques”.

Denise Portis

© 2012 Personal Hearing Loss Journal

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Another Look at Isolation

Hearing Elmo welcomes Melissa Sisco, from Alabama to our list of talented writers who have learned to “write from the heart”. Melissa is the mother of two young daughters. She was first diagnosed with Meniere’s Disease in 2007, and also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”.

I’m not really sure why I’m attempting to do this.  I’m not much of a writer; at least I haven’t been for a very long time. But writing is one thing that, luckily, I can still do.  I really connected to the last piece that Denise wrote because I am right there, right now. Alone and isolated.  I don’t go out much at all, especially by myself.

In brief summary, my name is Melissa, I am a late-deafened adult, 32 year old female, married for 9 years (to an amazingly understanding husband), mother of 2 beautiful girls, ages 3 and 5. I was first diagnosed with Meniere’s Disease in my left ear when my oldest was 4 months old. I woke up one morning and could not hear anything out of my left ear and I was so dizzy I couldn’t even sit up straight in bed. About two years ago I joined the ranks of the Bilateral, but am lucky to only have moderate hearing loss in my right ear.  I wear an obscenely expensive digital hearing aid in my left ear (sometimes) and I need one in my right ear, but just can’t afford it right now.  I am not Deaf enough to qualify to be a member of the Deaf community where I live, and I am apparently “wrong” for choosing a hearing aid. But I can’t hear enough to qualify for the Hearing World anymore either.  I feel lost in limbo. I simply belong nowhere.

Why It Can be Difficult

I used to enjoy simple things like shopping, (especially shoe shopping) but now I avoid shopping trips as they make me nervous and, frankly the last time I did go out, (to my favorite shoe store) I literally knocked over a little old lady who was standing directly behind me.  I didn’t know she was there, couldn’t hear her or sense her at all.  I backed up from a store display to get a better view and plowed that precious little woman straight into a mannequin.  I was so embarrassed, I apologized profusely as other patrons helped her up and glared at me like I was the devil incarnate.  I left the store and haven’t gone back since.

At work I hide in my cubby hole of an office (it’s actually the records closet and my office).  Once upon a time, I was a 911 dispatcher, and I was really good at it. I did that for nearly 8 years, before my hearing loss reached the point where I can no longer do that job safely.  I was lucky to not have been let go, and I am now relegated to some sort of mish/mash office manager and dispatch supervisor. I know I am unbelievably blessed just to have a job, but I avoid even my coworkers now because most of the time I have no idea what they are saying, so I just nod my head and try to wear my neutral “yes I understand” expression, which is a big fat lie.  I have a strong aversion to my work desk phone.  It’s set as loudly as possible, yet I still have to ask people to repeat.  (My employer is working on getting me a CapTel phone, but our system is slow as molasses). Sometimes, when I see a number from someone I know I have a particularly hard time understanding (ahem –soft spoken females like me), I just let it ring to voicemail. I have found I also do this at home, and on my cell phone.  Although to be fair, half the time I really can’t hear them ring, or –at home anyway- I hear it but can’t find where the “ring” is coming from.  (Usually I’m hoping it’s a real sound and not just a figment of my broken cochlear nerve as I frantically search room to room looking for my telltale “flashing strobe light” phone.)

Recently a group of female friends (ok coworkers and coworker’s wives – I don’t really have a lot of friends anymore) went out to dinner and a movie and actually invited me to go along.  I really wanted to go, I wanted to be with other people and I really wanted to see that movie!  But I remembered that previously, I had a difficult time asking for, receiving, and setting up the captioning device at that particular theater and I’m not going to pay $15.00 to see a movie I can’t “hear/read.” Keep in mind if you are new to the whole captioning thing, you can ask for it, but that doesn’t mean the minimum wage paid teenage employee has any idea what you’re talking about. I dreaded the embarrassment of going through the captioning device thing again, especially in front of others. Also the chosen restaurant was a loud, noisy Mexican joint with great food and a fun ambience, but a terrible place for even the highest quality hearing aid to make a difference. So I lied and said I had no one to watch my kids. Can you say Avoidance?

I rarely get invited anywhere nowadays and subsequently lost a number of “friendships” because of having to cancel last minute because of my lovely vertigo spells. Apparently, “Sorry I’m too busy hanging on to the floor for dear life and vomiting to go out tonight,” has a limit on the number of times it can be used as a forgivable excuse.

Trying to Find the Positive

There are good things about losing your hearing, really there are. If it’s really noisy and I’m trying to sleep (like my neighbor and his oh so noisy garage band at 10 pm, or the neighborhood dogs howling for no reason at all) I can sleep on my good ear so I can’t hear anything.  If I have a migraine the hearing loss is actually a relief.  I can sometimes pretend I didn’t hear something if it’s something I don’t want to talk about.  (I think my husband has figured that last one out, drat.)  When my daughter(s) start whining/throwing tantrums I can literally turn my deaf ear to it.  Although they have also figured that out too.  I really try to appreciate the few sounds I can still hear, now more than ever. I try to imprint these sounds upon my memory so that I never forget – the giggling laughter of my little girls, my husband whispering “I love you” in my good ear, the melody of morning songbirds, and the relaxing sound of ocean waves.

I can actually swim in real life, (well I could swim once anyway), but as for living the new life of a Deaf/ Hard of Hearing person I am barely hanging on to my flotation device.  Denise always manages to end her musings on a positive note, so I will try my best.

I hate feeling sorry for myself.  I hate being depressed.  I hate hating everything. I can’t stand people who constantly whine and throw pity parties for themselves. I certainly don’t want to BE one of them. I’ve always been of the mindset that if you fall, you pull yourself up by your bootstraps and keep going.

I know that I am lucky not to be dying from some terminal disease, I am just going deaf and I’m dizzy most of the time.  I know, rationally, that I just have to learn to adjust to my “new” normal. I just don’t happen to be particularly impressed with what my new normal is, or what it may be in the future.  So I’m angry sometimes.  Well, really more like awfully T’d off. And I am actually annoying myself with the unnecessary amount of negative energy that I am producing.

I try to remember that the good Lord doesn’t give us more than we can handle. But God apparently thinks I have the strength of Hercules or something, but I disagree.  Grrrr.  I get so mad at myself, at what is happening to me, and I’m mad at being mad.  I don’t like mad people!

I suddenly have a great amount of sympathy for that poor dog that continues to chase his own tail in circles.

I might be barely hanging on, and I can’t hear the people who may be shouting at me –trying to help me, but I’m not giving up either.  I’m pretty good at the doggie paddle, so I will keep on paddling, I just don’t really know where I will end up. I try to keep a sense of humor about all this when I can, although, sometimes others (fully hearing or truly Deaf) kind of miss the point.

I truly believe that where there is humor there is laughter and laughter spreads joy.  And one can still laugh even if you can’t hear yourself do so.

One of my favorite quotes is by Gustave Flaubert –

– “One can be the master of what one does, but never of what one feels.”

At this point in my journey, I know my future is up to me and my actions will determine what is next, but I just feel lost at sea- drifting somewhere, and I don’t even have any oars, or a decent GPS system to help me navigate.

Salud and good luck on wherever you are on your personal journey.

Melissa

© 2012 Hearing Elmo

Decisions, Decisions…

For a totally unrelated reason, I was reminded this week that my husband cannot swim. I hate it when a discussion brings up old nightmares about the topic too! Goes to show how much our subconscious is at work… especially when sleeping. Anyway, this conversation about the fact that my husband cannot swim had me dreaming about one of the most terrifying events that led up to my banning him from going into the ocean.

The year was 2001, and my family and I were in Siesta Key, Florida. Terry was taking some classes to finish up his doctorate. Always nice when degree completion requires on-site classes in Sarasota, and you can time it where the whole family can be dragged down with you! Terry wasn’t getting much rest and relaxation. Going to class all day and putting the finishing touches on his dissertation were exhausting. At night he was glad to just catch whatever sunshine was left in the day and rest on the beach while I corralled the kids into a distance I could easily manage their activities.

I’m not sure what prompted a non-swimmer without a life vest to decide to get on an inner tube, launch one’s self into the ocean, and drift off to sleep. He swears up and down he had no idea he’d drift out to sea. After all, when he got past the breakers and could just snooze, the ocean was calm and serene. I’m the one with hearing loss (a fact I’ve made plain on this blog). But exhaustion and FREAKIN’ DISTANCE FROM SHORE will dissipate sound waves and keep someone from hearing shouted warnings; even from hearing ear-drum piercing screamed warnings. That’s right. Picture me on shore with kids, jumping up and down, screaming warnings that a riptide had caught him and he was oblivious to the danger. I remember thinking, “he has the room key around his wrist so I can’t even get into our condo and have one of the kids call my parents to let them know Terry drowned”. Morbid, yes? But I knew Terry could not swim AT ALL. The man cannot even dog paddle (something Chloe has told me since that she’s a little embarrassed about actually).

We may not have been able to attract Terry’s attention, but we did other folk’s. Soon a small crowd of people were whistling and hollering for “Terry!” A man, likely a native, stopped close to me and said something. I could hear the rumble and pitch of his voice. I stopped screaming long enough to sputter, “I have a hearing loss and have to see your face to hear”. So he touched my shoulder to get my attention and said, “He can’t swim? Want me to go after him?” I looked out at my still sleeping husband and agreed immediately. “YES PLEASE!!!!” (At least I’m polite...)

So the man went after my husband. He must have been shouting as he swam, because when he got closer to Terry, I could barely make out that Terry finally woke up. I saw a flail of hands, legs, and arms and prayed he’d hold on to that inner tube! The rescuer had started further up the beach to Terry and I think the tide and his strokes eventually got him safely to Terry’s side. He must have given him instructions to kick, which he did as well along with some steering, and eventually ended up on shore about a mile from where we all started. The small crowd of people had followed the kids and I down the beach. Some kind soul had picked up our things and carried them with us, knowing I wasn’t cognizant enough to even do that.

Drifting Off

A very popular topic for writers who discuss acquired disabilities and chronic illness, is social isolation. Isolation does not happen all at once. It is a gradual process; a series of small decisions and choices that eventually yield a self-perpetuated aloneness. We become “deaf” to the shouted (and well-meaning) warnings of people around us. Can we be rescued? Will we even allow a “strong swimmer” to intervene?

For people with hearing loss, isolation is almost a part of the process of learning to live with it. I know few people who are late-deafened that did not have at least a short period of self-imposed isolation. Why? Well experts have said of the late-deafened, “They no longer felt they belonged in the hearing world, and neither did they belong in the prelingually deaf world. Onset of deafness had left them in a twilight zone between worlds and had robbed them of their identity” (Barlow, Turner, Hammond, & Gailey, 2007, p. 442). Other acquired disabilities can produce the same isolation, however.

Physical difficulties can prevent people with a mobility impairment from creating social networks. Even the weather can keep some folks with mobility issues away from others. If you have a power wheelchair or scooter, you do not want to go out in the pouring rain or blistering heat. Despite the intentions of the ADA, not all places where friends get together are accessible. Whether you are born with some limitations, or acquired them later in life, disabilities or chronic illness may result in feelings of loneliness and isolation, and a lack of access to support information (Matt & Butterfield, 2006).

Not As It Seems

Not all decisions to RSVP to invitations with a “No, thank you” are because of isolation, however. Friends and relatives need to understand and trust that sometimes? Those “no’s” are not a pity party nor decision to pull back. I don’t go to pool parties. I have technology that cannot get wet and a husband who cannot be in the heat because of having one kidney. (And have you picked up yet that THE MAN CAN’T SWIM?) Sometimes there are very legitimate reasons for declining an invitation. A person may not be able to do evening gatherings because they have legitimate needs for an early night. Folks with disabilities and chronic illnesses often require more sleep than the average adult. It is not always possible to nap the afternoon before in order to go to some evening “shin dig”. Some people have to offer late apologies to activities they had planned to go to… but they have a “flare” when it comes time to prepare for an outing of fun and fellowship. The weather gets the final say for some of us. I can agree to go to a “Girl’s Night Out” a week in advance, only to have a weather system move in to where I can barely move in an upright position.

But…

I have also fudged about going to things I really could have had I really wanted to attend. Sometimes we say “no” because that is

EASIER or

HABIT.

We have to learn to police ourselves and ask ourselves some legitimate questions when our first impulse is to decline an invitation.

Social Networks

Nothing gets on this female’s nerves more than when I hear someone ‘pooh-pooh’ social networks like FaceBook, My Space, Blog networks, online support groups, and message boards and forums. I have heard holier-than-thou folks spout that these avenues “aren’t real people” and therefore are not “real relationships”. Drs. Patricia Obst and Jana Stafurik refute this much better than I can. “Online we are all able-bodied“. Online there is a “psychological sense of community and social support found through membership of disability-specific websites” (Obst & Stafurik, 2010, p. 525). These researchers looked at 160 different individuals who had various disabilities or chronic illnesses. “Results indicated that users did receive moral support and personal advice through participating in such online communities. Further, results indicated that online social support and feeling a sense of community online were positively associated with participants’ well-being in the areas of personal relations and personal growth” (Obst & Stafurik, 2010, p. 526).

I am always thrilled to have guest writers here on Hearing Elmo. (Interested? Email me at denise.portis@gmail.com). This forum has provided information and support to individuals “living it” and to family members and friends for information. I have been invited to write in other forums and welcome the opportunity. Ever heard the phrase, “dissemination of information”? The Internet makes us equal. It provides an easy, inexpensive way to find support, learn, advocate, and connect.

It can also serve as an avenue in which a warning comes through loud and clear… even to those of us who are late-deafened.

Are you avoiding outside activities?

Are the reasons you are doing so legitimate?

Are you connecting with others?

Are our decisions prompted by necessity or the result of anxiety, depression, and an attitude of giving up? These are important questions to ask ourselves. Please don’t find yourself adrift on an ocean with the shore out of reach. Ask for help. Discover a hero swimmer on their way to rescue you.

Denise Portis

© 2012 Personal Hearing Loss Journal

Barlow, J., Turner, A., Hammond, C., & Gailey, L. (2007). Living with late deafness: insight from between worlds. International Journal Of Audiology, 46(8), 442-448.

Matt, S. B., & Butterfield, P. (2006). Changing the disability climate: Promoting tolerance in the workplace. American Association of Occupational Health Nurse, 54, 129–134.

Obst, P., & Stafurik, J. (2010). Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal Of Community & Applied Social Psychology, 20(6), 525-531. doi:10.1002/casp.1067

How Important is it to Prepare?

With family in Colorado dealing with the fires, and our own area’s recent experience with widespread power outages after a “land hurricane”, disaster preparedness has been on my mind lately.

Isn’t it crazy that we don’t think to plan for something until it actually happens? Then we get some things together for the next time, only for a decade to go by before it repeats itself. By that time batteries are dead, water is stale and evaporated, and extra dog food has turned to powder.

Preparing can be expensive too; something most of us have difficulty budgeting for should a disaster occur. Yet, little by little we CAN get together some essentials. Purchased over time, these items may be less of a punch to our weekly budget for food and other essentials. If you dislike gathering things together for a price, disaster preparedness kits can be purchased at stores or online.

What to Put in a “Kit”

You can find numerous resources online with information about what to put in a disaster preparedness kit. You may have to prepare with numerous people in mind, or even numerous pets. According to the experts it is best to have a kit on hand that can be picked up and taken with you in the event of an emergency – fire, hurricane, or flooding… things that can be predicted to some degree as the result of early warning systems in the area.

With power outages, however, you may need a bigger “kit” for numerous days. Power outages can be planned as the result of city construction or tree removal. Most of the time though? Power outages are an unpleasant surprise. Causes can range from results of mother nature at work, or a hubby at work with a shovel and a poor attention span.

72Hours.org has some terrific ideas in what to put in a disaster kit. You can access the site HERE. FEMA and Ready.Gov has some additional plans and ideas at their site. These include how to let friends and loved ones know where you are and how you are doing. You can access these plans HERE. The ASPCA has some wonderful ideas and plans for those of us who may have service animals and other family pets. You can access that information HERE.  The Red Cross has some additional ideas for pet owners HERE.

The key is to BE PREPARED. When my family and I experienced 36 hours of no power in 95 degree heat, it isn’t something we decided to do for FUN. It was an unexpected and unpleasant surprise. We had plenty of water and gas in our cars, but could not even leave the house at night in sweltering heat because of numerous pets that needed attention, supervision, and assurance. We holed up in the basement and did our best to keep everyone calm and as cool as possible. Because I shop at Costco, when I buy batteries, I buy A LOT. But I wasn’t keeping close tabs on what sizes we had, and our flashlights and lanterns were scattered all over the place. (The power outage began late at night after the sun had gone down). I discovered after doing a little investigating after the power returned, that generators are expensive. They can also be dangerous to operate if you do not know what you are doing. Yet after our experience, I started a “generator piggy bank”. It may take us YEARS to have enough to actually buy one, but imagine being able to run some fans and keep the refrigerator running during a long-term power outage?

I welcome additional ideas our websites that may help folks prepare.

Disabilities or Health Issues?

As a person with disabilities I was prepared BY ACCIDENT. I purchase cochlear implant batteries in bulk once or twice a year. Thankfully, my cochlear implant is NOT the type that uses rechargeable batteries or I may have been deaf as well as sweaty! I noticed that because of the excessive heat, my balance was worse than usual. I was unprepared for a SUNNY day to be staggering around as if it were a rainy, overcast day. My husband who only has one kidney, was especially fatigued and weak because of the heat. I had friends that were unable to power their scooters that they use for mobility purposes, but their manual wheelchairs were in storage! These kinds of things can make a difficult situation much worse.

If you have special needs of ANY kind, be sure to take these into consideration when you do your planning. Because we are all aware of how important that planning is, right? (GRIN)

Denise Portis

© 2012 Personal Hearing Loss Journal