Folding Fitted Sheets and “Good ‘Nuff”

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My newlywed daughter bragged to me recently that her husband can fold a fitted sheet. Pressing for details I found out that he evidently can fold them where they are laying flat.

… like they just came out of the package.

… making Martha Stewart proud.

I think I hate him (just kidding…)

I’ve seen various videos, blog posts, articles and pictures explaining how to fold a fitted sheet. I once saw a 5 step-by-step diagram of how to fold a fitted sheet on a beautifully laminated bookmark.

Because evidently we worry about that while reading…

Evidently a newly laundered fitted sheet can look like this after folding...

Evidently a newly laundered fitted sheet can look like this after folding…

As a student and professor of psychology, it is fun to “look back”. Although I didn’t know it at the time, I definitely had OCD (Obsessive-Compulsive Disorder) as a kid. I’ve given some examples of things I would do to help me feel like I was coping and controlling in class before that made jaws drop. OCD can look different lived out in different people. For me, it meant ordering, organizing, labeling, etc. I had a full-size bed growing up with bright yellow “sunshiny” sheets. I’ve often wondered how that young, OCD Denise dealt with folding fitted sheets. Because you see? I can’t. 

Fold fitted sheets I mean. I must have gotten around that by only having one pair of sheets. When laundered, they went right back on the bed.

I’ve come a long way from that OCD Denise. Now some of you who know me WELL are saying to yourselves, “Honey? You’ve still got a long ways to go!”

But to give you an idea about how far I’ve come, look at the fitted sheet I folded this morning straight out of the dryer. As a matter of fact, I have my very own 5 step-by-step instruction guide:

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1. Remove from dryer and hold up high to avoid pet fur.

2. Shake to allow dryer sheets to fall to the floor.

3. While holding up high, match corner to corner.

4. Fold.

5. Admire work. It ain’t purty. But it’s GOOD ‘NUFF.

Stacked in a linen closet, it does not take up anymore space than one folded perfectly. At least… that’s what I tell myself. You see? I had to learn something. Sometimes you pat yourself on the back, murmur, “Good job!” and go on to something else. It’s “good ’nuff“. The sheets are clean, stacked neatly and await being put in use for the next time I change the sheets out.

Allowing a Fitted Sheet to Rock Your Boat

So when do you determine by reviewing your priorities, when to keep at that “fitted sheet” or when to determine it’s “good ’nuff”? Only YOU can decide.

I’m pursuing a Ph.D. in Psychology. I’m over half-way through and doing well. However, now I’ve reached the detailed statistics phase. And folks? I haven’t had statistics since the 80’s and long before the sophisticated analysis softwares were available. This past week I hit a wall. I mean that both literally and hypothetically. I have been staying up really late reviewing videos and media, reading, Reading and doing more READING, learning SPSS and writing like crazy. As a person who lives with invisible disabilities that include post-concusive syndrome, hearing loss, and Meniere’s disease, I require 8-10 hours of sleep each night just to live a “normal for me” day. I’ve not been getting that. I’m almost cross-eyed with fatigue. So this past week, falling more than usual as a result of that fatigue, I walked into my husband’s home office, showed him a new bruise from hugging a wall with ridiculous and unbridled passion, collapsed on the floor and bawled my eyes out. Do you know what my very wise husband reminded me? “You may not be understanding all of this. Just keep plugging away. By the time your dissertation is complete you will look back on this and realize you are very knowledgeable about your research and understand it well. For now you are doing ‘good enough’ and passing. You don’t need perfection at this stage“. Sometimes we have to “let go” of needing something to be perfect and accept that it is “good ’nuff”.

This past week a lady who has admired Chloe several times sat behind us in church. She leaned up and said something and honestly? I caught about 10% of what she was saying. (In case that doesn’t sink in, I was missing 90% of it <big grin>) I already had my cochlear implant on a special program to utilize the hearing loop in our auditorium. I’m one of the first people to tell folks new to hearing loss, “Don’t fake your way through a conversation“. However, it was obvious she was just saying something about Chloe again. She had a smile on her face, and I was set up to hear through the loop, not someone sitting on my “non CI” side and behind me. So I smiled and nodded my head and turned back to the front. Yup. Poor form on my part. But…

I have learned that if it is important and I responded with a smile inappropriately, someone will respond with a shocked or hurt look, confusion, etc., and I can hasten to explain I wasn’t hearing well. I didn’t see any of that on this lady’s face. She smiled, I smiled, and I determined then and there this “fitted sheet didn’t need to be folded perfectly”. For a few minutes I sat there thinking, “I have no idea what she just said!” I re-analyzed what I saw on her face, her indication of Chloe in a perfect down/stay and sleeping at my feet, a returned smile and decided, “You know? This fitted sheet (conversation) is not folded properly, but it is good ’nuff“! I brought my attention back to the service and felt OK about my decision.

This past Saturday, a fellow client from Fidos For Freedom rolled up to me in her scooter with service dog at her side. She has been with Fidos longer than I have and I consider her a friend and mentor. Another friend of mine and fellow client, Cara, is taking ASL (American Sign Language). She has been practicing her ASL with me during trainings. She is doing great (You rock, girl!). Cara noticed that I was talking to this other client who at times is hard to understand – especially when you have a hearing loss. Cara stopped behind the lady I was talking to and I know she was hesitating to see if she could interpret for me. I wanted this fitted sheet folded perfectly. I said, “I’m not catching what you are saying“. No faking nor presumptions on my part. This fitted sheet needed folded the right way because it was important to me. I love this lady and wanted to “hear” what she was saying. So she got out her little electronic board and began writing. It was what I needed to “hear” too. Cara waited long enough to see if I was “getting it” and then went on her way. I continued to communicate with this lady and left that conversation encouraged and with some great advice. I needed to hear her. I worked to hear her. She worked to communicate with me. Good ’nuff, wasn’t good enough. I needed to communicate 100% effectively with her. So… I did.

Living with invisible disabilities or chronic illness means that YOU have to decide what your priorities are and when to determine a task is “good ’nuff”. Only YOU can determine when you need to make sure something is accomplished to your satisfaction – to your personal standards. There are things you will decide to do that require work. It may mean you use up all of your reserves for the day. If you are into the “spoon theory“, you use every single one of your spoons. There are other things that happen during the day that result in the decision that, “this is good enough”. The worst thing you can do is stubbornly work at folding a fitted sheet that belongs to someone else. Worse, you allow someone else to bully you into re-folding one that you already decided was “good ’nuff”.

Are you one of those (annoying) people who can fold a fitted sheet perfectly? Well:

If-you-can-fold-a-fitted-sheet

 

Denise Portis

© 2014 Personal Hearing Loss Journal

False Coping Skills and Elephants

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Hound dog knows when I’m “finished”

Ever wake up just feeling completely whipped?

I feel like I’ve developed GREAT coping skills. After all, you either learn to cope or you’re “done”. So the options are pretty clear cut IMHO. Two coping skills I learned early on in adjusting to my “new normal” as a person who is “differently abled”, include:

1. Start each day new. Yesterday is gone. Tomorrow will come without my worrying about it now. Handle today and today only.

2. Stay busy. Staying busy helps to keep your mind off your troubles and focus on the here and now. It can be busy-ness towards important things, or even the mundane.

The second one I use a great deal, but I’ll be honest. It isn’t exactly a HEALTHY coping mechanism. I don’t do well with a lot of down time. A perfect day for me is getting up (safely – believe me, it can be hard when you have a balance disorder and go VERTICAL for the first time that day), taking my dog for a walk while planning my day, re-enter the house in high gear without stopping until bedtime.

Yeah. Not always healthy. The problem with staying BUSY in order to cope is that it is a false kind of coping. This type of coping skill isn’t actually a coping skill at all. It is called avoidance. And friends? I do this really well. Some of you do too. (You know who you are…)

Staying Busy to Avoid

Do you “do busy” really well? It may be time to stop to discover WHY you stay so busy. Do you strive to remain busy to avoid unpleasant thoughts, actions, environments, even people? Don’t confuse healthy boundaries with avoidance. One is – well… HEALTHY. The other? Not so much. As a matter of fact, avoidance can lead to a number of physical and emotional problems. Psychologists have recognized avoidance for what it is for decades now. Yes, in the right context it can be healthy. But it is easy to AVOID to the point of harm. Spira, Zvolensky, Eifer, and Feldner (2004) explain that being busy to avoid our problems is actually a predictor of panic disorders. You see? The problem with staying busy to avoid something is that eventually you really will run out of things to do. Worse? Your body physically screams, “ENOUGH ALREADY!” and shuts down.

I am finishing up the last of numerous classes in my doctoral work and have already begun the very long process of dissertation study. This work keeps me really busy and it is work I actually enjoy because psychology is what I “do”. I work part-time as an adjunct professor and this helps to keep me busy. I love my work, love my students, and love to teach. The problem with working as part-time faculty at a community college is that it is impossible to predict how many courses you will be teaching semester to semester. For example, I taught the first summer school section, but not the second. I used the extra time in the beginning to catch up on some of my own school work and to do some “Spring cleaning” that had been long delayed… seeing as how it is SUMMER. These past few days though I’ve found I have had some down time. *grimace*

Forced Mindfulness

When I am forced to the point of literally running out of things to do… even for just a day or so, I find it debilitating.

Scan 3

Whoosh.

(Hear that? That was the air being sucked out of my lungs when the elephant in the room finally sat. On. My. Chest.)

I don’t do “mindfulness” well. I’m learning though.

Brown and Ryan (2003) explain mindfulness as being AWARE and ATTENTIVE. Let me explain on a more personal level and maybe you can “see” yourself somewhere in this:

Avoidance:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time.

I work at a job I love and navigate life safely with a service dogMost of the time.

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I have taken control of chronic depression and don’t let it control me. Most of the time.

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

Truthfulness:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time. 

Some days having a CI and Meniere’s disease sucks. I don’t hear perfectly. I feel left out. I’m tired of falling. I’m tired of running into things. I hate long-sleeves and high collars since they only hide bruises. I’m tired of adjusting. I’m going to cry. I’m going to scream. I may swear. 

I work at a job I love and navigate life safely with a service dog. Most of the time.

I love my job but it is really hard when the hallways are crowded. It can be overwhelming to have to rush from one side of campus to another. Crap. It’s raining? Really? *waves white flag*

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

Sometimes I want to change my “… I’m fine, how are you?” to “I’m having a sucky day. And frankly? I don’t care how you are doing if you want to know the truth!!!!”. I’m going to have to ask for help. After all, Chloe cannot 1) retrieve a bag of dropped potatoes in the grocery store, 2) pick up that tiny paperclip without risk of swallowing it, 3) get the umbrella I dropped in a puddle without getting really muddy, 4) tell me EVERYTHING WILL BE OK.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I can lay in bed and worry. 

I have taken control of chronic depression and don’t let it control me. Most of the time.

It’s hard when I have to “own” the knowledge that I will always “deal” with depression. 

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

uh-huh. Ri -i -i -i -i -i…ght.

So yeah, sometimes I’m forced to pay attention and be aware. How is that helpful? Well, for starters attentive awareness facilitates choices of behaviors that are consistent with my needs, values, and interests (Brown & Ryan, 2003). It is healthy to really navigate personal feelings, thoughts, and even pain. David Cain wrote about mindfulness in a way that really “stuck” with me. It changed the way I view “forced attentive awareness”. Check out this great article, “How to Make Mindfulness a Habit With Only a Tiny Commitment“.

For me, mindfulness means being truthful with ME. I am learning to be mindful even when I am super busy. I do this because there will be days I am NOT busy and I want mindfulness to be an invited friend instead of unexpected guest. As a person of faith, it is also super helpful to be frank with God. In doing so, I am actually able to recognize false coping skills that in the long run are not healthy for me.

I’ve heard some folks say, “Oh golly. I can’t go there and allow myself to FEEL. You don’t know what I’ve been through“.

No. No I don’t. But I do know that pretending those feelings don’t exist do not change the fact that the elephant is THERE. At some point in time it’s gonna sit. On your chest. You won’t be able to breathe.

Be Mindful of Your Pachyderm

It is healthy to habitually and mindfully pay attention and be aware of what and who you really are. What are your struggles and successes? Where have you been, where are you now, and where are you going? Who is helping you get there?

What is really hard for you? What have you learned to do well? What do you need to change?

WHO ARE YOU? 

Don’t pretend that being mindful is the same thing as having your mind full. The latter is just another form of busy-ness on the cognitive level. Be attentive. Be aware. Do this with enough frequency that you can be mindful each and every day – for even just a few moments. I make it a priority to be mindful for a longer period of time – like a whole DAY, at least once a year.

But the elephant “sat” without invitation for me this past week. It took me by surprise. That is going to happen. However, if you’ve practiced mindfulness, you are going to discover…

YOU CAN BENCH PRESS AN ELEPHANT.

Denise Portis

© 2014 Personal Hearing Loss Journal

Brown, K., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological well-being. Journal Of Personality And Social Psychology84(4), 822-848. doi:10.1037/0022-3514.84.4.822

Cain, D. (2013). How to make mindfulness a habit with only a tiny commitment. Rapitude.com. Retrieved July 20, 2014, from http://www.raptitude.com/2010/03/how-to-make-mindfulness-a-habit-with-only-a-tiny-commitment/

Spira, A. P., Zvolensky, M. J., Eifert, G. H., & Feldner, M. T. (2004). Avoidance-oriented coping as a predictor of panic-related distress. Journal of Anxiety Disorders, 18(3), 309-323. dii: 10.1016/S0887-6185(02)00249-9

Everything you ever wanted your audiologist to know…

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Hearing Elmo always welcomes guest authors. Although this site is a place of information and support for all types of disabilities and invisible illnesses, once in awhile an author has a very specific “hearing” topic. I know few individuals with more consumer experience with hearing loss advocacy and support than Judy Martin. She is my friend as well and fellow “heartstring” (a long story). If you have a good working relationship with your audiologist, this is a great article to pass along! 

Everything you ever wanted your audiologist to know . . .

Late last year, the Florida Academy of Audiologists (FLAA) and the Hearing Loss Association of Florida (HLA-FL) formally agreed to a partnership to encourage a fuller understanding of each other. Articles are planned for each other’s newsletters; Noel Crosby, my counterpart in FLAA, suggested my topic describe what consumers would like their audiologists to know.

– Judy G. Martin, Immediate Past President)

As I stand in front of my imaginary class, I’m aware that all the people in attendance have some degree of hearing loss. Some use hearing aids, cochlear implants or assistive listening devices. Many proudly display their multi-colored devices while others are more discreet – each according to their needs, wishes, or personality. We are brought together by one commonality, though, the desire to hear better. For some, it is an old journey, and for others a newly-begun one.

This class may be the figment of my imagination, but it is filled with real people from around the country. Inspired by one person’s remark of what the perfect audiologist would be like (thank you, Paul), I ask “students” to discuss how their provider could be the most helpful as far as their hearing loss is concerned. (Of course, we would be willing to know how we can be the perfect consumer, a subject for another time.)

Paul, from Michigan, speaks up first and says his idea of perfection would be the audi who is knowledgeable about Hearing Assistance Technology (HAT); about the t-coil and the ways it can be used; and at least some familiarity with Bluetooth and FM; and where to find products to assist with telephone, cell phones, TV, meetings and communication. If a hearing loop is set up in the office, he would be able to hear the receptionist. If not a loop, then a willingness to let him make and confirm appointments via e-mail. This perfect person would be compassionate and willing to share information about the ADA, hearing loss groups, and hearing loss counselors. Many first-time hearing aid users are at the beginning of a scary learning curve and in a vulnerable position. And finally, he or she could be proactive in helping him to understand the fitting and adjustment process.

Jimm, who lives in New York, has a short and sweet idea: his audiologist would make the perfect earmold!

Having a receptionist who doesn’t whisper is the fond wish of Betty, from Delaware. Soft- spoken office workers, or those who don’t face the patient, strike terror in the hearts of those with hearing loss. Hearing loss-related news and magazines (especially, ahem, the HLAA Hearing Loss Magazine) would be quite beneficial when placed in the offices of audiologists and ENTs.

Sarah, Illinois, agrees that hearing loss information and magazines are so important in addition to helping find outside support groups. She also wishes that audiologists were affiliated with HLAA or a local chapter. Sarah suggests that attendance at an HLAA Convention would be beneficial as it is totally patient-oriented, in that everything is seen from the viewpoint of the consumer. She believes a little more explanation of what to expect when purchasing a hearing aid is something that would be helpful to her or knowing the importance of adjustments. (A journal kept by the consumer would be helpful here, making notes on what noises are bothersome, which need to have volume increased or decreased.)

Making sure that every hearing aid, unless it’s too small, leaves the audi’s office with a manual t-coil included. Since the t-coil can at least double the benefits of the aid, Germaine, a resident of Florida, says it’s important it have a volume control. Automatic volume control works well in many cases, but too often the experienced user wants and needs to override the control – a combination of both would be good. All that said, since t-coils are used with phones, both landline and cell, looping technology, FM, Bluetooth and other assistive listening technology, no self-respecting hearing aid should leave home without it. She hopes that the hearing instrument provider’s office will have copies of HLAA’s consumer checklist for purchasing hearing aids.

Laura, in New Jersey, agrees and also wishes that the importance of manual t-coils be uppermost in everyone’s mind.

Jennifer, from Pennsylvania, wishes the idea of hiding hearing aids was not promoted because it adds to the perceived stigma. Advertising which promises invisible hearing aids works at cross-purposes with HLAA’s mission to provide awareness of our invisible disability. She also thinks that more familiarity with the BAHA device for persons with single-sided deafness will guide those for whom the traditional aids won’t work.

Richard, who resides in Florida, believes a high number of hearing aid consumers are not conversant in discussing or understanding their own audiograms. Much of the relevant information available is written on a level beyond the comprehension of some consumers. Perhaps a brochure or flyer could be created to explain to all so they would understand their own degree of hearing loss and become audiogram literate!

From Montana, Tamie seconds the motion that professionals be educated about the importance of t-coils. She reached that conclusion when a new audi in town donated headphones for those with hearing loss to a local live theater. They were the kind which required the removal of one’s hearing aids.

Audiologists provide an invaluable service in the treatment of hearing loss, says Ed from Florida, but he wishes there was more proactivity in the education and advocacy process. It would be so helpful for the audiologist to initiate a discussion about hearing loops, captioning, cell phone usage or the Hearing Loss Association of America. Suggesting to new patients, who obviously need support, that they try a local HLAA chapter would help eliminate much bewilderment. It would be desirable for audiologists to take the lead on important advocacy missions such as being the first to install a loop in their offices. He goes on to say that since so much of his support comes from HLAA and other outside sources, he wishes treatment could be seen as a team sport because so much support is needed.

Also from Florida, Joan thinks audiologists could tell patients they need an aid large enough to accommodate t-coils even though the user may think differently. Spending time explaining why this tiny device is so important and how some of the applications of the t-coil will benefit the user is greatly needed. Hearing in noise and recruitment are two major problems professionals can explain in laymen’s terms even before the patient is troubled by them. If audis sell equipment such as FM and Bluetooth systems, it is imperative they be able to instruct patients in their effective use. Finally, Joan wishes that professionals would tell users about HLAA and the availability of a local chapter. She doesn’t believe that any audiologist today is unaware of the value of support groups for their patients.

Judy from Ohio said her ideal audiologist would keep current with the latest news and devices. She suggests joining a consumer online forum to learn what’s on the mind of people who have hearing loss. Judy sent her hubby (a newbie) off to have his hearing tested and when he inquired about t-coils at her behest, he was told that “they are not being used much any more because people are getting away from that.”

Cheryl, who lives in Florida, takes a different tack and says consumers should realize it takes patience and perseverance to use a hearing aid and a good result comes from numerous adjustments. Hearing aid users should not put their aids on the shelf or in a drawer as they need to be used daily. She also believes the consumer should know about the t-coil, how it works and where it works.

California resident, Cindy, hopes the high cost of her devices would include minor technical service, adjustments and guidance for a specific period of time. She would appreciate the audis being knowledgeable about the products they sell and being able offer instructions about warranties. She’d like it if the professional would listen to her, ask her questions and know that, in her eyes, they are as important in her life as her primary care physician or her eye doctor. After being successfully fitted, Cindy would like repairs to be made as quickly as possible even if returning them to the manufacturer is required.

Programming aids according to the user’s needs and real world feedback, not factory- recommended settings, is the wish of Tamara, who lives in Texas. She hopes they will take the time to share their knowledge about t-coils and the less expensive non-proprietary assistive listening technology. Further, she would like to be instructed about financial assistance, payment/ financing options and government assistance programs. To her, it would be extremely beneficial to offer listening therapy, living-with-hearing-loss classes, education for spouses and family members in addition to giving advice on support groups which would address the social and emotional factors.

My imaginary class ends on a high note with everyone agreeing that hearing loss professionals cannot be all things to all people. They believe that most audiologists are already well-rounded in their knowledge and possess a willingness to help. These suggestions are offered in hope that they might help fill in the gaps.

by: Judy Schefcick Martin

 

 

TONS of Demerits = Life Turning Point

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I went to a Christian University right out of high school. I lived in a small rural farming community with no Christian colleges nearby so I thought that I may as well go to the one my parents attended … 5 states away. What I didn’t realize, is that little had changed in the 25 years since my parents went there. Rules, regulations, and unequal criteria for males/females were still early 1960’s. If I had it to do over again, I would have transferred out after I met my husband-to-be my Freshman year. He was smart and he did that. I’m stubborn though and wanted to finish where I started. I remember the first week when I received my first demerit. I still have every demerit I ever received. Back to that in a minute…

Some Background

You see? In high school I was “the weird one”. I had some close friends, which coupled with my dream of “leaving forever”, was part of the reason I survived high school. I grew up in a legalistic, religious background. It was a loving home… and most of what I experienced I wouldn’t change because I’m sure it is a part of who I am today (and I happen to like who I am today). However, in high school I was not allowed to do anything OUTSIDE OF SCHOOL. No “dragging main” on Friday and Saturday nights. I wasn’t allowed to date until I was 16 years old, and by the time I hit that milestone everyone thought I was “weird”. I didn’t get to go to movies or dances. I got really tired of people thinking I felt as if I was better than everyone else, when the boundaries put in place were not of my choosing. I was bullied. I’ve never really talked about it to many people. Classmates would probably be shocked if they knew some of the things that happened to me when I was caught in the gym alone, or in the hallway on the way to Study Hall. One of my bullies (a second cousin one year older) would actually follow me into the bathroom (he was male) and shove me around just for kicks. Another bully, also one year older, not only shoved me around and called me names, but he pinched private parts, threatened me with horrible death threats, and basically made my life hell. I would just see him coming and start to have a panic attack. I learned to duck into safe places like the office, or favorite teacher’s rooms “just to say hi” to escape an encounter with him. One of the things he constantly pounded (quite literally) into me was that I thought I was better than everyone else because I was so “holy”. This is the baggage I took into college with me <smile>!

Yay! A Demerit!

By the time I was 18 and started getting written up (for really ridiculous things), I began to really excel at breaking stupid rules. Sure, I got a LOT of demerits but I did plenty of things I never got caught for either. I don’t say that in a bragging way. My point is that I really was proud of having proof on paper what a “rebel” I was. I even sat through some “sermons” from hall monitors and dorm mothers because of what my last name was. My family name was known at this university and they couldn’t believe I wasn’t behaving “perfectly”. I got married young and tease my husband that it was “just to get out of the dorm”. I even received some demerits after I said “I do“… for sitting to close to my husband in chapel. *rolls eyes* But ya know something? I hung on to every single one of those demerits because they were important to me. They represented a turning point in my life. I finally realized as a young adult that I could make decisions about what I would – and wouldn’t do – by myself. I really filled my lungs deeply with the freedom of that feeling! Demerits were received for not meeting someone else’s expectations. Now I could determine what my own boundaries were, what my expectations were for my own life.

I’m a person of faith (and haven’t tried to hide that on here), but I like to think I really live my faith and am a REAL person. Life isn’t about rules and regulations. Nothing wrong with some of those as they keep us on track, help us reach goals, and provide security. However, these rules and boundaries are only good when they set us free, not when they cripple us. Trying to follow someone else’s rules will only get you a box full of demerits. You have to believe what you live and live what you believe.

Life Turning Point

My college experiences and changes set the stage for how I handle life today. It was a turning point for me. I stopped apologizing for who I was, and felt comfortable in my own skin because *I* had made decisions and set standards for myself that I approved of and felt comfortable with as well. If someone didn’t like what I did, I gently (OK, sometimes it wasn’t gentle) argued that I respected their choices, so they should respect mine. I learned to be responsible for ME. I wanted to live a transparent, REAL kind of life, and wanted to make a difference because of that “realness”.

I had single-sided deafness from a car accident at the age of 6-years-old. I had my last ear surgery at the age of 18. I STILL think it took us all by surprise when I developed rather rapid, bi-lateral,  progressive, sensorineural hearing loss after the birth of my kiddos. At the same time, I developed Meniere’s disease (although I didn’t know what it was at the time). I determined early on what kind of “person with disabilities” I wanted to be. I would be responsible for who I am and how I cope. My top TEN decisions that turned my life around:

1. It is OK to grieve. It is OK to scream.

I learned how important it is to give yourself permission to FEEL. Bottling up those feelings only leads to physical and emotional problems.

2. Discover your “safe people”.

I’ve blogged about this before. However, find who is “safe”; cherish and nurture these relationships. (Some of those posts are HERE, HERE, and HERE.)

3. I can “be deaf and have a balance disorder” however I want!

Disability and invisible illnesses are often unique and you may not share exactly the same symptoms as another. Own who you are. Do what makes you comfortable with your “new normal”. For me this means bling-bling on the cochlear implant, bright canes and assistance dog. I am far better served to make the invisible, visible.

4. When necessary, get professional help.

There is no shame in seeking help. Finding a trusted, objective professional can be very beneficial for a variety of reasons. If you aren’t happy with who you are seeing, find someone else.

5. When necessary, ASK for help from others.

There is no shame in asking for help when you need assistance. I have never had anyone turn me down if I ask for help getting to my car, or to help me identify what sound Chloe is zeroed in on. In spite of the negative headlines, most people are nice. Most are glad to help when asked and feel good about offering assistance. (There is a trick to this though – you DO have to ASK. If you are an independent peep like me, folks have learned to wait to see if I ask for help).

6. Believe you can make a difference.

I don’t care what your limitations are. I have never met ANYONE that didn’t have a way to make a difference – to be a catalyst for positive change. Our disabilities don’t limit us – WE limit ourselves.

7. Avoid negative people.

We all have these folks in our lives. But you can limit your interaction. Set boundaries. Protect yourself.

8. Dream big. Have goals.

Just because special challenges “rocked your world” doesn’t mean you can’t have short-term and long-term goals. Your attitude is the only barrier to achieving these.

9. Write. Share. Take photos. 

Thinking is great. I recommend THINKING. However, the single most powerful tool I have is my writing. I know others who draw, take pictures, or attend support groups and share. Make sure your “new normal” is something tangible, something you can look back on and identify and recognize change.

10. Don’t work at meeting someone else’s expectations.

If you haven’t learned this already, here’s a news flash. You can’t please everyone. It is healthy to have expectations for yourself, but those alone are all you should work towards.

Have you ever received “grief” for not following someone else’s directions about how to live your life? As a kid, this is OK because we need older (and sometimes wiser) folks to give us direction and instill good habits. But as an adult, you are responsible for you. Don’t apologize for choices you have made. If you deal with your challenges a certain way and it works for you, pat yourself on the back. Be careful though. Like ALL people, we can become focused on self. That isn’t what I’m trying to encourage here. We need other people. Don’t isolate yourself and say, “to heck with the rest of the world”.

Denise Portis

© 2014 Personal Hearing Loss Journal

 

Does Your Butt Glow?

lightning bug

Do you love insects? Crazy about science? Get a thrill over cReEpY cRaWlIeS? Were biology and zoology courses your favorite?

… You may not want to keep reading. No seriously. This post is about as far from scientific as it gets. I’d hate to give you heartburn, so all y’all who are entomologists at heart need to just exit this website and visit me again real soon. <smile>

Whether you call them lightning bugs or fireflies, chances are you have seen them. Actually, I don’t recall growing up around fireflies so they must not be indigenous to southeastern Colorado. I would see them when I visited my grandparents in Ohio during the summer, and then I saw them all the time when I moved to the South. It wasn’t until I had kids though that I really began to think about fireflies. Kids ask the craziest questions and it make us think. “Mom, how do their butts glow?” As this was right before the Internet had become available in household homes, I had to pack the kids up and go to the library. If you are younger than 30 you may not know what that is (a library, I mean). I found a number of books on these bioluminescent insects and the kids and I studied up, becoming pretty knowledgeable about fireflies. Their butts are not actually what light up – it’s their abdomen. However, from our vantage point? It clearly is their butt. There are thousands of types of firefly species, but the kind we have here look like this:

firefly2

After we figured out the HOW, the kids then wanted to know WHY. Scientists think fireflies light up for three primary reasons. 1) To find a mate. Each species has a specific light, pattern, flash intensity, and chemical. Fireflies can tell by the flash who is who. 2) To warn others they taste nasty – especially in the larvae state. This helps everyone. The predator is warned off that this larvae is toxic, and the larvae keeps from being munched on – win/win! 3) To communicate. Two species actually flash in unison – a firefly CHORUS. It only happens in southeast Asia and in the Great Smoky Mountains National Park. They time the flashes so that it all happens at the same time… in UNISON. Can you imagine? Thousands of fireflies flashing in UNISON! It can light up an entire meadow!

Does Your Butt Glow?

One of the frequent topics of emails from readers is that of INVISIBLE disabilities or illnesses. Some argue that the fact their illness is invisible, works to their advantage. (I’d LOVE for some of these folks to write for me because I love various opinions). I’ve always been an “out of the closet” kind of person about my disabilities. Well, I take that back. In the very beginning, I was not. It wasn’t until I had a series of encounters with people who didn’t know I could not hear, that I learned to make it visible. I’ll never forget the first time I was knocked out of the way because I didn’t hear that someone needed to get by me. So it started with little magnetic badges that said, “Please face me. I read lips.” This was an advocacy FAIL. People would read the badge and then loudly and with exaggerated enunciation talk to me with a pre-school vocabulary. By the time I had hearing aids, I decided to have super colorful ear molds. Shortly after that I started adding bling-bling. By the time Meniere’s disease had really become an entrenched part of my daily challenges, I had bright chrome-colored canes, blinged-up gadgets and a large service dog. For me (a very personal decision) making the invisible – VISIBLE – benefited me. I suppose you could say my butt glows. I didn’t need to find a mate, but I discovered my openness drew other like-minded and similarly challenged people to me. People who also had hearing loss or balance issues felt comfortable asking about my own struggles – not in an intrusive way, rather… a “HEY! Our butts glow the same!” kind of way. Total strangers would stop and ask me about cochlear implants, canes, and service dogs.

Because my butt glows, predators know I taste nasty.

Yeah. That needs further explanation.

Some people are uncomfortable around people who are differently-abled. My openness lets those folks steer clear. I see them in my peripheral sometimes. That’s ok. I’m not contagious but I totally understand that some people are not comfortable around people who are different. It isn’t my goal to ram my disabilities down another’s throat. My “flash” is different and I “get” that our butts glow differently. Some people steer clear because they don’t think I should have a service dog, or should even be out and about. I was at a Rite-Aid once when a store employee asked me why I’d go out with a service dog. When I told her all the things Chloe can do for me (and that it was my right to have her in public places), she said, “Why don’t you stay home where you are safe?” I was stunned. I told her that I had a life, and I was going to live it… even if it meant I live it having to do things a little differently. So some predator kind of people see my glowing butt and are warned off. I’d rather them steer clear than come up and take a bite out of me. I bite back.

I also buff my glowing butt and make sure the wattage is at maximum levels to be a good advocate. Before I started being open about my invisible disabilities, my ability to make a difference was limited. In a way, my luminescence has made me bolder. I serve on various committees and invest myself in causes that I once did not know even existed. I communicate with my butt glow.

Does your butt glow? Do you live with a chronic condition, invisible illness, or invisible disability? I encourage you to just THINK about being more open about it. Maybe you don’t want to go around mooning everyone with your glowing behind right off the bat. Just consider flashing some “light” once in awhile.

Denise Portis

© 2014 Personal Hearing Loss Journal

 

 

Quiz? AMEN! Are you Cued?

Chloe automatically retrieves a dropped grocery list in the store. I don't have to prompt her first.

Chloe automatically retrieves a dropped grocery list in the store. I don’t have to prompt her first.

This past Sunday, Chloe got up about 1/3 into the service and stood from a down/stay. My husband looked at me strange and raised an eyebrow. I mouthed and also signed, “Amen“. His expression changed immediately. He had forgotten that Chloe cues off of “Amen” and gets up and prepares to stand/brace for me to leave. I’ve never taught her “Amen” means LET’S GO. She figured this out on her own after being with me so long and because we DO go to church on Sunday.

I’ve discovered she doesn’t even need a lot of time to learn to cue on a new word.  I’m teaching a PSY-111 class this summer (Intro. to Psych.) and it is an accelerated class. We go 4 days a week for 2 hours and finish in 6 weeks. I’m trying hard to keep it interesting, fair, and encouraging. These students are really excelling. But… I am having to teach a little differently. Usually I mix it up and have small group activities, lecture, large group activities, special speakers, etc. In this summer school class I have to keep it moving. We do almost a chapter a day! Anyway, Chloe continued to pop up and come to stand by my knee at about the same time each class period. I was like, “Whaaa…?” (I have a way with words, yes?). So finally I said, “Listen y’all… what is she cueing off of? What am I sayin’ that is makin’ her get up?

So my students started watching and paying attention. It only took a day or two for them to figure it out. When I say “QUIZ“, Chloe gets up. Why she has equated that with my needing her, I haven’t figure out yet. But it is always when I say this word.

We Cue as Well

Do you know we tend to cue too? It is usually a defensive reaction. In psychology we call it “contextual cueing”. We do it automatically either from visual cues or audio cues.

I have a hearing loss. I miss things. If I’m tired, I miss things a LOT! Sometimes I cue off the context and “fill in” what I miss. This is implicit memory, for my subconscious is at work filling in what I have experienced hearing in the past. Something that people who are differently-abled or have chronic illness have to battle is jumping to conclusions. Especially if you’ve been hurt or wounded before!

Example: One of the most hurtful things you can say to someone with hearing loss is “never mind“. I’ve been told this enough that I cue off of hearing the words or hearing what I THINK were the words. Someone said this to me recently and I’ll be honest. I went OFF. They turned to me and listened to my entire rant (God bless them) and then calmly said, “Denise, I said I’M OUT OF MY MIND. I couldn’t find where I put that paper”.

oh

In this case, I was standing to her side. I heard what I thought was “never mind”. My experience with these words has never been positive. I went off. Unjustly. Sometimes we jump to the wrong conclusion and like Chloe, get up to help even though we haven’t been asked to do so. Or go OFF.

Example: Not to long ago I mashed the button to call the elevator and waited for it to come to my floor. I watch Chloe’s ears to see when it arrives, because looking up to watch the lighted floor numbers makes me dizzy. Chloe’s ears perked up and I stepped out of the way so that people could exit the now opening elevator. After everyone filed out, I held the door with my body and loaded Chloe and my stuff. As I turned, a man moved as if he was going to get on the elevator, but then stopped, rolled his eyes, and stepped back.

Now I could tell you some stories about people seeing a service dog on an elevator that would make your hair curl. Well if your hair is already curled, it would make your hair straight. I digress…

I’ve NOT had great experiences with strangers on elevators. The man must have caught my look (which made me wonder what the heck my expression must have looked like… I’m guessing PEEVED) and shoved his hand into the closing door causing it to open back up. He said, “It’s not YOU. I forgot something and have to go back and get it. Pretty dog!“, and he stepped back while the elevator door closed on my astonished self and tail wagging dog.

I cued poorly.

It’s easy to do. We have experiences that shape how we interpret the world around us. We on purpose or inadvertently “cue”.

You May Not Like It, but You are an Advocate

You may not like it, but you are an advocate whether you want to be or not. You can be a good advocate. You can be a suck advocate (if so please keep your mouth shut – grin). You can be someone who tries really hard but have not learned to advocate in a positive way yet. You can learn…

My husband is my “wet index finger” held to the wind. Poor colloquial expression choice? Not really. You see he pays attention and warns me if I’m getting “testy”. He knows that my heart’s desire is to practice what I preach. I want to be a positive advocate. I believe it is the only way to influence real change. I may have a week where I’ve had some access issues with Chloe, several people have said, “Never mind”, or I’ve had trouble communicating again and AGAIN. I can get testy. I asked him to keep me apprised of any bad attitude that starts to LEAK OUT. If he starts to sense really negative vibes from me, he lets me know (from a distance… behind a pillow blockade). He pays attention to which direction the wind is blowing. Is she getting negative? Is she justifiably angry? Sometimes I cue by jumping to conclusions. I want to know before I reach that point. He has (*graciously*) agreed to help me with this. (Ain’t he SWEET?)

Have you been conditioned to a word or phrase, a “look”, or a body stance? Do you cue off it and jump to conclusions? Now some of you readers out there are thinking, “I am rarely wrong. When I cue it is a correct cue!” (Don’t look so innocent out there… you know who you are). What we forget is that improper cueing is the result of being convinced we are right. We need to work hard at giving people the benefit of the doubt. In the end, our advocacy becomes more positive, more believable, and most importantly – powerful enough to truly produce change.

Denise Portis

© 2014 Personal Hearing Loss Journal

Inclusion

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back up1

A friend of mine from high school works for KIT (Kids Included Together) and I’ve enjoyed following her training schedule on FaceBook as it takes her literally all over the world. KIT, “… specializes in providing best practices training for community–based organizations committed to including children with and without disabilities into their recreational, child development and youth development programs” (KIT, 2014, para. 1). I touched base with her recently to ask if she and I could dialogue about what inclusion looks like on a community college campus. I want to be more involved at my workplace with the Student Services department and Disabilities office to help raise awareness about what disABILITY, chronic illness, and invisible conditions are (and are not), and to help train professors and staff to provide an atmosphere of inclusion, acceptance, and a place to grow for all who are differently-abled.

There seems to be such stigma attached with certain diagnosis or disABILITIES. I cannot stress to fellow professors how important it is to let students know at the very beginning of class:

1. You welcome transparency about any and all invisible illnesses, chronic conditions, or disabilities.

2. You provide assurance of confidentiality.

3. You provide a platform in which students can provide feedback about classroom procedures or policies that make it difficult in light of their diagnosis or condition.

4. You become a “safe person” to any who wish for a faculty advocate to coordinate with Disability Support Services and/or other faculty.

Some unfortunate stigmas attached to living with a disability or chronic condition, include:

1. You are looking for special favors because you are “special”.

2. You are not capable of doing well in class because you have to do things “different than the norm”.

3. You have a persecution complex.

4. You are a drama queen/king.

Some of the strongest people I know are people who live daily with an invisible illness/disability or chronic condition. They not only often have to find “new ways” to do something that to the normal person seems “easy” (for example, washing hair… pretty darn difficult if you have a balance disorder), but they also have to navigate a world that harshly criticizes, misunderstands, or labels folks who struggle with these issues. Some of the most difficult invisible illnesses to positively advocate for are those with mental illness or disorders. Good gravy, talk about your stigmas! They are often considered “crazies” or “fragile”, and people often avoid them after disclosure. This sucks IMHO. Some of my favorite people are those who happen to have mental illness or disorders. Talk about your resilient people! :-)

Real Responses that HELP

As I have been thinking about inclusion from an adult perspective, I have found that in many arenas, peers, co-workers, and colleagues want to make their event fully accessible to you but do not know where to start. I have learned in the decades I’ve lived with invisible disABILITY, that we should strive to not only point out the problem – but also the solution. So here is where I need your help. I want to put together a document that can be downloaded by readers so that folks can use the collaborated effort of YOUR ideas to assist when they have problems of their own.  So email me your examples, and I will include them! denise.portis@gmail.com  – in the subject line please put: Hearing Elmo Problems and Solutions.

Here are some examples of my own to get your brain working on ideas yourself! Not all are “cut and dry” problems and solutions. Sometimes the solution is simply a candid response. Read on:

1. PROBLEM: It doesn’t help when you yell when I’ve indicated I can’t hear you as added volume distorts your words and draws attention to both of us.

SOLUTION: If I have indicated I didn’t hear you, please make sure you are facing me. It helps me to see your face. Speak in a normal tone and try not to over-enunciate words as this distorts the way it appears on your lips. If I still cannot make it out, consider writing it down, or re-phrasing it.

2. PROBLEM: It’s great to have accessible venues as long as the accessibility options are available.

SOLUTION: Are there elevators available for those who cannot take stairs? Please make sure these are not blocked. (At a recent workshop I attended, when the elevator opened, the registration desk was backed up to the opening, blocking the exit. They were horrified and quickly moved things, saying, “We didn’t know someone was attending who needed this“. It’s actually against the law to block accessible options from use. This includes handicapped parking, bathrooms, ramps, making sure hearing loops are actually switched on and working, and much more. (I once complained that the handicapped stall in the ladies room had been “out of order” for a couple of days and was encouraged to use the other available stalls until it got fixed. WHAT? *grimace*).

3. PROBLEM: People think if I just plan ahead and “rest up”, I will be able to participate in an event.

SOLUTION: When I have to bail even last minute on something I hoped to attend, I try to provide as much notice as possible. You may need to remind organizers or colleagues that how you feel “day to day” is often out of your control and that you regret the late cancellation. Something as uncontrollable as the WEATHER can wreck havoc with my plans. We aren’t trying to be butt-heads and we very likely really wanted to participate. Please do not make it worse by giving us a hard time or insinuating we planned poorly.

4. PROBLEM: The workshop has several small group activities but the room does not allow the groups to separate very far. This may cause difficulties for those with any degree of hearing loss with the “bee hive” effect.

SOLUTION: Go up to the workshop facilitator and request to allow your group to go out in the hallway, or a nearby room so that it is quieter so that you can participate. (If you know in advance the workshop may incorporate these kinds of activities, see if the conference/convention center has assistive listening devices, or invest in your own so that you can carry it with you always. Be a “hearing loop” advocate! http://www.loopamerica.com/?gclid=CjkKEQjwttWcBRCuhYjhouveusIBEiQAwjy8IG2XkFTiQkOxeExJVBKV8kaOwZxqjxKgqTGAMSh4Ktzw_wcB)

I look forward to receiving your own ideas and together presenting a form we can share!

Finally, you may be wondering about the picture I chose for this week’s post. The truth of the matter is, we all have the power to wound or injure another person with words, actions, or lack of action. I want to remind my own community of folks who live with chronic illness, or invisible disability that you are not alone. Yes, people can and will hurt you. But there is strength in numbers and you are not alone. I get knocked down from time to time, but you seriously are going to need “back up” to keep me down. This community is very resilient. We bounce back because we’ve learned there aren’t a lot of other options.

Send me your own ideas of problems and solutions to things that you have perhaps experienced yourself. I leave you with one of my favorite “list graphics”:

my chronic illness

Denise Portis

© 2014 Personal Hearing Loss Journal

Kids Included Together (2014). KIT: About us. Retrieved on June 8, 2014, from http://www.kitonline.org/html/about/kit.html

Would I if I Could?

If I could change my life, would I?

If I could change my life, would I?

I recently had a reader and guest writer bring up something all of us who live with invisible illness or disability have thought about at least once. If you could wave a magic wand and “make yourself healthy”, would you?

Well gee, evidently I’m no fun. I’m a realist. So my immediate response and argument was, “but we CANNOT change those things about ourselves so why discuss that magic wand?” She immediately texted back:

*ROLLS EYES*

Yeah. I don’t play make-believe very well. Her point was… that WASN’T the point. It doesn’t matter if you CAN, the question is WOULD you.

First Instinctual response

My first response would have to be:

Heck yeah!

About two months ago I was having a “terrible, horrible, no good, very bad day“. I woke up (thanks to my canine alarm clock) and swung my feet out of bed too fast causing me to crash into the dog bed and water bowl next to my bed. Climbing down the 16 stairs to the kitchen area, I missed the last 4 steps, re-injuring my bad ankle. I ran my coffee maker without coffee grounds. I slipped on the kitchen rug and slid like a ninja into the dining room and cracked my head on the table. When my husband came downstairs he found me sitting on the floor wailing. I sobbed and blubbered all the things that had happened in the 30 short minutes I had been awake. He leaned down and patted my shoulder and said, “Awww honey. Sometimes it sucks to be you“.

I cracked up. It was exactly what I needed. Sometimes? Sometimes it just sucks to be me. But… I am me and I deal with that. Wouldn’t it be great if I didn’t have to live with a balance disorder though? Wouldn’t it be great if I could hear with “normal ears”?

Well duh. Of course it would. I’ve had folks tell me before, “Denise, you are always so UP and optimistic. You do not ever seem to let this STUFF get you down“. Well gee… you aren’t hanging out with me enough then. I try to set people straight quickly. It isn’t always wonderful. I don’t always smile. I’m not able to pick myself up by my bootstraps all the time. Sometimes I wail on the dining room floor thinking how much it sucks to be me!

But You Can’t Stay There

So I have good days and bad days. Just like you.

I am quite capable of “counting my blessings”, finding the “silver lining” and make darn good lemonade from those “lemons”. That doesn’t mean I don’t really wish things were different sometimes. I’d be lying if I said I love being me all the time.

But magic wands do not exist. This is my life. I know more about Meniere’s disease and late-deafened life than the doctors who diagnosed me. I know more about learning how to fall and how to move than my buddies at vestibular rehab. I’ve learned to cope.

Just like many of YOU have. You make the best of it. There are few alternatives.

We will have “bad days“. Don’t be afraid to feel it. Belly-ache about it. Scream at God. Throw something (not at someone – jus’ sayin’). Cry. Cuss.

But you can’t stay there. A friend of mine lives with a chronic pain and inflammation condition. I asked her how she “keeps on keeping on” when she’s had a bad day. She said, “You have to. You get up and breathe in and out. You wipe your tears. You suck it up. But then, go confide in a friend. Write. Dance. Take a walk with your camera. Hug your dog. You can’t stay there“. (My friend is very wise, yes?)

My friends, you are going to have days where you discover you are stronger than you think you are. But… you are also going to have days you find you aren’t as strong as you’d hoped. That is part of acceptance. Acceptance doesn’t mean you have to LIKE it. By accepting we then learn to cope. We become flexible. We become teachers (and reach out to others). How you cope may not be how someone else copes. The trick is TO COPE.

Would I change the physical stuff about me if I could?

***WaVeS mAgIc WaNd***

But that would mean that I wouldn’t have met many of you. My friends and relationships would all be different.

I wouldn’t have learned to advocate and help others.

I wouldn’t have found a “place” at Fidos For Freedom.

I wouldn’t have pursued psychology and disabilities.

I wouldn’t have learned to empathize and support others who live with invisible illness and disability.

I would not have learned how capable I am.

I wouldn’t have learned who I really am.

So nope. I wouldn’t waste that fairy dust on changing me. I may not always like my life, but I love living. I keep my focus on the verb, not the noun.

So if I had a magic wand? Well heck, I’d use it for something useful! Like being able to consume as much chocolate as you want without the scale showing any change! Um yeah. IN A FREAKING HEARTBEAT! :-)

Denise Portis

© 2014 Personal Hearing Loss Journal

“Reflection”

Look at me
You may think you see
Who I really am
But you’ll never know me
Every day
It’s as if I play a part
Now I see
If I wear a mask
I can fool the world
But I cannot fool my heart

Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?

I am now
In a world where I
Have to hide my heart
And what I believe in
But somehow
I will show the world
What’s inside my heart
And be loved for who I am

Who is that girl I see
Staring straight back at me?
Why is my reflection
Someone I don’t know?
Must I pretend that I’m
Someone else for all time?
When will my reflection show
Who I am inside?

There’s a heart that must be
Free to fly
That burns with a need to know
The reason why

Why must we all conceal
What we think, how we feel?
Must there be a secret me
I’m forced to hide?
I won’t pretend that I’m
Someone else for all time
When will my reflection show
Who I am inside?
When will my reflection show
Who I am inside?

 

Pet Peeves

Melissa and family

Melissa and family

Hearing Elmo welcomes, Melissa Sisco, guest author from Alabama. One of the many things I love about Melissa’s writing is that she is very transparent and doesn’t “sugarcoat” things. The way I see it, a blog supported by writers who live with invisible illness or disability, must be very REAL as they write. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa 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”. A big shout out to Melissa for writing! 

Okay. So I’ve had Meniere’s Disease for over 7 years now. I’ve been bilateral for over 2 years. The reality is that my left ear is more or less a lovely decorative piece. I have a usable older (once top of the line) hearing aid that is being refashioned for use on my right ear. I could truly benefit the most from a nice bi-aural set, but insurance doesn’t cover that, and the set I would need would set me back a good 8 to 10 thousand dollars. I now make too much money to qualify for any government assistance, so that option is gone now. I don’t have that kind of money lying around, nor do I want to bury myself in credit card debt, so I would rather spend it on my daughters while enjoying some activities of natural hearing while I still have some left.

When I was first diagnosed at 27, the hearing loss thing felt like a death sentence. Now I see it’s just part of my new me. My world is more quiet, save for the tinnitus. I see more, I feel more, I taste more and yes, I even smell more. I’ve enriched my other senses out of necessity. And really that is not so bad. I’ve even accepted the definition of disability as it is necessary to protect me legally and medically. But I am no less ABLE. I just don’t hear as well. My mind is still sharp as a tack (most of the time). Hearing –not so much. I am okay with that. I can accept it; make peace with it. That is God’s Will after all. Everything happens for a purpose.

But, there is one pet peeve I’ve encountered repeatedly lately that really gets under my skin. You know, like poison ivy or something akin to that. Starts as a tiny pink slightly itchy dot. You tell yourself not to pay it any attention. But it itches. You scratch, it spreads, it gets worse. Finally you have to stop and confront it with calamine, Benadryl or even a visit to the doctor if it’s bad enough or you happen to be allergic. That pet peeve is people who have already written me off as Disabled. I need a, beg my pardon, flipping epi-pen for this one.

Nothing else infuriates me more right now than that attitude from others, whether they are strangers, co-workers (present or past), friends (present or past), or family (can’t change that). Being completely written off as “Oh, she’s done, stick a fork in her;” is absolutely the best way to watch steam come blowing out of my deaf and going-deaf ears. The word anger just doesn’t seem to really define how I truly feel when I am overlooked, uninvited, unfriended, or just plain ignored because, well I am (*gasp*) Disabled now. There are days you would think Disabled is synonymous with Dead. Well I am NOT.

I still eat food. In public. I still can be a bridesmaid (although I can’t wear heels – I will look tipsy way before anyone else). I still have a promising career because of this lovely new-fangled invention, they call it a chair. I still drive a car! For now anyway. I still type 85 wpm. I am still a mother to my daughters, a wife to my husband, a daughter, a friend, etc. to those who haven’t walked away. And a loyal one at that. I have had to make certain adjustments, like asking people to look me in the face when they are talking, or to wait until I can get my caption call phone working before we continue a good conversation, but these aren’t overboard requests. I’m not asking people to walk through lava or sit in on my inner ear perfusions with me. I reserve the special stuff only for my closest loved ones.

I was really, deeply hurt when I overheard (okay, read the transcript) of a conversation I wasn’t supposed to hear. (Lovely captioning apps that Apple offers.) I found out that several people I had worked with previously (and some I still have to work with –awkward) had nixed our friendship because they assumed my “Disability” meant my career was going nowhere. No career meant I was “no good” to them. Words really can’t accurately express how deeply hurt I was. I have always taken pride in doing what I can for those I work with. I repeat in my head that I can’t possibly know the trials that others may be going through personally and so I make it my mission to do what I can to make things easier where I can. Accidentally finding that transcript was one swift kick in the emotional gut. I still treat them as I did before, because I can’t change who I am. I will always help when I feel the need is there. But that pain and anger is just below the surface as well. I guess it’s more like a deep throbbing disappointment now. And it hurts to see people daily who think I’m “done for” lying to me; eyes, words, gestures and all.

I struggled long enough to convince myself I was still good enough for myself, even without hearing or good balance. It took me a while, but I got there. There are still some rough days, the ones I can’t get out of bed because of the vertigo, or a random vertigo drop attack that suddenly smacks me with a sidewalk; but I am making it. I just didn’t quite imagine my work place I once considered safe turning into a world of landmines. People waiting for me to drop work permanently because they want my job, or they want someone else in my job. (After all Disabled people don’t deserve real jobs. *sarcastic thoughts of “healthy” people*)

Losing friendships hasn’t gotten any easier either. Some people just get tired of trying I guess. And I don’t blame them. I had a rather extended pity party for myself for a while. Making new friendships is even harder. I am not obviously deaf/hard of hearing. I “cover” for it well. Most people have no idea I can’t hear them, that I am only lipreading and body gesture reading. I’ve yet to try to figure out the best time to break that to people. If you tell them right from the get go they avoid you like the plague. If you wait a while, you get the “I had no idea,” or “Oh, that’s why you said [whatever didn’t make sense the other day].” Neither response is more conducive to friendship than the other. My favorite response was, “Why don’t you just hang out with only Deaf people?” No comment. I walked away from that one, quickly.

I am still working on my ASL. It is slow and painful for me. I crave grammar, structure, (I used to love diagramming sentences) and ASL has little to none of that. I also have no one to practice with except my daughters (at 5 and 7 they are already better than me!). My husband is starting to try, if only because it annoys him that “his girls” can talk about anything right in front of him and he is completely clueless.

Melissa, "But I am no less ABLE. I just don’t hear as well."

Melissa, “But I am no less ABLE. I just don’t hear as well.”

I have recently picked up an old hobby again. My acoustic guitar. Can’t hear all the notes. But I can feel the vibrations. I actually play better now than I did when I could hear fully. How ironic is that?

If you would like to contact Melissa, reply here or contact me. I will forward your email to her! denise.portis@gmail.com

 

Beaver – Destructive or Discerning?

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We have beaver. Actually, we’ve had beaver for about 16 months now, however this summer it is really evident WE HAVE BEAVER.

Our townhouse community sits up at the top of a hill. It is a closed cul-de-sac community, so it is great that “through traffic” is not an issue here. A brand-new walking path is now within footsteps of my front door. It will eventually connect to other walking paths, but for now it is about 1.5 miles round trip. At the bottom of our “hill” the path takes us by both a busy road, and what was once a small creek. In the Spring, I use to get a kick out of “hearing” the water sounds, especially after heavy rains. Last Spring those water sounds disappeared. However, I spotted this:

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… and then this:

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The creek quickly turned into a pond. And this year? Well let’s just say there is a new ecosystem near my house.

I came across a huddled group of homeowners about 3 weeks ago, whispering and gesturing towards the pond with banks now within 60 feet of our back doors. I stopped to see what was going on, and because it was early enough in the morning with few traffic sounds, I could actually hear their whispers.

“Will the water level rise much more?”

“What do you think they are up to?”

“Do they bite?”

Now my first thought was, “FOLKS. Beaver do not understand human language and to my knowledge they don’t have bionic hearing like I do. Why the HECK are you whispering?”

I didn’t voice those thoughts. Instead I said, “Ummm” (I’m ever so eloquent…)

Yeah, but have y’all been down to the pond area where the walking path is? Have y’all seen what has happened down there?

Blank looks. I discovered they don’t comprehend SOUTHERN. I tried to speak a little more cultured…

Yes, you should walk down there. There are 2 HUGE culverts about 8 feet in diameter. That water level will never get any higher unless those culverts become dammed up as well. If that happens, the city will just unplug them. After all, that road will flood before our homes will“.

Blank looks. See what a lack of exercise will do? Go walking folks, go walking. Check out what the beaver have done up close. Geesh. I think they were miffed I was talking in a normal tone of voice. After all… *sneaky whisper* … the beaver probably HEARD ME.

Beaver have made a comeback in Maryland. I pulled this from a neighboring county’s website:

“Beaver can be among the most beneficial of the county’s wildlife. They create favorable habitat for a variety of wildlife species including fish, birds, amphibians, reptiles, and mammals. This variety of wildlife is in turn valued for recreational, scientific, educational and aesthetic purposes. Beaver activity is also helpful in retaining storm water runoff and improves water quality by trapping sediment, nutrients, and pollutants. Beaver activity can also cause flooding of roads, trails, forest land. They also consume trees and shrubs. Their impacts often occur suddenly and dramatically.

These benefits and detriments often occur simultaneously at a single location. Because of the varying degrees of tolerance levels among people to beaver activity, there are bound to be disagreements on how best to “deal” with beaver conflicts.” (Howard County Parks and Recreation, 2014).

Living side-by-side with these amazing creatures is fairly simple. I’ve been thinking a lot about this family of beaver.

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They migrated to this area near the bay bridge and did what came naturally to them. Not with destruction in mind… but cunning and incredibly discerning architects, this family of beaver have created a whole new ecosystem. We’ve always had tree frogs (although it took Chloe’s trainer to clue me in to what I was hearing each year). But now we have:

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… bullfrogs. You should have seen Chloe’s head and ears the first time she heard THEM! These fellas stretch about two feet, nose to tip of hind legs. I know this, because I’m the crazy neighbor lady screeching to the neighborhood boys who have caught them and held them up to “Return them to the pond when you are done!”  There are also numerous plants I have never seen before in this area when all we once had was a creek…

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and the trees are flourishing…

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I counted 4 different families of mallard duck one evening, with little ones thriving in this secluded and protected environment. Turtles are sunbathing on any log or rock that breaches the surface of the water. The fox are back (having been gone for at least two summers). There are enough deer in our area now to make my poor hound dogs hoarse for all the barking alerts they insist on for me.

I cannot help but be amazed. The beaver strengthened and created a home just right for them, and in the process created a place to thrive for other species. Folks? I want to be a beaver.

I didn’t ask for disabilities. I never once thought, “When I grow up… I want to be DEAF and have a significant BALANCE DISORDER”. However, in my own process of adapting and making my environment safe and liveable for ME (cochlear implant surgery, service dog from Fidos For Freedom, be-dazzled canes, no-slip shoes, discovering where all the elevators are on campus, practicing all I learned in vestibular rehab.), I have created a new ecosystem.

I want MY WORLD to intersect with the REAL WORLD and help folks recognize the importance of inclusion. I work to make sure that my new life, teaches and advocates in accepting differences. I want others to recognize abilities rather than disabilities. I want my invisible disabilities to be visible and “pond-like“. I want my life to inspire others to choose to live equally purposeful lives. In my own small way I do this by working with my campus disability office. I openly talk about being “differently-abled” in class. I “plug” what I know whenever I can to whomever will listen… cochlear implants and service dogs, depression and coping skills. I have discovered my environment changing. People are coming out of the woodwork… or umm… newly created POND, and sharing with me that they have a mental illness, invisible challenge or diagnosis such as fibromyalgia, chronic fatigue syndrome, or Lyme’s disease.

Yes. Having an attitude of gratitude and focus on education and advocacy, has me walking by concerned citizens from time to time, whispering about a beaver conspiracy. But just as I’ve learned that being transparent is contagious, these folks will eventually HEAR and go walking to discover other new ecosystems. At least… I hope they will.

Do you live with disability? Are you struggling with an invisible illness? Do you have a chronic condition that folks do not seem to understand, nor comprehend how it affects you? Hearing Elmo is not just a place to “hear”. My desire is that numerous authors, both named and anonymous, begin to disseminate the kind of information that changes our environments. In the end, the beaver aren’t the sole beneficiaries. We all benefit. Would you like to write for Hearing Elmo? Contact me at denise.portis@gmail.com and type “Hearing Elmo” in the subject line. Building dams is pretty fun. It is unexpected. It is worthwhile. We can all make a difference!

Denise Portis

©2014 Personal Hearing Loss Journal

Howard County Parks and Recreation. (2014). Beavers. Retrieved May 16, 2014, from http://howardcountymd.us/DisplayPrimary.aspx?id=2396

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