Feeling Like a Weirdo

Always thrilled to have a guest writer here at Hearing Elmo. If you live with chronic illness or a visible/invisible disability and love to write, I invite you to post in this venue to share your story.

I don’t remember when Deb and I first met. I feel like I’ve known her “forever”.  We just “clicked” early on and she is now one of my dearest friends. Deb has taught me so much just by example. We have a lot in common, but are also different in many fun ways. C.S. Lewis said, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one!” I’m thrilled to share a post from her and hope you will check out her photography site as well. Visions of Song

apropos of nothing

I was a little bit grumpy when I went into work this morning. Just your ordinary kind of grumpy, at least I think that’s what it was at the time. We had a staff meeting scheduled for 9:30. I was walking down a hall at 9, about to get some water from the kitchen, when I saw a teammate who said “we’re meeting in the first floor conference room”. Thinking I’d lost track of time, I said, doesn’t it start at 9:30? He shrugged and said “sometimes it’s different”. Later, I found out what he meant, but at that moment I was walking in the wrong direction, sans water, notepad, calendar, and orientation. I rushed to grab my things and when I walked in, everyone was seated. Now, let me mention that I am relatively new on this job, and the folks are really nice and teach me a lot about what goes on there. Today, though, I was already grumpy, and now I was LATE (and still didn’t have anything to drink because I’d forgotten to fill up in my haste). I sat at a place around the large, squared set up of tables, strategic for what I knew would be best for me, able to see the faces of everyone should I have trouble hearing anyone. My supervisor said “sit where there are papers” meaning the agenda and other materials. Well, the seats available were not strategic for me, and I was already feeling grumpy and it was obvious that I was late and slightly holding things up. I said “everyone forgets that I am hard of hearing and need to sit where I can best follow what’s going on. So, if it’s alright by you, I’m just going to get these papers and sit over here”, walking to where I intended to sit and feeling quite determined about that fact. Meanwhile, supervisor gestured as if to say “come sit by me”. I did not want to explain why that would not be ideal, and she was trying to be helpful, but it wasn’t helpful, and by the way I was feeling more and more like a grump at this point. Further, I was feeling like a weirdo. An oddball. Someone who needs something special. I deeply dislike standing out, or seeming like I need something unusual. Everyone else was sitting wherever they wanted to, and I had to have this mini-scene because, as I stated rather unprofessionally, no one seems to remember that I’m deaf and use cochlear implants to hear. At the risk of sounding like I’m bragging, among cochlear implant users, I am a super high performer. I am pleased and even thrilled by what I am able to do hearing-wise. Then I get in a typical work situation, and suddenly: I’m a weirdo. It does not help that I am also something of an introvert, friendly, social, smart, funny, but I need tons of time to process and recharge. I really don’t think it has much to do with my hearing, either, as I had relatively normal hearing for the first 10, 12 years of life but was always this way. So I seem a little odd compared to the norm in terms of social interaction to begin with, and then there’s the hearing loss and the special needs.

Grumble.

You know? Most of the time, really and truly most of the time, I am OK with being deaf and hearing again with cochlear implants. I am glad to educate and inform and certainly to advocate for myself (although I have work to do in this regard, and tend to be much better at advocating for others). Today, I wasn’t in the mood. I finally got something to drink, and good thing, because I ended up sitting through three meetings before the day was done.

beverage at Davids Diner

It did give me time to forgive myself, for feeling badly, for not feeling comfortable about asking for what I needed. I was also glad that I have become that person who knows what she needs and while the sending of the message might be a challenge at times, I can say no, I don’t need that, I need another thing, and know how to pursue what enables me to perform and participate at work. I walked through my apartment door at the end of the day thinking I either needed a drink (the after-five kind), or a good cry. I remembered I had some delicious food to make for supper, and having eaten and cleaned up, I sat and wrote this down. I don’t feel so grumpy anymore.

Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, and is passionate about issues related to substance abuse, addiction, and mental health, serving as coalition coordinator for Project Lazarus of Randolph. In her spare time she enjoys traveling as much as possible, and can frequently be found wandering the backroads and practicing nature photography in the nearby Uwharrie National Forest.

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My iPhone Lasts Longer Than I do

iphone 6+

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead phone in hand trying to figure out if I had charged it overnight — the night BEFORE — like I usually do. After hitting <rewind> in my head and backtracking over how my day BEGAN, I realized that I fished my smartphone out of my pocketbook before heading out the door this morning. That means I did not charge it last night. That means my iPhone lasted over 36 FREAKING HOURS! I was impressed. As impressed as I was, I STILL went and hooked it up to the charger. It was dead. It had to be charged.

As I fiddled around with the (stoopid) cord, (made difficult when you lack any kind of pincer grasp in your fingers), I thought, “Wow. My iPhone lasts longer than I do! I could never go 36 hours without being recharged!” And ya know? That made me a little sad.

My next thought was, however, “NOW WHY DOES THAT MAKE ME SAD?

STOP Apologizing

I hate that my default to what is normal for ME, is to feel sad about it or to apologize to myself and others. Why do we do this?

Well according to Wright (1983) and Nosek et al., (2003), people who are differently-abled and chronically ill, default to apologizing and providing unnecessary explanations and dialogue about their condition to smooth the way of acceptance. These same authors point out that this often backfires. We instead bring attention to something others may not even notice. Apologies convey regret over intentional or unintentional offenses or failures. Apologizing for needing a nap, needing to relocate to a quieter room, asking someone for a repeat, or request to stand closer to a wall to keep from toppling, is not something we should REGRET. It is not a failure. It is what it is.

I would argue that falling into the habit of apologizing for our “normal” creates a dangerous pitfall and trap that our disabilities or chronic illness are an undue burden on others. This could lead to becoming preoccupied with how hard you are making life for others. Russell, Turner, and Joiner (2009) found that individuals with disability or chronic illness already have a higher tendency towards suicidal ideation. Apologizing for something we are not responsible for only creates a perfect and toxic breeding ground for suicidal thoughts.

Putnam et al., (2003) explain that true independence and self-determination falls closely on the heels of acceptance… that can only take place when we stop apologizing for our “normal“. I use to apologize a great deal. In spite of using every piece of adaptive equipment I could find and afford, in spite of partnering up with a service dog, and in spite of reading everything I could get my hands on about positive advocacy and independence, I would still apologize for putting someone else out for helping me cope with a situation. I’m trying to do better. For example:

Instead of “I’m sorry. Could I get you to move over to that wall over there so that I may lean against it and have Milo (my service dog) on the left while we speak? I hate to ask you to move, but…

… at which point they would say, “Oh, it’s no problem. Let’s move…” However, my apologizing for having to move infers that I had a choice. Apologizing makes it seem that I regret I am who I am.

I’m trying to learn to say, “I need to move to that wall over there for balance reasons. Let’s move over there and continue our conversation?

… and their response would be, “Sure!

I was in a super crowded common area once in which a colleague was trying to talk to me about something important. Not only could I not hear her, my balance was REALLY off and I stood there wobbling like a buoy. There were no walls available, and I was really starting to feel ill. I said, “I am having difficulty in this listening environment. Let me follow up with an email because what you are saying is really important to me“. They were pleased to do so and I think grateful enough that I cared to communicate WELL with them. I had to bite my tongue to keep from saying, “I’m really sorry about this…” I had nothing to feel sorry about so an apology would only have infused my confidence with negativity.

Yes, But FATIGUE is just EMBARRASSING

What if your (seemingly) undue burden on others is simply that you cannot keep up? Perhaps you need a mid-day nap to finish the day strong. Yorkston et al., (2010) found that differently-abled individuals USUALLY have accompanying pain, fatigue, or BOTH. We tend to want to apologize for this. We shouldn’t.

I have a friend with chronic (and sometimes debilitating) ankle pain. Mid-day she goes to her office and puts her feet up. If she has to go to a meeting, she unapologetically claims an additional chair so that she can rest her feet. I walked into a meeting once and saw she had her feet up on an adjacent chair. Someone walked by and said, “Are you saving that for someone?” She smiled, pointed to her feet, and said, “No. Bad ankles!” The person didn’t question her. They didn’t shoot her a pitying look. They also didn’t steal her footrest. It was a smooth and succinct explanation for her claiming an additional chair.

Several weeks later I ran into her and talked to her about what I observed. She said, “I use to apologize for having to put my feet up. But then I thought, ‘WHY am I APOLOGIZING?’ I knew that only made ME feel badly. I decided then and there to stop being sorry for having tired feet“.

If I’m at work during a meal time and the weather is nice, I often go out to my car. I load my dog up, crank the air or heat (depending on the season), turn my cochlear implant and hearing aid off, and eat my meal in the quiet. Understanding my propensity for hearing fatigue, means I take time to unplug when needed. I need to recharge. I’m not anti-social (ok… well, not VERY) and I’m perfectly capable of going to the staff lounge or faculty dining room if I want to do so. Taking a mid-day recharge in the quiet enables me to complete my day STRONG… and unapologetic. Isn’t that what independence is about?

My iPhone may hold a charge longer than I do, but I take responsibility for recharging my own battery. Do what you need to do to recharge.

Need a nap? Take one.

Need some tylenol and a twenty minute break? Take them.

Need a “mental health day”? Take it.

Need a vacation? Take one.

Need a coffee break? Take it.

… and don’t apologize.

Denise Portis

© 2016 Personal Hearing Loss Journal

Nosek, M. A., Hughes, R. B., Swedlund, N., Taylor, H. B., & Swank, B. (2003). Self-esttem and women with disabilities. Social Science and Medicine, 56(8), 1737-1747.

Putnam, M., Geenen, S., Powers, L., Saxton, M., Finney, S., & Dautel, P. (2003). Health and Wellness: People with Disabilities Discuss Barriers and Facilitators to Well Being. Journal Of Rehabilitation69(1), 37.

Russell, D., Turner, R. J., & Joiner, T. E. (2009). Physical disability and suicidal ideation: a community-based study of risk/protective factors for suicidal thoughts. Suicide & Life-Threatening Behavior39(4), 440-451. doi:10.1521/suli.2009.39.4.440

Wright, Beatrice A. , (1983). Physical disability – a psychosocial approach (2nd ed.). , (pp. 116-156). New York, NY, US: HarperCollins Publishers

 

Yorkston, K. M., Johnson, K., Boesflug, E., Skala, J., & Amtmann, D. (2010). Communicating about the experience of pain and fatigue in disability. Quality Of Life Research: An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation19(2), 243-251. doi:10.1007/s11136-009-9572-1

 

 

Have you tried? Do You Think _______ Caused It?

Picnic with Ants

I don’t often cross-post, but when I do I hope you know that IMO, it is a post everyone should read. This is one of those posts. Wendy (friend and fellow blogger at Picnic with Ants) writes about a topic all people with chronic illness and/or disability deal with and have to learn to respond to when it happens.

Because it will. One of the best written posts around about this topic:


Hello.  My name is Wendy.  I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease.  Unless something amazing happens, they are not going to go away.  Sometimes I feel I need to make this statement before anyone speaks to me.

Recently I was asked a few things about my health.  This was not by people who see me often, or have much knowledge about my illnesses.  This is how I handled a few of the questions, some of it was good, some not so good.

Have you tried yoga?  It can really help your balance.  I used to do yoga regularly…

Read more: Click here

Denise Portis

 

#TheCheeseStandsAlone

the-cheese-stands-aloneHashtags-graphic

I have always spent WAY too much time on things I do not understand. I remember as a kid having a great deal of trouble with the nursery rhyme, “The Farmer in the Dell”. Why did everyone — have SOMEONE, except for the cheese? Why did the cheese have to stand alone? This bothered me at 6-years-old. I didn’t have “Google” or other search engines to discover the “why”. Siri wasn’t there to tell me (though she is precious little help in my humble opinion). I remember asking my parents (who didn’t know), my grandmother (who explained the cheese wasn’t “living”) and my brother (who smacked me good for such an inane question).

Now if I don’t know something and spend WAY too much time pondering something, I can easily look it up. Take hashtags, for example. I was using hashtags before I knew what hashtags were. I was being ridiculous. (Surprise anyone?) I used them for anything and everything, not fully understanding what they were for. I still use them to be silly sometimes, but there really is a reason to use them. Hashtags make social media (Twitter, WordPress, Facebook, and much more) posts “searchable”. A high school friend of mine, Janet, is currently using one: #wheredoyousummer. Janet knows how to use hashtags correctly. People all over the world can pick up and use the same hashtag, making it possible to search what others are posting about the same topic; that is, where and what you do for summer fun. Here is a great article about hashtags in case you are still in the dark: 10 Reasons Why You Should Use Hashtags and Where

Sometimes I’m Left Pondering

You cannot always look up what you don’t know. This is especially true when one considers the human psyche and the reason some people do what they do. You can google, “Why does my husband leave dirty clothes on the floor?” and you won’t get very far. (Actually, if you Google that, you will find some information which just floors me!). You cannot search why some people respond negatively to you in regards to your disability. “Why is my co-worker a butthead when I explain I cannot hear her over her desk radio, chewing gum like a cow, and tapping foot?

Friends? You just aren’t going to find the answer to all questions that plague you! Sometimes there are no answers. I’m frequently left wondering why something is the way it is, or why someone behaves as they do. There are no easy answers.

I like to think if I had not developed Meniere’s disease and become “the bionic woman” with my hearing, I would still have patience and understanding for differently-abled people. I like to think my heart was “right” before ever acquiring challenges myself. But… I can’t know that for sure.

I’m sure it is not always easy to be around someone whose favorite response is “huh?” First day of class today for a summer session of Introduction to Psychology, and a Latino student came up and whispered something to me with a slight accent. I took a step closer and asked him to speak up so that I could hear him. I turned my cochlear implant ear towards him. He stepped back, his eyes got big since I encroached on his personal space, and he had trouble talking to me in a louder voice (he is likely soft-spoken to begin with). I understand reactions like this. They do not bother me anymore. Eventually I understood what he was asking, and we got it all “sorted”.

What is tiresome is when you ask someone to repeat themselves, and they do — exactly like they did the first time. (Quietly, mumbling, chewing gum or inhaling a Subway sandwich, etc). By the time I’ve asked for a repeat a second time, often repeating at least what I DID HEAR that go ’round, I have received some cantankerous retorts. I often have to take a deep breath and put my cane down so that I don’t bean someone. It’s frustrating! You are not always going to know why someone reacts the way that they do.

Boundaries

I have readers at Hearing Elmo who often ask me tough questions about the behavior of other people. Why do their loved ones seem so disrespectful at times? Why do people you count on let you down over and over? Why do people in our support system act as if this is all harder on them than it is on you–the person with the acquired disability or chronic illness?

There just aren’t any easy answers. Communication is important, but communication breaks down in the BEST of times. When trying to learn to cope and adjust to an acquired disability or chronic illness, communication is tough. Sometimes, you can write someone off after giving them numerous chances to accept you as you are. You can throw up your hands and #BootToCurb.

More often than not, we have to swallow our frustration and WORK at it. You may need a counselor or mediator even. I know my own acquired disabilities had an effect on much more than me. There was adjustment for both my husband and my children. It is important to remember that when you LOVE someone, what negatively affects them often has an affect on you as well.

Other times, we can distance ourselves from toxic people. Sometimes these may just be “former friends”, but sometimes they can be family. This is especially difficult. Boundaries are important. I have some folks in my life who are unreasonable in their expectations, hateful, and often bring me down (way down). I may not be able to cut them out of my life because we are related, but I can set up boundaries. Cloud and Townsend wrote: “Boundaries: When to say Yes, When to Say No, To Take Control of Your Life”. I highly recommend it. When negative people cross invisible boundaries I have set up for proper and normal human behavior, I can distance myself with a clear conscious if they choose to continue harming me.

If you lay down the ground rules of respectful HUMAN behavior and someone does not hold up their end? Distance yourself. Walk away.

“But I work with this idiot” (#TriesHardToRefrainFromBadWords).

That doesn’t mean you have to share your life with them. Do your job as it requires interacting with them, but don’t feel like you have to invite them to a party, become FaceBook friends with them, or include them in more intimate details of your life. Frankly, these folks are likely horrible to anyone different than they are. Your disabilities or chronic illness aren’t what set them against you. Their own issues have them responding negatively to anyone “different”.

Blog. Just do It

In closing, I wish I could explain to you how therapeutic blogging is. Even if you do not want to start your own blog–many health and advocacy bloggers (like Hearing Elmo) welcome guest writers. It is SO helpful to me to be able to write about what works, what doesn’t, what I’ve learned, and what I’ve forgotten. #LoveToBlog

I think we need an outlet. When burdened with an acquired disability, chronic illness, or special health/mental health challenge, we need an avenue to vent. Writing can help with that. I (as always) welcome guest writers.

Want to start your own blog? Here is a great place to start: Blogging Basics

Have a great week!

Denise Portis

© Personal Hearing Loss Journal