A Pocketknife to Clean Your Nails

pocketknife

ABOVE… My dad in 2011 when he visited Gettysburg with us.

Do you know every time I retrieve a nail file to smooth, clean, or file my nails I think of my dad? Isn’t it funny the kinds of things that will recall a memory for us? Not the kind of recall that triggers our sympathetic nervous system and launches a flashback in folks who suffer from PTSD. Instead, the kind of recall that knocks on the door of our heart with a “feel good” memory. The memory replays a specific conversation or event. For me, when I use a nail file I vividly recall how my dad would clean his nails with a pocketknife.

I couldn’t have been more than 7 or 8-years-old, for we had not yet returned to the family farm. My dad still worked for International Harvester at the time. One day I sat watching him clean his nails with a pocketknife.

“Why do you use your knife to clean your nails?”

Dad continued to clean his nails and thought about his reply. The man never just “spoke off the cuff”. He responded after a bit, “It does the job”.

“Well, will you clean MY nails?”

With less thought he replied, “I can’t. I can’t tell where your nail stops and your finger starts”. He scooted closer to allow me to see from a different angle how he was using his knife to clean up under the nail. I may have been young, but I immediately grasped why he couldn’t clean MY nails with this unconventional method.

Although I never could bring myself to clean my own nails with a pocketknife, I learned over the years that one can do things just as well by means of unconventional tools and methods. I would not have understood if someone had tried to tell me that I would eventually become deaf and develop Meniere’s disease – a balance disorder, and that by doing so I would have to adopt some new means to navigate my world safely.

Works For Me – But Maybe Not for you

I suppose one of my biggest pet peeves is when folks start dictating to someone who shares a diagnosis how they MUST go about treating that disease or disorder. Just because something works well for YOU, does not mean it will work well for someone else. This doesn’t mean we shouldn’t be willing to tell our story and share what works for us. Peer networks and support groups are invaluable in my opinion. However if I chose to use a nail file to clean my nails, and you choose a pocketknife, all that should be celebrated is that the end result yields positive benefits for us both. Clean nails are clean nails no matter how they got that way.

That doesn’t mean the process to clean nails is always easy. I have to sit to brush my teeth. That toothbrush swishing around in my head will make me pass out if I do not do so from a seated position. I never could sit on the lid of the commode to brush my TEETH. So I step into the bedroom and sit on the hope chest to brush my teeth. I have to be sure to keep my mouth closed so that there is no splatter. Ewww, right? This last week as I was sitting there brushing my teeth, it just hit me wrong. Here I was 47 years old and unable to brush my freakin’ teeth over a freakin’ sink like a normal – erm – FREAK! So…

I started crying.

My husband stepped into the bedroom. I can’t imagine what he saw. Here is the wife sitting and brushing her teeth, sobbing her eyeballs out, toothpaste now EVERYWHERE, including dribbling down her quivering chin. He calmly said, “You OK?”

Did I look OK? Alright, yuppers… I didn’t actually WANT his help. I just wanted to finish brushing my teeth. Those FREAKIN’ ones…

When a person with disability or chronic illness finds a way that works for THEM, it doesn’t mean it is easy. But this is why we are not disABLED. We are differently-abled. It is quite a cognitive and emotional boost to discover you can still enjoy something you did before – only in a new way. It may look strange, novel, or genius… but the reality is “it gets it done”. Yet what I find works for me, may not work for someone else with Meniere’s disease. I cannot safely clean their nails with my pocketknife.

Celebrate the Day

Gee, we live in a wonderful age of technology! When I think about the miracle in that I’m hearing again bionically, and all the cool tools available to me through simple apps on my iPhone, or special assistive technology, I get goosebumps! I live in a country where service dogs OTHER THAN guide dogs are fairly common. Email and texting – two communication devices I utilize frequently, are favored among the NORMAL hearing population. This makes my life so much easier!

Folks with mobility issues, learning challenges, hearing loss, chronic illness, and various disorders have options available here in the U.S. that we did not have 30 years ago – or even 10 years ago! Yet some of the things we learn to do are through our own ingenuity! I have quite literally patted myself on the back and mentally “high 5’d” myself when I discover a new way of doing things. To you being able to do the laundry without actually having to change the altitude of your head is not very impressive. But to me? This is a “WOO-HOO” discovery. But the proper lean formation, use of step-stool and service dog work for me. They may not work for you if you, too, have Meniere’s disease. But be willing to share ideas with each other without dictating proper protocol. The end goal is clean nails after all.

Denise Portis

©2013 Personal Hearing Loss Journal

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You’re So Vain…

chloe hug

I love my local grocery store. Not so much that I was pleased I had to go twice this week after forgetting a few items, but the aisles are spacious, the employees know me (and Chloe) by name, and I save a lot of money in both sale items and even gas points. My unexpected impromptu second visit this week was disastrous, at least from an emotional standpoint. I came down the aisle looking for those elusive cotton balls that I failed to remember on my first trip and met a lady only slightly older than me with two canes. We stopped to chat for a minute and thought I had met another who understood when she surprised me by saying, “I just couldn’t work with a dog. It seems so vain because so much attention is brought on by being with one“.

I could feel the heat creep up in my face and I blinked back tears as I stuttered out, “Well different strokes for different folks I suppose“. (I’m always so proud of how eloquent I am in a pinch *rolls eyes*).

I really had very little left to say so quickly cut it short and moved on to find those STUPID cotton balls. Because ya know? Now I was MAD after that initial “kick in the gut” feeling so I determined then and there those cotton balls were stupid. Made me feel better anyway.

My husband and I kid around about how vain Chloe is. Her biggest fault as a service dog is that she is too friendly. She’s a flirt. She gets gently reprimanded on days my balance is really off if I put her in a sit/stay while talking, but then she wags and flirts and stretches for a kiss. Heaven forbid someone actually switch their attention to HER! Then she is like, “You love me. Denise loves me. We all love me. I love me.” She’s so vain! (♫♪ Chloe, you probably think this post is about you! Don’t you? Don’t you?♪♫)

Many people with invisible disabilities are not in favor of mitigating their disabilities with a service dog because it DOES bring attention to you. As a matter of fact, I know of cases where folks drop out of training programs when they discover that this service dog will bring unwanted attention to them. That isn’t worth it in their opinion. And… that’s OK. I have Meniere’s disease (a balance disorder) and am hearing again with cochlear implant technology. I HAVE chosen to mitigate those invisible disabilities with a service dog. I wear bling-bling on my cochlear implant processor. On days my balance is REALLY bad, I use a bright purple, metallic cane. This works for ME. It doesn’t mean it will work for YOU.

could’ve should’ve would’ve

If I could’ve… if I shoud’ve.. or if I would’ve – I suppose if I hadn’t been on the verge of tears I would have told this woman:

Do you know that before Chloe, I spent 20-30 minutes before work each day changing outfits trying to find one that hid all the bruises from my falls?

Do you know that when the elevator was temporarily out of service this week I didn’t have to cancel class because Chloe was able to counter-balance for me on the stairs?

Do you know this cochlear implant bling-bling helps people remember to face me when they speak if it is obvious I’m not hearing well?

Do you know all these patches and certification tags on Chloe’s vest legitimize her role as a service dog so that I have less access issues?

Do you know it takes me 45 minutes to get groceries each week now because Chloe picks up the things I accidentally drop compared to the 2 1/2 hour trips I use to have?

Do you know I never have to ask a stranger to pick up something for me now?

Do you know I’m working again because I don’t have to worry about putting students out to pick up pens, erasers, markers, or papers for me in the classroom?

Do you know I never have to worry about missing a phone call now?

Do you know I have the sweetest, “kiss me awake” alarm clock in the whole, wide world?

DO YOU KNOW I THINK YOU NEED A DOG BECAUSE YOU OBVIOUSLY DON’T HAVE ENOUGH LOVE IN YOUR LIFE?

Ok… maybe that last one is unnecessary.

But the reality?

weather vane

People with invisible disabilities or chronic illness are more likely to deal with VANES instead of vanity each and every day. We have things we pay attention to so that we stay SAFE, red flags that remind us we are pushing our limits. Boundaries in place to keep us from over-doing things. I know my body better than anyone… even my doctors. This past week we had torrential rains on Thursday. On Wednesday, I was in “full disability regalia“. Chloe, cane, and fresh batteries in the “ears” and still I wobbled and fumbled my way through the day because there was a system coming into our area! A student said, “Wow your balance is really off today!

I replied, “Yes! I’m a human barometer and much more accurate than the Weather Channel!

A thoughtful pause and then, “Is there an app for that?” (snicker… I love my students).

Like a weather vane that helps farmers or meteorologists know which way the wind is blowing, people with disabilities have things in place that allow them to “take their pulse” each day to see how to safely navigate the world around them.

I’ve met a good number of people who have a service dog. I’ve never met anyone that I suspected of choosing to do so because they wanted the attention. And so please understand that the only one who is vain in my partnership is CHLOE.

♫ You’re so vain
You probably think this POST is about you
You’re so vain
I’ll bet you think this POST is about you
Don’t you? Don’t you? ♫

That’s OK. If Chloe’s weakness is that she is warm and friendly… I can live with that.

Denise Portis

© 2013 Personal Hearing Loss Journal

Permission to SLOSH

coffee spill

“I didn’t give you permission to slosh!”

Tuesday was NOT a great day. When it is rainy out and the barometer matches my internal “tilt-a-whirl” meter, I expect to have a bad day. When it is sunny though, I get aggravated when I’m having balance problems. Tuesday was a beautiful, sunny morning! I’m beginning to think that fatigue may have something to do with it because I know I didn’t sleep well Monday night.

I headed downstairs with my morning coffee, a whole day ahead of me to work from my basement, home office, only to slosh the coffee right out of my cup on the first step. I paused. I took another two steps down. More sloshed out. I paused. Aggravated I was going to have come back with cleaner, I took one more step. Coffee sloshed out. I…

(paused? WRONG)

I screamed. “I didn’t give you permission to slosh!”

Hound dog, (a.k.a. Chloe the wonder dog) sat at the bottom of the stairs safely out of the way and quirked an eyebrow at me. ♥♥ Talking to your coffee again, Denise? ♥♥

I’d do anything to be in CONTROL

One thing that I hear people with disabilities complain about is that they really would love to control their lives better. They may even make feeble attempts (or aggravating ones) to do so.

People with hearing loss may monopolize conversations. If they are the only one talking, they don’t have to deal with the frustrating inability to hear well.

A friend of mine with Meniere’s disease admitted to me that she actually acts cold and disinterested around people because she found it keeps them at a distance. If they approach and try to talk or even hug her hello, she is overwhelmed with vertigo and nausea.

I think it is natural to want to control our environment – even our lives to a certain degree. It can help us feel safe, even secure! But let’s face it… there is much in our lives that we cannot control.

We can eat right, not smoke, and exercise and still develop high blood pressure if it is in your genes. (Yes, it can improve your health and maybe delay the onset, but according to experts you are still at risk).

We can do our best to live a healthy lifestyle and still get cancer. We can be a safe driver, never going over the speed limit and still get in a car accident. We can avoid high-crime areas and still be the victim of a crime. There is much in life that is NOT in the scope of our control.

Control or Management?

I feel very frustrated when I’ve carefully watched the weather and still get caught away from home when it starts to rain. I didn’t give the skies permission to SLOSH! I can wear tennis shoes and have my head up and eyes open on a walk, and still stumble and trip over a crack in a sidewalk. I feel – erm – sloshy.

However, people with disabilities or invisible illness don’t have to give up hope of controlling their symptoms. You may not be able to control your life, but you can manage it. Symptoms cannot be controlled but they can be managed. One of my favorite psychologists is Albert Bandura. He was one of the first to define and promote self-efficacy. Bandura said that self-efficacy is, “the belief in one’s capabilities to organize and execute the courses of action required to manage prospective situations” (Bandura, p. 72, 1994). It makes us feel better to MANAGE our lives.

With my hearing loss, I can always make sure I carry extra batteries, clean and dry my cochlear implant and hearing aid, watch my service dog for cues, ask people to email instead of call, and request moving to a quieter area to have a face-to-face talk with someone. With Meniere’s, I can avoid sodium, limit caffeine, be prepared for bad weather, and keep my service dog’s vest in tip-top shape so she can help me. I’m “managing” my life as a person with disabilities. This gives me confidence and helps me feel less – SLOSHY.

You’ve done all you can

In spite of what I’ve learned, sometimes life still sloshes. You’ve done everything in your power to navigate life and “hope for the best and plan for the worst”. Life ends up sloshing anyway. I’ve wanted to put my coffee in a sippy cup before. Or one of those cups that can be used in a moving vehicle. You know… those “slosh-less” ones? But I want my coffee in a beautiful, ceramic mug. The kind I can wrap my hands around and feel the warmth while inhaling the pleasant and comforting aroma of slow-brewed coffee! The risk of “sloshing” is worth it.

I hope that even when you’ve done all you can to manage your life, you can pick yourself up and wipe off the sloshed coffee when life …

T I L T S.

Because it will… be ready for it! 🙂

Denise Portis

© 2013 Personal Hearing Loss Journal

Bandura, A. (1994). Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behavior,4. New York: Academic Press, pp. 71-81.

Intimacy and Invisible Illness

sexy

I had numerous emails come in just during the last week, asking me to reconsider letting readers share their own personal stories about intimacy. We have enough, I think it makes a “good read”. Why I think it is really special though, is because it is a topic that is important, yet one that can be difficult to talk about with others. As always, I invite you to write for Hearing Elmo if you have issues, topics, or concerns that mean something to YOU. A person who lives with invisible or chronic illness, or love someone who does. Just email me at denise.portis@gmail.com to find out how. I don’t want to take away from the message and influence of this post. So I’ll shut up now. BIG GRIN! Here are a few of your stories – in your own words. I’ve made only minor spelling corrections and omitted only minor sections (with notice to the writer) for things that were maybe a little too detailed. 🙂

Intimacy and “Me”

Life happens with or without a hearing loss. Most intimacy doesn’t have anything to do with our hearing loss, but yes, hearing loss can impact how we interact with others.

I longed to have more close friends when I was in junior high and high school. The deal breaker was not that I giggled a little too much, or was a little shy at times. The deal breaker was that I was the odd girl out. I didn’t get included because I couldn’t hear well enough to be like everyone else. I didn’t get the printed memo on social activities. Maybe I was blissfully ignorant, because I ended up with a close dedicated relationship with someone I truly love, and who loves me for who I am.

I do have a few intimate friendships (non-sexual) with just a few friends. I get support that I need from a few individuals, and then I have a lot of acquaintances that I can talk to. And, more importantly, I do get out and participate in activities that I’m interested in, and I am connected to other people.

What I really miss? Is that I don’t have a close friend to call up and do something with on the spur of the moment. I don’t have a girlfriend that I talk to every day, and that asks if I want to grab lunch, or go shopping. I don’t get invited to parties, and I’m not asked over to the neighbor’s house have a drink or sit and chat. I missed out somehow, and I’m not quite sure how to correct that. Is it hearing loss? Or is it personality?

Maybe it’s confidence. I’ve gained confidence in some areas, but maybe I’m still hesitant when I should be reaching out to others. Is it hearing loss? Am I afraid of what others will think of me? Or should I embrace that perhaps it’s a little bit of hearing loss, and a lot of who I am as a person?

One thing I do know, is that I have to make things happen for myself, I can’t wait for the world to come and get me. Hearing Loss or not.

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Intimacy is affected in my relationship because I’m always fatigued and in the bed resting a lot. My illness also causes pain which comes and goes. Since I’m fatigued and in pain a lot, there are many times that I don’t feel like being intimate. My partner lets me rest and after enough times being told no, he stopped along. This quickly turned into almost no intimacy at all.

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My partner and I are intimate despite her disabilities. I guess if we have problems it is that both of us wish we could be more spontaneous, but it just isn’t possible. Because of the issues she deals with, I know it has to be a “good day” in addition to it needing to be a low stress day. She is fast getting to where she will need to stop working full-time. We can’t afford for her to go through the lengthy process of SSDI but working part-time would be in her best interests. I think maybe things can be more spontaneous after she is able to rest more. A 40 hour a week job for some kinds of disabilities is really difficult. It makes all other parts of life shift way down the list of priorities. I love her. If the shoe were on the other foot I know she would be just as supportive. So the spontaneity I do miss, but one does what one must to make sure both are getting their needs met. There is so much more to love than the physical anyway. At least that is what we believe.

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As two adults with hearing loss, my husband and I are used to intimate relations with limited sound. That never deterred us; I would say we have a very close, loving relationship. Hearing loss has never affected us much in that area, except that there’s not a lot of ‘giving directions’ happening in our lovemaking since neither of us would hear it! We rely more on observing each other physically than listening for sounds of pleasure, for instance.

For me, the hardest thing was going completely deaf. Lovemaking feels more isolated to me now, especially since we are ‘bedtime, after lights-out’ people. I’m extremely nearsighted and, of course, don’t wear my cochlear implants to bed. Without them, I’m 100% profoundly deaf. So in the dark of night, I can’t hear (or lip read) and I can barely see. The absence of sound is very pronounced to me in that circumstance; even though I didn’t have much hearing before, I had enough to make me feel more connected during lovemaking and less isolated. This bothers me more than I realized it would, but unless we get busy with all the lights on (not happening!) or only if I have my CIs on (very, very rare) then it’s just something I have to get used to.

I miss the closeness of lying in bed, at bedtime, and chatting with my husband. There is no casual conversation for us – I have to actively face him and lip read, and make sure the lights are bright. So now we lie next to each other and read in silence. It’s frustrating to me that I can’t just make casual comments to him like I used to, and have that ease of conversation. It’s now a huge chore because of my deafness.

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I became deaf later in life, I am now 21 but I also have Chronic Regional Pain Syndrome. Intimacy and relationships are difficult regardless of ability sometimes however illness or invisible disabilities further complicate matters. My boyfriend has been wonderful, from learning signed English (ASL confused the poor man) to supporting my decision for a hearing/service dog, but we have our problems too. He sometimes forgets that I cannot hear him and will get exasperated at having to repeat himself, or he may become slightly terse when reiterating what others have said. At the end of the day it’s our open and honest communication that allows us to continue the relationship. Sometimes the little things he says maybe helping me answer the phone or telling me I’m beautiful no matter what, and the not so little things like our date nights or the days I cannot walk, where he me to my wheelchair or through the house, to reminding people at church that I cannot hear and that at certain times even small touches are excruciatingly painful. Our lives are not perfect but no ones is, we each have our faults, but our love lets us see beyond them.

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I have multiple disabilities and have been married for over 25 years. My husband and I are no longer intimate. Some of it is his fault (high blood pressure meds and failure to discuss options with the doctor), and some of it is mine. I know you, Hearing Elmo, from a Meniere’s forum. For many of us even laying flat is impossible. Being held, or other things that lead up to intimacy is just impossible without passing out or feeling so disoriented you want to throw up. That isn’t exactly helpful to a male ego. I’ve said “not now” so often it is “not ever”. We love each other. We just aren’t loving in that way now. We seem to have reached a point where there is an unspoken agreement that this is the way it is. I’m sure it isn’t healthy on our relationship, but it is where we are right now.

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First a little about my chronic illnesses:

Like you I have bilateral Meniere’s, I have a cochlear implant, and will be getting a second next month. I have pretty much constant disequilibrium and use a walker to get around. I also have chronic migraines (most days I have a headache on the scale of 5 or above). I have asthma that has gotten out of control, so we are working to get that better. I have Idiopathic Intracranial Hypertension (high cerebral spinal fluid), this can cause severe headaches when exercising. But the two things that often inhibit physical intimacy the most is chronic hip and pelvic pain.

My husband and I used to have a very hard time showing intimacy. Mostly this was my fault, I was paralyzed by fear of pain. He was trying hard not to make me feel that I needed to do more than I was comfortable with so he would not flirt or do anything like that. This made me feel more uncomfortable.

After we started going to therapy because I was having a hard time dealing with the loss of my independence, we started communicating better. We’ve always communicated well, but when I started feeling like I was a burden it was hard to hear what was being said….I hope that makes sense. And my husband was having a hard time knowing how to voice things he was feeling. We did not show our intimacy for fear of hurting each other, or for fear things would get started and I would end up having to stop things because of pain or dizziness.

We began getting even closer than before, (we’ve had a great marriage, so it amazed me when things started to get even better.) We talked about everything. Communication that is understood has been so important to our marriage. We’ve always communicated, but we didn’t always make sure the other understood what was being said, we simply assumed it was.

We are now very intimate. Not always sexual, but always loving. It was important for my husband to know that I still wanted a sexual relationship with him, I was just scared. It was important for us to understand that if something happened because of my illnesses that caused us not to be able to follow through, it didn’t mean I was less of a woman, or he wasn’t doing something wrong. It was also important for me to know that he still found me sexually attractive, even at those times when I couldn’t possibly think of doing more than cuddling. Every day we say little sexy things to each other. Like when he’s getting dressed I’ll make little remarks to let him know how sexy he is. He tells me these things all the time, or we reach out and touch each other suggestively. We’ll joke telling the other they are a tease, then answer with, “No it’s a promise”. It’s so important to know that even though our sexual relationship has changed we still find each other as sexy as we ever have. A little flirting here, a little touch there….it all means so much.

When my husband looks and me and tells me that it amazes him that he is still so attracted to me even after all these years, it makes my heart swell…and I know that he is not thinking of my illnesses, or the weight I’ve gained because of the medication, he doesn’t see that, he sees me…and I love his so much for it, and it makes me want to try to have sexual relations more often. Our actual sexual intimacy doesn’t happen as often as either of us would like, but we both make each other feel desired every day, and that has kept our marriage fresh, and sexy.

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I served USArmy and was discharged in 2010. I am 26 and do not believe I will ever be in a relationship again. I have scars, both inside and out. This subject is important so I’m glad we have a chance to talk about it. PTSD rules my life. Sometimes the scars on the inside are worse than outside scars. I cannot imagine being intimate with someone. Doctors tell me I need more time. I don’t know how time can help since I even have anxiety even in my sleep. I look in the mirror and can’t love myself. How could I hope for someone else to love me? For now I am working on relationships – the friendship kind. Even that is hard. There is so much broken. Maybe for some of us intimacy is hoping for too much.

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I have a hearing loss and am 23 years old. My hearing loss has become a lot worse in the last 5 years. I don’t date. I’m reasonably attractive and work out to try and stay in shape. I work full-time and have about 4 semesters of school left. So I am in a position that I see a lot of people some of who I’m attracted too. Some are attracted to me too, but once they learn how hard it is to talk to me they stop trying to get to know me that way. At work, I’m able to speech read and write notes to clarify. I follow-up with email a lot after our team meets. I guess it is too many hurdles to jump over to date me. Right now I’m content with finishing school and then seeing if I can get into grad school fairly quickly. My goals keep me going right now. But someday I want to have a family. I would make a great mom. I cannot imagine being intimate with someone. I can’t even communicate on a date in a dark theater! So for now I just keep plugging away reaching personal goals. I do worry that a goal of being a wife and mother may never happen, however. Hopefully I can meet someone who can see past the hearing loss. I’m not contagious!

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I have MS and I am a male. I always liked to be the odd ball. My wife left me about two years after my diagnosis. I work from home right now and have a service dog. I have my routine but don’t actually get out there and mingle much if you know what I mean. I think maybe I should go back to church. I stopped after my wife left me because I was pretty peeved at God. My brothers tell me I would probably be more likely to meet people at church to look past the MS and be willing to be my friend. Why does that make me sad?

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I am in my 30’s and have a great sex life I suppose. I date a lot and enjoy the company of others. My friends and family tell me I pick real losers though when it comes to intimate relationships. Some question if I think I cannot get anyone better, someone who will treat me right. I have friends who don’t have neurological disorders who choose losers to be with too though. So it isn’t because of my own invisible illnesses. I guess I just have poor judgment. I’m willing to accept I might lack the self-esteem to try for better though.

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I am a TBI survivor – motor vehicle accident. I’ve been in a chair for six years and have had no intimate contact since the accident. I don’t speak well. I don’t move well. I’m still here though. I have hopes, dreams, desires, and goals just like everyone else. Do me a favor and don’t tell people like me the right person will come along. Or that someone will love me enough to look past all of this. Love starts with friendships right. So just be my friend. Don’t be afraid of people in a chair. Just be our friend. We aren’t asking for a commitment of more than that. People are afraid of wheelchairs. My left arm moves funny and people either look at me like I’m weird or like they want to help. I hate both of the looks. I have to think a long time before I speak. People come up and talk and then continue to talk even when I’m trying to think about what I want to say. They walk away after they stood there doing all the talking. I want to scream at them. My dad says that people are not comfortable with silence. They don’t understand I’m trying to respond. I would love to have people that would just sit with me and enjoy the scenery. If I could sit without having to listen I can say what I want to say. I have a lot to say.