Overcoming It

A hero is just someone who is brave a little bit longer

For a former “farm girl”, I recognize it goes against the grain to say I HATE RAIN.

Besides… I don’t HATE rain, I hate the consequence of rain.

Not the consequence of providing necessary water to growing plants.

Not the consequence of washing the world clean.

I hate the consequence of navigating a rainy day. It promises bruises, headaches, falls, and sudden yelps and “CRAP, woah!” exclamations.

The irony is not lost on me that although I am profoundly deaf (when not wearing my cochlear implant),

although I have post concussive syndrome from numerous falls,

although I have a bum ankle that I badly sprained 4 years ago and wish to God I had broken instead,

… Meniere’s disease is the battle for which I must “don the cape”. Something that falls into the “invisible illness” category. A disease/disorder with no cure and few agreed upon symptom smashers.

Meniere’s and weather changes are incompatible. On bad weather days I sometimes have to psych myself up and recognize that I cannot change the weather today and I cannot cure my Meniere’s. What I can do is “don the cape” and make the best of it.

Today I had my heart set on going to training at Fidos For Freedom, Inc., the organization from which I received both of my service dogs. My current service dog, Milo, loves going and the extra practice does us both good. I usually don’t wave the white flag on a day until I actually get up and go look at the sky. Lord knows, our weather forecasters are not very accurate about a “3 day” or “5 day” outlook. (Super strange that it seems the m0re technology available to us, the more meteorologists miss the forecast). I usually know it’s raining outside as soon as my feet hit the floor. I certainly cannot hear it <grin> as I don’t “have my ears in yet”. This morning I knew as soon as I swung my feet out of bed that it was raining. It’s fairly easy to guess when the entire room is spinning and the floor seems to be missing under my feet.

I always start out strong. I CAN DO THIS. I let the dogs out and start my coffee. Something I do each and every morning. No matter that I am doing it while hugging the nearest wall or counter.

I didn’t sink to the floor this morning, sobbing, after letting the dogs in for breakfast. I hung on to the chair rail molding on the wall and shook, said a few choice words, immediately asked for forgiveness and pled in genuine prayer to help me let go and walk to the kitchen. I’ve learned that caving to the despair only exacerbates my symptoms.

So I’m not going to Fidos For Freedom, Inc. today even though Milo-bear is looking forlornly out the window wishing we weren’t at home.

Please do not misunderstand this post. I’m not looking for sympathy. I am not inviting you to my pity party. I simply want to share what it is like to live with a chronic, invisible illness. It might also surprise you that I am glad

happy

untroubled

delighted

pleased 

… at peace with having this disease. If I did not have Meniere’s disease, I know that I would not have the heart and passion for people who live with invisible illness. When I am the one tagged to produce a post for “Hearing Elmo”, I do not do so from the keyboard of an expert. I don’t have the answers. I don’t have anything profound to share today.

NOTE: Like to write? Want to share your journey? Hearing Elmo welcomes guest writers!

Instead I can salute and encourage all who must “don the cape” and simply make it through today. Overcoming one hour at a time and making the best of it. Shauna Niequist said, “… what I can do is offer myself, wholehearted and present, to walk with the people I love through the fear and the mess. That’s all any of us can do. That’s what we’re here for.” 

We are super heroes because simply “overcoming it” is our default and salvation. It’s not always pretty and I don’t always “rock my cape” with grace, drive, and power. Sometimes I just feel pissed. But…

I’m overcoming it. I’ve had practice. I’ve got this.

And friend? So do you.

Nope. It ain’t easy. You can overcome it. You have before. You will today. “Don the cape” and get through today.

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal

A Prisoner of STIGMA

Tonight (4/19/17) is the 2nd annual d.A.M.N. event (disABILITY Memoirs and Notes) at Anne Arundel Community College. I was asked to share my presentation on Hearing Elmo.

PowerPoint: https://app.box.com/s/qkdo19k20djznhlpeezo7js24ik5f0mn

Presentation:

My name is Denise Portis and I teach Psychology courses here at AACC.

 

Thank you for coming to our 2nd annual d.A.M.N. event.

 

Today I want to talk to you about being a prisoner of STIGMA. I have been a disABILITY advocate for 25 years. It was not very difficult for me to reveal hearing loss and Meniere’s disease. However, the disability that had the greatest impact on me was mental illness, and THAT I chose to hide from everyone outside my immediate family.

 

SLIDE 2

 

What is a stigma? A stigma has SHAME attached to it. One source defines it as a mark of disgrace associated with a particular circumstance. If anything is well known for having a stigma associated with it, it is mental illness. I didn’t want my friends to know, my co-workers to know, my parents or siblings to know, or even my children to know until they were much older. I had become a prisoner of the stigma attached to mental illness without ever going to trial. Yet, I was as incarcerated as any person charged and tried.

 

SLIDE 3

 

I have struggled with depression and anxiety most of my adult life. I tried to hide it and even get help for it quietly, being careful not to reveal my diagnosis to anyone but those closest to me. I had heard that publicly owning it would follow me in my medical records. People would think I was unstable, unreliable, and needy. I had heard a number of accusatory and negative comments once I began choosing who I would disclose this to. I’m still surprised I didn’t allow early comments to zip my lips and go back into my jail cell, remaining a prisoner to the stigma. However, I began to experience real freedom in acknowledging what was wrong with me. That acknowledgment changed the wrong to right. For the first time I was able to understand what my diagnosis were. Mental illness is an illness. It isn’t chosen, it can be treated, and a victorious life could be mine, So I began to tell EVERYONE. It became a very real part of how I chose to be an advocate. For me, transparency worked.

 

SLIDE 4

 

And yet, throughout my determination to live free, I saw people who were given a death sentence because of their mental illness. Amy is one of my heroes. If you’ve heard of Project Semicolon, you’ve heard of the movement she began. Amy said about Project Semicolon, “In literature an author uses a semicolon to NOT end a sentence but to continue on. We see it as you are the author and your life is the sentence. You’re choosing to keep going”. Amy took her own life last month.

 

SLIDE 5

 

Luis Montalvan came to speak at AACC in 2015. Many of us in the SODA club even had our picture taken with him. Luis was a national and renowned speaker about PTSD and travelled with his service dog, Tuesday. Luis took his own life in December.

 

These two individuals were very open about their mental health disorders. Being open made a difference. Both actually found doors of opportunity available to them because of their openness. I have to tell you when I first heard about both of their deaths, I cried. I shed tears because I know what it is like to get really tired of facing a new day with mental illness. It is hard. Even though I have chosen to surround myself with people who accept me exactly as I am, even though I am open and honest about my disabilities and refuse to be a prisoner of stigma, I totally GET what it feels like to WANT to give up.

 

Are Amy and Luis cowards? Do I have something they do not? No, and NO. Their lives and their deaths simply act as a reminder to all of us that mental illness is HARD. The way I combat the hopelessness and the aloneness is by being open. I present my story and my choice simply as a way for you to examine if this will work for you. If stigma is crippling you and making you feel like a prisoner, you may want to consider a jailbreak.

 

SLIDE 6

 

Be vocal. Fight in the open. Insist on acceptance and understanding. You may not find it in your current group of friends and family. I’m not telling you that you should walk away from THEM. I am asking you to look for revealers. Look for people who do not shy away from the diagnosis, who have learned not to be ashamed nor captive to their illness. They are out there. They can be found.

 

SLIDE 7

 

At AACC the SODA club makes it easy. The group is committed to being assumption destroyers and helping to erase the stigma associated with all types of disabilities. Those that are visible and easily seen, and those that are invisible and are only known upon “reveal”. We call our group superheroes. Their super powers are different. Each have strengths and each work hard to make a difference in a superhero kind of way. If you are looking for a place to make a difference on campus and within your community, we invite you to be a part of SODA.


L. Denise Portis

© 2017 Personal Hearing Loss Journal

Can You Be Arrested for That?

My favorite cane...
My favorite cane…

I have friends who are police officers. One, Carl, is actually chief of police for a district in our area. I see him most Sundays, and tomorrow I plan to ask him, “Can you be arrested for that?” I love his sense of humor and he and his wife, Pam, are two of my favorite people. Though I know he will be witty, I also know he will be straight with me. Anything that pertains to the law, he’s gonna be frank with me.

Maybe I should back up though, and tell you the story? <grin>

First of all, I’m really tired. I could list you dozens of citations that link differently-abled people with fatigue and insomnia. I’m usually good about listing all those for you, but honestly there are over 26,000 articles since 2012 alone. (Yes… I counted, or rather Google scholar did!). But I digress…

When I’m tired I have a little more trouble filtering what I say. I am much more apt to just say the first thing on my mind. I’m trying to live with the “pause – respond” method (thanks for that Toby Mac post, Helen), and being mindful of not saying the first thing that comes to mind really helps. When I am tired though, I’m less likely to turn that filter on.

I have a dog in hospice care at home (sweet, retired Chloe), and I am very likely involved in way… too… much. Finishing my dissertation, teaching four classes, volunteering at a number of places; the list goes on an on. Just color me tired. This tired woman, with turned-off filter, entered Giant grocery store on Thursday. Milo-bear (my current service dog from Fidos For Freedom, Inc.) was tired as well as we had just completed a long training at the county police academy and he had a fairly long demo (that he NAILED). I only needed to get a few things, and so encouraged Milo for a last push before heading home.

When I’m tired, I wobble. <ahem> Ok. I wobble all the time. However, I wobble MORE when I am tired! I had one of the smaller carts, Milo, cane, and enough time that I did not need to rush. This didn’t seem to matter. I was a mess. I even wobbled when I moved my field of vision from one shelf to another. Being late-deafened, I do not always hear things in a big, cavernous store with lots of tile and hard surfaces. I turned suddenly, and almost plowed into a man standing there shopping with one of those hand baskets. He threw up his hands and watched me wobble, screech (just a little), and grab for everything stationary in my vicinity.

No face plant (this time). I whooshed out a breath of air, and locked eyes with him and was getting ready to say, “Wow. That was close“. He beat me to airtime, however.

“Well you are more than a little pathetic today, aren’t you?” with a grin and twinkle in his eyes.

Now… I’m late-deafened. I often mishear things. My husband could tell you a thousand stories about WHAT I THOUGHT I HEARD. He’s one of the few voices I can hear on a telephone, and has never let me live it down when he called and said, “Dinner at six?” I misheard and thought he said, “Dinner and sex?” Maybe inside I was thinking, “yes, please“, mature adult that I was said, “Excuse me…?” Yeah. That one has been hard to live down.

So this smiling man with a twinkle in his eye standing there waiting for me to respond, may NOT have said, “Well you are more than a little pathetic today, aren’t you?” I had to give him the benefit of the doubt.

Maybe he said “phonetic“. Eh, likely not since I only screeched and had not said anything.

Maybe he said “poetic”. I could dream.

Maybe he said “prophetic“. Perhaps he sensed I was getting ready to assault him.

To clarify, I said, “Ummm, pathetic?”

“Yes”, he replied, “because you….” his voice cut off because at this point? I had my cane raised.

I poked him with it. HARD. I’M pathetic? You’re the pathetic piece of humanity standing there making snide comments about people who are a little different than you!” 

He rubbed his chest where I poked him, mumbled something that I’m not EVEN gonna pretend I heard well or understood, and wandered off. I sat there hyperventilating.

Milo-bear looked up at me like, “Are we done yet?” cool as a cucumber. Me? My cucumber was fried.

As I stood there wobbling and taking deep, calming breaths, I gave myself a pep talk that the guy likely just had a poor choice of words. He seemed friendly, nice even. I’m sure he didn’t mean the way it sounded… the way I took it. I even had the grace to ask God that if He brought me face-to-face with the man later in the store, I would apologize and try to explain how his comment made me feel. Thankfully, I did NOT run into him, because… well I wasn’t really wanting to apologize.

Yes. I should have just moved on, or perhaps even “only” blasted him with my “how pathetic are YOU” rebuttal. I need to keep my cane to myself. (Can you tell I am preaching to myself?) Who knows why he chose the words he did. I make poor choices all the time.

And I do mean ALL the time.

So perhaps I need to practice the “pause method” even more:

13661858_10153727086711179_5341764973726458521_o

Denise Portis

© 2016 Personal Hearing Loss Journal

 

More Vulnerable than I Thought – Stronger than I Imagined

IMG_3128

Earlier this summer my parents came to visit. For some reason, I always have a “project” for my Dad. For some reason, he never seems to mind. This time, he built and secured a lattice porch screen to give us some privacy between our deck and the neighbor’s house. We have a huge yard, but it is long and narrow–not very wide. One of the first things my Mom and I did was plant Morning Glories. This beautiful vine has done so well this summer. It’s a childhood “feel good” memory for me, so I love greeting the blooms each morning.

I think one of the things I love about Morning Glories, is that they are (ahem) … GLORIOUS in the morning.

IMG_3129

I love coming out in the morning, in the quiet and cool AM environment, and having these cheerful flowers greet me.

VULNERABLE

I think one of the most difficult things about chronic illness and being differently-abled, is a sometimes, overwhelming feeling of vulnerability. I don’t know about YOU, but I hate feeling vulnerable. I’m not talking about the healthy kind of vulnerability where one learns to open one’s heart to another. I’m not talking about learning to be transparent and (at times) brutally honest (or, receptive of someone being brutally honest to YOU). I’m talking about the kind of vulnerability where you know you are at risk – in trouble – and floundering.

I am feeling pretty vulnerable. I hate having an illness that is progressive. Even though I work my butt off trying to be independent and capable, each year it seems to be more difficult to “get my glory on“. I love mornings. I’m a (disgustingly) cheerful early-bird person; perhaps, part of the reason I have been able to greet the Morning Glories with a smile on my face. While standing and watching the dogs race around the yard and work on waking themselves up, I often find myself reflecting, even praying at times. Lately, I think I’m perpetuating my feelings of vulnerability. During my AM REFLECTIONS, I have been thinking about where I was physically a decade ago, five years ago… and even last year. Ten years ago, when I was only 40-years-old, did I know that I would navigate with a service dog and cane? Did I understand that I would only be able to hear when I had my cochlear implant connected? Did I know that I would have a pronounced limp from numerous twisted ankles as the result of falls? Did I know that on the evening of August 23rd, 2016, I would have numerous bouts of vertigo, nystagmus, and several panic attacks between bedtime and when my alarm clock kissed me awake? (The benefit of having a service dog and retired hearing dog as your alarm clock). Nope. I didn’t know this would be my life. It makes me feel vulnerable (and depressed).

STRENGTH

I am my own cheerleader.

Don’t get me wrong. When I need encouragement, I know how to reach out and ask for help. This practice being, a different and healthy kind of vulnerability. If you are a person with chronic illness, invisible or visible disabilities, and special challenges that make life rather difficult at times, you may have no problem telling someone “I’m done“. I do have problems with that. I find it easier to say, “I’m struggling“, and less easy to admit “I’m done“.

I think part of it is because I don’t want to disappoint anyone. Even at Hearing Elmo, I try to keep things positive and encouraging. As a co-advisor of a student group for people who are differently-abled, I want to model confidence and a “can do” attitude. But honestly? Sometimes, I’m just done. This morning (after the night I had), I could not “get my glory on” in spite of my special flowers greeting me the same as usual in a beautiful late summer, sun-rise welcome. I found myself struggling. I found myself feeling vulnerable, depressed, and on the verge of giving up.

When I cheerlead for myself, I tend to default to a number of cheers:

  1. There are other people worse off than I am. Yet, they are productive individuals who find purpose in life.
  2. I have support from people who care about me, who encourage me to utilize everything I can to be independent.
  3. I am making a difference. It doesn’t matter if my niche in this big world is a tiny pocket of influence. If I can help make a difference in one, it is still making a difference. 
  4. All the things I enjoy, and people I love, are opportunities and relationships I would not have if I didn’t have the challenges I have.
  5. I know, without a doubt, that I am a better, stronger woman because I have Meniere’s disease and am late-deafened. Calhoun and Tedeschi (2014) explain it best: “The encounter with a major life challenge can also include an increased sense that one has been tested, weighed in the balance, and found to be a person who has survived the worst, suggesting that one is indeed quite strong” (p. 5). 
  6. Life can be difficult. It’s a good thing I’m STRONG.

Ultimately, the way I “keep on – keeping on” is recognizing that this is hard, but I CAN do this. I’m going to have bad days. I’m going to need help. I’m going to fail, mess up, SCREW up, and want to GIVE UP. When I am weak and vulnerable, I am also strong.

I’m also learning that it is ok to say, “I’m done“. (Ouch. That hurts to even type it!) However, I recognize that this admission… this vulnerability, also means I’m strong. Stronger than I ever imagined.

Denise Portis

©2016 Personal Hearing Loss Journal

Calhoun, L. G. & Tedeschi, R. G. (2014). Handbook of posttraumatic growth: Research and practice. New York: Psychology Press.

The Last Straw

last straw

The Last Straw (that broke the camel’s back): The final, additional, small burden that makes the entirety of one’s difficulties unbearable.

Isn’t it interesting that there are so many idioms and colloquial expressions that mean “I’m done”?

The straw that broke the camel’s back (1816)

The last feather breaks the horses back (1829)

The final straw

Hitting a brick wall

Hanging up one’s gloves

The final stroke

I’m sure there are others. I’ve had a heck of a month. No worries – I actually thrive under (some) pressure. However, once in a while each one of us is simply not going to be able to take ONE MORE THING. That ONE MORE THING is often inconsequential and “small” in the grand scheme of things. Perhaps that is why we are so frustrated for breaking under what seems like a “small” thing.

This morning I was stepping off the porch when a “throw your head back to sneeze” came out of nowhere. Just. Like. That. I was horizontal with a teeny, tiny bit of remaining tunnel vision. My ears were roaring. I was nauseous. I had two very concerned service dogs in my face.

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Do you know I sat there and CRIED? I use to cry over everything. I mean, every, little thing! Happy, sad, angry, or confused, I’d unload some stress by crying my eyes out. These days I rarely cry. If I’m crying now, something is seriously wrong, or I have no reserves left and I’m “just done“.

It only lasted a minute or two. With retired neighbors on both sides of me, I can’t sit on the ground wailing very long before I garner some unwanted attention. I chanted to myself, “Suck it up, buttercup!” and struggled back to my feet. I’m sporting a few new bruises, and my pride? Well heck. My pride wasn’t hurt at ALL. When you have Meniere’s disease, pride isn’t crushed in falling, for one falls a lot. Pride is when you KEEP yourself from falling <big grin>

I felt so much better and finished watering the hanging baskets and flowers before making my way back inside. I likely over-analyze things too much. When psychology is your main squeeze, you tend to analyze everything. I took a few minutes to think about why falling on my face and experiencing a short bout of vertigo set me off. I determined it was “the last straw“. Have you ever felt that way when burdened with one more “little” thing?

It is very normal to have days like that. We all have stress. Stress can be good – and bad. Do not confuse stress with burnout. How do you know if you are becoming burnt out? According to the Help Guide organization (2016),

You may be on the road to burnout if:

  • Every day is a bad day.
  • Caring about your work or home life seems like a total waste of energy.
  • You’re exhausted all the time.
  • The majority of your day is spent on tasks you find either mind-numbingly dull or overwhelming.
  • You feel like nothing you do makes a difference or is appreciated.

(para. 6).

I love this chart (for I am a “chart” kind of person). I think it does a terrific job explaining the difference between stress and burnout:

Stress vs. Burnout
Stress
Burnout
Characterized by overengagement Characterized by disengagement
Emotions are overreactive Emotions are blunted
Produces urgency and hyperactivity Produces helplessness and hopelessness
Loss of energy Loss of motivation, ideals, and hope
Leads to anxiety disorders Leads to detachment and depression
Primary damage is physical Primary damage is emotional
May kill you prematurely May make life seem not worth living
Source: Stress and Burnout in Ministry

As you can see, both stress and burnout can be dangerous. Short-term stress, and at times – chronic stress, are a normal part of life. The “last straw” can actually be a good thing if it means you do something to alleviate some stress.

I cried. I hugged my dogs. I over-analyzed to my heart’s content.

However, the “last straw” can also be a prerequisite to something far more dangerous.

So what do you do when you feel your knees buckle and your back breaking? Well the first step in successfully recovering from collapsed camel syndrome is recognition of the problem or problems. Take some time to evaluate where you are at in your life. Are you over-extended? If so, what can be cut out? Start working on de-stressing. What can you take off the back of your camel?

Are you getting enough rest and taking care of yourself by eating right, getting some fresh air and sunshine, and laughing out loud occasionally? If not, make it a priority to do those things. They can strengthen “your back“.

The Help Guide organization explains how we can unload some of the burden on our camel:

Burnout prevention tips

  • Start the day with a relaxing ritual. Rather than jumping out of bed as soon as you wake up, spend at least fifteen minutes meditating, writing in your journal, doing gentle stretches, or reading something that inspires you.
  • Adopt healthy eating, exercising, and sleeping habits. When you eat right, engage in regular physical activity, and get plenty of rest, you have the energy and resilience to deal with life’s hassles and demands.
  • Set boundaries. Don’t overextend yourself. Learn how to say “no” to requests on your time. If you find this difficult, remind yourself that saying “no” allows you to say “yes” to the things that you truly want to do.
  • Take a daily break from technology. Set a time each day when you completely disconnect. Put away your laptop, turn off your phone, and stop checking email.
  • Nourish your creative side. Creativity is a powerful antidote to burnout. Try something new, start a fun project, or resume a favorite hobby. Choose activities that have nothing to do with work.
  • Learn how to manage stress. When you’re on the road to burnout, you may feel helpless. But you have a lot more control over stress than you may think.

(Help Guide.Org, 2016, para. 23).

Finally, acknowledge how incredibly resilient camels are! In Arab cultures, the camel symbolizes patience, tolerance, and endurance. Yes, at times you will need to ask for (and hopefully receive) help. This is a terrific article on finding help: (Where to Begin: Finding Help During Chronic Illness).

camel2

Denise Portis

© 2016 Personal Hearing Loss Journal

Help Guide.Org (2016). Preventing burnout: Signs, symptoms, causes, and coping strategies. Retrieved May 26, 2016, from http://www.helpguide.org/articles/stress/preventing-burnout.htm

When “LIFE” Happens and Your Glass is Half-Full

glass half full2

One frustration that I often hear from Hearing Elmo readers is that living with a disABILITY or chronic illness is “manageable” if only LIFE itself were a little easier. However, the old adage is true… “Life is hard“. It just is.

I take an unconventional interpretation of the “Glass Half Full” expression. I realize the original meaning is — Are you an optimist or a pessimist? I look at this analogy in a similar way that the “The Spoon Theory” describes energy levels, daily quotas of tasks, etc. For some of us, our glass is never completely full. I wake up first thing in the morning after a good night’s rest, and my glass is half full. Don’t get me wrong… I’m in a good mood. As a matter of fact, I’m one of those annoying “morning people“. I grin ear-to-ear, greet the dogs and take them out, fix my coffee, and eagerly open my calendar to see what the day holds.

Because I have had a hearing loss and Meniere’s disease for over 25 years now, I have learned to manage my time very carefully. I work hard to not “bite off more than I can chew“. The great thing about being an adjunct professor at a community college, I can stretch my 3-4 classes a semester out over the day and week so that I have “down time” for office hours or simply chill time in between classes. I am involved in a number of community service and social justice issues, but I work hard to make sure monthly meetings do not interfere with my “regular scheduled programming” (a.k.a. my LIFE).

Have you noticed, however, that just because you have a disABILITY or chronic illness, LIFE and its occasional sucker punches, still occur? We don’t get special treatment. Just because our glass starts out at the beginning of the day — HALF FULL — doesn’t mean that LIFE and the normal crap that happens within it, will not happen to us as well.

You are going to catch the flu.

You are going to have unexpected car expenses.

Someone is going to hurt your feelings.

You will be treated unfairly.

It is going to rain (and if you live where I do – it will rain a lot).

Your dog is going to be sneaky and eat grass and then surprise you with a present around 2 AM.

You may experience a divorce.

You may become estranged from an adult child or (once) close friend.

You will be accused of something you did not do.

You may be treated with disdain and anger as you navigate your “normal” in a world that does not view you as such.

A doctor is not going to listen to you.

A spouse or significant other is going to get frustrated with you – as if you can change your “normal”.

Your alarm is going to go off and you will want to hurl it through the window.

You will accidentally burn supper.

You are going to trip (and if you have Meniere’s – often!)

You will be misunderstood.

You will lose people you care about and will grieve.

Grief

Last week, my precious father-in-law passed away. My husband and children went to North Carolina and thankfully arrived before he was gone. I stayed home to take care of pets, cover classes for my husband, and “hold down the fort”. Can I just say I hate,  “holding down the fort”?

My family members are home now, and I am grateful I will have the opportunity to attend my father-in-law’s Celebration of Life later this summer.

I am running on EMPTY. This is final exam week and the extra stress that comes with grief and worry for my loved ones has taken a toll. You see… LIFE doesn’t pull any punches. Just because you have a disABILITY or chronic illness, you will still experience the normal things in LIFE that every person does. Losing people we care about is part of LIFE. It sucks. It hurts. It is hard. For those of us with a glass that starts “half full”, it may mean we need to take care to – TAKE CARE.

I normally go to bed between 9-10 PM. This past week I have made an effort to retire between 8-9 PM. We’ve had an excess of rainy weather which causes my balance to really be a trial for me. I am taking extra measures to make sure I change elevations carefully (stairs or bending) and am giving my service dog a serious work-out with various skilled tasks that I can do when my balance is not as wobbly. I’m trying to eat healthy, balanced meals.

Experiencing grief is a normal part of life. It cannot be avoided, and we cannot wish it away. If disABILITY or chronic illness is a new normal for you, I encourage you to prepare in advance for LIFE. We are not granted special privileges just because we have special challenges. So my advice is to do what you can to have a plan in place for when LIFE happens. The plan may include steps to take extra care of yourself. It may mean you make that phone call or send that email to someone you know you can dump on safely and wail or whine to your heart’s content. You may want to make an appointment with a counselor (so have one in advance on standby in the event you need an objective listening ear).

The Benefits

I learned something important over the last week. If I have prepared – as best I can – to absorb life’s normal sucker punches, and take steps to function in spite of a half-full glass, I can still BE THERE for those I care about.

I am not so energy-depleted that I fail to recognize the needs of others. I can support (as best I can) those who are grieving. Because I’m getting extra rest, I can think of small (seemingly) unimportant things that can make a difference in the life of my grieving husband. Like… making Cheeseburger Hamburger Helper for supper (something I cannot even eat but is his major comfort food). I can take on some extra chores around the house to give him the opportunity to have some extra time to grieve either openly or privately. I can be a listening ear (difficult but doable when you have a hearing loss). These simple things would be virtually impossible if I didn’t have a plan.

I am not so naive to believe that having a plan will mean you never have anything take you by surprise. LIFE is really good at surprises – some good and some bad. You cannot prepare and plan for every surprise. I hate to be a downer and fess up that at times I’m just DONE. For whatever reason, I allow hopelessness and despair to rule and reign in my heart and mind. For me, it helps to acknowledge that I’m at the end of myself and need help. It may mean seeking spiritual renewal. I may need to overhaul my schedule. I may need to just experience the YUCK. Sometimes all one can do is wade through and survive. The sun really DOES come out tomorrow. (… and thankfully? my weather forecast for tomorrow really does include SUN).

glass half full1

Denise Portis

© 2016 Personal Hearing Loss Journal

Mindfulness: And the Skies Opened Up

IMG_2764

I apologize for how long it has been since I have posted anything. I am one week from finishing all my coursework towards my Ph.D. and have been busy working, going to school, and finalizing my dissertation committee. To say I’m exhausted is an understatement. I try to be serious and mindful about how much rest I am getting. I was thinking last week when I turned the big 5-0, that I have now lived longer as a person with disABILITY and chronic illness than I lived without those challenges. It influences what I have chosen to study and what I am passionate about. When you are ABD (All But Dead — just kidding: all but dissertation), you tend to think about your dissertation each and every day. This means that everything I am reading and researching for the literature review of my own work is on my mind each and every day. I even dream about it! “Predictors of Posttraumatic Growth in Persons with Acquired Disability” takes up much of my brain power.

These past few days I have been “chasing a rabbit” (like my retired service dog, Chloe)  and reading published articles on mindfulness as it incorporates one of the major domains of posttraumatic growth. I suppose “mindfulness” started out as a Buddhist tradition; however, in the last 8-9 years, the field of psychology has come to recognize it as a means to treat numerous physical and psychological disorders. In my short personal history of 25+ years, I have learned that folks with acquired physical challenges–whether the result of illness, accident, or genes–also experience comorbid anxiety or mood disorders (Carson, Ringbauer, MacKenzie, Warlow, and Sharpe, 2000; Siegert & Abernathy, 2005; Weintraub, Moberg, Duda, Katz, and Stern, 2004). You do not have to convert to Buddhism to practice mindfulness. Kozlowski (2013), explains that mindfulness has been Westernized by psychology and “it is purposefully devoid of spiritual or religious connotations and focuses simply on the act of awareness. And if you want to take it to a level that we can all relate to and understand, at its core is stress reduction” (para. 5).

You’d think as someone who has worked so hard to hear again, I would rarely purposely “go deaf”. Yet, I have discovered that if I want to do some deep thinking, praying, and just spend some time being aware of all the “stuff” in my life, I have to reach up and click my cochlear implant off. I need the quiet to take the time to be mindful of what is currently stressing me (and how to de-stress), what my priorities are, and how I can make a difference TODAY in the life of someone – ANYONE. My bionic hearing is wonderful, but I cannot focus when my processor is busy – processing. So I “go deaf” – on purpose. I need to reduce distractions. For me that means being alone with my thoughts and perhaps a pad of paper nearby so I can jot things down as I think of them.

Mindfullness & Preparation

Learning to be mindful, meant that I learned to change how I view disABILITY and illness. I learned not just to experience my “new normal”, but to own it. With that acceptance came the understanding that I am able to make a difference in such a way that I would not have been able to had my “normal” not changed. I likely wouldn’t know the people I know. I would not have been drawn to studies about posttraumatic growth. I wouldn’t have chosen to invest my time in student populations of individuals with visible and invisible conditions. My life – that I embrace and love – would not be what it is today.

Learning to be mindful also taught me to prepare. I knew before this ten-day deluge of rain that I was going to have a much tougher time with my balance. I deliberately scheduled an additional hour of sleep each night, made sure I had my cane and service dog equipment ready to go each morning, placed my umbrella and rain boots by the back door, planned where to park to eliminate having to by-pass major puddles of standing water, deliberately stayed where I could see outside to determine when the rain had let up enough to take the service dog out or to make a quick trip to the campus testing center or copy center, and made sure that I allowed extra time to get to where I needed to go each day because I knew my mobility issues would require I traverse slowly and methodically. Even though the sun sets much later now that it is the month of May, I made sure that I had someone to drive me for evening obligations as I knew my vertigo would be worse by day’s end. Being mindful about the forecast and likely changes in my symptoms, meant that I could “hope for the best and prepare for the worst“. A nice little “perk” of Meniere’s disease is that if you learn to recognize the changes, you discover that you are a living, breathing, and walking barometer. (I’m likely more exact that local forecasters).

So… when the skies opened up, and delivered mist & sprinkles, steady, significant amounts of rain, and at times-torrential downpours, I was as ready as I could be! I suppose some folks might think that being so mindful and preparing for worsening symptoms, is the equivalent of being self-centered. I have learned the hard way, however, that if I do not take care of myself, it is impossible for me to take care of anyone else. I MUST take deliberate steps to insure I am prepared for long periods of rain, for example. If I do not, I will be nearly useless to anyone else. I’m not trying to avoid or escape the worsening symptoms I know are to come with a long bout of rainy weather. It is a type of cognitive-restructuring (from the psychologist’s point of view). As a person of faith, I work at being “mindful” of His promises. It helps me to remember He is mindful of me (Psalm 8:4, Psalm 111:5, Psalm 115:12, Romans 8:5-7, Romans 12:2, 1 Corinthians 2: 9-12, 16, Colossians 3:1, and 2 Peter 3:2).

A Long-Term Benefit of Being Mindful

In closing out this post (and greeting a day where the sun has finally breached the dark clouds), I want to share something I’ve learned simply because I really HAVE been at “this” a long time now. When you are mindful, purposefully focus your thoughts, prepare, and live deliberately, you will find that some good habits develop. On about “Day 6” of our recent monsoon-like weather, I came into my 8 AM class and… honestly? I wanted to go sit down and cry. I was tired of the vertigo, tired of the nausea, tired of the wobbling, and tired of the balance corrections. My head hurt and I was cranky. Darn — if it wasn’t only 8 in the morning! After booting up the computer, turning on the projector, and fishing out my lesson plans, I looked up to greet the class a few minutes before “launch”. I always try to ask students by name how things are going for them. I try to really get to know them and let them know I care. I noticed on changing my visual perspective an empty chair of a student who just buried her father. I caught in my peripheral, the quiet entrance of a young man making his usual unobtrusive way to his seat in the back. This young man just found out his cancer has returned for the fourth time. I saw the sleepy, single mamas and the students who took two early morning classes (including mine) before going to work for eight hours. I saw and waved to the student who attends classes, works four hours, and then goes to sit with her husband in a hospice center before staggering to bed each night. All the very temporary “woe is me” disappeared,

Just.

Like.

That.

Mindfulness doesn’t mean I do not have “bad days”. Being mindful, doesn’t mean I will always be in a super, good mood. However, being mindful gives me a better perspective and deeper appreciation for what really matters. I can more quickly rebound from self-pity and look for opportunities to make a difference – even in a sometimes “broken” body and weary mind. Being mindful allows me to wake up to a Milo-bear (service dog) alarm-clock with an attitude of “BRING IT ON“. For me… it makes a difference.

L. Denise Portis

© 2016 Personal Hearing Loss Journal

Carson, A. J., Ringbauer, B., MacKenzie, L., Warlow, C., Sharpe, M. (2000). Neurological disease, emotional disorder, and disability: They are related: A study of 300 consecutive new referrals to a neurology outpatient department. J. Neural Neurosurg Psychiatry, 68:201-206.

Kozlowski, E. (2013). Can Christians Practice Mindfulness? Huffpost Healthy Living. Retrieved May 6, 2016, from http://www.huffingtonpost.com/eden-kozlowski/mindfulness-and-religion_b_3224505.html

Siegert, R. J., Abernethy, D. A. (2005). Depression in multiple sclerosis: A review. J. Neural Neurosurg Psychiatry 76:469-475.

Weintraub, D., Moberg, P., Duda, J., Katz, I., & Stern, M. (2004). Effect of psychiatric and other nonmotor symptoms on disability in Parkinson’s disease. Journal Of The American Geriatrics Society52(5), 784-788 5p. doi:10.1111/j.1532-5415.2004.52219.x

 

Use Your Words

use your words

Not too long ago, I stood in the kitchen with a piece of my kitchen cookware, and dramatically wiggled the (seemingly constant) loose handle.

“Hey, honey,” addressing my husband, “hand me the thingie-majig out of the… (I gestured wildly towards the drawer)… the… the… THINGIE!”

My husband turned to face me and raised his left eyebrow. It was only the left one. You know… the one he raises when I’ve said something truly ridiculous and he’s trying to make a point?

… with an eyebrow? Yeah. That one.

I continued to gesture holding the slightly, heavy pan and sputtered and fumed, not daring to repeat my request, only adding a bit of a head flick towards the… the… THINGIE.

At this point my husband’s raised eyebrow lowered. Instead both eyes grew wide with alarm. Both eyes. You know… the ones he widens in horror when he realizes I truly expect him to read my mind and decipher both thingie-majig and thingie?

“Denise.” (When he pauses like that not only do I know I’m in for a mini-lecture, but it also means it may be deserved).

“You canNOT expect me to actually know what you mean. We’ve been married a long time, but I know thingie-majig, thingie, whatcha-ma-callit, and doo-hickey are interchangeable, obscure references to whatever happens to be going through your brain at the time!”

Do you know I tried to argue with him?

“Terry.” (Cuz, what’s good for the goose is good for the gander).

“I’m holding a pan. I’m jiggling the loose handle. I need to use this pan. The handle is loose. I need a screwdriver. The “thingie-majig” is a screwdriver, of COURSE” (I sighed super loud for a little dramatic effect and continued). “I gestured towards the junk drawer with my eyes, head, and elbow. The drawer is the “thingie”. Now who wouldn’t KNOW THAT?”

His eyes lost their incredulous look.  It was like watching a slideshow of emotions flick over his face.

First anger. (“Is she SERIOUS?”)

Next came a sad effort at stifling his laughter.

Then that lightbulb look. I love this look. It’s a slow-simmer realization that darn it. “Darn it, she’s right! That kinda made SENSE!”

He scratched his head and bent to collect the screwdriver from the bottom junk drawer. “It sucks that what you said made sense”.

I demurely accepted the screwdriver and sweetly…

Kept.

My.

Mouth.

Shut.

… because it didn’t make sense. I didn’t use words! Well, I did… but they weren’t real words. How can I call that communicating effectively?

When We Don’t Use Our Words

When you’ve lived with a chronic illness or disability long enough, the vocabulary associated with it becomes second nature to you. However, it doesn’t become second nature to others. You know all the medical terms and acronyms associated with your “new normal”. You shorten things and abbreviate information with people who really do not completely understand what you are trying to convey.

So… use your words.

  1. Use specifics.

Don’t say, “I can’t hear well”. Instead be specific and offer an alternative that may help.

“I can’t hear well in this cavernous room with so much background noise. Can we step out into the hallway to finish this conversation?”

2. Don’t leave out details that actually assist in expressing your need.

Don’t say, “Will you watch the dogs for me while I talk to mom?” Instead provide some more detail so that your request isn’t unreasonable.

“The dogs are wound up and my mom is trying to FaceTime me. Can you take them outside while I talk to her for a few minutes? I will be able to concentrate and hear her better.”

Don’t say, “Oh my gosh I need to leave right now!” Instead provide the details for your hasty departure so that whomever is accompanying you can make polite excuses and follow you in a more polite way.

“Oh my gosh. The ceiling fans in here are low and are moving in the opposite direction of my inner ‘SPIN’. I need to step out right away”. 

3. Avoid acronyms unless they are truly universal.

A.S.A.P.  – – – Yeah. We all know what this means.

BPPV – – – To most with a balance disorder or Meniere’s disease, we understand this to stand for benign paroxysmal positional vertigo. Few others will know what this is. I have even discovered that within disability groups (types), members will often use acronyms that they think are universal to “us” and they are not. For example in a Meniere’s support group I belong to, the members constantly refer to Meniere’s disease as MD. As a volunteer and participant of a service dog organization that includes a number of mobility challenges, MD stands for Muscular Dystrophy for both myself and many others.

I have been surprised how understood and universal the acronym MS is. Many, many people seem to understand it stands for Multiple Sclerosis. Why is that I wonder? (I’m asking for real responses and not rhetorically!)

4. Don’t use cues unless you have practiced them and both you and your “helper” understand the cue. 

If someone has facial hair or talks behind their hand, I’m likely not comfortable stepping into their personal space to hear them better. I will turn to my husband and touch the corner of my mouth. This means, “What’d he say? Repeat for me please?” We’ve used this FOREVER and it works without any hitches for us now.

I have trouble in places that have huge, open areas, or extremely, high ceilings. I may “look” fine. But if I pick up the vest handle on Milo’s equipment and quietly ask for my husband’s arm, he knows I’m about to do a face plant. If my husband isn’t around, I take Milo’s vest handle and head for the nearest wall so that I may continue with whatever I was doing safely, or talking to whomever I was trying to talk to before my “Woah!” I have never had someone argue with me about moving towards a wall. (I’m pretty sure people would rather move than pick me up off the floor).

5. Complete your thought. Use real words.

Just because you know what you are talking about, doesn’t mean you can voice a sentence fragment.

“Put it over…” 

Put it over where? If the other person wasn’t watching, they do not know where you mean for them to put it.

Recently I got up on a step stool (never a good idea) to dust the ceiling fan blades in the dining room. The fan was OFF, so “color me SURPRISED” when I was hit with a sudden bout of vertigo and actually felt my vision tunnel as I struggled to stay conscious.

“Please! Right now!”, I screeched.

Manners didn’t matter. Specifics about the timeframe were irrelevant. I fell. My husband did hear the fall. Well… he HEARD the screech too, but he simply didn’t know what it meant. It was vague. It could have been meant for the dog who just stole my sock for the fourth time and I was demanding it back. (Hey. It’s happened).

He was horrified he didn’t interpret my call for help for him to actually get his butt there immediately. I hit the carpet and the dogs scattered safely out of the way. Since I didn’t injure anything (dogs included) I could laugh as soon as I made it vertical again. “Well geesh. It’s not like I called your name or explained why I needed you! I should have said, ‘Terry! Come quick!’, right?”

As fond as I am of “thingie-majig”, “thingie”, “doo-hickey”, and “whatcha-ma-callit”, they aren’t words. They stand for whatever word is missing from our immediate working vocabulary. They are stand-ins, and we simply cannot expect someone to make sense of them. When it comes to our challenges and self-advocacy, it makes sense to —

Make Sense.

Use your words.

Be specific.

Use necessary details.

One final word of advice though. Sometimes we work SO hard to be good communicators, we may offer a little too much information. If I throw the acronym at ya, of T.M.I., — does that make sense to you?

Too Much Information. We can blow people away with unnecessary details and specifics.

Several weeks ago I ran into one of my students in the hallway and we were headed in the same direction. He opened the door to the stairwell and I leaned over to hit the elevator call button. He said, “Oh here, let me carry that” and reached for my bag assuming I would be able to take the stairs if someone carried my bag.

I said, “Oh no. I can’t take the stairs. Even though I have Milo it will take me ten minutes to make it up one flight of stairs. I’ll be late for class. I just can’t traverse the stairs safely at top speed. I need to wait for the elevator. I don’t always wobble, or have bad balance days, but I never climb or descend stairs safely”. By the time I finished with my over-zealous answer, he was practically cross-eyed.

“TMI?” I sheepishly asked.

“A little… but we’re cool!” he cheerfully responded. He ended up taking the elevator with Milo and I because we were headed to the same class and were discussing something he was passionate about – projective tests (ugh. Hate them!).

So just be careful about being specific and detailed, without killing someone with unnecessary information.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

 

Cowlicks and Compromise

cowlick

Cowlicks and Compromise

I have a cowlick. I remember the first time I noticed the little tuft of hair—likely no more than 20 hairs total, in my bangs. I was at my grandmother’s house who lived on the farm 1.5 miles west of our own farm. I was washing my hands at the sink, and could just barely see my face and head in the mirror above the sink.

<SIGH> “Lookit this hair! It won’t lay down! It points the wrong direction”.

My grandmother informed me that it was a cowlick. Astonished and more than a little bit worried, I gnawed on my lower lip as I contemplated this new information. Demanding to know the “when and where”, Grandma calmly informed that it happened when I was a baby. I remember thinking, “Who would let a cow lick their baby’s head?” Either Grandma was tired of my questions, or she could see that this greatly concerned me. “It’s like a blessing. Even the cows knew you had great potential. You can do ANYTHING!”

I know she thought she was encouraging me, and later it actually WAS the source of encouragement when I recalled her words. However, she likely would have cracked up if she’d known how often I struggled to wash the cow saliva off my head after that.

Dreams, Goals, and Aspirations

I was a lucky little kid. I grew up in a small town, surrounded by really good people and warm, supportive family members. I was always told that I was really going to be something one day… I was going to make a difference. Whether it was the school counselor assisting me with college applications, or individuals in my church, each time it was said I thought, “This cowlick is coming in handy!”

Obviously, I grew to realize the cowlick had nothing to do with my “can do” attitude, but that seed planted as a youngster, certainly added to my determination. I already had a hearing loss in my left ear as I headed off to college. I would have one more surgery during Christmas break of my Freshman year. I never considered my hearing loss an issue as I had perfect hearing in my right ear.

Compromise

I know that I am a little bit stubborn. It’s not just because I’ve been told that I am, I recognize that it is hard for me to compromise. I’ve learned to compromise, which has only helped my relationships and even my marriage. I think in the beginning I saw compromise as “caving”. Because I was raised to be a strong, independent woman, I didn’t see how compromise could be a valued characteristic. I think compromise is actually misunderstood a great deal; perhaps even, considered a weakness.

My favorite definition of compromise (because there are a lot of them out there depending on the context in which the word is used), is from Chen (2004), when “a person has to give up something less feasible and achievable in order to accomplish career goals and projects that are more practical and obtainable” (p. 17).

After losing the rest of my hearing (ages 25-30), and discovering that what I thought was a natural “clumsiness”, earning the nickname of “Accident Prone Portis”, was actually Meniere’s disease, I learned to compromise simply because I was forced to do so. I learned to use adaptive devices, technology, and even learned to ask for help. I learned that to be realistic, I needed to cross some things off my my “to do” list. There are some things I just cannot do. That’s ok. It doesn’t mean I’m giving up or “settling”. I do get tickled at folks sometimes when they email me to say, “You are so inspirational!”

I’m not.

Huffingpost Post did a terrific piece on this topic. “When we think about inspiration, what inspires us most are ordinary people who have done extraordinary things. We appreciate when someone has the ability and willingness to be selfless, creative, innovative, or just dares to be different” (Green, 2013, para. 1). I’m not this person. I have no more talent, will power—or even COWLICK POWER—than anyone else. I have really good days. I have really bad days. Just this last week I found myself doing a little “soul cleansing” in the shower (the only safe place to bawl my eyes when you have service dogs in the house who cue off your mood).

I was crying because I was mad. Mad, that I’m forced to change the way I do my make-up. (I know… right?). I’ve always thought my best “feature” was my big, brown eyes and dark eye lashes. When my Daddy finally allowed me to wear make-up I learned early on how to highlight what I thought was one of my best features. My husband told me when we were dating that he just loved my eyes and wrote poetry about my peepers.

With progressive illnesses, one discovers that it is just that.

Progressive.

It sucks. Between my poor balance, shaky hands, and neuropathy in my fingers, it is impossible for me to use eye make-up now. I’ve had to change—to compromise HOW to wear and apply make-up of any kind. This… THIS is what reduced me to tears for a solid week! Some of the folks who write me and tell me that I’m “inspirational” also say, “I find that I spend too much time feeling sorry for myself!” Y’all? I’m crying in the shower because I can’t wear eye make-up!

I’m not very hospitable, but one of the great parties I know how to give is a PITY PARTY. I think most people who live with special challenges and illnesses find that they spend an inordinate amount of time feeling sorry for themselves. One quickly learns not to whine out loud because others frown on that. Both God and my husband know that I’m a whiney-baby. Trust me – I get feeling sorry for yourself. If your “differently-abledness” has you feeling sorry for yourself, you aren’t alone.

Weiner, Graham, and Chandler (1982) did some fascinating research on pity, anger, and guilt. Anger and guilt are associated causes perceived as controllable, while uncontrollable causes of negative events trigger self-pity (Weiner, Graham, & Chandler, 1982). I didn’t choose any of the challenges I deal with on a daily basis. You likely didn’t “sign up for” the challenges you face as well! When things happen outside of our control, it is natural to have feelings of self-pity. Charmaz (1983) explains that the medical field tends to “… minimize the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones” (p. 168).

All of us grew up with dreams and aspirations. Some of us read books about having one year goals, five year goals, and ten year goals… working hard to lay the groundwork to make sure the goals were attainable. Instead, life happens. You may feel as if your life has been de-railed as you struggle to stay on track on a journey you had all mapped out.

The key is to compromise – but not give up. You may have to change the way you do things. I threw away all my eye shadow and purchased a magnified mirror and set up a means to steady my hand so that I can at least wear mascara. Other compromises are more worthy of being called “growth”.

Finishing school through distance education instead of doing so through a brick-and-mortar institution.

Using a cane and service dog to avoid running into quite so many walls each and every day.

Asking a student to follow-up with an email because I cannot hear them over the “buzz of sound” after class, and the acknowledgment that if they speak loud enough for me to hear them, everyone will hear.

Letting someone with normal hearing take the minutes of a committee meeting, even though my desire is to take notes.

Sitting on my caboose during the music in church because I cannot stand when the words are on a screen with lights, movement, and flashes. (Remember the good ol’ days when we used hymnals?)

 

Asking a family member to chauffer me around if I have to be out after dark (oncoming headlights trigger vertigo).

Using a cutting board ALWAYS, since not being able to feel your fingertips is dangerous when wielding a sharp knife.

Asking my service dog to fetch clothes out of the dryer so that I can fold them, even though I occasionally have to wipe doggie drool off of clean, dry clothing.

The KICKER compromise that many of us have to learn as a result of our new normal?

Asking for help to do something when we once did it all by ourselves.

When Do You Choose Not to Compromise?

A tough lesson in living a differently-abled life, is learning how to compromise by your own volition and to accept your own reality, and learning when NOT to compromise for others. Having a long-term blog on disability issues, invisible illness and chronic conditions, I have received one type of letter more than any other.

“My _______ (family, spouse, friends, co-workers) want me to stop using ________ (a cane, walker, service dog, assistive listening devices, medication) because it _________ (embarrasses them, makes them uncomfortable, makes me look bad).”

I wish I could reach out and SMACK UP ‘SIDE the HEAD, the folks who are saying this to you. They don’t realize all the compromises you’ve already made in order to successfully navigate your life and accommodate your new normal. (That’s right… you’ve resorted to mascara ONLY).

My friends? Don’t ever compromise… on chosen means of compensating just to make someone else feel better about your challenges. That isn’t compromise. That’s caving to a bully. Compromising by doing something differently in order to continue DOING means you are in control. Buckling to the pressure of someone who doesn’t live what you are living, will only yield bitterness, brokenness, and an unhealthy dependence. Do we need to ask for help sometimes?

Yes.

However, having a means of independence and being asked to give it up to help someone else deal with your issues is detrimental to your mental health and relationships. There are plenty of people who care about me that I have learned to not “talk out loud” around. They misunderstand the reason I’m belly-aching and offer selfish advice.

“You get so mad when people interact with your service dog. Why don’t you stop using one and find some other means to cope with your disabilities?”

This from a peripheral family member who:

  1. Is never around for me to ask THEM for help because they are in absentia nor have any meaningful intersection in my life.
  2. Is able-bodied (though mean spirited)
  3. Hates dogs

If using a service dog has enabled you to be more independent, then:

  1. Be more careful of whom you belly-ache too. Contact a fellow SD partner or a trainer.
  2. Find a way for the “drive by petting” interactions to become a positive advocacy channel.
  3. Join some face-to-face or virtual support groups with individuals who mitigate their disabilities with the partnership of a service dog.

I was recently contacted by the wife of a guy I graduated high school with in 1984. He’s coming up on the BIG 5-0, and she was looking for pictures “from way back” that we had so that she could use them at his birthday party and celebration. I took out some old yearbooks and began flipping through them. My senior yearbook had some great pictures of “all those from the class of ‘84”. In one section, the class voted on and selected one male and one female for specific “categories”. I was selected as “friendliest” and also “most likely to succeed”. (Don’t get any grand ideas… my graduating class boasted of 22 students). I sat there a couple of minutes wondering…

“Am I successful?”

“Did I waste my cowlick?”  

What I find valuable is making a difference, even if in only in one person. I have good days and bad days, but ALL days are lived where I look for and try to make a difference in at least one. It’s an adopted attitude that has really helped me adjust to being a person with invisible disabilities.

never-worry-about-numbers-help-one-person-at-a-time-2

Denise Portis

2016 Personal Hearing Loss Journal

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology Of Health & Illness, 5(2), 168-195. doi:10.1111/1467-9566.ep10491512

Chen, C. P. (2004). Positive compromise: A new perspective for Career Psychology. Australian Journal of Career Development. 13(2), 17-28.

Greene, R. K. (2013). What is the true meaning of inspiration? Retrieved February 1, 2016, from http://www.huffingtonpost.com/r-kay-green/giving-back_b_3298691.html

Weiner, B., Graham, S., & Chandler, C. (1982). Pity, anger, and guilt: An attributional analysis. Personality and Social Psychology Bulletin.  8(2), 226-232.

Through the Eyes of a Newbie

Milo Cade - Fidos For Freedom, Inc., Service Dog.
Milo Cade – Fidos For Freedom, Inc., Service Dog.

Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.

One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.

Is it scary?

Is it freaky?

Is it edible?

Is it alive?

What does Denise think?

At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.

I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?

Blowing It BIG!

I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.

I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and  she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted –  I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)

As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”

I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.

I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.

As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.

You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.

Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.

Denise Portis

© 2015 Personal Hearing Loss Journal