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

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I Would Rather Walk with a Friend in the Dark, than Alone in the Light

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I would rather walk with a friend in the dark, than alone in the light — Helen Keller

I graduated from Walsh High School in a rural area of Colorado in 1984. Fast forward 34 years <wince> and I am graduating again with now my final degree. In 1984 I was a healthy young woman with a moderate hearing loss in one ear. In 2018 I am a middle-aged woman in a perpetual state of getting healthy <wince>, profoundly deaf (and “hearing again” as long as I am wearing my bionics) and an adult with disability from Meniere’s disease and Post Concussive Syndrome.

It may surprise you to learn that I am happier and healthier (emotionally and psychologically) than I was at the age of 18. Life has been hard – and continues to be, but doesn’t everyone experience that in some form or fashion? My challenges have made me who I am today.

The 2018 Denise, has found a life worth living by embracing my unique challenges and focusing my life and energy in the disability community. Oh yes! It’s hard sometimes… dark even; however, I am amongst friends, fellow warriors, super heroes, and advocates.

May I just say, “THANK GOD FOR THE INTERNET”? There are numerous research studies that support that the Internet has connected, educated, and created a platform for advocacy for those with disability. The community, the friends I have found over the last 34 years has made every challenge I’ve shouldered worth it. Most of the people with disabilities I have come to know have different challenges and diagnoses. Yet all work hard to experience the best quality of life they can. We use a variety of accessibility tools, medications, assistive devices, and medical procedures to maximize every opportunity while insisting on a productive and meaningful life. We are stubborn. We believe in self-care. Our priorities tend to be the things that really matter. Some of us are Spoonies.

My dissertation, something I have become quite passionate about, revolves around the theory that traumatic events and diagnoses do not have to destroy a person. As a matter of fact, a wealth of research (my own included) supports that these events can stimulate growth – the foundation of Posttraumatic Growth studies.

This doesn’t mean that I do not have bad days. They happen. Those bad days are something you recognize and experience as well. Yet I have learned that walking in the dark and challenging path of life with disability with all OF YOU, is far better than any walk I took on the lighted, well-tended path alone.

My challenges are progressive. Do you know that doesn’t even bother me? I’ve learned how resilient I am and I have learned to:

  1. Reach out to my community when needed for support
  2. Ask for advice and work-arounds
  3. Find new ways of doing things
  4. Rely on a loyal service dog for minuscule but necessary tasks I was too afraid to bother others with
  5. Believe in myself
  6. Pray hard – but work harder
  7.  Never stop learning
  8. Believe the future is accessible
  9. Stand with others
  10. Be vulnerable and open about the good and the bad

uphill-battle

I’ve also learned to CHOOSE HAPPINESS and to do my best to spread that message. It may seem like a difficult choice some days, but cognitive psychologists agree that if you deliberately change your thinker (your chooser), it will change your feeler, and show in a change in your behavior. It is amazing what “choosing happiness” can do to your personal outlook. Don’t be afraid to embrace the days you scream and cry and cuss up a storm (sorry mom). Those days will happen as well. I have learned though that if my focus is positive advocacy and choosing happiness, those screaming days are few and far between.

I’ve always admired Helen Keller. This intelligent and gifted woman had neither sight nor hearing. Yet Helen learned that her life “in the dark” was pleasantly full of like-minded friends and associates. She knew the value of walking in the dark with a friend. I hope you can learn to embrace that mindset as well.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

Chronic Pain – Part ONE

Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar with these questions.

I have lived with disability for much of my life. Hard of hearing from a relatively young age, severely so through my 20s and 30s until I began to hear again at age 42 with cochlear implants, I am no stranger to the need to make adjustments. I have lived with other disabling conditions, too, which unlike hearing loss and deafness are largely a product of the external forces of trauma and abuse. At 54, I have lost count of the moments when I’ve told myself “keep on, keep on”. As a result of physical abuse which once took the form of being sent down a long flight of stairs, backwards and head first, I have experienced increasing challenges with my vestibular (balance) system. Once a series of intermittent episodes of vertigo, my imbalance is now chronic. For over two years now, I have not had a minute where my equilibrium is not in a struggle with the space around me. Along with this is a condition that I have managed to cope with for 38 years, for which I had no name until recently. Three years ago I wrote a short piece describing life with trigeminal neuralgia. Things have changed regarding my TN status since then, but it’s instructive to see where I was at that time: https://visionsofsong.com/2015/07/10/into-the-sunshine-living-with-trigeminal-neuralgia/

It is not the only pain condition I live with, but it is the most distinctly life-altering. About six months ago, I realized that the medication treatment that was giving some relief wasn’t doing much anymore. Trying different medications and doses brought no help. I spoke with my doctor, who referred me to a hospital that does high volume work in the areas of gamma knife radiosurgery and microvascular decompression, the only two procedures currently advised for my condition.Both procedures have a relatively high success rate for trigeminal neuralgia, 70 to 80 percent depending on various factors. After consultation, in early March of this year I underwent the gamma knife procedure. After a week’s time, I felt some improvement, which was incredibly uplifting for my mood, which had reached new lows. Knowing that it can take a couple of months to see the full effect, I hung in on the bad days, rejoicing in the better days in between, and anticipating further improvements. In the past couple of weeks, I have not been doing well. This past week has been terrible, and I have found myself bursting into tears as much due to despair as to the pain levels. My world, which was shrinking due to severe, chronic facial pain, was beginning to open up a bit, only to feel shrunken once again. I can’t decide which is worse, not thinking there would be anything that could really help bring my pain levels to manageable levels, or trying something that may in the end prove to be a failure for me.

The depression I have been managing somewhat successfully stepped to the front of the line. I became obsessed with the idea of planning my death. Not yet planning my death, but finding the idea of planning it out, by suicide, an intriguing possibility. Why? Why now, when I’ve lived with physical and psychic pain for so long, does it seem like now might be a good time to end my life? What makes one moment better than another, or none of them the right time? As much as I have dealt with depression to varying degrees throughout the years, I don’t recall a moment exactly like the one I had this week, thinking that maybe I’m done, really and truly. I felt that if I expressly stated that to anyone close to me, they would call in the big guys on me, which I do not want. Besides, I’ve been feeling like I’m wearing out the handful of good, caring people in my life with my challenges. I did not want to burden them with such thoughts. I knew that I could call the National Suicide Prevention Hotline (found here https://suicidepreventionlifeline.org/) and opted to use the chat box to communicate rather than the phone. It took a little while to get to the front of the line, but I wanted to see what would happen. As a Mental Health First Aid instructor, I know what it’s for and recommend it often. I wasn’t sure if it made sense to call since I wasn’t sitting by the computer with a gun or a bottle of pills in my hand. I recognized my need to reach out, and am glad that I called. The person on the line didn’t tell me much I didn’t know, but I could tell they cared that I was struggling, and that meant a lot. At the end of the call, they ask for some feedback. One of the questions has to do with feeling hopeful/hopeless. I was able to say that I felt a little less alone after this brief conversation. It got me thinking about how much, and yet how little I need. I suspect this dichotomy is true for many of us. I can only share from my perspective, and from what I’ve teased from things shared by others over the years.

There has been a fair amount of discussion lately regarding the intersection of childhood trauma and health outcomes. If you would like to look at this in some depth, you may consider starting here, though there are many other resources: https://www.ucsf.edu/news/2016/10/404446/undoing-harm-childhood-trauma-and-adversity

As a survivor of (and sometimes thrive-r in spite of) sexual and physical abuse, having undergone several rounds of therapy to figure out how to cope, I did not immediately make the connection between my physical challenges and what I had experienced while growing up. The mind-body connection was happening in spite of my limited insight. Oh, I understood that my mood could be connected to my experiences, but pain? Not only acute pain, or pain that is persistent due to an event, but pain in parts of the body that were not injured, or if they had been, were still in pain long past when the bodily injury had healed. I have been handed and thrown off a diagnosis of fibromyalgia twice in 12 years. No fibro for me, thank you! It’s that diagnosis they give you when they don’t know what’s wrong, is what I would tell folks. If sounds so…hopeless. I know some who live with this diagnosis, and they find ways to make a good life for themselves. It felt like being saddled with one more thing that I didn’t want to carry.

But trigeminal neuralgia, that’s something they can tie to an event. In some cases it develops post-shingles. In others, trauma can be the culprit, and again, we suspect that is the case for me. I have been more comfortable talking about this severe and persistent pain condition than any of the others, yet there is no denying that all of what I experience is intertwined within me, and so perhaps the only way through all of this is through all of it. Still, I haven’t figured out what to say to myself to want to keep on during the worst moments. I think I put every penny I had on this horse winning the race, with the radiosurgery giving me significant relief for a while. If it doesn’t, I’ll need to see if I can find another message that is meaningful, to keep on, keep on.

I welcome feedback, and aim to follow up with another piece on the topic of chronic pain, disability, and the reconstructing of a meaningful life.

Deborah Marcus

https://visionsofsong.com

 

Comparisons Are Rarely Healthy

This summer I traveled to North Carolina to attend my nephew’s wedding. Although we didn’t get to spend very much time while there, it was great to see all my extended family. My parents and 2 brothers both live there, and my sister traveled from Texas with her boys to attend.

Seth and Megan Burhenn
Aren’t they cute?

I can’t remember what started the conversation, but one evening we started talking about Q-tips. The discussion included snippets of all of us understanding that Q-tips were not to be used to clean ears (at least not down into the ear canal), yet we all used them for exactly that.

My mother chimed in and said, “Well that’s better than Bobby Pins! We use to grab a Bobby Pin to clean our ears!

I admitted that I could remember my grandmother carefully cleaning her ear with the rounded side of a Bobby Pin.

Essentially we sat around talking about the stupid things we know we shouldn’t do yet do them anyway. Ahem.

One Up

Later while I giggled to myself and thought about that conversation, I had to admit how silly it was to try to “one up” each other on STUPID THINGS WE DO.

All of us play the “one up” game.

We shouldn’t.

One day last week I jot down some notes to prepare for this post. It hit me that at the age of 51, I have now lived more of my life as a differently-abled person than I have as an able-bodied person. I was left scratching my head wondering why it is still so HARD?

Side note: One of the suck things about progressive illnesses is that the person finds themselves in a near constant state of adapting. You’d think it would get easier the more you live it, but it doesn’t. At least… it hasn’t for me. 

I’m trying to learn to stop comparing myself to others. It’s taken a lifetime to just be better about ignoring the temptation of the “one up” game. I’m still guilty of it occasionally.

I’ve been in a bad place. (Part of the reason I haven’t posted like I should).

I hate to write when I’m in a bad place, but I am going to try to just continue to be real, vulnerable, and honest. Life is hard and we tend to try to pretend it isn’t so that others will not be discouraged. *Cue “The Good, the Bad, and the Ugly” soundtrack*

When I start feeling sorry for myself, two things happen:

  1. I hear my mother’s voice in my head, “No one said life is fair, Denise“.

AND

2. I start trying to dig myself out of the self-pity pit by reminding myself that “so-   and-so”  has to live with this issue, or that one, and I don’t. “So suck it up, Denise!”

Deb is one of my best friends. She gets me. I can bellyache to her and not have to worry that she will think I’m a wuss, a coward, or whiner. She and I have some similar challenges, yet shoulder different ones as well. For example, I do not deal with chronic pain. I’ve always admired people who persevere and live a victorious life and yet deal with chronic pain. Deb is always quick to remind me that we shouldn’t try to improve our outlook by comparing our challenges with others. Our challenges are our challenges, period. (Pretty profound, huh?) It only undermines our own value to fall into the habit of thinking we should suck it up because we aren’t as bad off as someone else. By whose measurement is bad — bad? Our struggles are just as real as the next person’s. It’s OK to acknowledge a bad day. It’s OK to say, “I’m struggling. I’m discouraged. I need help”.

This kind of “comparison thinking” is especially harmful to those with invisible illnesses and disabilities. You don’t have to have an adaptive device on your person to prove you are a person who has been forced to ADAPT.

Service dog bookends. Milo (left), Chloe (right)

I am currently partnered with my second service dog from Fidos For Freedom. My first service dog, Chloe, entered my life in 2006. At the time, hearing loss was my biggest challenge. New to the cochlear implant and in the early stages of a Meniere’s disease diagnosis, I had more than one encounter in public where people thought I was Chloe’s trainer. Looking at me, it didn’t appear that I needed a service dog. I had not yet “blinged-up” my cochlear implant and hearing aide, and was not yet a wobbly weeble. When I explained she was actually trained to assist ME, people were surprised. Now that my balance is so significantly impaired, no one asks if my current service dog, Milo, is my partner. We should never judge someone on appearances alone.

One of my favorite extra-curricular activities is my involvement in SODA. A co-advisor of one of the college’s student clubs, SODA (Students Out to Destroy Assumptions), currently has just as many active members with invisible conditions as we do members with visible ones. Yet all these fantastic young adults adapt. They struggle. They are all samfferent (same + different… did you just roll your eyes?)

I don’t know if it is young adults in general, or THESE young adults specifically, but I believe they are really adept at valuing each individual person and not comparing themselves with others. My co-advisor and I may use the word “super hero” too often within this fantastic group, but truly each one is a super hero in their own right and might.

And so are you.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Mitochondrial Disease in the News

Ruth and Gary Fox

I love having guest writers at Hearing Elmo because it helps all my readers understand and stay informed about various disabilities that, frankly? I have very little information and certainly a lack of firsthand knowledge. Ruth has written for Hearing Elmo before and I always welcome her contributions. For this post her husband, Gary, contributed as well. 


Mitochondrial Disease is in the news again, because of the battle between the parents and the English justice system over the treatment of little Charlie Gard. The form of Mitochondrial Disease that Charlie Gard has is extremely severe and very rare. It has damaged everything in his body to the extent that he requires medical life support to survive.

The core of mitochondrial disorders is energy.  Mitochondria is in every body cell (minus red blood cells) and is responsible for converting food to energy. When this does not work properly, it is call Mitochondrial Disease (or Mito for short). Mito affects everyone differently, depending on where and how the person’s mitochondria are affected.  Any body system that has defective mitochondria will malfunction and possibly progress to complete failure.

As a person with Mito, people have asked me what the effect of mitochondrial disease is.  For me, it means working with multiple medical specialist to maintain the function of weakened organs. Because the degree of energy and fatigue determines the rate at which my organs deteriorate, managing that energy level is my greatest challenge.

Some people use the spoon theory to explain life with Mito fatigue. However, my husband and I wrote another narrative that makes more sense to us. Instead of spoons, we picture a zero balance bank account.  Just about, everyone knows what it means to have a bank account and how the balance of that account affects his or her activities. They also know the pain of an overdraft charge.

A healthy person makes energy deposits into their account from food, rest and exercise and has energy left in their account at the end of the day to pass over to the next day.   People with Mito do exactly the same thing, but because their energy output is very low, their account drops to zero at the end of the day with nothing to share with the next day.

People with Mito know that all of their body’s involuntary organs like their brain, heart, lungs, ears, eyes, and digestive system need a huge portion of the limited energy they are able to put into their account.  The average healthy person is typically unaware of the energy use by their involuntary body systems.

After meeting the energy needs of their involuntary functions, using energy for self-care activities is next.   This includes things like bathing, brushing teeth, dressing, or eating.  Some people with Mito do not have enough energy in their account to do these things independently, and some can do them independently, but often need to rest to build up their energy account between tasks.

After basic self-care comes necessary health related appointments to the dentist, the primary care doctor, the endless specialists, therapy appointments, etc.   The person with Mito has to anticipate ahead of time how much extra energy these appointments will demand.  To avoid having their energy balance slip into the red, which means a Mito crash where involuntary body systems are short of energy and struggling to function, they spend days ahead resting more, and building up their account to cover that extra expenditure of energy.

Everyone gets health benefit from exercise.  People with Mito have difficulty with repetitive movement, as their energy accounts are often too low to replenish the energy used by their muscles fast enough.   Yet getting some exercise, even passive exercise provided by therapists, results in strengthening.  It takes considerable effort for people with Mito to balance their energy account with exercise.

Like every other functioning human being, a people with Mito, have the same desire to live independent lives as healthy people do.  This can mean parenting children, holding down a job, keeping up their home and yard, shopping, preparing meals, participating in religious activities, attending educational classes, enjoying leisure activities, and keeping up with friends and family.  Participation in these ordinary things are difficult, or even impossible, for people with Mito because their energy account balance is too low.

People with Mito can increase the balance in their account by careful budgeting of their energy.  They can chose to sit to perform their self-care routines, instead of standing as most people do.  They can use a mobility device to save the energy they would use to walk, to do something else.  They take advantage of seating that tilts to avoid using the extra energy that it takes to sit upright against gravity.  They can chose the timing of their activities to avoid extremes of temperatures, which will drain much energy from their account.

Finally, there are those unexpected life events that may totally empty a Mito person’s energy account:  mental and emotional stress (both positive and negative), illness and surgery.  A simple cold can be life threatening for a person with Mito, depending the amount of energy left in their account to fight it.  It can take days and even weeks for the person with Mito to replenish their energy accounts.

Though I cannot do everything, I want to do, and have struggles with my limitations; life is good, because I have learned by years of practice how to budget my energy. My husband helps too by taking on the more energy consuming activities, while I do the less energy consuming things in our household.  This way we can enjoy more of what life has to offer, together.

Ruth and Gary Fox


L. Denise Portis

© 2017 Personal Hearing Loss Journal

Why Using Opioids to Treat Chronic Pain Is Problematic and What You Can Do Instead

It is always a treat to have guest writers at Hearing Elmo. Today, we welcome Jackie Waters. Jackie is a mother, a homemaker, and a farmer who lives with her family on their farm in Oregon. She is passionate about providing a healthy and happy home for her family and aims to provide advice for others on how to do the same with her site  Hyper-Tidy.com.

As a country, we are consuming more prescription opioids than ever before. We are the leading opioid-using nation in the world. The opioid epidemic has reached a point where doctors are beginning to totally rethink the way they prescribe, and this directly affects chronic pain patients. This is all with good reason, however. Using opioids to treat chronic pain can be problematic.

The difference between acute and chronic pain

“Acute pain, if you will, is a bit of a no-brainer. Pain is a message that damage is occurring to our body, and we need to take action. From a medical perspective the physiology of acute pain is well understood; it’s associated with tissue damage and resolution of the pain is associated with healing of the injury,” says physician Gary Kaplan.

Chronic pain is much more complicated. We are often unable to pinpoint the exact causes of chronic pain, as all the signs associated with acute pain have long since dissipated. Chronic pain can involve a multitude of complex issues, including mental ones, and can affect multiple areas and systems of the body. Long story short, it’s hard to pinpoint.

While using opioids to treat acute pain is simple and relatively harmless, the use of opioids to treat chronic pain is problematic. Long terms use of opioids can have devastating physical and mental health effects.

Chronic pain sufferers can develop a dependency to opioids

Even when taken as prescribed, opioids are highly habit-forming. Many chronic pain sufferers misuse the drugs, however, and take them in ways that are more harmful than their normal administration (snorting, more frequent use, higher dosage).

One of the main problems with taking opioids for a long period of time is that they become less effective over time. This forces people to continue upping their dose, which leads to addiction.

“A property of opioid drugs is their tendency, when used repeatedly over time, to induce tolerance. Tolerance occurs when the person no longer responds to the drug as strongly as he or she did at first, thus necessitating a higher dose to achieve the same effect,” says DrugAbuse.gov.

How to manage chronic pain without opioids

Your ultimate goal may be to eliminate the use of prescription drugs altogether, but it’s important to know that any reduction on the use of opioids is beneficial to your health. In order to do this, however, you have to have alternative methods to manage your chronic pain.

For temporary relief of chronic pain, many sufferers turn to acupuncture, massage, hydrotherapy, and chiropractic care. All of these can work, but all do not work for everyone. You must find the type of acute care that best helps your specific type of chronic pain.

For more sustained relief, some lifestyle changes must be considered. If you are overweight or obese, this is likely the leading exacerbating factor of your chronic pain. Losing weight reduces stress on the bones, joints, and muscles. Adopting a healthier diet is probably the best long-term strategy for managing chronic pain.

Apart from that, exercise is your next best option. You might be wary to dive into an exercise regimen for fear that it will make your chronic pain worse, but in fact it’s just the opposite. Check here for five great exercises for chronic pain.

Short-term use of opioids to treat pain is not necessarily a bad thing – in fact, it’s a widely accepted medical practice. Problems arise, however, when people start to rely on prescription drugs to help them cope with long-term pain.

Photo Credit: Pixabay.com

When You Want to Smack ‘Em With Your Cane

handicapped-restroom

When you are differently-abled, going to the bathroom can be a pain in the… well?

… BUTT.

If you are partnered with a service dog, it can make the process even trickier until you get a nice routine down. Likely, one of the biggest issues for all of us is ACCESS.

In the United States, public restrooms are required to be handicap accessible. For restrooms that have multiple stalls, the number of required handicap accessible stalls depends on the total number of stalls in that location. All must have at least one, according to the ADA.

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Milo, my current service dog from Fidos For Freedom, Inc., is a very big boy. A German sheprador, Milo is 80 lbs. of helpful tail wags. Between my wobbles, cane, and big boy helper, I require some room to use the bathroom safely. I will be honest with you, I use to get aggravated if waiting for a handicap stall, only for the person to exit and they looked perfectly fine to ME.

A student leader in the Anne Arundel Community College‘s SODA club (Students Out to Destroy Assumptions), reminded me during a particular scathing belly-ache rant, that not all disabilities are visible. I think it is great when student leaders can challenge long-time advocates, don’t you? Kudos.

So yesterday, I stopped in at the women’s bathroom prior to my Diversity Institute workshop, to find the bathroom empty with the exception of…

… yeah, you guessed it,

the handicap stall. I stood there (with legs crossed) and waited for the person to exit. I even took out my phone to appear less desperate. Milo’s ears perked up (indicating a toilet was being flushed), and I stepped to the side about a foot so that the person could exit safely. I didn’t bat an eye when the person who came out “appeared perfectly abled”. It is no longer my default judgment to assume the person didn’t need the larger size, rails, and access to the stall.

I was surprised, then, when the young woman, said, “Oh gosh. Sorry, I use this so I have more room for my book bag and didn’t think someone who actually needed it would be waiting!

I’m pretty sure my mouth dropped open.

I counted to ten and purposefully and deliberately maintained the position of my cane on the floor where it belonged, and said, “Yeah, there’s always a chance someone will need it who is waiting for the accessible stall!” I smiled (honestly! I did!) and scooted around her with Milo, closed and locked the door.

I was so mad I couldn’t pee. (Just bein’ honest folks!)

I have never had proof staring me in the face before. 24 hours later I am still processing it. My new default is a good one though. We cannot judge who uses a handicap stall even if there are other stalls empty.

Before you assume, remember:

  1. The handicap stall might be the only one empty when they came into the bathroom.
  2. Perhaps the other toilets are “nasty” or out of order.
  3. Perhaps it is a parent with a small child to assist.
  4. The person may have a genuine need for the stall. Some common invisible disabilities include:                                                                                                                  A) Anxiety disorders (especially phobias such as mysophobia, claustrophobia, and OCD) 

    B) Early stages of progressive diseases (MS, Rheumatoid arthritis, Parkinson’s, cancer, etc.)

    C) Digestive disorders (IBS, Colitis, etc.)

         D) Pain disorders (Fibromyalgia, Mitochondrial, and joint diseases)

         E) Chronic fatigue and related illnesses

F) Age related conditions

So… put the cane down; no clobbering innocent folks relieving their own needs.

BUTT… But —

For those of you who use the handicap stall even when there are others available and you prefer “more space”,

well… shame on you.

That wasn’t nearly as satisfying as busting someone up ‘side the head. I remind myself that I can be an unfeeling jerk and clueless twit about things I don’t understand. If we all learn to put ourselves in someone else’s shoes, the world would be more respectful and kind.

Denise Portis

©2017 Personal Hearing Loss Journal