There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).
I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.
“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.
Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).
This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.
We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.
L. Denise Portis, Ph.D.
2022 Personal Hearing Loss Journal
Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.
University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/
Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.
After someone you love dies, you may discover some things about the person that you didn’t know. My Mom loved to sing. Because her generation (the “Silent Generation” 1928-1945) was different than mine (“Generation X” 1965-1980), the songs she would sing at breakfast (a normal occurrence) and in the evening were oldies. Breakfast was usually “Mockingbird Hill” (When the sun in the morning, peeks over the hill…).
When Mom was diagnosed in July of 2021, my siblings and I began to hear from her former students on FaceBook. As the ALS progressed and began to take away basic functions, we would read to her what her former students were saying. It was all good and brought many smiles and happy tears. While she could still talk, she would relay some story about the student that posted and it was as if she took us by the hand and walked us back to her teaching days. Mom was defined by what she did, a teacher. It was her real joy and privilege to teach for over thirty years.
One recurring theme from former students was that she would sing the first few stanzas of “Happy Trails” as they left class at the bell. Though knowing this song was a favored one, we were still shocked to learn she sang in public too!
I have been teaching now for 28 years. I have taught middle school, high school, and college-aged students. Having heard from so many of Mom’s former students since her diagnosis and subsequent death, it got me to ponderin’ — “what would my students have to say about me?” “Would they even remember me?” (Mom had been retired for 16 years at her passing).
Yesterday was the first in-person convocation we have had at Anne Arundel Community College since 2019. A recurring theme of the various administrators was to remember that the smallest things could make a difference. Even a taped message from the incoming SGA (Student Government Association) president reminded us that the “small things matter”.
I am a big believer in the difference “small things” make. For you see? It has been small things each and every day that have encouraged me to continue hiking that trail. My trail is not always happy, but it is a scenic and worthwhile hike.
People with disAbilities often express their concern that they do not matter anymore. Or perhaps they feel that with their disability, they can no longer make a difference. Many of you already know these things about me, but let me summarize some of my own challenges:
Late-deafened (25 years on)
Post Concussive syndrome (TBI as a kiddo and 11 concussions since)
Meniere’s disease
Vestibular disorder
Mental health diagnoses (Panic Disorder and PDD)
65% blind in my right eye (concussions)
If I had a dollar for every time I considered giving up, I could retire now! I’m no super hero. I’m not anything special. What I am is persistent and determined. Stubbornly resolved to connect at least one time each day with someone who needs encouraged, loved, high-5’d, heard, or acknowledged. Notice that none of these things require being an abled person! I know that many of my readers are people with disability or chronic illness. MANY have expressed to me the dismay they feel in being disabled, by NOT being able to make a difference. Their physical or mental health diagnoses have meant they have learned coping skills or learned a new way to do things. However, many still FEEL disabled because they feel as if these diagnoses take away opportunities for them to MATTER.
My friends? Please do not ever discount the difference it makes for you to be kind to the cashier at the grocery store. Smiling and saying a kind thing or two to the delivery person may completely turn their day around. Being kind and friendly to that young wait staff person can make a day that is crushing them seem not so burdensome. Send an encouraging email or message to someone you know is struggling. It can be life-changing for them. Make a phone call to someone you know who feels isolated. Take advantage of the way social media platforms “level the playing field” for those with disabilities through CONNECTING them with others. One small comment can make a difference.
I know this for a fact! I know because the
Deborah’s, Wendy’s, Kellie’s, Lisa’s, Candice’s, Sara’s, Stephanie’s, Kyersten’s, Felicia’s, Kimberly’s, and SO MANY more have taken 15 seconds to type me a message that encouraged me and rekindled my desire to keep on keepin’ on. I’m not saying it is EASY. For some, it may mean real “spoons” are used up (The Spoon Theory).
ALS is a horrible, terminal disease. My Mom suffered and died a terrible death. I’m still dealing with the fall out and likely will for the remainder of my own life. But do you know at the end, Mom could only roll her eyes, grin, and wink, but she did that as her hovering children did their best to love and care for her? She could speak some, but it was a real chore to understand, even with picture, word, and alphabet cards to assist while she could still point. Yes. There were days with tears and “why God?” conversations. Yet while DYING she continued to make a difference. These past 12 months cemented an already steadfast “heart beat” for me. NO MATTER WHAT, I can make a difference to someone. In my work as a suicide prevention and awareness advocate, one of my favorite sayings is “Your voice is your power”. Use it.
Choose to sing “Happy Trails” to someone upon departure. Choose to smile and say, “I truly hope you have a great day!” Sign to someone “happiness is a choice”. Send that email to a struggling soul, “I’m thinking of you today”. You have a purpose. It doesn’t matter how many disabilities or challenges you have. You still have the power to make a difference. This is your super power. Use it. It matters. Happy trails to you…
L. Denise Portis, Ph.D.
I have read your blog for many years. There have been many times when I wanted to give because of…
You are an inspiration. I love every blog you write. This one is amazing.
You are amazing! and such an encouragement to me!!! thank you. Silvia
All well said, Wendy!
I just realized I forgot to finish my thought in the first paragraph. I think when you say this kind…
My granddaughter Samantha Jean just turned two-years-old. Samantha is at the stage where she has opinions and expresses those opinions. These opinions vary from what she wants to wear today, to what she wants to eat, to what she wants to DO, and what she wants you to do. She is just full of opinions. She also is very independent already.
“I do it!” After caring for her a couple of weeks while mama was in the hospital having her baby brother (rather early), this phrase quickly made its way to “Samantha’s Favorite Words” list.
I had to learn to let her do it, even if I wasn’t happy with the results when she was finished. Thankfully, since she is only 2, I was able to distract her to “fix it” or wait until she moved on to another activity and straighten, organize, or re-do the activity to my satisfaction.
(Yeah. I’m a little OCD and a bit of a control freak!)
What I love about Samantha, is that unlike many two-year-olds, if she was NOT able to do something she rarely had a meltdown about it. I was amazed at the first time she asked me for “halp”, and graciously stepped aside to let me do it.
I heard these requests for “halp” for numerous things:
When trying to stick her head through an arm hole instead of the one designated for her – ahem – HEAD,
When trying to get blueberries to stay on her spoon,
When trying to safely navigate the steps on the back porch which were a bit too much for such short legs,
When her train rolled to where she couldn’t reach it underneath the buffet,
When trying to read a book,
When trying to get up on some of the furniture, (see photos)
Sometimes Samantha would ingeniously choose a way to do something differently so that she could stay independent in the activity. For example, if there was something for her nearby she could use as a means of boosting herself up on tall furniture, she might drag that toy or bench close to use it to navigate her destination without “halp”.
She cannot manage “Grandma” yet so she calls me “Geegay”. I figure she will get there so I think the latter is awfully darn CUTE. I loved hearing Samantha say, “HALP, Geegay!” throughout the day. She more often did things without assistance, but never hesitated to ask for help should she:
Figure out she really did need it to accomplish what she wanted to do.
Was too tired to find an accessible means to accomplish it on her own, or the effort wasn’t worth the “gain”.
I had to admit while living with her, I saw the lesson to be learned again and again.
Stubborn People with disABILITY
I realized the other day that I have lived with disABILITY longer than I have lived without. The feeling was strange since I had simply shouldered new challenges and practiced “keep on keepin’ on” while aging. People with disABILITY (congenital or acquired) often find that as they age, accommodations that were once enough to give them access to an activity or opportunity, no longer are enough. Perhaps even accessibility tools, electronics, devices, etc., may have once allowed you to be independent in a task but as you age you find those things are not enough to be completely independent.
My life with a disABILITY started at the age of 6 with a traumatic brain injury, broken bones, and destroyed hearing in the left ear. After a long recovery, I never felt like a person with a disABILITY until about the age of 18 when my hearing loss became bilaterally progressive. I eventually acquired Meniere’s disease (a vestibular disorder) and really began identifying as a person with a disABILITY at the age of 26 or 27.
I have a good friend who describes herself as “bilaterally hearing-impaired”. Because we are both currently training our third service dog and work at the same place, we often train together. One thing I love about hanging out with Jessica is that she always asks if she can do something for me. Whether it is to get the door for me, pick up something I’ve dropped, carry something for me, etc., she always asks first. She doesn’t assume I want her help, she thinks to ask first in the event her assumption I need it is unwanted or not needed.
Sometimes I say, “actually Finn has been working on door buttons, let us see if he will get this door open for us”. Perhaps the item I dropped is something my Golden puppy can safely work on his retrieve and get for me, so I will let her know that Finn and I have “got it handled” and no “halp” is needed. After training together for some time, Jessica once replied to my “no thanks we’ve got this” with a very thoughtful reminder.
“No problem. However, we know each other well enough now that I trust you to let me know when you need help and that you will ask for that help”.
The first time she interjected this reminder, I found myself thinking about it the rest of the day. Can you guess why? It is simple really. People with disABILITY can be pretty stubborn, and never ask for “halp” when they really need it. We can even earn the reputation of being ornery about our refusal; ungracious in both word and attitude.
In my early adult years of learning to live with deafness and balance issues, I adopted a rather unattractive and even dangerous attitude of “I am woman. Hear me roar!” This could be interpreted as, “I don’t need help. Leave me be. I’ve got this. Don’t you dare pity me!”
The only reason I can think of that I acted with such vehement, even arrogant refusal is that I didn’t want people to pity me. I also did not want them to think that I was UNable rather than differently-abled. I think that all changed for me when I realized how it made ME FEEL when I asked to assist someone who needed my “halp” and they refused. After realizing I felt “robbed” and even hurt when denied the opportunity to help someone that I cared about who obviously needed my “halp”, I started re-thinking my own stubborn refusals.
I have lived with the assistance of 3 service dogs now. Even so, there are things my canine partner cannot do for me, or cannot do SAFELY on my behalf. I have learned to ask for “halp”.
I have never, EVER been turned down. Even should I ask the most cantankerous-looking curmudgeon in the aisle at the grocery store to get the 32-ounce can of turnip greens on the bottom shelf because a) I can’t bend down and get it, and b) the circumference is to large for my Golden’s mouth, I have never been told NO when asking for “halp”. (Hey we love our turnip greens in this house! I lived in the South a loooooong time).
Solutions to World Problems
Surely a solution to the world’s problems is to simply be kind to others. We all know that isn’t going to be the norm, however. Still, individually we can do our part and hope (even pray) for a ripple effect.
In every way that YOU can, make a difference.
If someone needs it, “HALP” them. Do it with a smile and without conditions. Do so easily, readily, and without any need for acknowledgement. Be the kind of person who so naturally sees a need and meets that need that it becomes who you are and not what you do.
But…
It is always good to ask. Never assume that someone who appears to need help, wants your help. Maybe they have some assistive device that will allow them to pick up that item without “halp”. They want to be independent.
BUT…
Don’t be a stubborn jackass. If you need “halp”, ASK. If someone asks if they can “halp” and you simply need a few minutes to do it yourself, explain that graciously. Don’t become haughty and retaliate with angry words and threats about where you are gonna hit them with your cane. Don’t tell them what to do with their request to “halp”. (Ahem)
Necessary Reminder
May I share something with you that you already know?
Even able-bodied people need “halp” sometimes. Whether it is assistance with a task, or a needed hug at a low moment, all of us need each other. The next time you need assistance for “halp”, just ASK already!
Even my two-year-old granddaughter will ask for my help when she knows she needs it. She even does so when she recognizes that she can do the task, but that it will get done quicker and with less effort if she simply asked for HALP.
Pogosyan (2018) provides multiple reasons why we should be willing to help and accept help from others. “Research has found many examples of how doing good, in ways big or small, not only feels good, but also does us good” (para. 2). So in closing, I would like to remind you (and yes myself as well) that disallowing someone to assist actually robs them of the benefit gained from that help.
Pogosyan goes on to explain that, “One reason behind the positive feelings associated with helping others is that being pro-social reinforces our sense of relatedness to others, thus helping us meet our most basic psychological needs” (Pogosyan, 2018, para. 1). In a very powerful way, it supports our need for EACH OTHER.
I’m starting to think this world is just a place for us to learn that we need each other more than we want to admit. – Richelle E. Goodrich
Our greatness has always come from people who expect nothing and take nothing for granted – folks who work hard for what they have, then reach back and help others after them. – Michelle Obama
I stopped looking at myself as “disabled” a long time ago. I am, however, quite comfortable with being a person with disabilities. A friend, fellow-client at Fidos For Freedom, Inc., and blogger, was the first person I ever heard use the words, “differently abled”.
I have to tell you that sometimes I’m really feeling my disabilities. It can make me discouraged and frustrated. So many of us who live with disabilities or chronic illnesses often gripe, “I’d like just ONE DAY of feeling normal”.
I’ve become very comfortable with being a “hearing again”, cochlear implant recipient and “late-deafened” (without my technology). I’ve even grown accustomed to having a vestibular disorder (Meniere’s disease). I use a cane, have a service dog, and bedazzle my cochlear implant with some amount of pride and transparency.
One thing I’m not OK with is concussions. I’ve had a lot. I was even told I had “post-concussive syndrome” after a moderate concussion in 2013. “You know… like football players have.” But…
I don’t play football.
My neurologist had me do ten weeks of vestibular rehab. This was actually a fantastic experience and I learned all kinds of tricks, most importantly how to fall safely – cuz I’m going to fall. Sure, I learned all the great things to minimize the possibility of falling, but I will take some tumbles. So I learned how to unlock my knees and SIT (albeit without any grace) to avoid falls. In spite of this, stuff just happens. And you know what? I get mad.
March 8
Take March 8th for example. There was some ice and lingering snow everywhere. I prepared to walk – which means I had my no-slip boots on, my tripod cane, and service dog (who is off vest but heels like the pro she is). I bundled up and made sure my charged cell phone is in a buttoned down pocket. I don’t use my cell phone while walking. No ear buds or attachments either – No listening to music. I pay attention when I walk. (Well, I also talk to my dog but that was the topic of another post).
So when I crossed a street and fell backwards on the ice I actually felt MAD on the way down. I had taken all these precautions! The back of my head actually BOUNCED on the road. Right before I blacked out I thought…
THIS SUCKS.
I wasn’t out very long (I rarely am). I suffered with a headache for 4 days and made an appointment with my neurologist. (Follow up in May)
I remember thinking after texting my husband and making my way the rest of the way home, that I do not like being this person. I don’t like being the fall guy (get it?). By the time I walked the 2 blocks towards home, Terry met me and I sat on the porch for a good cry. After eliminating some of that tension (and freaking my husband out), I sat there to think (and yes, hold ice on my head). I kept thinking, “This isn’t who I am. I am not the walking, talking concussion waiting to happen. I have GOT to get a handle on this.” I needed to redefine myself. I’m NOT a fall guy. I’m a very careful person who sometimes sits quickly. I sit when I’m lucky… and when I’m not that’s OK. I have plan for that, too. I’m thinking a hockey helmet when the roads and walks are bad. Imagine how I can bedazzle THAT.
Your Thoughts Matter
Two hours before my fall, the pastor of my church (Weem’s Creek) spoke about courageous faith. Do you know that people with disabilities and chronic illness are some of the most courageous people I know? Here are some of his main points. If you aren’t a person of faith, read on anyway. This can easily pertain to anyone. If you are a person of faith you may be like me and think, “Well why have I never seen this before?”
1. To live a courageous faith, we must cultivate a habit of thinking thoughts that are from God. Instead of focusing on not thinking wrong thoughts, we need to focus on thinking right thoughts.
2. We can’t always control the thoughts we have, but we can control the thoughts we hold. We need to learn to hold the thoughts that are true, noble and excellent… those from God.
3. Meditate on God’s Word, not on our misery.
I think ATTITUDE is the real disability. If you can change your attitude, you will never feel disabled. Change your attitude – and that new attitude will CHANGE YOU.
I think of it as redefining me – redefining what having a disability means. My focus is on what I can do. I pour energy into discovering how to do things that I want to do – perhaps differently (using canine, technology, or assistance). This keeps our disabilities from defining US.
Be careful to acknowledge that everyone has a personal “definition”. Just because you may have a hearing loss too, doesn’t mean we define who we are the same. Being in control of our own definition (even if we need a necessary “redefine”), also helps others see us how we see ourselves.
It may take some work. I have a colleague at work who constantly tries to “help”. I finally told her one day, “watch how I do things WITHOUT your assistance”. That shut her up, made her watch… and don’t you know she learned so much? She told me later she just assumed I needed help. Having a disability does not mean you are “not able”. Most of us find very unique ways to be VERY abled.
Are you at a point in your life where you need a little redefining? Perhaps you have believed some of the “hype” about what you cannot do because of your diagnosis. Redefine yourself and hopefully change both your attitude and how others see you.
I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.
I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”
I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.
I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.
If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.
Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)
At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.
1. Take notice of changes.
This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?
You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.
2. Accept change with a positive attitude.
You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.
God … grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
3. Learn to relax.
Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.
I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.
4. Ask for help.
It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.
“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”
Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.
If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.
5. You are changing, but you are still You.
Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.
One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these morons people, but you don’t have to hang out with them on purpose.
So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.
I had a “pep in my step”. I had a whistle on my lips. My heart was glad. I was walking my service dog and most of the snow was gone from the ground.
“What beautiful weather for a walk!” I thought to myself.
But then a squirrel scampered down off a tree trunk merely inches in front of my well-trained service dog’s nose. It all happened so fast.
The first jerk on the leash put my body in motion. You can’t fight the laws of science. I was going to be in motion until something stopped my motion since my brain went on instant vacay. Let me tell you I stuck the landing. Nearby Olympic judges all held up “10” placards. Cheers all around (or at least in my imagination).
I lay there on the pine-needle strewn ground for a minute trying to determine if anything was broken. The world was still spinning. I closed my eyes for a minute and choked back the nausea. Flipping to my back I felt a hound dog kiss on my face.
“Whew. Chloe is still here”, I thought.
I forced my brain to verify the leash was actually still in my hand. YUP! I opened my eyes and focused for a second. Chloe went into a down/stay on her own and rested her head on my shoulder. The weight of my ding-a-ling service dog’s head was a comfort.
I heard something! Another good sign. My cochlear implant was still attached to my head. I focused on the sound and looked up – Up – UP into the tree boughs above me and spotted that rascal squirrel.
Oh.
My.
Gosh.
He had the impudence to sit up there fussing – at US. I couldn’t help but laugh. He was ticked! I laughed all the way up until he skipped away… jerking the branch he was on and dumping snow on my face and chest from twenty feet up. My laughter stopped immediately. I was choking after all…
I sat up and brushed the snow off and started to giggle again. Chloe wagged her tail in delight. It seems she wasn’t going to get a “Denise sermon” after all. Within 10-15 seconds though I was overcome with a different emotion. I sat there crying. Not just silent tears – nooooooo. This was unladylike, deep sobs with intermittent hiccups!
I sat there bawling my eyes out for five or six minutes, comforted by a hound dog most certainly sorry her instincts caused another “Timber…” moment for me.
Yes. I could see the funny. But fast on the heels of the laughter and positive attitude came an emotion near the surface most days. Self-pity. Sorrow. I hate my life.
Is Happiness a Choice?
One of my favorite books is “Happiness is a Choice” by Minirth and Meier. The premise of the book is that especially for those of us living with depression, happiness is a choice. The book’s number one principle is: “Change the way you talk to yourself”.
I’m on board with that. Really!
I am!
“You can change some of the negative aspects of your thinking by challenging the irrational parts and replacing them with more reasonable thoughts” (Martin, 2010, para. 4). Whitbourne (2013) explained these, “inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1). I believe in the power of self-talk. I believe our “thinker” really can influence our behavior. My husband is a cognitive psychologist. He and I have a lot of discussions as I work on my own Ph.D. about the best ways to change behavior. He – and other professionals like him – believe that if you can simply change what your thinker is thinking, there will be a trickle down effect. It will influence and possibly change behaviors you wish to change. There is a lot of scholarly research and science to support this.
I believe this! I do! But I will be honest for a moment. There are times I want to just say…
SCREW SCIENCE
That’s right. Just in case you even needed MY – or ANYONE’s permission…
It is OK to be upset about the reality of your life.
Living with acquired disability sucks. Hearing loss sucks. Meniere’s disease sucks. How about you? Fill in the blank:
_____________________ SUCKS.
*Deep Cleansing Breath*
I’ve tried to explain to folks who ask, that living with a chronic condition or acquired disability is – on the best of days – HARD.
I still get the flu.
I have still lost people I love and miss them.
I have lost beloved pets.
I get headaches, body aches, and am growing older.
I get mad at my family sometimes.
I experience car problems.
I hate traffic.
I have unexpected bills.
I still have a period (hey! Jus’ layin’ it all out there! <BIG GRIN>)
All of these things happen to me just like they happen to you. Only folks with chronic illness or acquired disability have those things happen on top of what – for them, is the norm… living with challenges daily.
Yeah, yeah. I know!
I still get the flu I can be thankful I have medicine to help and a hound dog to cuddle with. See? I can see the positive!
I have still lost people I love and miss them I can be thankful I will see them again someday based on my personal faith beliefs and worldview.
I have lost beloved pets I have other furry family members and that makes me happy.
I get headaches, body aches, and am growing older Beats the alternative. Right?
I get mad at my family sometimes But I have a family…
I experience car problems. But I have a car and this time we could afford the “fix”.
I hate traffic. I have a job to go to.
I have unexpected bills.But I’m smart enough to figure out how to pay that bill or arrange payments.
I still have a periodYeah. I got nuthin… (LOL)
So can my forced “change thinking” have a trickle down effect and influence my behavior, feelings, and perceptions? Yes.
And no.
Confused? I don’t mean to be the cause of a “What the heck you talkin’ about, Denise?” thoughts.
However, it is important – at least I think it is – to allow yourself to have moments of self-pity. Feel the sorrow. Rail at God. Write “My Life Can Suck” really big and pin it to a wall and throw darts at it. If it makes you feel better, do it. I think it is healthy to “own your feelings” about the reality of your life. It’s hard. You may feel alone. You may want to give up. It’s OK to feel that way.
But then? (Brace yourself…)
Change your thinker. Allow it to do what studies have shown actually works. The “Trickle Down Effect”. I’m here to tell you though that it isn’t a long-term fix. You may have to “adjust the knobs on your thinker” daily. Maybe on REEEEEALLY bad days – hourly!
Do you know what thoughts help me the most?
Keep on keeping on.
I can make a difference in the life of another.
Tomorrow is a new day.
Mean People Suck. (Sorry. That’s my favorite bumper sticker and I *had* to throw it in there).
Yup. They are platitudes. “Feel good self-talk”. But ya know something? It works for me because I also allow myself the freedom to sit in the pine-needles with snow covering my shoulders and bawl my eyes out.
So strive to improve your self-talk. But feel free to wail.
ABOVE… My dad in 2011 when he visited Gettysburg with us.
Do you know every time I retrieve a nail file to smooth, clean, or file my nails I think of my dad? Isn’t it funny the kinds of things that will recall a memory for us? Not the kind of recall that triggers our sympathetic nervous system and launches a flashback in folks who suffer from PTSD. Instead, the kind of recall that knocks on the door of our heart with a “feel good” memory. The memory replays a specific conversation or event. For me, when I use a nail file I vividly recall how my dad would clean his nails with a pocketknife.
I couldn’t have been more than 7 or 8-years-old, for we had not yet returned to the family farm. My dad still worked for International Harvester at the time. One day I sat watching him clean his nails with a pocketknife.
“Why do you use your knife to clean your nails?”
Dad continued to clean his nails and thought about his reply. The man never just “spoke off the cuff”. He responded after a bit, “It does the job”.
“Well, will you clean MY nails?”
With less thought he replied, “I can’t. I can’t tell where your nail stops and your finger starts”. He scooted closer to allow me to see from a different angle how he was using his knife to clean up under the nail. I may have been young, but I immediately grasped why he couldn’t clean MY nails with this unconventional method.
Although I never could bring myself to clean my own nails with a pocketknife, I learned over the years that one can do things just as well by means of unconventional tools and methods. I would not have understood if someone had tried to tell me that I would eventually become deaf and develop Meniere’s disease – a balance disorder, and that by doing so I would have to adopt some new means to navigate my world safely.
Works For Me – But Maybe Not for you
I suppose one of my biggest pet peeves is when folks start dictating to someone who shares a diagnosis how they MUST go about treating that disease or disorder. Just because something works well for YOU, does not mean it will work well for someone else. This doesn’t mean we shouldn’t be willing to tell our story and share what works for us. Peer networks and support groups are invaluable in my opinion. However if I chose to use a nail file to clean my nails, and you choose a pocketknife, all that should be celebrated is that the end result yields positive benefits for us both. Clean nails are clean nails no matter how they got that way.
That doesn’t mean the process to clean nails is always easy. I have to sit to brush my teeth. That toothbrush swishing around in my head will make me pass out if I do not do so from a seated position. I never could sit on the lid of the commode to brush my TEETH. So I step into the bedroom and sit on the hope chest to brush my teeth. I have to be sure to keep my mouth closed so that there is no splatter. Ewww, right? This last week as I was sitting there brushing my teeth, it just hit me wrong. Here I was 47 years old and unable to brush my freakin’ teeth over a freakin’ sink like a normal – erm – FREAK! So…
I started crying.
My husband stepped into the bedroom. I can’t imagine what he saw. Here is the wife sitting and brushing her teeth, sobbing her eyeballs out, toothpaste now EVERYWHERE, including dribbling down her quivering chin. He calmly said, “You OK?”
Did I look OK? Alright, yuppers… I didn’t actually WANT his help. I just wanted to finish brushing my teeth. Those FREAKIN’ ones…
When a person with disability or chronic illness finds a way that works for THEM, it doesn’t mean it is easy. But this is why we are not disABLED. We are differently-abled. It is quite a cognitive and emotional boost to discover you can still enjoy something you did before – only in a new way. It may look strange, novel, or genius… but the reality is “it gets it done”. Yet what I find works for me, may not work for someone else with Meniere’s disease. I cannot safely clean their nails with my pocketknife.
Celebrate the Day
Gee, we live in a wonderful age of technology! When I think about the miracle in that I’m hearing again bionically, and all the cool tools available to me through simple apps on my iPhone, or special assistive technology, I get goosebumps! I live in a country where service dogs OTHER THAN guide dogs are fairly common. Email and texting – two communication devices I utilize frequently, are favored among the NORMAL hearing population. This makes my life so much easier!
Folks with mobility issues, learning challenges, hearing loss, chronic illness, and various disorders have options available here in the U.S. that we did not have 30 years ago – or even 10 years ago! Yet some of the things we learn to do are through our own ingenuity! I have quite literally patted myself on the back and mentally “high 5’d” myself when I discover a new way of doing things. To you being able to do the laundry without actually having to change the altitude of your head is not very impressive. But to me? This is a “WOO-HOO” discovery. But the proper lean formation, use of step-stool and service dog work for me. They may not work for you if you, too, have Meniere’s disease. But be willing to share ideas with each other without dictating proper protocol. The end goal is clean nails after all.
Tuesday was NOT a great day. When it is rainy out and the barometer matches my internal “tilt-a-whirl” meter, I expect to have a bad day. When it is sunny though, I get aggravated when I’m having balance problems. Tuesday was a beautiful, sunny morning! I’m beginning to think that fatigue may have something to do with it because I know I didn’t sleep well Monday night.
I headed downstairs with my morning coffee, a whole day ahead of me to work from my basement, home office, only to slosh the coffee right out of my cup on the first step. I paused. I took another two steps down. More sloshed out. I paused. Aggravated I was going to have come back with cleaner, I took one more step. Coffee sloshed out. I…
(paused? WRONG)
I screamed. “I didn’t give you permission to slosh!”
Hound dog, (a.k.a. Chloe the wonder dog) sat at the bottom of the stairs safely out of the way and quirked an eyebrow at me. ♥♥ Talking to your coffee again, Denise? ♥♥
I’d do anything to be in CONTROL
One thing that I hear people with disabilities complain about is that they really would love to control their lives better. They may even make feeble attempts (or aggravating ones) to do so.
People with hearing loss may monopolize conversations. If they are the only one talking, they don’t have to deal with the frustrating inability to hear well.
A friend of mine with Meniere’s disease admitted to me that she actually acts cold and disinterested around people because she found it keeps them at a distance. If they approach and try to talk or even hug her hello, she is overwhelmed with vertigo and nausea.
I think it is natural to want to control our environment – even our lives to a certain degree. It can help us feel safe, even secure! But let’s face it… there is much in our lives that we cannot control.
We can eat right, not smoke, and exercise and still develop high blood pressure if it is in your genes. (Yes, it can improve your health and maybe delay the onset, but according to experts you are still at risk).
We can do our best to live a healthy lifestyle and still get cancer. We can be a safe driver, never going over the speed limit and still get in a car accident. We can avoid high-crime areas and still be the victim of a crime. There is much in life that is NOT in the scope of our control.
Control or Management?
I feel very frustrated when I’ve carefully watched the weather and still get caught away from home when it starts to rain. I didn’t give the skies permission to SLOSH! I can wear tennis shoes and have my head up and eyes open on a walk, and still stumble and trip over a crack in a sidewalk. I feel – erm – sloshy.
However, people with disabilities or invisible illness don’t have to give up hope of controlling their symptoms. You may not be able to control your life, but you can manage it. Symptoms cannot be controlled but they can be managed. One of my favorite psychologists is Albert Bandura. He was one of the first to define and promote self-efficacy. Bandura said that self-efficacy is, “the belief in one’s capabilities to organize and execute the courses of action required to manage prospective situations” (Bandura, p. 72, 1994). It makes us feel better to MANAGE our lives.
With my hearing loss, I can always make sure I carry extra batteries, clean and dry my cochlear implant and hearing aid, watch my service dog for cues, ask people to email instead of call, and request moving to a quieter area to have a face-to-face talk with someone. With Meniere’s, I can avoid sodium, limit caffeine, be prepared for bad weather, and keep my service dog’s vest in tip-top shape so she can help me. I’m “managing” my life as a person with disabilities. This gives me confidence and helps me feel less – SLOSHY.
You’ve done all you can
In spite of what I’ve learned, sometimes life still sloshes. You’ve done everything in your power to navigate life and “hope for the best and plan for the worst”. Life ends up sloshing anyway. I’ve wanted to put my coffee in a sippy cup before. Or one of those cups that can be used in a moving vehicle. You know… those “slosh-less” ones? But I want my coffee in a beautiful, ceramic mug. The kind I can wrap my hands around and feel the warmth while inhaling the pleasant and comforting aroma of slow-brewed coffee! The risk of “sloshing” is worth it.
I hope that even when you’ve done all you can to manage your life, you can pick yourself up and wipe off the sloshed coffee when life …
Part Two of a two part post from Melissa Sisco. You may access the first part here. Melissa poignantly describes what it is like living with this invisible illness. She has taught me a great deal in her transparency in discussing these important issues. Welcome back, Melissa!
It’s Not That Easy
If I receive one more comment from someone indicating that I should “just go on disability” already I think I will scream. I know some of the people say it with genuinely good intentions, and some say it as a way to snipe at someone or anyone. Yes, I feel bad more often than I feel good. Yes, working 8 hour days, 40 hour weeks, drains me of every last vestige of energy I have. Life is hard. That concept is not news to anyone and I am far from alone in making that statement. Part of me is not ready to throw in the towel yet. I am only 33 years old for goodness’ sake! I don’t want be a welfare/disabled parasite to this community, to my family, to the economy, or to myself.
Not to mention the fact that the people who say I should quit just happen to be relatively healthy and have absolutely no idea how difficult it is to obtain disability benefits, even if a person has an obviously debilitating disease (which I don’t – mine is invisible). It can take from as little as six months to five years or longer. That estimate is the result of the research I have completed upon looking at my options. Not pretty, and add the fact that the entire time I will receive no pay. If I even have the option of continuing benefits I will have to pay out of pocket. I carry the insurance for my family. Supposedly if I have a “life changing event” I can transfer the insurance under my husband’s name. Our premiums will go up because he is in a higher salary bracket; the children will be covered because they are already dependents – Thank God for that. But, there is no guarantee that I will not be subject to a 12 month waiting period; which would exclude anything I would/could be treated for during that time. There is also no guarantee that all of the illnesses I am diagnosed with and treated for right now won’t be excluded because they are “preexisting conditions.” That’s just bone chilling to think about.
We aren’t flat broke, but we aren’t exactly comfortable either. Luckily we’ve really worked hard to pay down our credit card debts, so at the very least we should qualify for loans if necessary. But I don’t think I could live with the knowledge that I was the one who caused my family’s financial ruin. It wouldn’t take much to put us there now. I don’t want to lose everything that we have worked so hard for. I don’t want to steal my children’s futures before they’ve barely even started. We struggle some months just to pay medical bills when we have insurance, I can’t imagine what the costs would be without. People like me can’t live without current medical technology. I have accepted that fact, and chosen to be grateful that God put me on this Earth when he did. Perhaps I was careless in having children; perhaps I never should have married. But my life right now is so wonderful, despite the illness and my worries. I cannot imagine not having the awesome privilege of knowing my beautiful daughters, or loving my husband for the last 14 years (married for 10!). I would not give up those blessings for anything. But my heart aches to think that I could be the one to drag my family down. We do try to not “live above our means” but at the same time, you can’t take the money with you, however little it may be. That’s why we choose to take family trips, “vacation,” camp –whatever- when we do have the chance. At least enjoy what we have now while it is here.
But I am scared. I don’t think my husband really truly understands what my body is going through. Truth be told I wouldn’t wish this on anyone, so I’m kind of glad he can’t understand. But at the same time I want him to see that I am not a quitter, I am not giving in, I am not broken, and I am still me. My body just doesn’t quite work the way it used to. Too often I get home from work and it’s everything I can do to help with dinner, clean up some around the house and yard, and not fall into bed before seven o’clock. It angers me to no end when I can’t do anything but lie there, hoping to feel better. The guilt gnaws at me near constantly. My husband has to not only also work his tail off at work, but come home and cook dinner, clean the house, do the laundry, mow the grass, help the girls with their homework and put them to bed. Pretty much everything. And I just lie there waiting for my head to explode or the floor to fall out from under me. Sometimes both. It just seems so unfair. I know we both vowed to work together through sickness and health, better and worse; it just never occurred to us that sickness and worse could possibly come so soon in a marriage of two young people.
I fully understand that by choosing to continue working full time might very well speed up the pace of my illness. I may pay some awful consequences for myself and my family down the road because of my own pride and fear. I can’t see the future, but I am not going to apologize for living, even if it isn’t easy.
Melissa Sisco
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If you would like to write for Hearing Elmo, please contact me at denise.portis@gmail.com The only “requirement” is that you or someone you know has an invisible illness, disability or chronic condition. We learn so well from each other – those of us who live this challenging yet rewarding life!
On 7/23/12, Hearing Elmo welcomed Melissa Sisco, from Alabama as a first-time guest author. You can access that post HERE. Hearing Elmo warmly welcomes Melissa again with a TWO PART post about her own invisible illnesses. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”.
The hardest things we encounter in life can sometimes be the ones you expect and assume will be easy. I am learning to realign and reign in my own expectations/assumptions. When you have struggled with a progressive illness for over six years, say one like Meniere’s Disease that causes hearing loss and loss of balance, you assume your family will support you the entire way. You assume that they will take the time to read the literature, the pamphlets from the doctors or at least even use Google or WebMD. You expect that they will get the hint as you slow down while walking, because your world has begun to buckle and spin. You assume that they will take it in stride when an episode of vertigo strikes and can only be remedied by lying down –for hours sometimes. You assume they will understand that an impromptu dunk in the water will harm your health in multiple ways because you have holes in your ear drums and have to wear ear plugs when you risk getting wet. You expect those closest to you to understand your new world, but the reality is that they don’t. Not at first. You actually have to teach them, or paint the picture if you will. They are not any more adept at struggling with accommodating my illness than I am. It really isn’t fair to expect them to know what was also foreign to me a decade ago. Experience can be the harshest yet greatest teacher.
Recently, a family member commented, “God, you really are deaf!” Apparently he had been speaking to my deaf ear for several minutes without my noticing, “testing” my “deafness.” I simply turned to him, so we were face to face (even ground for me), and said, “Yes, so if you want my attention, try my right ear or tap my arm or shoulder please.” All while smiling a really tight painful smile. Now what I really wanted to say was closer to a negative word, followed by an expletive, and ending with Sherlock. But I digress.
I admit I am still in the resentful stage, I resent that I should have to be the one to teach others about my own illness and its effects on my life. I never aspired to be a teacher; I haven’t the patience of those saintly souls. For reasons beyond me God has placed me squarely in a position where sometimes I have to teach, to save my own sanity. It’s just awfully annoying to teach family and friends who I expected to learn a little on their own in the last few years. My disease is nothing new anymore. I’ve learned a lot of my “new normal” on my own, (although I’ve been blessed to have great advice from those who’ve already invented this wheel –ahem Denise, Gayle, Shanna) but I do get downright angry when I have to teach someone something that should be obvious – at least in my opinion. I haven’t been wearing an absurdly expensive hearing aid in my left ear for 4 years just for kicks and grins. As more of my conversational frequency in my good ear wanes I have found that small talk is just no longer my cup of tea. I still avoid public situations in general. I have learned a distinct dislike of restaurants, malls, arenas and movie theaters. I am working on that, but I am a country girl at heart anyway. My country is just a bit quieter than it used to be, which is rather nice sometimes.
I have also found that there is finally a language I am really struggling to learn. It’s called American Sign Language. The only one I really need to know, and it makes Hebrew look like a piece of cake. (I would say Greek, but I can actually read that!) I’m quite certain that I appear as if I am under the influence of some sort of psychoactive drug when I’m trying to sign. The nuances of hand gestures completely elude me in a way that centuries-old grammatical rules never did. I can’t even profess to be able to understand it well, either. I get so focused on trying to comprehend one particular gesture/word I miss the next seven and am therefore totally lost. Like missing the pinnacle episode of your favorite TV show and trying to tune in to the next one and catch up – it just ain’t happennin’. I haven’t given up, but gosh is it hard. Bill is a great guy, but you can only make him repeat a phrase so many times before you start having weird animatronic/you-tube nightmares. (Thank the Lord, and Bill, for Lifeprint.)
I have recently also begun to despise the words disability and handicap with the exception of their necessary legal presence. I really just don’t see myself that way. I still do a number of things on my own; to include working, driving, doing basic household chores, etc. Although I despise it, I can grocery shop on my own, most of the time. I just can’t reach for anything on the top shelf, or on the bottom shelf, without relying on my cane or a sturdy wall or post. Sometimes it’s just easier asking for someone’s help. NOTE: Do not rely on shopping carts (that’s buggies for us southerners) for balancing because they have wheels. Really bad idea. Trust me.
I am able to be much more up front with people about my invisible “handicap.” I can flat out tell a stranger that I am deaf/hard of hearing, I need to see their face to understand them or I will ask them to type/write out something complex. Most of the time this helps, and it is only occasionally that I encounter special people who begin to mimic Dr. Seuss using a bullhorn. Unfortunately, rhyming and loudness are lost on me. And it really annoys my co-workers or whoever else happens to be with me at the time. Sometimes I wish my hearing aid had a neon flashing light that proclaims “Deaf lady coming, repeat, deaf lady coming,” simply so I can save my breath. Sometimes I am saved by the Grace of God in the form of my own eldest daughter. She missed out on my shyness gene and takes the world by storm. She is quite eloquent when I see her shout at the top of her little six year old lungs, “My Mommy is deaf! Don’t you get it?” All while sighing, knitting those eyebrows, putting her hand on her hip, and glaring at the perceived offender. (Yes we are working on the politeness and manners thing- but it is easier said than done.)
A lady, let’s call her an acquaintance, I run into sometimes at work, asked me, “What is your cane for? I notice that some days you have it and some days you don’t.” Another unexpected and unwanted teaching explanation. I replied to her that I have a balance disorder, some days I need it, and some days I don’t. Though you may not always see the cane it is usually nearby, just in case my power steering fails again without warning. She smiled at me with that look of “Bless your heart,” which forces me to fight the urge to strike her with said cane. I despise pity. I don’t want pity. I just want –a little bit— of understanding.
And I have to understand that not everyone else can see my illness, even if a person has known me for thirty plus years. One of my mandatory responsibilities now is to help others understand me as I learn myself. I have to constantly remind myself that, though my illness is invisible, dealing with it is truly a two way street. No one ever said it would be easy.
PART TWO: “It’s Not That Easy” will run Friday, July 19, 2013.
Hearing Elmo 
I have read your blog for many years. There have been many times when I wanted to give because of…