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:

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 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:

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


When I’d Rather Beat Them With My Cane…

My kids L to R
Kid-in-law Khris

The people closest to me, like the 3 munchkins above “get” me. They accept me for who I am, disabilities and all, and take my limitations in stride – really as if there are no limitations at all! I love them! These three young adults are great human beings. They treat others with respect, and I rarely, if ever, want to beat them with my cane.

I don’t know about the rest of y’all out there living with disability and/or chronic illness, but the hardest thing for me to do is to forgive someone who says or does something to ‘dis me as a person with disability. Did you know that there are apology languages? Drs. Jennifer Thomas and Gary Chapman wrote a book called, “The 5 Languages of Apology” (Expressing regret, Accepting responsibility, Making restitution, Genuine repentance [change], and Requesting forgiveness) and it is being used more and more in relationship psychology. I encourage you to check it out.

However, my point today is forgiving someone for being a butthead, and no apology is forthcoming, nor will it likely ever be spoken. Forgiving someone who doesn’t say “I’m sorry“. Ugh! That is incredibly hard for me to do.

Monday I was in my favorite grocery store, Giant. I love this particular store because the aisles are super wide and I can navigate safely in there most of the time. My husband has been sick with a cough/cold. He even missed some work so I knew the man was REALLY sick. (Especially after he even went to the doctor!) Before walking into the store, I texted him and asked him if I could get him anything since he was starting to feel like eating again.

Spaghetti-o’s with franks, please“. (Gross… am I right?)

So I found the aisle with all the canned and boxed goods for children (ahem), found the spaghetti-o’s on a shelf about ankle-high, picked up a couple of cans and promptly dropped them on the floor as I stood.

That by itself is not unusual. I have suck-poor grasping abilities. I was just getting ready to ask Milo (my service dog) to “fetch cans”, when a hand reached out and plucked them from the floor.

It startled me but I had the good sense to say, “Oh. Um. Thanks!” In my normal day, I get that people just want to help.

“You’re welcome. I could tell you would never get those“, she replied.

I paused. Actually, I COULD get those. It would take me a second or two longer while I used cane, and deep breathes while bending to get them, but I could have done it. Milo, also, loves getting cans. So I had this covered. That wasn’t what bothered me either. I always assume people mean well.

What bothered me was what she said next.

You know they have a service here for people to shop for you and just deliver the food for people like you?” she gritted out with a fake smile. Even hearing bionically, with all the nonverbal cues going on, I could tell she said it with some SNARK.

I paused again and made sure my attitude had it’s hat on straight before saying, “Yes, I have some friends who use that and really love it!” So I’m still not thinking at this point that I deserve an apology – yet. I’m cool. As a cucumber.

But then she said, “You should use it too. That way you aren’t taking up so much space in the aisles and making the rest of us wait.

I paused again. I wanted to make sure my cochlear implant really heard what I thought I heard. So I asked, “Did you say I should use the service because my being here makes shopping difficult for YOU? I think I’m offended” (said with a cheeky smile to let her know I was giving her the benefit of the doubt).

Yes,” she said as she turned with a flip to her hair and walking off with her cart. I felt like “flipping” her. I’ve always enjoyed using some universal sign…

The rest of my grocery store shopping experience was spent grumbling and mumbling under my breath. I mean, I deserved an apology! Right? I wanted to go hunt her down and beat her with my cane.

Yet, I knew I wasn’t going to get one. Not from this butthead stranger. I was mad at her for the rest of the day. By the end of the day I realized I had let this ruin my entire day. I needed to forgive her and go on, even if she didn’t deserve my forgiveness especially since there was not an apology.

I think it is really easy to get bent out of shape when someone hurts your feelings or acts offensive and it has something to do with your disability or illness. I mean, at the time… I felt my heart swell with righteous indignation. It changed to heartburn and indigestion fairly quickly, but still! If ever someone deserved a good ol’ cane beating, it was her!

One of the classes I teach at the community college is “Psychology of Relationships”. We have a whole chapter on forgiveness. A whole chapter! Here are some of the benefits of forgiving… even when an apology isn’t issued:

  1. Healthier relationships (even w/ others – those who did not betray you)  

    2. Greater spiritual and psychological well-being

    3. Less anxiety, stress and hostility

    4. Lower blood pressure

    5. Fewer symptoms of depression

    6. Lower risk of alcohol and substance abuse (Miller, 2014).

These are great benefits to YOU… the person who is doing the forgiving. And yes, even when there is no apology prefacing the forgiveness you extend.

Another personal example, about 13 years ago I lived in a different city in the mountain areas of Maryland. I was new to my cochlear implant and not yet partnered with a service dog. I was shopping in the SAM’S warehouse looking at some items in one of the aisles. Next thing I knew I was shoved and ended up on my back in the aisle, blinking up at a very surprised “shover”.

They immediately bent to help me up and apologized that their shove sent me to floor. “Why didn’t you move?” she asked. “I thought you were ignoring me!

I’m deaf“, I explained. I watched as all the color drained from her face and was replaced with horror and self-recrimination. (Not sure what color horror is but I saw it her face, clear as day). She immediately apologized over and over and even had big tears in her eyes.

THIS person was really easy to forgive. Yup, they screwed up. (I mean, who goes around shoving total strangers?) They said they were sorry and made it obvious they were mortified and repentant. I felt no compulsion to beat them with my cane. They even called themselves an “asshole” (which saved me the trouble). I thought about the experience the rest of the day trying to figure out how to insure that it didn’t happen again. However, I did NOT spend the rest of the day being mad at this person.

Two different scenarios and both having to do with my acquired disability. Something I never signed up for. One was hard to forgive, and the other was easy. Yet, both required me to forgive them because I have enough stuff going on in my life without hanging on to extra “weight” that I didn’t need to be dragging along.

I’ve always thought it would feel pretty satisfying to beat someone with my cane who deserved it. I just wasn’t sure jail time was worth it. The older I get, the more I understand that forgiving others isn’t for THEIR sake, it is for YOUR sake.

I hope you can learn to forgive others when they do something crappy or hurt your feelings about something to do with your own challenges. It isn’t easy, but forgiving them is better for YOU. Living a life as a differently-abled person is hard enough without adding another difficult layer to day-to-day life. Someone totally deserve a confrontation and a major telling-off? Put the cane down and walk away.

Well… take the cane with you as you may need it. But no beating!

Miller, R. S. (2014). Intimate relationships (7th ed.). New York: McGraw Hill Publishing

©2018 Personal Hearing Loss Journal

L. Denise Portis, Ph.D.

New Twist on an Old Fable

Townsend version of Aesop’s Fable: The Crow and the Pitcher

A crow perishing with thirst saw a pitcher, and hoping to find water, flew to it with delight. When he reached it, he discovered to his grief that it contained so little water that he could not possibly get at it. He tried everything he could think of to reach the water, but all his efforts were in vain. At last he collected as many stones as he could carry and dropped them one by one with his beak into the pitcher, until he brought the water within his reach and thus saved his life.

Moral: Necessity is the mother of invention.

I have the privilege of hanging out with numerous people with disability. Some are students, some are colleagues I work with at Anne Arundel Community College, and some are individuals I know from various community advocacy groups. One thing I have learned about people with disabilities,

“Where there’s a will… there’s a way”

This “will” is what this Aesop’s fable of the Crow and the Pitcher reminds me of as I have seen time and time again, people with disabilities finding a way to accomplish what they need to do with whatever means available to them and within their own power.

I was walking towards an “accessible” bathroom with a young woman who self-identified as a “little person”. I normally have a rolling briefcase trailing from my right hand and a service dog in heel with the leash in my left-hand. As we approached the bathroom, I readied myself to  disengage myself from my rolling briefcase and pull the bathroom door open. Before I could do so, the student yanked one of her textbooks out of her book bag, stepped up on it, and pulled the door open. She held it open for me and never missed a beat… continuing to talk about what we were discussing on the way to the women’s bathroom.

I, myself, do things that I have simply learned which allow me to be independent. However, this example stuck with me a long time. The young woman was accustomed to doing this and obviously had practice. The young woman’s “normal” reaction was an expectation to do something NEW and NECESSARY to accommodate her need.

Another example: One day on campus as I was preparing for class, a student whom I have met only in the hallway a few times after exchanging a cheerful greeting, poked her head in the door and waved at me. This student uses a wheelchair. I walked over and realized the issue before she even opened her mouth. Right outside this classroom is a CRAZY women’s bathroom that has an entrance that is impossible for any person with mobility issues to get in and out of without assistance.

Need me to get the door?” I asked.

Yup!” – “Thanks!” she whispered with a knowing grin.

Later that week I saw her in the hallway again. This time instead of only a cheerful greeting in passing, she stopped me and told me thank you again. Even though the other bathroom on the third floor where we were was more accessible, it was much further from her class and she lacked the time necessary to go down that far to avoid being late for class. I explained to her that I had to have help with this particular door too if I had my service dog with me. We both giggled at how ridiculous it was that we required assistance for that bathroom. (Do you know I still don’t know her name? Comrade in arms, but clueless as to who she is – smile). The day I got the door for HER, my service dog was waiting patiently behind me in the classroom so I was able to assist without any hoopla or drama.

Just in case you are not a long-time reader of Hearing Elmo, I have Meniere’s disease (a vestibular disorder) and “hear again” with a cochlear implant. I also have post-concussive syndrome. I have made numerous adjustments and changes within my home, car, and office to eliminate my need for assistance. Since I can’t raise my hands over my head without swooning, everything I need in the kitchen is on a shelf I can reach safely. My shower has everything I need eye level instead of up higher on the rock-faced shower wall. I have chair-rail molding all over the house so that I can grab it with my fingers if I am walking and get wobbly. All my appliances and drawers that “stick” have a tug on them so that Milo (my service dog) can open them for me. I could go on and on, but I don’t want you to miss that the reality of ANYONE with disability or chronic illnesses, is that they are accustomed to doing whatever it takes to be as independent as possible.

Please Keep in Mind

Will you do your best to remember one thing? If a person with disability, chronic illness, or invisible condition asks you for assistance, you are their LAST resort. They have thought of and planned for everything that they can to be as independent as possible. However, there are times that we just need help.

Don’t make a big deal about helping, just do it calmly and with grace.

Don’t discuss the details or “unfairness” of the person needing your assistance unless THEY want to discuss it.

Don’t feel sorry for us.

Don’t be super dramatic and bring attention to the issue.

Where There’s a Will, There’s a Way

Earlier I stated, “where there’s a will, there’s a way”. If you live with disability, chronic illness, or visible/invisible conditions, I understand when WILL disintegrates. I work as hard as the next person with disability to be independent and strong. Yet… there are times I just throw up my hands and yell, “SCREW this! I give up!

I cannot speak for others because we are all SO different. Even people who share the same diagnosis may:

  1. Have different symptoms
  2. Take different medications
  3. Have different responses/side effects to those medications
  4. Have more support than you do
  5. Have less support than you do
  6. Have a different personality style and traits
  7. Have a different developmental history than you do
  8. Have different faith practices than you
  9. Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
  10. Have cognitive issues as well that impact problem-solving

I can say that for ME, the best thing I can do after having a “Screw this” kind of day, is to go to bed. And yup… I mean I do so even if it is only 5 PM! I always feel better, have a clearer head, and a renewed WILL after getting some rest.

I am really tired of being TIRED after having to find and produce my own accommodations for various activities. However, a fresh perspective (after a good night’s rest) nearly always renews my inner warrior and allows me to face a new day willing to do whatever I need to in order to be a thriving, surviving disability advocate.

In the comments, I welcome other examples of how you have learned to make things accessible for you.

Warm hugs and virtual “high 5’s” to my fellow differently-abled people!

© Personal Hearing Loss Journal

Denise Portis, Ph.D.