Chronic Pain (Part FIVE) : What Does Giving Up Look Like?

By guest writer, Deborah Marcus.

Part 1     Part 2     Part 3    Part 4

Photography by Deborah Marcus – At Duke Gardens 1/2014

It has been weeks since my last blog post for this series. I wish I had the energy and focus to write about everything I think through! We continue to await word on the first level appeal of the denial of my disability application. I have been incredibly blessed by many with the practical support that is allowing me not to be in a panic over covering my most basic needs and treatment expenses, at least for the next few months. I don’t fully know how to express my appreciation for this, but I hope it is felt by all.

 

I’d like to return to an element that continues to run through this discourse, on living and dying, on choosing to continue to live rather than contemplating and completing suicide. I have written about and spoken aloud the serious consideration of suicide, the culmination of feeling like I’ve been dying for a long while, with acute awareness of this in the past few years of unrelenting facial and head pain. I do not currently have that on the table as an option, and I hope I continue feeling this way, but it does not feel like it would never be an option. I’ve come face to face with some varied and intense reactions and responses to my expressions of thought of suicide. All come from a place of love, but some also come from a place of fear, and this can inadvertently have the effect of making the one discussing the suicidal feelings—in this case, me, but I daresay it applies across the board—feel a deep sense of shame and guilt.

 

Brene Brown has some good talk out there about shame, guilt, and vulnerability. Here is one: https://www.ted.com/talks/brene_brown_listening_to_shame?fbclid=IwAR2YxOI-EYys4X2Pi7Qzi9k65yO79pUEw1-UQpt5KLKdxGL-91Ptje1Czbs#t-942509

Photography by Deborah Marcus – Lenten Rose at NC zoo 2/2014

There was a moment recently that ties directly to this and got me thinking about what we mean when we say that someone is giving up, when they feel can’t go on and begins to actively experience suicidal ideation and perhaps takes those first steps to make a plan to end their life. In continuing to trial different treatments and drugs in an attempt to better manage my facial nerve pain, I’ve recently begun a high dose, long course of Prednisone, along with another drug on board and a third as a potential abortive of one set of symptoms. I’ve been on a moderate dose of Prednisone more days than not for the past 2 years, but this is much higher dosing with a step down plan over 30 days. The 20 mg daily has already had an impact on my body over time, affecting sleep, mood, and weight. There is something of a redistribution of fat or fluids in my face and belly. I don’t look like myself to me, even though my overall weight gain has been about 10 pounds in the past year. So it was with concern about the effects of increased dosing that my therapist commented to me on the challenges of managing appetite on Prednisone. He expressed concern and dislike that I would possibly have to deal with regaining control of my weight, which is already a challenge, once I finish this course of medication.

It’s really something how you can’t know when a moment is going to be so perfect as to open your mind and heart and let some fresh air in.

In the last 2, 3 years I’ve given up on myself in all kinds of ways. As I found myself deeper in depression with the constant, severe pain and vestibular issues and the fear that none of it would ever be alleviated, I also decided that it didn’t matter what I did or didn’t do anymore. If I couldn’t be comforted any other way, I would use the one tool that has seemingly served me throughout my life. Food. I have long been of two minds about what foods I put in my body. On the one hand, I’m this person who likes to eat organic food as much as possible, thinks about the welfare of the animals I eat, contemplates how food choices impact the environment. On the other, I eat Devil Dogs. French fries. Bowls of pasta and butter. OK so pasta isn’t bad for you in moderation, but here I speak of the comfort foods. The ones that don’t require my mouth—and face—to work too hard, that appeal to my taste buds, that fill my belly and calm my heart when I am over the top stressed. You may be thinking: many do that sometimes! Here’s the thing: in the giving up, though I didn’t get the gun, stockpile the pills, or drive to the high bridge to jump, I gave up on me by over and over again making unhealthy and uncaring choices about what I put in my body, with no regard to its impact. I no longer cared. What difference did it make, since I’m not going to be here long anyway if I can’t get a handle on things?

Photography by Deborah Marcus – Uwharries 2/2016

How different is this from the kind of suicidal ideation that gets everyone frightened, that prompts judgment and even anger in those who don’t want their loved ones to kill themselves? To be sure, the more extreme choices have the disadvantage of being quicker to kill. I can probably eat my junk foods en masse on a daily basis for quite some time before it creates the kind of conditions that lead to a downward slide towards extreme poor health and death. I suspect that it’s because of this, we don’t spend enough time talking about the slow, quiet dying when we talk about suicide. I recognized at this medical crossroads that it’s all the same in me. The thoughts of suicide, while I am not actively seeking to kill myself at this time, are still there as long as I care for myself in a manner that says nothing matters anymore. If I am going to work as hard as I have been to try to find solutions, to feel better enough to want to live the next 20, 30 years, wouldn’t it be good to be in the best health possible so I can enjoy those years I’m working so hard to experience? Tell the truth, Deb. There is no point in working this hard if I am not also doing the best I can to love myself. That includes cultivating a renewed mindfulness about how I look after myself. Part of the struggle with mindfulness is that I actively seek distraction from the relentless pain. I’ve practiced mindfulness meditation on and off over the years and I wonder if the reason I kept stopping was not only the psychic discomfort that can come with deep attention, but how it would make me acutely aware of my body, and my body has not felt well for a long time. Who wants to sit with that? Nevertheless, as I come to this fresh perspective, with the stars somehow aligning just perfectly for this moment, I am doing the work. I feel good about taking these steps. They also scare me. I’m doing it anyway.


If you would like to contact Deb personally, please find her on Facebook (Deborah Marcus) or at her website: https://visionsofsong.com

L. Denise Portis, Ph.D.

 

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I’m Not Gonna Shelter in Place

I’m not gonna shelter in place. I’m just not. I’m a fighter. I can’t sit idly by and do nothing.

Now… before you FrEaK oUt on me, let me explain.

As I work on a college campus, I’ve taken plenty of workshops about active shooters, sheltering in place, and what to do in an emergency. I have friends who are cops, one in particular the chief of police in a nearby district. He was the first one to converse with me about a new mindset and belief that sheltering in place is not always the best thing to do. Evacuate, fight, run to a safe location as fast as you can AND DON’T KNOCK ANYONE DOWN AS YOU FLEE. It was an interesting concept to me and I got a lot out of the discussion. When active shooters and workplace violence became the “norm” for the United States, initial thoughts were to barricade and shelter in place. Now the experts believe that may not always be the wisest thing to do.

Frankly, I was relieved. One of the hardest things for me to do is sit back and watch and wait and HOPE FOR THE BEST. I’m learning and growing that sometimes I MUST do that, but it was very freeing to come to terms with other options if needed. I’m going to take this out of context a bit for the sake of this 2-part post. I wanted to give you this background though before continuing. I’d hate for you to be reading and thinking, “Um. Denise is off her rocker”.

(would never happen since I can’t rock – the things one gives up when you have a balance disorder *rolls eyes*)

Not Gonna Shelter in Place – When I Could Be Making a Difference Elsewhere

Lost my Dad 9/20/18
Training Service Dog #3, Finn
Retired Service Dog #2, Milo
Love having a grand-daughter

I’ve had the kind of year that I needed and took some “me time”. After finally completing my doctorate, I took some time to re-group. Even then, however, life — like LIFE does so well — continued and I had some great things happen and some not-so-great things happen. I found I had all this extra time and searched for ways to give back. (Temporary switch of gears) — One of the most frustrating things I have to deal with as a differently-abled person is accessibility.

Accessibility is more than having push-button doors, ramps, and handicapped parking. I work at a place (college campus) that is very accessible to me physically – with the exception of push-button doors on bathrooms – and we have a director of Facilities who does a great job of informing students, faculty, and staff about any campus changes that may impact mobility. We have internal professional development courses that work to educate and train other employees about persons with disability in the classroom and workplace. Accessibility also means, however, providing opportunities for people with disabilities to volunteer and work alongside other employees… professional development and opportunities to give back. My campus is outstanding in this type of accessibility.

My church is one of the most accessible buildings I have ever been in to date. Elevators, ramps, push-button doors (even on the bathrooms – grin), a looped auditorium (and if you have a hearing loss, I cannot begin to tell you what a huge deal this is), and numerous handicapped parking spaces are just a few of the ways the building and grounds are fully accessible. I even nominated them for a county recognized award one year, for truly they have gone the extra mile in making the church campus accessible on a physical level. They have always welcomed my service dogs. Chloe, who retired 2014 and passed away 2016, Milo, who retired 2018, and pup-in-training, Finn, have all been welcomed. I attend with them and have been able to use them to assist me in navigating safely with the blessing of those I worship with on Sunday.

I have hesitated to write about this on my blog as I in no way wish to criticize any individual or group, so have decided to go at this as a means to challenge religious and non-profit organizations to welcome and allow people with disabilities to SERVE. For you see? Accessibility is more than a functioning and accessible building. Accessibility is providing opportunities for service. Cuz y’all? We can and do serve. We can and do work. We can and do run for office, volunteer, and folks? We can and DO make a difference. Anyone who thinks or says differently is just wrong. Anyone who doesn’t provide opportunities to allow people with disabilities to serve and make a difference – should. After asking on 3 separate occasions for opportunities to teach at my church, I decided to move in a different direction and found a great place to serve. My challenge to places of worship (with members with disability), is: Don’t forget that people with disabilities are perfectly capable. They are able to and often desire to serve. Make it possible for them to do so.

After sheltering in place for 8 months, I finally “left the room”. There wasn’t a dangerous and armed enemy that I was hiding from and barricading myself into a safe place. I had just finished a very time-consuming and energy-draining endeavor (finishing my degree) and was regrouping and trying to make decisions on how best to use this time that was once spent writing and researching. I was safe and sheltered, yet requesting opportunities to leave that room and GET BUSY. I went searching and FOUND a great opportunity to make a difference in my non-work hours. (I didn’t have to look far as it was a non-profit that already knew me and knew they could use my talents and skills to promote their mission as Director of Client Services).

Just Leave the Room and Go Looking

I “meet” so many kinds of people with disability and chronic illness through “Hearing Elmo”. The condition and challenges may be different in every individual, but I have never met anyone who simply wasn’t capable of making a difference in some way, shape, fashion, or form. I have written about the prevalence of mood disorders and anxiety disorders that accompany acquired disability. It makes sense that a “new normal” does more than create physical and health-related challenges. Disability can affect us mentally and emotionally as well. I truly believe that isolation contributes to mental health disorders. For many of us, we may have to go out searching for ways to make a difference. Maybe it is blogging! Perhaps you can teach a class or coordinate a support group. You may ask for ways to get involved and be ignored and not given opportunities to suit your strengths and capabilities. Please don’t let this stop you. Keep looking and keep asking. I believe that finding even small opportunities to make a difference in the lives of others, contributes to improved mental health which can impact our overall health! (If interested in research that supports this, please email me!)

Part two of this series will be discussing sheltering in place BECAUSE WE SHOULD. I’ve been there and came out “alive” on the other side.

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

 

Chronic Pain – Part 4 (Links to Parts 1-3 below)

Early Winter trees 2018 by Deb Marcus

At my last posting, I reflected on stigma and shame regarding mental health challenges, as well as making the decision to pursue disability benefits, and how it creates unnecessary barriers to self and other-acceptance and to reaching out for the help that could potentially improve quality of life for myself and others. You can read that and the earlier postings on this thread here: Part 1     Part 2     Part 3

Having submitted to all exams required of me by Social Security for disability determination, I was awaiting word at the end of October. The first week of November I received the letter stating the denial of my initial application. Although the language they used was such that my advocate felt was the “best” possible denial, i.e. they recognize that my condition is severe but question whether it will last longer than 12 months, it was entirely heartbreaking. How could they not see that the trigeminal neuralgia, as well as major depression and PTSD are not things that will simply “poof!” go away any time soon? It was also incredibly scary but I know that the next steps are likely to drag on for months, if not years. How will I survive? Will I even want to if they can’t help me feel somewhat better? I spent several days in a struggle with myself. Then, a couple of important events occurred. A dear friend and sister in soul offered to help set up a Go Fund Me page for my basic needs, as well as for care that I might be needing in the near future for possible specialty care at the Mayo Clinic. My neurosurgeon felt that my case is so complex that he wanted me to travel for a consultation with a neurosurgeon who has had some good results with deep brain stimulation for pain. It has been nothing short of a miracle that friends and loved ones have contributed to this fund, and it continues to grow towards its goal. I have recently traveled to the Mayo clinic for the consult, which was edifying yet extremely disappointing. It has become clear that the constellation of pain symptoms I experience in the face and head are not the symptoms that they are currently focusing on as they pursue FDA approval for this technique for chronic, intractable pain. The specialist did state that it’s not off the table for me, but it’s not the first thing he would do, though the options that we may try are not terribly promising. Basically, he was compassionate but clear: I have lived with this a long time, and it is complex and not going to respond to a clear cut plan of action. As I made the long drive back to home, I may have screamed long and loud on several occasions, with the windows down of course, no need to get myself arrested on top of everything else, right?

Soon after I received my disability denial letter, I made the decision to resume counseling. I’d been avoiding it, not because I didn’t want to do the work, I was afraid of those hours and times when talking would be too challenging. I realized that it’s OK to sometimes not be able to do much work in a session, I needed (and continue to benefit from) the good match I have with the counselor I am working with at this time. Frankly, he is why I have taken suicide off the table for the moment. I simply will not do myself harm, to try to kill myself, right now. I’m “all in”. I realize that I’ve managed to hang in this long, that I owe it to myself to keep on, and simply not let that be an option for the time being. It’s not entirely off the table, it’s still available at some later date, but for now, I’m going to just take it an hour at a time—taking it a day at a time seems to large at the moment, and I realize that this is all right, too. I received an email from a longtime friend today—we’ve known each other for over 30 years, and she has a history of attempting suicide in her 30s and 40s, and is very much alive and keeping on at 61 years of age. She said she knows that others don’t get factored in when suicide is on the table, as much as others around the person who is suicidal want to think they are, but that she will be absolutely heartbroken if I kill myself. She said this in the context of a recent suicide of a dear friend of her husband’s. I’m usually not able to address this “otherness” around suicide, but she knows of what she speaks and so I will spend some time with it. But I have to say, I am scared and I am not feeling tremendously hopeful, only that I know that we haven’t run out of options yet. Meanwhile, every time I get to be there for a friend, or get to just spend time talking or walking with a friend, these are all the truest blessings.

Thank you for staying with me on this journey. Your interest, your reflections, thoughts, prayers, and good vibes are invaluable.

— Deborah Marcus, guest writer at Hearing Elmo

 

Chronic Pain – Part 3 (Links to Parts 1 & 2 below)

Part 1

Part 2

by Deborah Marcus (Blog: Visions of Song)

In the last blog post on this chronic pain thread, there was mention of the stigma that surrounds mental illness even today. Another layer of stigma, making the recovery from mental health issues, chronic pain, and multiple invisible disabilities surrounds the matter of applying for and receiving (if you’re lucky) disability benefits from Social Security.

 

As the days roll along, and I try to maintain some hope for improvement, better management of the severe and chronic facial pain that results from trigeminal neuralgia, I also take steps to pursue Social Security disability monies. For those who are unaware, SSDI monies, when awarded to an individual based on meeting medical and technical qualifications of disability, is from monies that have been paid into the fund by the individual from their past employment. https://www.ssa.gov/disability/. SSI monies are also based on disability but can be awarded to individuals who meet the (exceptionally low) income guidelines along with meeting the criteria for disability.

When I decided that I had to pursue SSDI, because I am unable to work, I felt a deep sense of shame. After all, I am not yet at retirement age in my mid-50s, yet I am unable to work and need help supporting myself. It seemed as those there were these voices surrounding me, echoing messages I’d internalized over the years about people who don’t work and get disability payments. Loser. Lazy. Certainly you can find a way to keep going, to keep working! Why are you giving up?

The fact is, I should have “given up” a good year before I did, and while I don’t really regret pushing on, I know I exhausted myself physical, mentally and even spiritually more than I needed to, all in the name of “I’m no quitter”. I had to get to the point where I felt crushed, suffocated, to say that I need to stop, that I don’t know how I’m going to survive if I don’t get approved for benefits, and even if I do, how I’ll make it work until the determination is made one way or another, but I have to stop. There was a measure of relief in completing caving in to this decision, feeling like I failed, but knowing in my heart that I couldn’t keep going like I was, getting by at work by the skin of my teeth, only because I was in positions of lesser responsibility the past two years than I had been most of my professional life, and because of that, had skills that let me “eek by” and get the basics done and fly under the professional radar. I would crawl home each day, in excruciating pain, close the door to my little apartment, get in my pajamas and thank God for the internet so that I could have some human interaction even as I had less than nothing left to give to people in my life, to myself, and would hope I recovered enough by morning, by Mondays, to continue all over again. After beating myself up for a while, it dawned on me that it wasn’t an act of weakness to reach for help, but rather an act of strength, to say that I need help, I can’t do it alone, that I’m not well and need to figure out how to get better and recharge—I’ve never really let myself say that, even as I’ve struggled so many times in life. I confess that I still think it’s a point of strength that I was determined (stubborn) about keeping on, making life work as a working person in spite of everything. I also think it’s a point of strength now, to say I need to pause, to breathe, and let others hear how I am and what I need. In the process, I’ve discovered some other things. I have learned that I have people who really love me and want to help me. Some help me by listening, some by talking things out, some by prayer and positive energy, some make sure I won’t be homeless, or without car insurance, or batteries for my cochlear implant speech processors, or food. I have already discovered a couple of people who have been in my life, good people, but who for whatever reason cannot meet me where I am right now. At first I was really hurt by this fact, but I’ve truly come to see that it’s all a process. It’s true that each person is in one’s life for a time, sometimes short, sometimes longer, and really, I have been on the other side of this equation over the years, so I see that it’s just Life.

As for the process for applying for disability, I have completed all the paperwork, medical records sent, independent medical exams requested for conditions they wanted more information on from outside evaluators. Now I await their determination. Meanwhile, I grab every good minute, every good hour, and remember to stay engaged, monitor my mental health status, take short wanders and photograph the beauty in nature. I’m working as hard at this process as I have ever worked in any professional capacity in my entire life. I figure I owe myself this much. When I start to forget, I have some loving people in my life who whip me into shape.

 

“We Are Not Given a Good Life or a Bad Life”

“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

I believe one of the most self-destructive things a person with disAbility can do is to compare themselves to other people. I have even heard people with disAbilities compare themselves to other people with disAbilities… seemingly weighing “who has it worse“. Y’all? I have done this myself. Believe you me – I get it.

I think people who live with chronic illness or disability do this for one of two reasons:

  1. They are trying to remind themselves they are better off than “so-and-so”
  2. They are trying to discount the perseverance and courage of another because there is “no way they can understand YOUR life” because you have things much worse.

Let me start with the first one.

If you have “stuff”… physical, emotional, and mental challenges, don’t ever compare yourself with someone else also struggling. This is especially dangerous if you end up invalidating your own difficulties. The life challenges you deal with are just as legitimate and real as those faced by other people.

Frankly? Every person you know is fighting a battle you may – or may not – know about. This is the reality of life. Those of us “dealing” with life’s challenges were not given a good life nor a bad life. In spite of what I’ve heard others bellyache, not even God is at fault for your “good or bad” life. As Ms. Fernando stated, “It’s up to US (emphasis added) to make it good or bad”.

So (temporary) pity parties are not allowed? Well of course they are allowed. They are also

expected

normal

even beneficial.

You just can’t stay there wallowing in self-pity. If you believe in the power of “psyching yourself up”, simply do so by focusing on your own life and don’t compare yourself to others. It’s OK to not be OK. It’s not OK to think you should be OK, because compared to others you’ve got it pretty good. The struggle is real and we all have struggles.

Before I leave this point, allow me to just say that I am “born again” about sharing and caring with other people who live with chronic illness and disAbility. We can learn from each other. My greatest “teachers”, those who by example or explanation, coached me to try a different approach, a new assistive device or tool, or to adopt a new mindset to help me succeed.

The second point can be much harder to avoid. As a person with disAbility (late-deafened) and chronic illness (Meniere’s disease), I sit in meetings with my peers feeling frustrated when someone makes a really lame excuse for not doing something well or refusing to take on a responsibility. I think, “Well for love of cracker jacks, who goes around saying they couldn’t complete a task or responsibility because they are just to busy?” (Yes. I really think this LOL).

Who am I to say that someone without VISIBLE disAbility or chronic cannot use “busy-ness” as an excuse? Maybe they are dealing with something you do not know about. Maybe…

Their child has an unhealthy addiction.

They are scrambling to make room for their ailing mother who can no longer live alone.

Their most significant, personal relationship just imploded.

Their doctor wants to see them to re-take a medical test.

At the community college campus where I work, inclusion is the word of the day (and week, month, and year). Yet inclusion – includes – people who seemingly do not fit into a defined diversity group. Diversity implies all the ways we are different. I don’t know anyone breathing who isn’t different in some way. Inclusion, means to universally INCLUDE.

This past week I retired my 2nd service dog from Fidos For Freedom, Inc., specifically from working with me in the classroom at AACC. We started a major demolition and construction project this summer. Unfortunately, after working nearly 3 months on desensitization, Milo is unable to cope with the loud noises and “mini earthquakes” to focus on his job and assist me. I taught two classes this summer (Developmental Psych and Intro to Psych) and they were the hardest classes I have taught to date. I have had the assistance of a service dog in the classroom for 14 years! (Milo will continue as my partner in all other areas and is not retired full-time as of yet). Having to carry all of these assistive devices to work just to be independent in picking up things I’ve dropped or walking without wobbling, has been an emotional, mental, and physical challenge for me.

A couple of weeks ago during one of the breaks I offer (as it is a 4-hour class!), I ran into a colleague who teaches in a different department. I know her well enough that when I said, “Hey! How are you doing?” she answered honestly.

“My life is hell. This is the hardest summer session I have ever taught.”

I will admit my first thought was a flurry of reverse-prejudiced “OH BRUTHER” rationalizations.

I mean… she is healthy and athletic, and in her prime. She has tenure. She is well respected. Her expertise is valued. How is it that SHE is having the toughest summer? She doesn’t have any disAbilities or chronic illnesses! There I went with a silent “eye roll” and judgement simply because the things I was dealing with in adjusting without a partner were so much more IMPORTANT than anything she could bellyache about!

I immediately (mentally) slapped myself up side the head (though likely would have benefited from the real deal), and instead asked, “Well gee! What has been going on?”

Come to find out anything that COULD be going wrong in her life, was indeed going wrong. Her teen daughter was hospitalized and put in long-term care for depression. It came from out of nowhere and no one in the family had seen any warning signs. Early in the summer, she nearly lost her to suicide. Add to that long-term plumbing issues, car troubles, financial woes, and an internet stalker (I kid you not) rounded out the “list”.

Nope. This fellow teacher does not have any disabilities that I am aware of, nor any chronic illnesses. Yet, she too, has been struggling all summer and doing her best to cope. She, like me, chases down and hog-ties that professional smile to paste on right before entering a classroom. She is distracted and suffering from insomnia. She has cried many tears. Embracing true inclusion has taught me to recognize that her struggles are just as real as mine are. I love what Jordan (2011) said in the Diversity Journal: “Inclusion involves bringing together and harnessing these diverse forces and resources, in a way that is beneficial. Inclusion puts the concept and practice of diversity into action by creating an environment of involvement, respect, and connection—where the richness of ideas, backgrounds, and perspectives are harnessed to create business value.”

My colleague’s “stuff” looks different than my own “stuff”. It’s still STUFF. Encouraging and supporting everyone, benefits, well… EVERYONE. No one has everything going for them; a life without problems, fears, or struggles. However, everyone has something going for them.

Everyone.

Denise Portis

©2018 Personal Hearing Loss Journal

 

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

The Selfless Practice of Self-Care

It’s strawberry season! My little city just had a strawberry festival, and although I was not able to attend (there was a torrential rain), my husband picked me up some strawberries as he knows my fondness for anything “berry”.

Lately I have been thinking about “self-care” a good bit. I recently made a choice to not do something on behalf of someone I care for and I knew (from their reaction and words) how much I disappointed them. With strawberries on hand (and no dried beans or walnuts as the illustration normally requires), I decided to re-do the illustration with some different elements. I had rice, almonds and now strawberries. Hey… you work with what you have, am I right?

I hate disappointing people. Especially people I really care about and enjoy being around. I have only recently earned a self-awarded “certificate of self-care advocacy”. My normal response to being asked to do something I cannot do, should not do, and will sacrifice my health/mental health to do was “sure! No problem!” and a default. It’s hard to practice self-care at times, because others misunderstand and may believe you are being selfish, self-pitying, or lack compassion for others. I have learned to “stick to my guns”, but it doesn’t mean I don’t recognize and feel another’s disappointment in me. The flip side? I am not disappointed in myself.

My Re-Make of an Old Illustration

So let’s say the grains of rice are all the little things we do each and every day. They are choices to spend 5-10 minutes doing “this or that”. They are relatively unimportant tasks that if left undone, the world does not implode.

The almonds are more important things. I’m going to call my “nuts” family <grin>, close friends, advocacy groups, work and professional life, and community service/faith practices.

The strawberry is me. This big, luscious (- hey… jus’ sayin’) berry includes my physical health, mental health, emotional well-being, and spiritual well-being.

In the jar on the left <points up>, I filled my day/life with all the inconsequential things first, then the “nuts” in my life, and finally me – a big, beautiful strawberry…

… that doesn’t fit.

The jar on the right has the berry going in first. The rice and nuts settle around it just fine. (Yes, I measured and each jar has equal amounts of rice and almonds). If you look carefully, not only did everything FIT, there is some left-over room at the top.

Mayhap poorly illustrated, the point is that if you do NOT put yourself first everything will NOT fit.

Ya gotta NOURISH to FLOURISH

Folks with disability have a hard time with self-care. Let’s stop and discuss possible reasons:

  1. They feel guilty already because they may require another’s assistance and time to do normal tasks.
  2. They rarely have 50/50 friendships. They fear they will be labeled as “takers” and not “givers”.
  3. They fear a lack of control over their lives. Instead, they sacrificially try to help others first, ultimately hurting themselves.
  4. They want to be useful and have a life of purpose.
  5. They believe to say they cannot do something admits defeat.
  6. They work WAY to hard trying to live up to the accomplishments or abilities of someone else who shares their diagnosis but not their life. (No two people are alike).

One of the hardest lessons I’ve learned is that I cannot live a life with purpose and make a difference if I do not take care of myself FIRST. It’s not selfish. It’s selfLESS. If I do not take care of myself, I am useless and unable to do anything at all for anyone else. I have made the mistake of saying “yes” to something with too high a price tag, only to suffer for days, weeks, or months physically, mentally, emotionally, and spiritually. When I practice good “self-care”, I am actually able to do MORE for others.

Now you may be thinking that’s all fine and dandy, but if I am saying “no” to things in order to protect my energy levels, health, and mental health, aren’t people going to really stop seeing a person with disability who CAN have a life of purpose and instead see someone DISABLED?

Not if you handle turning down requests the right way.

You can’t babysit your niece this weekend because you know you need some extra rest? Ask if you can babysit with a 7-10 day notice so that you can rest up in ADVANCE and help with babysitting.

You (and others) were asked to volunteer for a community service opportunity that would mean an entire day of being in a big crowd? (With Meniere’s disease, I can only take so much jostling). Ask if you can donate snacks for the breaks. Ask if there is anything you can do behind the scenes.

Work is having a “walk a mile in her shoes” event. (Everyone wears heels and walks a designated route and distance to support rape, sexual assault, and domestic violence programs and survivors). Y’all? I can’t walk 3 feet in heels with a balance disorder, let alone toddle, stumble and do face-plants all the way around a track with my colleagues. This doesn’t mean I can’t: Invite others to participate, give extra credit to students who participate, volunteer to hand out bottles of water (and bandaids-snort), and cheer along the side-lines. 

Let’s say you really like visiting with a person and care about them a great deal. However, what if they have baggage (in the form of spouses or intimate partners) that may accompany your “person” who is toxic to you and everyone you know? Offer to meet with the friend for a one-on-one lunch or visit. You set the safe boundaries and ultimately enjoy your time with them.

Work related requirements: I have learned that if a meeting or activity is required and yet will not be fully accessible to me (hearing, space to move safely, etc.) to request accommodations WITHOUT APOLOGY. However, then I work hard to be fully invested and participate with enthusiasm. 

In closing, I wanted to share a final thought. This one I am still working on and currently fail to do it right more than I do it wrong.

Don’t apologize for practicing self-care.

I worry too much about what people think I suppose. I tend to TMI (too much information) after declining an invitation to participate in something and make excuses when none are necessary. I’m trying to learn not to say:

I’m sorry I can’t help with that. I know I’m letting you down.

and instead say,

I know myself well enough I cannot do that safely. I am trying to practice self-care. May I do “this (fill-in-the-blank)” instead?

Develop a self-care plan. Chart out (it helps to see it, I promise!) what you can do in a day and what you can do in a week. Stubbornly defend your right to say “no” to something when your chart is already full. Y’all? Don’t scratch out that necessary NAP to do a task for someone else instead. If your nap is needed to re-charge, make it a priority.

Take care of yourself! (A great article on what self-care IS and IS NOT – CLICK HERE).

L. Denise Portis, Ph.D.

© 2018 Personal Hearing Loss Journal