When You Want to Smack ‘Em With Your Cane

handicapped-restroom

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

… BUTT.

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

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

fullsizeoutput_bd

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

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

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

… yeah, you guessed it,

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

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

I’m pretty sure my mouth dropped open.

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

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

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

Before you assume, remember:

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

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

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

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

         E) Chronic fatigue and related illnesses

F) Age related conditions

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

BUTT… But —

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

well… shame on you.

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

Denise Portis

©2017 Personal Hearing Loss Journal

This is My Fight Song

On “match day”, 2015.

The first time I heard Rachel Platten’s “Fight Song“, it was actually sung by a different  young woman who had faced a life threatening illness and “won”. You can find Calysta Bevier’s audition for “America’s Got Talent” HERE.

Yesterday, Fidos For Freedom, Inc. held its annual certification day. Service dog and hearing dog teams re-certify their skills and clients take a written exam. Milo and I passed with flying colors. While there, I was able to catch up with other teams. I overheard various teams refer to their service dog as their “partner in crime”, “wing man”, “partner”, “side kick”, “best friend”, and “best buddy”.

I’m a believer in the power of the human spirit. I have also seen many people who are differently-abled, dig deep and find the wherewithal to “just keep swimming” (as our friend Dory from Disney’s “Finding Nemo” taught us). At certification day, there is understandably some waiting in line. In an “all volunteer” organization, it takes a village of caring and committed volunteers to make certification day happen. However, clients do have to spend some time waiting for the next station to open up so that they can be tested on those skills. While waiting, I people watch. I’m easily caught up in emotion and found myself getting choked up looking around at various teams performing like super heroes. Can these individuals FIGHT without a service dog at their sides? Yes. I have no doubt. However, having a service dog makes each and every day a little easier.

It’s more than the skilled tasks they do, y’all! Milo retrieves dozen of items I drop each day. He is my alarm clock. He opens and closes the dishwasher, refrigerator, and gets clothes out of the dryer for me. He braces when I stand from a sitting position. He walks along side me and is only a touch away. Yet, the biggest benefit Milo brings to my life is psychological and emotional strength. Can I fight alone? Yes.

But I don’t have to do so.

Milo is with me 24/7. If I’m having a bad balance day, I go to work anyway knowing he’s got my back. If I’m dreading a large meeting, knowing in advance I will have trouble hearing, he provides the courage I need to do what needs to be done. I consider myself an advocate and “assumption destroyer”. However, Milo makes me a super hero. I think service dog partners forget those “under the radar” strengths our service dogs provide for us. On annual certification days, I am often reminded. Observing these teams and the trainers who coach/love them, brings these hidden benefits into startling clarity for me. We can count on other caring human beings to help and support us as needed. However, it is only a service dog partner that can be there ALWAYS.

I want to leave you with the lyrics and original video of “Fight Song”. I also am not ashamed to acknowledge that I found my own fight song with the support of a service dog. For me… it made the difference.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

© 2017 Personal Hearing Loss Journal

A Prisoner of STIGMA

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

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

Presentation:

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

 

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

 

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

 

SLIDE 2

 

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

 

SLIDE 3

 

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

 

SLIDE 4

 

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

 

SLIDE 5

 

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

 

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

 

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

 

SLIDE 6

 

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

 

SLIDE 7

 

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


L. Denise Portis

© 2017 Personal Hearing Loss Journal

Why YOU Should be a Disability Advocate

In a recent class discussion, I asked my students what advocacy, community service, or non-profit organizations they were involved in and what prompted them to do so. Young Americans get a lot of flack, but you’d be surprised how many are fully committed to various causes. Social justice issues are “the new sexy” and students often pressure their peers into doing something that matters.

When I ask them these questions, most of the time there really is an important reason they volunteer for “this or that” cause. They love animals so volunteer at the SPCA. Their mom died of cancer so they volunteer and walk for a Susan G. Komen breast cancer event. They work twice a month at a soup kitchen because they have been hungry before. We normally have a connection to what we advocate for and this reason drives our passion and commitment. “Volunteer Power” explains that #1 reason people get involved in something is because that “something” meets their needs (Volunteer Power, 2017).

I am a long-time advocate for the disability community. It’s hard to say if I would be doing what I am if I weren’t a person with disability myself. Because my issues are not singular, I like to think that if it hadn’t been, A) acquired deafness, that got me involved, it would have eventually happened anyway because of B) Meniere’s disease and C) Post-concussive syndrome. 

I don’t think people realize how powerful advocacy – big or small – is for groups that are the same AND different than you are. “No Stigmas” explains how powerful the advocacy of those who do so on behalf of others… for groups that have nothing in common with who they are as an individual. Why? Experts believe that passionate advocacy can be mistaken for self-serving bias (No Stigmas, 2017). The more I learn about people with disability, the more I am convinced it is all of our responsibility to advocate for this population. May I try to convince you of the same?

How Many of Us Have Disabilities?

In the United States, 24.4% of the population over the age of 18 has a disability (CDCP, 2016b). Y’all? That’s nearly 1 in 4 people! The Disability and Health Status Systems and supporting research suggest that 17% of those living with disability have a congenital condition (CDCP, 2016b), while the remaining 83% have an acquired disability. An acquired disability is defined as a limitation in normal function of vision, hearing, movement, thinking and remembering, learning, communication, mental health, or social relationships (CDCP, 2016a). Many acquired disabilities are easily identified as visible assistive devices, tools, or mitigating technology are used by the individual to mitigate limitations. Numerous acquired disabilities are considered invisible or non-obvious and are only apparent to others should the individual choose to disclose their diagnosis. Whether acquired disability is visible or invisible, an individual may find themselves coping with both new stresses and new opportunities for growth.

Advocating on behalf of people with disabilities–even if you are not a part of this population–means you are very likely doing so on behalf of someone you know. Advocacy doesn’t mean you have to volunteer 15-20 hours a week for a cause. Advocacy can include that, but most of the time it means being someone’s friend. It may mean that when you are on hiring panels, you remind others of the value of hiring someone with a disability. Joni and Friends (2017) explain that hiring people with disabilities has the following advantages:

• Including qualified employees with disability in your workforce communicates a strong message of inclusion to your local community.
• Employees with disability often make good team players – that means increased productivity in work groups.
• To include someone with a disability diversifies your workforce, creating a stronger appeal to a diverse consumer base.
• Employees with disabilities often enjoy a long tenure with a company and are less likely to resign or quickly move on to another job.
• A job can mean a great deal to an individual with a disability and translate into equal or higher job performance rates.
• Employees with disability are usually happy to work on creative solutions regarding reasonable accommodation or restructuring of job hours.
• Including someone with a disability in your work force raises the bar on everyone’s awareness and sensitivity toward someone facing hardships (para. 3).

Advocacy can mean support during national awareness walks or campaigns for a disability group. It can mean choosing not to use derogatory language when referencing a disability group, nor allowing others to do so (See A-Z Derogatory Terms).
“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth” (William Faulkner).

You Will Likely Eventually Be a Member of This Group

Finally, you will very likely be a person with disability one day. Making a difference NOW, simply establishes a foundation for self-advocacy and “right thinking” later. Let’s do a little exercise (something I learned from my ADA Leadership Network training):

Below… pick a person who is not “RED” yet. The red indicates someone with a disability. Pay attention to who you pick and don’t cheat and switch it up later! Pick one person:

In the USA, 10.4% of Americans have a disability if they are the ages 15-24 years. Now let’s bump up an age group. Find your SAME person:

—————————-

In the age group of 25-44 years, that percentage moves to 11.4%. Does your chosen person have a disability yet? Let’s get older:

—————————

45 – 54 years, the percentage of Americans with a disability moves to 19.4%

—————————-

55-64 years, we are now at 30.1%

—————————

65-69 years, we are now at 37.4%

—————————-

70-74 years – 43.8%

————————–

Should you live 75-79 years, the rate grows to 55.9% of Americans. Did the person you pick, end up “red” by the end?

Y’all? If you do not struggle with normal function in some aspect now, chances are as you age – you will. Develop relationships and advocacy “know how” NOW, even before you need it.

So? Have I convinced how important it is for ALL of us to advocate for disability rights, inclusion, and normalcy? If I haven’t – that’s ok. However, I hope at the very least you come away with a little more information about an often times marginalized group. As always, thanks for reading!

Sincerely,

L. Denise Portis

©2017 Personal Hearing Loss Journal

Centers for Disease Control and Prevention (2015a). Disability and health. Retrieved March 30, 2016, from http://www.cdc.gov/ncbddd/disabilityandhealth/types.html

Centers for Disease Control and Prevention (2016b). Disability and health data systems (DHDS). Retrieved March 30, 2016, from http://www.cdc.gov/ncbddd/disabilityandhealth/dhds.html

Joni and Friends. (2017). Disability and employment. Retrieved March 21, 2017, from http://www.joniandfriends.org/blog/disability-employment/

No stigmas. (2017). How to be an advocate for others. Retrieved March 20, 2017, from https://nostigmas.org/peer-advocacy/

Volunteer Power (2017). Why people volunteer. Retrieved March 19, 2017, from http://www.volunteerpower.com

Sometimes It Takes Work to Stay Positive

uphill-battle

When my alarm goes off, Milo (who is laying in a ginormous dog bed on the floor by me) hops up and nudges my face and arms. There are days where my eyes pop open and I lay there for a few minutes giving myself a pep talk. Milo isn’t into pom-pom’s and cheering… he just wants breakfast. This means I can’t lay there contemplating all that is “Denise” very long.

Do you ever have trouble getting out of bed? I’m not talking about because you are sleepy. I do not mean the kind of lazy-bone feeling you have when it is rainy and cold out and you just want to stay cuddled up in the blankets. I’m talking about the weariness that comes from having to psych yourself up

one

more

day.

It can be difficult. Don’t get me wrong. I recognize that I have so much to live for and that I am blessed. PsychCentral recently wrote about what NOT to say to someone with depression. The piece included a great number of platitudes that people say to someone who struggles with depression. Some that I hear a lot are:

  1. There are a lot of people worse off than you.
  2. You have so many things to be thankful for! Why are you depressed?
  3. Happiness is a choice (this one kills me because it is actually the title of one of my favorite books!)

Several years ago I saw a quote on social media that said, “Telling someone they cannot be sad, depressed, or anxious because others have it worse is like saying someone cannot be happy because others have it better.”

Yes. I do know people who are “worse off” than I am. But by what measure?

Like many with chronic illness, or visible/invisible disabilities, I have good days and bad days. I would suspect that most people who talk to me each day in person – at work, class, check out lines, or walking – believe I am a very cheerful person. Fact is? I work at it. It does not come easily to me.

At 50 years old, however, one thing I have learned is how powerful a smile and encouraging word are to others. I try not to think about my limitations. That’s so… limiting! Instead, I work to make a difference each and every day, even if all I have the energy or ability to do is be genuinely friendly and encouraging.

I love Fridays. On February the 17th, I posted this picture and caption on FaceBook:

Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which... was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride. 🐾
Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which… was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride.

What I did NOT post, is that later that day when I arrived home weary but safe from a long week doing what I love, I had a seizure. Right there on my front porch. It lasted all of ten seconds and I knew 20 minutes beforehand it was coming. Milo was safe in the back yard and I a l m o s t made it to the door. (No worries – I know that a frontal head bump, fatigue, and Meniere’s flare are the recipe for a “fall down go boom”. I have regular contact with my doctors and “we’ve got this” – promise!)

When I got home from work today, one week later, I find I am still thinking about that and a little peeved about the permanent issues of having multiple concussions. Each Friday, I feel as if I have pushed a “happy Denise” uphill all week long. It is hard. It isn’t so hard that I cannot do all that I CAN DO. Sure, I may be naive to think that my smile and small acts of kindness make a difference. But I choose to believe. I believe because someone else smiled at me and encouraged me. When they did I had the wherewithal to press on – one more day.

smile-and-encouragement

Denise Portis

©2017 Personal Hearing Loss Journal

 

Half a Stick of Juicy Fruit Gum

juicy-fruit

I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around  8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

  1. I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
  2. I love animals – many times more than people.
  3. I expect justice and fairness.
  4. I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
  5. I can be stubborn.
  6. I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Coming to Terms

Deborah Marcus' blog "Visions of Song"
Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis. 

Winter
Winter

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

Spring
Spring

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Summer
Summer

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections
Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

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