Try To See Each Other Out There

A new school year is right around the corner. I love teaching psychology courses. I love teaching. I love students. I love Anne Arundel Community College. I have a great number of “loves”, am I right?

The biggest “love” (other than the guy in the picture with me – married 32 years now) is that I am in a place where numerous opportunities await. An over all “motto” on my campus is “Engagement Matters“. I know this sounds like I’m tooting my own horn, but I was doing “engagement matters” before “Engagement Matters”. This isn’t some special talent, skill, nor ego booster. I try to see… really SEE the students in my classes. Why?

I have been invisible in my pain and loneliness before.

Having just one person notice and tell me they cared made all the difference.

It is relatively easy to see people who are versions of “self”. I want to tell you a story that for me, was the catalyst for changing how I see my students. Many of our faculty offices at Anne Arundel Community College are shared. Several years ago, I was in the adjunct faculty office sitting in one of 5 desks. I usually get to know the other Psychology faculty, but this specific office is shared by other departments. To this day, I have no idea who this teacher was. I only know she taught history. A student was meeting with her. The student was sitting in an easily recognizable “defensive” position, just oozing aloofness and apathy about what she was hearing. It seemed she had done poorly on an exam and had met with this professor to see what kinds of extra credit were available. Unfortunately, this teacher was not really seeing her. Perhaps the student felt backed into a corner? Maybe an earlier excuse she had provided (that I had not heard) was shot down. All I know for sure was that she had given up trying to get the professor to cut her a break and instead protected herself with a belligerent, bored, and apathetic attitude. My class start time was approaching so I packed up my stuff and headed outside with Milo (my service dog) to give him one more potty break before class.

When I returned to the building, this student was sitting in an alcove crying her eyes out. I “saw” her, as did Milo-bear. He led me over to where she was sitting and I sat down next to her. Milo put his head on her knees. She looked up in surprise and then continued to “release heart pressure” as she gently stroked Milo’s head. I didn’t say a word. She had seen me in the faculty office. (It’s hard to miss a professor with a service dog). She didn’t say a word.

erm… Milo didn’t say a word (but was “speaking” volumes).

About 15 minutes later, she quietly said “thank you” and gathered her things and left. I grabbed my stuff and headed to the elevator, now fairly late to class.

Sorry, sorry, SORRY” I chanted as I rushed into class out of breath. “Sorry, I’m late!

My students looked up and smiled, putting their phones up that they had been using to take advantage of my tardiness. “Drew” (name changed) piped up and said, “Bob Burg, right?“. Another student explained, “Yup. We saw you with that student having a meltdown!

I stood there a little bewildered trying to catch up with what they were saying. Another student (able to decipher the confused look on my face), added, “Yeah! Remember the meme you shared in class last time?

In my Psych of Relationships class we had just covered communication and learning to take an interest in others – even total strangers, and WHY we should do so. I had just shared in the last class, a slide with this photo/meme:

I had steered our discussion towards seeing beyond the words. Seeing someone who is hurting can quite literally mean the difference between life and death. We discussed different opportunities we have had. Opportunities to take a few minutes to make a difference and to CARE. Sometimes a topic just “takes off” in class and numerous students shared how it felt for someone to take an authentic interest in them and to really SEE them.  Through a “Poll Everywhere” activity, we took a quick class vote of who was currently going through something difficult and felt invisible and alone in their pain. Nearly 87% of the class signed in to say “this is me“.

The class looked around in astonishment. One student said, “Everyone in here looks happy!

BINGO

We have to look beyond a quick glance. Really SEE the whole person.

This time of year reminds me to make it my heart’s prayer and my default response to be the kind of person who really SEES other people. It only takes a few minutes to show someone you see them. By…

… giving a gentle hug

… asking if they are OK

… just being with them for a few moments

… simply saying, “I care”.

Try to see each other out there.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

Advertisements

“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

 

Shot Down as a Volunteer

One of the big motivators to “finish” while working on my Ph.D., was simply knowing I would again have time in my schedule to do some volunteer work. I suppose it makes sense that many people believe that folks with disabilities or chronic illness are unable to participate in volunteering, community service, and areas of ministry. It has been my experience (27+ years) that people with disability seem to know their limits better than people who are able-bodied. This isn’t always true, obviously, since many of us who identify this way HAVE signed up to do more than we are physically, emotionally, or mentally, able to do. I have, however, met more people who know their limits within the disability population, than those who are able-bodied and habitually over-extend themselves.

Imagine my disappointment and surprise when numerous pleas to allow me to be involved in “extra curricular life” activities, were shot down again and again! I tried very hard to put myself in the “shoes” of the decision-makers and could see perhaps how they might think I have limitations that may interfere with my ability to be “on time and available”. I know it has been nearly five years since I was really able to immerse myself into various community roles as a result of the time and energy required to finish my degree. Maybe it has been an “out of sight/out of mind” reaction?

Regardless, I spent a couple of miserable weeks trying to figure out why I continued to be ignored by the decision-makers in places where volunteer teachers, trainers, and workers were needed. I decided to nix that miserable feeling and look for “other” and perhaps “new” areas to spend some of my non-work hours.

I’m so glad I did.

I am gearing up to initiate on an-campus chapter of Active Minds at the community college where I work. I am very excited about it and believe students will benefit from having a chapter and student group on campus. It will take a good number of months to generate the student body support needed, but I am willing to work hard to see it happen. I would have never LOOKED for something new like this if I had not found other doors closed to me.

Can Do Attitude

Ms. Amado at the University of Minnesota explains that people with disabilities can and should seek to volunteer in their communities as they receive the same benefits other able-bodied volunteers receive. Social inclusion (community membership and friendship), contribution (happiness and satisfaction), developing marketable skills and job opportunities, networking, and status/reputation, are all benefits volunteers receive (Amado, 2001, p. 28). So why do people with disability often struggle to find volunteer opportunities?

Sue Bott, director with Disability Rights of the UK, believes some of the barriers to volunteering are false assumptions. “Rather than thinking about what they can offer, organizations tend to imagine some of the perceived problems having disabled volunteers will cause them” (Hudson, 2013). Rak and Spencer (2016) encourage organizations seeking volunteers to improve the representation of people with disabilities. “Educate stakeholders about the benefits of volunteering and being part of civic, and other community based groups in improving the quality of life of persons with disabilities” (Rak & Spencer, 2016, p. 1705).

This all sounds great, right? Unfortunately, there are very real barriers to people with disabilities even if they find an opportunity to be involved. Transportation can be a significant issue, as can weather-related mobility barriers. One area of need and “very accessible” opportunities, includes mentorship. The disability community has taken very real and positive steps FORWARD, as the result of mentors making a difference. The American Association of People with Disabilities explains the importance of mentors with disabilities:

  • The influence of mentors. Although the family was the most commonly cited influence on employment for the participants, professionals such as college professors, service providers, and employed individuals with disabilities, including benefits planners and community leaders, were also commonly mentioned.
  • The power of mentors with disabilities. The participants in this study were driven to be self-sufficient through the influence, motivation and modeling of other successful people who have disabilities. The mentoring relationship took many forms, from one of general exposure to people with similar disabilities, to a support group, to a close individual friendship. Regardless of the form of mentoring, the effect on the participants was cited as a major factor in their successful transition to work.
  • Support of peers. Many of the participants attributed their drive and success to the mentors they had in their lives. In some cases, peer mentoring occurred in the form of a support group of individuals with similar disabilities.

I know mentors with disabilities that spend numerous hours online, making a difference in the lives of others by being a mentor, coach, or advocate. There are numerous ways to be involved. Even “blogging” is a significant area of service and support. Many mentors with disabilities started out by simply writing about their struggles, successes, and life as a person with disability.

Has a door of opportunity been closed to you? Look around. I guarantee that other open doors are there. We simply have to find them, and walk through! Good luck!

Amado, A. (2001). Impact: University of Minnesota. Retrieved July 30, 2018, from https://ici.umn.edu/products/impact/142/over3.html

Hudson, S. (2013). The Guardian: Is it too difficult for people with disabilities to find volunteering roles? Retrieved July 27, 2018, from https://www.theguardian.com/voluntary-sector-network/2013/aug/14/disabilities-difficult-volunteering-roles

Rak, E. C. & Spencer, L. (2016). Community participation of persons with disabilities: volunteering, donations and involvement in groups and organizations. Disability Rehabilitation, 38(17). doi: 10.3109/09638288.2015.1107643

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

Chronic Pain (Part Two – Link to Part One Below)

Photo by Deb Marcus
July 3, 2018
All Rights Reserved

Hearing Elmo welcomes back Deborah Marcus, frequent guest writer at Hearing Elmo with “Part 2” of Chronic Pain. If you missed the first part of this topic, please click the link provided below.

——————————————————————

It has been about 6 weeks since I posted the first piece on my experience with chronic pain. Chronic Pain – Part 1       A lot has happened in that short period of time, a direct result of this sharing. I’d like to spend a little time today looking at one critical component, that of my report of having gone into a really dark place, wondering if I am truly “done”, and needing to reach out for support to deal with thoughts of planning my suicide. Soon after the piece was posted at Hearing Elmo, I spoke by telephone with a long-time friend. I’ll call her KS. She, too, lives with chronic pain, and through much trial and error, figured out the plans of action that allow her to live as full a life as her physical limitations allow. She is one of the few who I have been comfortable talking about my pain over time, at least in part because I know that she will understand on a level deeper than many who don’t live with chronic pain are able to do. I was also there for her for a number of years as she was working through her own “how do I live my best life” process. So, it should not have shocked me the fury with which she expressed finding out that I had reached such a deeply dark place and did not reach out to her. “I’m not angry with you!” she screamed into the phone. I’m not exaggerating, she was really upset with me. I understood why, and I hate hurting anyone, least of all a dear friend, but I found myself feeling forced to defend my decision not to reach out to her at a critical time. In fact, I reached a point at which I had to tell her to step back, because I was feeling shaky and scared by her reaction to how bad things had gotten for me. I’ve no doubt that it was precisely this that made me choose not to reach out to her at a critical juncture. She was able to honor my need to bring down the intensity, and had some extremely useful things to say regarding my inability to look after myself, to honor the fact that I deserve just as much care and support as the many that I have provided the same for over the years in my human services work. In fact, she and I met through our shared work, and we served many of the same clients in the community. It was a time that I was much more at my peak performance, and it’s true, I went to the ends of the earth to advocate for and support these individuals. Suddenly she shouted at me again, but this time she said: you’re still behaving like you have to hide your illness from your mother! Stunned, it took me a moment to realize what she was saying: she remembered a long ago conversation, of how I spoke of the fear in which I once lived, of having to ever tell my mother, my abuser, that I was ill and unable to act as her proxy, the public “family face”. On the occasions that this happened, I would end up with my head knocked against the porcelain bathtub, or screamed at until I wore her spittle. The episode of being pushed backwards down a flight of stairs may have triggered the facial nerve pain that has been an increasingly problematic issue in my life, but I carry with me the struggle to act in accordance with the words which I speak, that I believe I have the same rights as anyone else to good self-care. No doubt this has contributed in part to my struggles with depression throughout my life, the depression which I called everything else but that until a couple of years ago.

Photo by Deb Marcus
April 21, 2018
All Rights Reserved

Our culture still has a long way to go to acknowledge mental health as just as integral to a strong, stable society as physical health. There is some movement, but there are deeply ingrained stigmatizing messages against those who struggle with depression, anxiety, and other behavioral health conditions. Almost daily, I see posts on social media that casually “joke” at the expense of those with mental illness. Jokes about how doctors decide who is crazy and needs institutionalization, memes reflecting how someone’s Facebook posts let others know that the person has stopped taking their medication. All we have to do is substitute mental health issues with physical and we can readily see how stigmatizing these messages are, and how easy we find it to make fun of those with mental illness. There are many resources dedicated to addressing stigma. The National Alliance on Mental Illness is a great one. This is a link to some suggestions on how those of us with mental illness can work towards dismantling stigma: NAMI-Stigma

What to do with this complex blend of body memory, the physiological damage alongside the profound shift in my psyche due to messages deeply internalized? It’s interesting, because I have had several rounds of counseling over the decades. I have not been oblivious to what was done and in many ways, how I have been affected by my experiences. I’ve done hard work, processing what happened, growing stronger and more confident with every therapeutic intervention. Truly, I have, and yet I still carry significant markers that create unnecessary roadblocks towards health and healing.

Photo by Deb Marcus
February 24, 2018
All Rights Reserved

After KS and I finished our talk, I promised myself not to shut down, but to really think about what she had said. Here is one of a number of elements critical to managing life with chronic, severe pain: having someone who will call you on your shit, but because they love you, not because they want to cut you down. If you can’t be that person for yourself, my experience tells me that it has to come from others. I couldn’t deny the truth of what she said, that without being conscious of it, I have been terrified of admitting—to myself, to others who count on me to be the strong one—that I am in trouble. There had to be this intersection of things getting this bad with a friend stepping forward to call me out, in order to recognize what was happening. In the lingo of 12 step recovery programs, I have a very low bottom. I hit it, and thank the heavens I bounced and didn’t not shatter and scatter to the wind. Having reached a point where something has to give, I committed to certain actions. I had to make a plan, which has been hard to do lately. I found resources that offered tips to guide my thinking and action. Here is one: http://www.mentalhealthamerica.net/taking-good-care-yourself. I have found a counselor to meet with for a few sessions, and if this is not the right one, I will continue to explore. I will pursue disability benefits. This is an arduous, challenging process with a most uncertain outcome. I’ve known in my heart that I have barely performed at work anymore, and my world has shrunk by such measures, the walls touching my sides, that I can barely breathe. If I can obtain that support, I may have the residual energy to figure out where to go from here, what other options may be available to try to better manage my conditions, to have a better quality of life. Deep inside, I still have a lot to give, but I know I can’t be of any use to anyone, least of all myself, in my current state.

If any of this resonates with you, or if you have found strategies that have worked, I welcome hearing from you.

Deb Marcus – Guest Writer at Hearing Elmo

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

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

fullsizeoutput_8d0

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

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

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

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

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

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

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

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

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

uphill-battle

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

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

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal