Category: family and friends

Does Not Play Well With Others

Published on by hearingelmo3 Comments

play

I hesitate to even post about this topic because I’m sure to get a little backlash about this viewpoint. Because of that, you will see interspersed throughout this written confession, links of scholarly evidence and citations to peer-reviewed articles that will lend a little more credence to what I’m about to say. I don’t want it to be just an opinionated article, after all!

Confession: I Don’t Play Well With Others

Now if my mother is reading this, she is likely “nodding her head in agreement” but that is because her clearest memory of me is the bossy older sister, not at all afraid to confront people (they call me Vina Jewell Jr. in my family), and stubbornly opinionated. However, when you grow up in a small farming community and go away to college, there isn’t much chance your mother will be able to get to know the adult you’ve become.

Don’t get me wrong. Mom and I talk weekly. But a FaceTime call is a great deal different than seeing someone day in and day out. However, the fact that I don’t play well with others as an adult has nothing to do with the negative characteristics I hope to have left far behind me in my childhood.

As a 49-year-old woman who readily identifies as being differently-abled, “playing” often means quiet, reflective time, or interactions where I’m present but only “just”–in that I do not have to interact with those around me. For example, my husband and I will watch a movie together once in awhile. I’m a reader. I write. I research (by choice and not because I’m a doctoral student). I love sitting on the deck and staring out into the woods. I love to cuddle with my dogs.

Now some who read that last paragraph may think that I don’t like people.

Wrong.

I love people, and enjoy interacting with others. I believe anyone I work with will tell you that I am an eager team player who throws herself into volunteer work with passion and gusto. You see… I WORK well with others. Outside of class, I proudly advise three different student clubs and participate in a number of faculty/staff committees. I love this work. I love the people I work with, too. However, I’m working – not playing. I’m one of the lucky ones in that as a person who is differently-abled, education is a great career. People with skills, training, and education in other types of careers are not as lucky. Many people with disability or chronic illness find that in their chosen career they face both exclusion and discrimination (National Disability Strategy Consultation Report, 2009). I am extremely grateful to be a part of the education community, for I rarely face these issues.

So what’s the deal with my not “playing well with others”? Well you see? The things I mentioned earlier that are ways I unwind, decompress, relax, and “flourish in my happy place”, very few people are willing to do alongside me. (And that’s ok…) I have a few friends that will “hang out with me” and “play” with no expectations. We do not have to do a whole lot of talking. We just “are” – and are comfortable in silences and quiet places. The problem is that none of these friends live near me.

Hearing Loss and Background Noise

It may be different for folks with other types of challenges. As a person with hearing loss, I can tell you that one of the biggest barriers to living a happy and productive life alongside of others, is background noise. Some folks think that background noise is the same thing as white noise.

It’s not.

White noise is a steady (and unremarkable) buzz of sound. If you are as old as I am, it would be like the “snow” sound on a television channel currently off the air. When I was a kid, my older brother and I would sometimes be allowed to stay up watching TV, and we’d eventually fall asleep. When I awoke, the television screen would have “snow” with a buzzy kind of static-like noise. Background noise, on the other hand, is any extraneous sound that is heard while trying to monitor a specific sound. For folks with hearing loss, that specific sound is SPEECH while trying to screen out other sounds (and perhaps voices) from the environment. If I could burn calories for every minute I communicate with others in the normal world, I would not be 25 pounds overweight.

Background noise is the enemy of people with hearing loss. This noise even diminishes our ability to concentrate and form both short-term and long-term memories (Rugg & Andrews, 2009). Kenneth Henry (Neubert, 2012), postdoctoral researcher at Purdue, uses the analogy of numerous televisions. For folks with normal hearing, it would be like turning on a dozen television sets on different channels and asking the individual to concentrate on one show. It’s hard. It’s not at all enjoyable. It’s not something someone would ever do by choice.

Yet people with hearing loss must consciously make the choice to reach out to others, invest their time, energy, and focus just to communicate! It’s hard to communicate in a world full of background noise. It’s worth it. It keeps us from being isolated. It keeps us connected to others. It may keep us productive and working. There is a price to pay, however. The price tag is limited options for “play time”. In order to completely eliminate the WORK in listening, one needs a quiet environment. Friends tend to text one another with suggestions such as:

“Hey! Want to meet at Ruby Tuesdays after church today and eat together?”

“Let’s go shopping!”

“There’s a meet-up at the local Starbucks for mom’s frustrated with their adult children. You should come!”

“A dozen or so of us are going to go walking at the park with our dogs. You should come along!”

“We are all going to go get a pedicure! We are meeting at 2 PM”. 

This is not my kind of “play time”. Now occasionally (OK… I’m exaggerating – RARELY) I will go out and do some of these things. However, there are very few people I can ask to participate in what I really consider “fun”. Even when I go out with friends from Fidos For Freedom with individuals who have various disabilities it is hard. When you do not hear well, you can be isolated even when amongst folks who really understand disability. Folks with hearing loss “play” differently.

“Hey girl! Come over and sit on my deck and watch the squirrels in the trees with me, will ya?”

“I know this great place in the woods near my home where two streams converge. It’s a great place to sit and read a book. I’ll bring the bug spray!”

“Let’s go sit by the Chesapeake and pet our dogs while we watch the ships go by…”

Having a hearing loss as an adult – even when it is “corrected” by hearing aids and/or cochlear implant, the individual is certain to have a co-morbid  auditory processing disorder. This creates all kinds of communication issues that make it extremely difficult to enjoy communicating. According to Whitelaw (2015) “These types of communication issues may include difficulty hearing in less than optimal listening situations, reliance on visual information to augment auditory information, a reduced appreciation of listening to music, and difficulty understanding speech when the speaker is unfamiliar” (para. 1).

I have special programs on my cochlear implant that reduce background noise and allow me to zero in on the person right in front of me. I rely on these programs. (There have actually been times in extremely noisy environments, that I swear I hear better than my normal hearing counterparts). Even with this wonderful technology, I still have to concentrate. It’s not fun. It’s not “play”. It requires recovery time later. Is it worth it? 

Well if it wasn’t, I would never leave home… and I leave home a great deal and for a variety of reasons. Just because I CAN doesn’t mean it is easy. I’ve been alive long enough to know that important things are not always easy.

How to “Play” with Someone with Hearing Loss

If you know someone with hearing loss, please allow me to provide some “playing pointers”. You will note that these activities often revolve around just being in the presence of each other. They are activities that do not require dialogue every second of your chosen “together time”.

  1. Board games: It’s OK, to laugh and “chit chat” over a great board game. But… turn off the TV. Don’t have background music going. If there are more than two people playing the board game, don’t have individual conversations. Every spoken word is meant for everyone present. This keeps the person with hearing loss from having to deliberately ignore the sound of a conversation not meant for them. Please don’t think that people with hearing loss can enjoy “game night” with a big crowd. The folks in my small group at church had a “game night” (with all in the family invited) one night and my first thought was, “just shoot me now“.

2. Books, reading, and discussion: Book clubs are great! That is… if the discussion group is meeting in a quiet setting while discussing the chapters that week. Sitting in the food court of the mall and discussing what you read that week = NOT A GOOD IDEA. If you like to read, ask to spend some reading time with a person with hearing loss. You read; you don’t talk. It is difficult to express how meaningful it is to simply be in the presence of another.

3. Walks, hiking, boating, and other “outdoorsy” stuff: These activities can be great for folks with hearing loss. However, many trails and parks and lakes have become very populated. This means that the person with hearing loss may have trouble hearing you if they cannot see your face. Imagine kayaking with a person with hearing loss. If the kayaks are facing each other they will do great. This also means you won’t get anywhere because two kayaks facing each other cannot move. So enjoy the time together but don’t try to tell them all about the problems you’ve been having at work. Enjoy the hike. Enjoy the quiet of the walk. Enjoy the sound of the paddles hitting the water – and the far distant sounds of other folks out on the water.

4. Movies: I’m a “hearing again” person. This means that I can go to a movie, watch it, understand it, and give it a Siskel and Ebert “thumbs up” or “thumbs down” vote — just like everyone else. This doesn’t mean I can converse about the movie as we exit with the crowd. This doesn’t mean I can walk all the way to the parking deck and discuss everything we loved about the movie. Give me a safe place to stop moving. Allow me to concentrate on the conversation.

5. Gardening, Fishing, or ART: I love gardening, though do precious little of it I’m afraid. I had a great little “deck veggie garden” this year but wondered why I didn’t feel the thrill of it like I experienced it years ago. I concluded it was because I wasn’t pulling weeds alongside my father. I realized I wasn’t thinning plants while with my grandmother just three plants over. Be willing to spend some quality quiet time gardening with a person who doesn’t hear well but enjoys getting down in the dirt.

Fishing can be a great activity.

Art, too, can be a great opportunity to spend some time with an artsy hard-of-hearing person.

Some great resources: LISTENING IS EXHAUSTING.

SOCIALIZING WITH HEARING LOSS.

Not Hearing Loss – but “OTHER”

What if your challenges are not hearing loss. People who live with disability, chronic illness, and visible or invisible health problems may still “play” differently.

As a person with a balance disorder, I cannot go to the fair at the county fairgrounds and “play”.

I cannot walk to the park and “swing” on the swing set while discussing heart-to-heart issues.

If you want to spend time with someone who has specific challenges, ask them what they like to do and meet them where they are – within the parameters of what is “fun” for them. They may have a really hard time meeting you for some “play time” when it will be WORK for them. Ask how to accommodate them. I promise you that they really do enjoy being with you.

L. Denise Portis

© 2015 Personal Hearing Loss Journal

Pressure Cookers and “The BIG REVEAL”

Published on by hearingelmo2 Comments

pressure cooker

I can hear my grandmother’s voice saying, “Turn up the heat and see what boils out!” None of us like pressure.

None of us enjoy being stressed.

None of us “sign up for” difficult times.

Yet life is full of difficult times. It’s just the way it is. I use to get so aggravated at my mother for responding to my self-pitying tears and hiccup-sobbing announcement that “It’s not FAIR” with, “Denise… life is NOT fair“.

Life isn’t. Bad things happen to good people. Wonderful people suffer. Terrific human beings have their hearts broken.

Sucks, don’t it?

How a Pressure Cooker Works

I don’t know of very many people who own a pressure cooker. I don’t use one. I had a grandmother who used one fairly frequently, however. Why use a pressure cooker?

Pressure cookers essentially do two things.

  1. Raises the boiling point from about 212° to 250°.
  2. Raises the pressure inside the pot and forces moisture into the food.

Using the pressure cooker as a great analogy for LIFE, it helps us deal with higher temperatures, and keeps us from DRYING OUT. That’s right. When you are forced to deal with stress and pressures, you actually work out your “dealing with it” muscles and make it easier to handle the next burden. This is especially true if you are dealing with it often enough that you’ve developed good habits. New good habits include:

  1. Taking it to God and recognizing that “He’s got this”.
  2. Learning to ask for help from trusted friends.
  3. Learning to pace yourself; taking the time to rest when needed.
  4. Looking for the GOOD in a very BAD DAY.
  5. Burning your “Blame Game” after recognizing it is no one’s FAULT.

  6. Showing off your “BIG REVEAL”

That’s right. After the burner is turned down and the pressure is OFF, we lift the lid and  take our bows. The big reveal.

My former pastor from North Carolina reminded me however, that the “reveal” is often long before we lift that lid.

“The true test of character is not just seen in your actions but your reactions. We often like to excuse our inappropriate behavior by saying, “I’m sorry I was just under a lot of pressure.” But it’s the pressure that often reveals what’s on the inside and what we’re really like!” (Pastor Jake Thornhill)

While we are blowing off steam, we are also revealing to all who watch, who we really are. I have a dear friend who recently lost her young adult daughter in a car accident. As a person of faith, she knows she will see her daughter again one day. Yet, she has been very “real” in blowing off some steam. She is hurting. She misses her daughter. Her faith is strong. She’s dealing with it. However, I repeat: She is hurting. She misses her daughter. It is a poignant reminder to me that the very best people need our love, support, and prayers. Bad things DO happen to good people.

People who live with chronic illness, invisible conditions, or disabilities have good days and bad days. There will be days that you handle “your normal” in a positive, healthy way. There will also be days that you need to go back to bed and zip your lips because everything spewing out is pretty ugly. Not everyone is going to understand that. (Even some folks close to you won’t understand). Want to know some “ol’ sayings” that get on my very last nerve?

“What doesn’t kill you will make you stronger”

“Shine – don’t whine!”

“Be better, not bitter”

“When life hands you lemons, make lemonade!”

If we take these oft-used encouragements too far in our attitude towards OTHERS who are going through tough times, we miss out on one of life’s biggest blessings. One of the quickest ways to alleviate someone else’s stress and pressures are simply to let them know you are there for them. Pray for them. Hug them. Tell them, “I care about you“. If you deliberately look away when life increases the temperature under someone’s pot and assume “this is good for them”, you miss the opportunity to be used in a special way.  Throwing a chirpy little positivism at them will not help them. BEING there for them is what matters.

Love someone with significant challenges? You will learn what to SAY, and what NOT to say, to support your loved one best. Please allow me to mangle one more colloquial expression?

“A watched pot never boils”. Oh yes it does. You can stand there and watch the pressure gauge go up and Up and UP on a friend or loved one’s pressure cooker, and it’s going to boil. There is no escaping the heat. I don’t know about you, but I want to be the kind of friend who is there through the cooking process and present for the big “reveal”, for when the pressure is gone and the lid is lifted. That’s what friends do. That’s what support is.

Denise Portis

©2015 Personal hearing Loss Journal

 

 

When They SHOULD… but they DON’T

Published on by hearingelmo6 Comments

support

Do you know the #1 topic of emails to Hearing Elmo (or face-to-face for those of you who know me personally) is support or the lack thereof? I have not met a single person with acquired disability, chronic illness, or invisible condition that took on their “new normal” by choice. We need support.

People need other people. I don’t care if you are an introvert and “loner”, or a gregarious, extrovert. All of us need human connections to some degree. I hypothesize that those of us who live with acquired disability, chronic illness, or other invisible condition may need solid, supportive relationships even more than those who do not face daily challenges. Coping is TOUGH stuff, and geesh… don’t I hate we don’t burn calories for all the work we put into COPING? In psychology,  we have a special term for how important our relationships are to adjustment – psychosocial adaptation. Bishop (2005) explains this better than I could: Psychosocial adaptation “may be conceived as a process of responding to the functional, psychological, and social changes that occur with the onset and experience of living with a disability, chronic illness, or associated treatments” (p. 6). There is a ridiculous amount of research on how important relationships are to an individual’s psychosocial adaptation. Intimate relationships are imperative to the quality of life for individuals who are differently-abled. All very interesting STUFF, in my humble opinion, but not at all the goal of or intended topic of this post.

Intimate Relationships

When we hear the word “intimate” we may think of sexual expression. Maybe we think of fancy-smancy underwear. (So aren’t “we” the weird ones?). Intimate relationships are interpersonal relationships that are physically OR emotionally intimate. This means that we can have close friends or family members who have an intimate personal relationship with us in that they know us very well. We have let down our guards at some point and shared things with them that others have no clue about nor care. Yes, intimacy is often physical as well, and those of us who have a physically intimate partner in a spouse or significant other, count it a major blessing to also be a friend to this individual.

Our expectation of our intimate relationships is “through thick and thin” (and I don’t mean WEIGHT). We expect these folks to love us on our good days and our bad days. We know we can belly-ache to them and they won’t think less of us. For those of us who took traditional vows, we put a lot of faith in “till death do us part”. These folks know us – and love us anyway.

When acquired disability or chronic illness enters a life unexpectedly, we rest in the knowledge that our spouse or significant other, and intimate connections with friends and family members will strengthen us and help us adapt. We have this HOPE and expectation, yet so many share with me that they were let down by someone they had counted on to BE THERE for them. Some of you have even had to deal with broken relationships. Others may have partners and friendships that have stuck like super-glue, but you cannot help but feel as if you are a burden and that these folks feel “stuck” with you.

Perhaps someone shared with you that they get tired of how tired you are. Maybe they shared or insinuated that life with you sure is HARD. As if things weren’t hard enough, someone you depend on is tired of your diagnosis too? Thanks so much for that…

I know. Not a single person reading this post hasn’t at some point wished they could have just ONE day of normalcy. “If I could just have 24 hours of normal, it would re-set my gripe-o-meter box”, shared a long-time reader. Yup. I get that! So for someone in our intimate circle to complain that they are tired of all that WE are tired of? It’s enough to make you want to spit. Or hit someone. Or SPIT while HITTING someone…

So what do you do when you realize that those who support you are having trouble supporting you? I have three tidbits to share.

1. If the Shoe Were On the Other Foot

Please don’t lash out and tell your significant bozos (cuz at the point you are mad at them for their lack of support means they have morphed from close relationships to close BOZOS), that if things were “the other way around” you would TOTALLY be there for them – ALWAYS.

This, my friends, is impossible to prove. YOU are the one dealing with a significant, life-changing diagnosis. We don’t know how we would react to “the shoe being on the other foot”. Criticizing and attacking another by insisting we would support and behave differently is not fair, nor is it justified. There are numerous studies that support that stress and anxiety can be vicarious experiences by those who support people who are struggling.

I believe one of the very best things we can do for those who support us is to acknowledge up front that WE KNOW THIS IS HARD ON THEM TOO.

2. Engage in Active Listening

All relationships benefit from active listening. Active listening was made popular by psychologist, Carl Rogers, in the 50’s. Many different counseling approaches now incorporate active listening to engage in good communication. One of the best descriptions of active listening that I’ve read can be found HERE. It is five WONDERFUL pages of all that is Active Listening. So I’m not going to take the time to explain it here and instead am giving you a “homework assignment” <wink>.

3. Yes, They Should. But… They Don’t

I cannot boast of 100% supportive relationships, nor brag that I’ve handled my own acquired disabilities with grace and diplomacy. Even though I’m in a “good place” right now with numerous supportive relationships, I have been disappointed by some of my relationships, and have even lost some folks along the way.

It hurts.

The biggest mistake one can make in shouldering all that encompasses living with significant challenges, is trying to do it alone. You are not alone.

For one thing, you are reading THIS. I care.

The Internet insures that we are NOT alone. The Internet is accessible to even those with significant challenges. If your intimate relationships and friendships have let you down, please know that you need others. Find them.

Places you can find support:

1. The newspaper: Many list various support groups and networks available for numerous types of challenges and health issues.

2. Churches: Many have support groups and networks available to both members and non-members.

3. Libraries: Many have community services bulletin boards (both physical and on-site, as well as electronic) that list numerous support groups.

4. Online forums: One only has to “Google” their diagnosis to find numerous avenues of support online. One great searchable database can be found HERE.

5. National non-profit and for-profit organizations: Most diagnosis also have organizations that provide education, advocacy, and support at the local, state, and national levels. Search the Internet for organizations that provide resources for your specific population. Many have support networks as well.

6. FaceBook and other Social Media Outlets: You’d be surprised what support resources are available on FaceBook. Many are closed groups as well as have confidentiality tenants of membership.

7. Start your own: I’m not a big fan of “wiki” anything (I suppose it is the teacher in me), but I have to admit, WikiHow did this up right. Check it out HERE.

Cut ‘Em Some Slack

Finally, I’d be a poor advocate if I didn’t give you heads up that people are going to disappoint you. Forgive them.

You are going to have a really bad day and need all kinds of support, practically draining those around you DRY. Dehydrated people can lash out. Forgive them.

You will struggle with having to live your life yet another day – so very tired of it all. Someone will point this out. Mock you. Complain about you. Forgive them.

Someone will try really hard to support you and come up short. Their personality or own needs simply do not allow them to be exactly what you need them to be. Forgive them – and support THEM.

You are going to have the kind of day where you are just done with EVERYONE. You burn your bridges, isolate yourself, and find yourself very, very alone. Forgive yourself. And rebuild.

Denise Portis

©2015 Personal Hearing Loss Journal

Bishop, M. (2005). Quality of Life and Psychosocial Adaptation to Chronic Illness and Acquired Disability: A Conceptual and Theoretical Synthesis. Journal Of Rehabilitation, 71(2), 5-13.

Rogers, C. R., & Farson, R. E. (1957). Active listening. Lexington, Massachusetts: D.C. Heath and Company.

Significant Challenges Can Actually Help – our KIDS!

Published on by hearingelmo2 Comments

The video above was made in 2007. I was implanted with a cochlear implant in 2005 and matched with a service dog in 2007.

My kids have never known me with perfect hearing as my hearing loss began when they were born.

I’ll let the video tell the story.

Your thoughts? Have your own challenges influenced those closest to you?

Denise Portis

© 2013 Personal Hearing Loss Journal

Part Two – It’s Not That Easy!

Published on by hearingelmo7 Comments

Melissa Sisco

Part Two of a two part post from Melissa Sisco. You may access the first part here. Melissa poignantly describes what it is like living with this invisible illness. She has taught me a great deal in her transparency in discussing these important issues. Welcome back, Melissa!

It’s Not That Easy

If I receive one more comment from someone indicating that I should “just go on disability” already I think I will scream. I know some of the people say it with genuinely good intentions, and some say it as a way to snipe at someone or anyone. Yes, I feel bad more often than I feel good.  Yes, working 8 hour days, 40 hour weeks, drains me of every last vestige of energy I have.  Life is hard.  That concept is not news to anyone and I am far from alone in making that statement. Part of me is not ready to throw in the towel yet. I am only 33 years old for goodness’ sake! I don’t want be a welfare/disabled parasite to this community, to my family, to the economy, or to myself.

Not to mention the fact that the people who say I should quit just happen to be relatively healthy and have absolutely no idea how difficult it is to obtain disability benefits, even if a person has an obviously debilitating disease (which I don’t – mine is invisible). It can take from as little as six months to five years or longer. That estimate is the result of the research I have completed upon looking at my options. Not pretty, and add the fact that the entire time I will receive no pay. If I even have the option of continuing benefits I will have to pay out of pocket. I carry the insurance for my family. Supposedly if I have a “life changing event” I can transfer the insurance under my husband’s name. Our premiums will go up because he is in a higher salary bracket; the children will be covered because they are already dependents – Thank God for that. But, there is no guarantee that I will not be subject to a 12 month waiting period; which would exclude anything I would/could be treated for during that time. There is also no guarantee that all of the illnesses I am diagnosed with and treated for right now won’t be excluded because they are “preexisting conditions.” That’s just bone chilling to think about.

We aren’t flat broke, but we aren’t exactly comfortable either. Luckily we’ve really worked hard to pay down our credit card debts, so at the very least we should qualify for loans if necessary. But I don’t think I could live with the knowledge that I was the one who caused my family’s financial ruin. It wouldn’t take much to put us there now. I don’t want to lose everything that we have worked so hard for. I don’t want to steal my children’s futures before they’ve barely even started. We struggle some months just to pay medical bills when we have insurance, I can’t imagine what the costs would be without. People like me can’t live without current medical technology. I have accepted that fact, and chosen to be grateful that God put me on this Earth when he did. Perhaps I was careless in having children; perhaps I never should have married. But my life right now is so wonderful, despite the illness and my worries. I cannot imagine not having the awesome privilege of knowing my beautiful daughters, or loving my husband for the last 14 years (married for 10!). I would not give up those blessings for anything. But my heart aches to think that I could be the one to drag my family down.  We do try to not “live above our means” but at the same time, you can’t take the money with you, however little it may be. That’s why we choose to take family trips, “vacation,” camp –whatever- when we do have the chance. At least enjoy what we have now while it is here.

But I am scared. I don’t think my husband really truly understands what my body is going through. Truth be told I wouldn’t wish this on anyone, so I’m kind of glad he can’t understand. But at the same time I want him to see that I am not a quitter, I am not giving in, I am not broken, and I am still me. My body just doesn’t quite work the way it used to. Too often I get home from work and it’s everything I can do to help with dinner, clean up some around the house and yard, and not fall into bed before seven o’clock. It angers me to no end when I can’t do anything but lie there, hoping to feel better. The guilt gnaws at me near constantly. My husband has to not only also work his tail off at work, but come home and cook dinner, clean the house, do the laundry, mow the grass, help the girls with their homework and put them to bed. Pretty much everything. And I just lie there waiting for my head to explode or the floor to fall out from under me. Sometimes both. It just seems so unfair. I know we both vowed to work together through sickness and health, better and worse; it just never occurred to us that sickness and worse could possibly come so soon in a marriage of two young people.

I fully understand that by choosing to continue working full time might very well speed up the pace of my illness. I may pay some awful consequences for myself and my family down the road because of my own pride and fear. I can’t see the future, but I am not going to apologize for living, even if it isn’t easy.

Melissa Sisco

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If you would like to write for Hearing Elmo, please contact me at denise.portis@gmail.com   The only “requirement” is that you or someone you know has an invisible illness, disability or chronic condition. We learn so well from each other – those of us who live this challenging yet rewarding life!

—-

Denise Portis

© 2013 Personal Hearing Loss Journal

They May Not Get It

Published on by hearingelmo7 Comments

(Hey… I’m not an artist! But have you ever felt this way?)

One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”

Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.

Why It Hurts

1. It hurts because the transition from “normal” to where you are was painful.

The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.

However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.

It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family

STILL

DOESN’T

GET

IT.

2. You expect your family members to care enough to accept you.

It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.

But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.

What to Do

Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:

“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”

They May Never Get it

We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.

Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.

I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.

Denise Portis

© 2012 Personal Hearing Loss Journal

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

“I See Him as a Friend”

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Hearing Elmo welcomes guest writers! (I figure you get tired of only hearing my point of view!) Today I welcome a distant cousin, Ted. Ted and I “met” on Facebook, connecting with family and friends in a way only Facebook seems able to do. It is great fun to talk to him because we grew up in the same small town, “middle of nowhere”, farming community. Ted works with a non-profit called “Aids – Out of Africa” (http://www.facebook.com/pages/AIDS-Out-of-Africa/109654919088134) and is also active in his community, helping to dispel myths about people with disabilities. How? By being their friend…

Hope to hear more from Ted in the future!

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When my cousin was asking for stories for the web site about disabilities I was a little confused.   But I walk around in a state of confusion anyway so it didn’t bother me.  I did however start thinking.  Disability is all around us every day.  Sure we recognize the Disabled Vet in the wheelchair or the blind with the service animal, but we miss many of the other truly disabled.  Disability comes to many in all forms.

Having been associated with the Veterans Hospital for the past 30 some years, I have become accustom seeing “Disabilities” and don’t stop to stare or wonder the why’s or what’s of this concentrated elite group of America’s often forgotten service men and women.  Some are missing arms or legs, some are blinded, some in wheelchairs.  But many have hidden  “Problems” that we don’t see.  They are legally blind but do not require a service animal or the typically white cane.  Some are deaf but with the miracles of new hearing devices are able to communicate without being obvious.  When I walk into the audiology clinic, the receptionist, Peggy, greets every patient looking directly at them, speaking clearly, just a touch of volume, and a little slower.  Suddenly I realize that she cares.  That means a lot.  And when scheduled for the optometry clinic the doctor personally called my home to reschedule an appointment because she was being transferred and wanted to personally follow up on a surgery.  I take that kind of service very serious.  I appreciate those who care to go that little extra distance.

Now for the purpose of this writing and the  personal note.  Charlie is a friend, I call him a friend because he always takes the time to come over and speak to my wife and I every Monday at the weekly auction we seem to always attend.  He jokes with us and tells us what has happened during the past week.  If Mary is not with me, he will ask about her and the same if I am not in attendance.  He pats me on the back and makes me happy.  I see him on occasion at different locations all over town.   He is the kind of friend that never complains about his personal problems.  If his personal transportation broke down, I would help him replace or repair as necessary.  However he has a disability that many shy away from.   Charlie is limited mentally.  His appearance also makes many uncomfortable.  His teeth were not taken care of but that is in a stage of repair now.  Most people see him as a nuisance or embarrassment.  I see him as a friend.  I have asked myself what is there about Charlie that makes me proud to be his friend?  It is because his “Disability” only exist in the minds of the “Normal” people around him.  Charlie is seen all over town because although he is not allowed to drive, rides his bike pulling a trailer, around to selected locations to do odd jobs.  He is at the auction because he helps load items for buyers for whatever “Tip” they might give him.  During the night he sometimes shows me how much money he has taken in from his work that night.  In his mind he is not “Disabled”.  He is however truly challenged.   He lives alone, and pays his rent.  He wears clean clothes, and is showered and shaved.  I cannot compare him to all the people that thinks the world owes them a living because he makes his own lemonade out of the lemons that nature has dealt him.

So as we walk past people at Wal-Mart, or set beside them on a bus, we don’t really understand the limits of their “Disabilities”….. Perhaps better yet we do not understand their unlimited  “Abilities”.  Maybe the person just needs a friend.  I don’t think the word “Disabilities” is a true description.  I think that the word Challenged is better.  But neither fits my friend Charlie for in his mind he is not challenged nor disabled,  he is making a living the only way he knows how.  If he receives a little help along the way, that’s great.  But he would rather be accepted as is, where is.  So when you are asked to repeat a statement because the person could not hear or more likely not understand you, don’t get angry or say, “Forget it” for they can’t forget.  Try to be more like Peggy, louder, slower and facing them.    If the vision impaired need a little assistance, offer to help.  Just a, “Need some help with that?”, can make a person’s day.   It might even make your day.  An older person might be struggling to reach an item off the shelve.  When you hand it to them, there is a moment where you feel like you have really done something great and you have.

Ted C. Burhenn.

Sex and Hearing Loss

Published on by hearingelmo3 Comments

When preparing to write this post, I went back and forth about providing “hard and fast” FACTS about gender differences in hearing loss and writing about personal observations. Because I can easily provide links to documents, research and scholarly articles about the topic, I decided to write about personal observations. Before I do that, let me provide those links!

A wonderful article about gender and race differences can be accessed HERE.

How hormones can have a part in the way hearing loss manifests in individuals can be read about HERE.

An article about why men are more likely to experience hearing loss can be accessed HERE.

An article by ASHA and Cochlear Americas can be accessed HERE.

Personal Observations

I realize that personal observations are somewhat limited by the experiences of the individual themselves. However, as I have had the opportunity to be a part of a number of hearing loss organizations, and have had the privilege of speaking to groups of my peers and professionals across the United States, I have a lot of faith in my own personal observations about gender differences. Sometimes new information was gleaned as the result of attending workshops, conferences and meetings; listening to experts on hearing loss discuss gender differences was very informative. However, I also happen to be a terrific “listener” in spite of my own profound hearing loss. Corresponding with people from across the United States that I may have met in my travels, or are frequently visiting “Hearing Elmo”, I have drawn some conclusions about how hearing loss affects the different sexes. Please allow me to share my observations with you!

Men with Hearing Loss

1. Men are more apt to be pushed into getting help. Perhaps men stay in a stage of denial longer than women do, but men are usually encouraged to do something about their hearing loss as opposed to taking the initiative to doing it themselves. I don’t think it is because they are unable to make decisions about their hearing health; rather, men are more likely to “fake” their way through life pretending they don’t really have a hearing problem. This does not mean that women do not “fake it”, nor does it mean that women are not ever pestered to visit an audiologist. I just believe that men are more likely to be badgered into going to a hearing health professional than women are.

2. Men do not usually seek support from peers until hearing loss has reached a critical point. I believe that men are more likely to “go on about their life” and “making do” after getting that first hearing aid than women are. If assistive technology allows a man to continue working, interacting, and living life, they will be unlikely to join support groups or advocacy groups compared to women with hearing loss. If hearing loss is progressive, men will also begin to seek out information, support, and peers once hearing loss interferes with communication and relationships. On the positive side, men with a stable, mild to moderate level of hearing loss are more likely to not let hearing loss define who they are. Hearing aids and assistive devices are merely tools. I think men may equate support groups with “talking about your feelings”, and as a result miss opportunities such as learning more about advances in technology, discovering legislation that may have an effect on hearing loss populations, and learning valuable communication strategies.

3. At the severe to profound level, men are more likely to shut people out. I can’t tell you the number of times men have told me that they alienated everyone that cared about them when their hearing loss really began to affect their lives. Perhaps it is a coping mechanism? One man wrote to me and shared, “I filed for divorce from my wife of 11 years. I felt in a panic to do it before she filed for divorce from me because I wasn’t the man she married”. One man came up to me after a workshop and said, “It’s easier to be be cranky and belligerent than to discuss with my family how my hearing loss makes me feel”. Still another shared, “I’d rather be accused of being distant than to talk about my hearing loss with her”.

4. Men are less likely to use hearing assistance dogs. Of all the people I know who chose to be partnered with a hearing assistance dog… most are women. Yes – there are some men… but my experience is that they are the minority. I believe if you are partnered with a hearing assistance dog, you have shouldered the responsibility of knowing that by doing so you will be making a potentially invisible disability very visible. Perhaps men are less likely to place their safety and trust in a canine partner? That doesn’t mean they are less likely to like dogs. (On the contrary, I am asked by more men to pet Chloe or field questions about what she does for me). The budding psychology student in me believes that men are more likely to strive to be independent of help from any avenue compared to women. What I find ironic, is that my own hearing assistance dog actually PROVIDES independence to me rather than a new dependent relationship. I think men and women simply view this very visible “assistance” in different ways.

Men in the Supportive Role

I believe men are supportive of those they care about that may have hearing loss. Many husbands attend HLAA, ALDA or AGBell meetings, conferences and conventions in support of someone they care about. However, I have heard women make complaints such as:

“He gets so frustrated that I’m still so SAD about my hearing loss!”

“He is supportive of MY problem, but does not acknowledge it is OUR problem.”

“He doesn’t mind making phone calls for me, but I can tell it frustrates him sometimes”

Women usually welcome a “helping hand” with something as intensely personal as hearing loss. They normally welcome a shared role in learning to live with the acquired disability.

Women with Hearing Loss

1. Women are more likely to “grieve” hearing loss. I think both males and females go through stages of grief when they experience hearing loss. However, I think women tend to get bogged down in depression and experiencing feelings of grief than men do. Perhaps it is because women are usually living more with their “feeler” than men do? I just know that I have heard countless testimonies of women who experienced real grief about their hearing loss. Maybe women are more likely to admit they feel sad about their hearing loss in comparison to men.

2. Women seem to need peer support groups even early in hearing loss. Not all hearing loss is progressive. However, I have been a part of a number of hearing loss support groups and traveled to visit groups across the country. Many hearing loss support groups have women who attend that have a moderate to severe hearing loss. Most of the time, the men I meet who attend these groups have a more significant loss. I think women rely on communication more than men do as a part of what holds their relationships together. When women see a threat to their relationships, they are spurred to action to seek out assistance from their peers. Women tend to flood the workshops on communication tips and will be the attendees who are taking copious notes.

3. Women tend to care about how their hearing loss affects others more than men do. Yikes. I may get “grief” for this one. Fellas? Before you send a barrage of emails to my INBOX, please note that I am not saying men do not care about how hearing loss affects the “others” in their lives. It has been my experience that women seem to be more concerned about how their hearing loss affects others… to a fault. Women can actually become bogged down in worrying about how their hearing loss is changing the lives of those around them. They may worry more about being a burden and how others “feel about them now”. A positive reaction, however, is that women are more likely to actively discover how the “others” in their lives are doing, and in the process adopt or modify communication strategies.

Women in the Supportive Role

I think communication is so important to women, that they may become NAGS to the men in their lives who have hearing loss. It is important to learn “HOW” to encourage the male in your life to seek help. Women may resort to desperate and negative measures if they see that communication has been influenced by hearing loss.

Men may attend support groups with their significant other with hearing loss as an ongoing part of their “protective/provider” role. When the male is the one with hearing loss, however, women should understand that the men in their lives may not necessarily welcome a partnership view of hearing loss. Men (especially at first) may prefer attending support groups alone so that they may continue in what they view as being independent in their role. Women should carefully choose how to discuss that support groups provide them with important information and tools as well as peer support from others who love someone with hearing loss.

As always, I welcome your input and own experiences as they relate to sex and hearing loss!

Now… for all those that saw the title of this post and thought I was going to write about something much different? You have an assignment:

Denise Portis

© 2010 Personal Hearing Loss Journal


Not-So-Fun Life Lessons on Vacation

Published on by hearingelmo6 Comments
A little morphine will put a smile on the face of most anyone!

Kyersten is a frequent guest writer at Hearing Elmo. She is a KODA and has participated in HLAA, Walk4Hearing, and Fidos For Freedom activities most of her life. She is a junior in college and is majoring in Psychology.

Okay, I’m really, really stubborn

Being someone who hates doctors and hospitals, I pretended nothing was wrong for almost a week. After all, if you pretend it isn’t there, it doesn’t exist right? Besides, you’re not supposed to get sick on vacation, that’s no fun.

But pretty soon I knew that I had, I decided, the stomach flu. So I went to the urgent care in my grandparent’s town. Or rather, one of them, because being a city of retired folk, they have about a million urgent cares.

After running a urine test and blood test (blech), the doctor discovered my white blood cell count was dangerously high. SOME stomach flu. They decided to give me an IV. Or, at least they suggested it…at first.

“No thanks, I don’t want an IV,” I smiled.

“Well, we need to give these medications, and it’s best through the IV,” explained a nurse.

“No, I’ll just take a pill,” I replied, smiling but firm.

“No, we’re going to have to put an IV in there,” said the nurse, smiling but firm.

“No I really don’t want it, just give me some pills, I’ll go pick them up at the pharmacy,” I said, slightly more desperate. The nurse pursed his lips. He was cute and a fireman…but married with twins, so a total loss there. He was just the enemy who wanted to stick the needle in me.

“Okay, well, you have to go get my grandma first. NOW.” I said. (All of my 20-year-old independence was out the window when it came to a needle!) I needed grandma, and I needed her NOW.

Thankfully my practical grandma calmed me somewhat and they were able to give me an IV, into which they slid medications and fluids into my body. Ooooo morphine. The world looked more amusing and less painful. But the morphine didn’t keep me from panicking somewhat when they decided to send me for a CT scan at a local imaging place. SOME stomach flu this was!

Deciding that perhaps I was wrong about the whole stomach flu thing…

After drinking 2 large bottles of nasty poisoned Gatorade (they claimed it was because of the dye mixed into the Gatorade), I was led to a back room.

The technician looked about my age. I was slightly suspicious how much experience he had. He led me to a room to change into some unflattering and itchy clothing. After waiting for a bit, I was led to the Machine.

“Now, this machine is going to take pictures of your insides,” he explained. I wondered how old he thought I was….I was getting a lot of “you look 16” comments recently.

“Oooh, can I put them on Facebook?” I asked, trying to lighten the mood.

“I supposed you can request a CD of the electronic versions of the pictures,” he replied seriously. Okay-y-y. (No sense of humor!)

The CT scan was boring and the technician bossy.

“Breathe in…hold your breath. Breathe out. Breathe in. Hold your breath. Breathe out”. Over…and over….and over….and over. I wondered if this really was taking pictures of my insides or was trying to calm me down from the harrowing IV experience (which, if I may say, was still in my arm. I was pretending it wasn’t there though).

I was sent to the waiting room. They called the fireman nurse and doctor. Pretty soon they called me up front. The fireman nurse was on the phone.

“You’re going to have to go to the hospital immediately. I was able to get a bed for you,” he said. He explained the process of getting there.

I nodded obediently as if he could see me, my rebellion rather withered. I assumed at this point it probably wasn’t stomach flu.

“Okay, I’m going to go get some stuff first,” I said politely.

“No…you need to go NOW,” Well okay then.

Well, this is all very…new…and…well, uncomfortable

So I went. I called my parents, who I had been keeping updated. I texted my brother to tell him I loved him. And I mentally prepared myself for surgery.

And then I waited.

And waited.

And waited.

They decided they needed to do more tests.

The first test they decided to do they quickly concluded they could not do because I am a virgin. They were very peeved. I almost apologized even.

“I’m really sorry I’m not like so many other young people nowadays and haven’t lost my virginity several times over by now!” On second thought, no, I was proud of the fact I was a virgin.

So instead they did an ultrasound. Wait just a minute, didn’t they just establish I was a virgin? So why exactly are they doing an ultrasound? But no, there are apparently other reasons to do an ultrasound. Grandma was completely fascinated. I was just uncomfortable.

Late that night Mom and Chloe arrived, both were tired but very happy to see me. My grandparents went home and I was knocked out by some sleep medication while Mom kept watch by my bedside in the hospital.

I was comforted by her presence and she said I kept reaching out towards her in the night, to reassure myself she was there. You’ll always need your mom.

Tests, tests, and more tests…and I never even got a grade

Kyersten needed a "Chloe hug" once the morphine kicked in...

The next day was filled with more tests, including an MRI. The MRI was probably the highlight of my hospital stay… if there could be a highlight. The MRI technician looked like a mad scientist and he was absolutely hilarious. The MRI itself was kind of cozy, and he actually had to wake me up once. I felt rested after the scans.

After all the tests, including so many blood tests that I lost count, it was time for them to consider what to do, because they were really not sure what was wrong with me. They did another blood test to once again confirm that I wasn’t pregnant (as though the two ultrasounds, the urine test, the blood tests, and oh yeah…the fact I am a VIRGIN, wasn’t enough to confirm!)

Wednesday was the day. I wasn’t scared of the surgery, I was in too much agonizing pain to care. I had never before felt such pain and I hope I never do again. A terrible migraine hit me on top of my stomach pains. Then, my IV decided to try to burst my veins; thankfully, the skilled nurses got it out in time. Unfortunately they had trouble finding a new vein and dug around in my left hand for awhile before moving to my right arm.

A story of being in a whole buncha pain…oh and experiencing being “high”

That time was the worst part of the hospital stay, all I could do was lie on the bed and sob, feeling like a complete baby and wanting so so so badly to be home. My amazing Grandma and Mom were there, answering tears in their eyes. At one point Mom left to talk to a nurse and my Grandma prayed for me…which I needed to hear because all I could pray was “please God please please, please God”.

The nurse, in desperation, gave me a new medication which made me very….well….high.

“I think my words are messed up,” I gasped. I stumbled, shaking as if I was having a seizure to the bathroom and back to the bed.

“I can’t talk, my words are gone,” I moaned in confusion. Mom and Grandma were whispering, used to trying to keep quiet because of the migraine.

“Please don’t whisper….your lips smack together more,” I complained. My poor long-suffering family!

They finally wheeled me down to be prepped for surgery and I did feel a bit nervous. The pain, however,  was over-riding everything else again. The weird pain medicine had worn off. A nurse’s humming drove me insane, as did the loud talking of the nurses around. I really wanted to be in a quiet hole somewhere. Mom asked the nurses to quiet down (bless her wonderful, protective heart), and most of them did, except the loud humming one.

She gave me papers to sign. I apologized for my clumsiness, saying I was not left-handed (the IV and various wires were on my right arm). She snapped at me to use the other arm then. I meekly admitted I needed to use the bathroom.

She ripped the different cords off me (I had spent some moments trying to see if I could change my heart rate, before the headache returned…it was fun!) and took me to the bathroom, hooking my IV on the door, and leaving me. I was terrified someone would open the door and pull the IV out, so I hurried. Barely able to even lower myself to toilet by myself, I half-crawled to the door and yelled for help. I was definitely learning humility! Another, kinder, nurse came and helped me.

Going under the knife…and having little cameras looking inside my body….weird

Then it was a blur, I was wheeled to the room, and after prepping me a little more, I waited for the countdown.

And woke up in recovery.

“I have to pee,” I cried. I was assured I didn’t need to. I sat there whimpering for a few minutes about not being able to see (my eyesight was blurry) before I gained control of myself and calmed down. I felt kind of silly when I realized how much I had been crying. Now I was just confused. I squinted around me. I had no idea what happened in the surgery. The hospital doctor came by and seemed truly pleased to see me. He explained that my appendix had ruptured, they removed it, and cleaned up the infection. Ewwww. Eventually I was wheeled up to my room, I was happy to see my nurses and family, in a very drugged-out foggy way.

The time where I felt like Frankenstein

After another couple of days of recovery, which all seemed like a blur, a surgeon came in to look at my wounds. I watched them uncovered the bandages.

“Oh it looks so good!” he said. I almost screamed…or passed out, I was still deciding which to do before he left. Nine terrible looking staples were stuck in my stomach. I decided I was having a nightmare.

“What is that?”, I whimpered. My mom comforted me and explained the fact I had staples, not stitches. I felt absolutely horrified. I decided to pretend they weren’t there. (I was getting good at denial. It can be psychologically healthy sometimes).

The drug-induced blurred ending of the story…they put me on a lot of medications

The next few days consisted of different milestones. Leaving the hospital… sleeping a lot at my grandparent’s home… going to the airport… setting off the metal detector with my staples… flying home… being pushed through the airport by a speed demon wheelchair “pusher”… and finally arriving home alive. (All of course in a drug-induced stupor).

What I Learned…oh the joy of life lessons

Yes, it wasn’t the best vacation but my pain and suffering eventually stopped. There was a fix. It eventually slowed and I became stronger and felt better each day. In spite of the trauma of events, it was just a “blip” in my life.

I was forced to think about my friends and family who do NOT have a “fix” for their physical problems. I thought of how the doctors at first were skeptical that something was terribly wrong. During the exploratory surgery, I finally had proof something was wrong. (Even though my appendix wasn’t where it was suppose to be… I knew I was special).

I have friends with Lyme disease who do not have “proof” of their illness and are treated with skepticism. I can now understand … in a small way… what they go through and not having a doctor listen to you. It made me appreciate those emotional trials they go through in addition to their physical ones.

I thought about my friends and family with disabilities and illnesses that have no cure. At the times I was tempted to feel sorry for myself (and yeah! I may have given in and had a pity party or two), I thought of the fact that there was a light at the end of the tunnel for ME. It made me appreciate the bravery of those who live each day with no “light at the end of the tunnel”. They still live life to the fullest. I know they have times of weakness and maybe a pity party or two. But they live each day with the strength and bravery that I can never imagine having myself. Pain and helplessness (doing simple tasks like using the restroom), makes common life tasks more challenging. I never fully appreciated what those with chronic illness and disabilities go through each and every day. It helped me go through my small trial of physical pain and helplessness…I thought of these people and felt motivated to keep at it, to be strong. I am awed by their strength. From this experience… I now have new heroes. Those who overcome physical challenges every day.

Kyersten Diane Portis

20-year-old Guest Writer to Hearing Elmo

© 2010 Personal Hearing Loss Journal