invisible illness – Page 4

Sometimes? All You Can do is LAUGH

Published on September 22, 2014 by hearingelmo7 Comments

You’d think by now hound dog was accustomed to me bustin’ out into peals of laughter. I’ve done it often enough, after all! But I still take her by surprise sometimes!

I had a “Murphy’s Law” kind of day just recently. One of those days where if something COULD go wrong, it WOULD. Some interesting facts about Murphy’s Law and where it all began, visit this link. “Whatever can go wrong will go wrong”.

Chloe and I were walking one evening and the weather was DIVINE. Hardly any clouds, low humidity, and I had a “pep in my step”. For once, my Meniere’s disease was allowing me to walk at a pretty good clip with very little weaving. When I walk, I talk to my dog. Chloe would probably freak if I took a walk and was totally silent. It helps her pay attention to me, and I throw her name in there from time to time. However, sometimes I’m just…

Yackin’

Yup. Just talkin’ about anything and everything. It helps me to think out loud and I tend to go on and On and ON. I actually said out loud, “Wow, Chloe. Look at how easily I’m walking this evening! No wobbles! Moving along at a good rate! I’m smokin’!”

Chloe gave me this LOOK. Almost as if she anticipated something going wrong after that lofty observation. Within 30 seconds (I kid you NOT), I stumbled on an ornery piece of elevated sidewalk and opened my mouth to shriek (for I do precious little QUIETLY) only to have a bee swoop in my open mouth as I began to fall into a nearby bush. So here I am choking on a bee, trying like crazy to spit it out while being impaled on various twigs and branches of a bush… a ROSE bush – wouldn’t ya know? So thorns grabbing me everywhere. Worse, it was damp earth under the bush thanks to recent rains so when I connected with the ground there was a obvious squishy sound and splat as my hip, knee and foot connected. So there I lay in the mud INSIDE a bush, choking on a bee, covered in thorns, desperately trying to hang on to my leash because Chloe was …

OUT THERE

SOMEWHERE

outside the BUSH.

I laid there a minute trying to go through my Meniere’s “play list” that automatically begins playing after I fall.

It’s a cute little jingle.

I’d share the wonderful lyrics with you so that you can sing along… but frankly I can’t carry a tune in a bucket and it’s one of those songs one whines and sings to oneself. So anyway… I run through the steps.

1. Am I dead?

2. Is anything broken?

3. Where is Chloe?

4. Can I move?

5. Do I need help?

So I was able to answer, No, No, *POINTS – somewhere outside the bush*, Barely, Yes.

I tried to turn to see if I could reach my bag. You know… the one with my cell phone in it that I carry in case of emergency? I can see it just out of reach out *there* near Chloe’s legs.

So… I asked Chloe to fetch the bag for me. She grabbed it up and ducked down to look under the bush at me. What she saw, made her drop her jaw and the bag tumbled back to the ground. Crap. Now my phone is laying outside the bag. So I tell Chloe to “fetch phone” – which is actually easier for her to do as it is something she does several times a day. She grabs the phone, looks down under the branches again to where I lay and squirmed to reach my outstretched hand to give me the phone. Success!

Only… the phone is dead. That’s right, I carry around a phone with a dead battery on walks because it is SO helpful to do that. *rolls eyes*

So I decided that I needed to get out from under the bush. Easier said than done. I’m hung up, slightly injured, dizzy, muddy and on the verge of crying. Not a good combination. I thought, “Oh my gosh. I’m going to have to lay here until somebody walks by to help. How embarrassing! How will I explain this?” I didn’t have to lay there very long before I noticed that Chloe was now snuffling at my hung up hoodie sweatshirt.

TUG. YANK. R…I….P! Unbelievable! She tugged me free!

I rolled to one side to get out from under the bush and was wise enough to sit there a minute. Chloe plopped down and waited for me to “collect myself”. I fall SO OFTEN, if I am able to just go down without hitting my head I consider that a coup. So I checked out all my scratches and now torn clothing and thought that – heck. It could’ve been worse. It HAS been worse. So I started to laugh. Sometimes? All you can do is laugh. Chloe looked at me and just panted and “grinned”. It’s not the first time I’ve sat laughing covered in mud and trying to find the wherewithal to get up and keep going! (Likely won’t be the last time either!)

Can You Laugh at Yourself? Should You?

If you live with an invisible illness, have a disability, or a chronic condition, it can be helpful to learn to laugh at yourself. A great little article about the benefits of laughter can be found HERE.

But if you don’t believe in the power of endorphins or social connectedness, you still should learn to laugh at yourself. At least… that is my opinion. Here are some reasons I have learned to laugh at myself:

1. If I am laughing, it can reduce anxiety that others may feel when my disability pops up and causes me to do something like fall, mishear something, or other “Denise blooper”. Does it matter if someone else’s anxiety is lessened? Well… I don’t want people to feel uncomfortable around me. If I can laugh at myself, hopefully they will learn that I take who I am and my new “life parameters” in stride and am fine with it.

2. It reduces MY anxiety. Endorphins are real. It’s not some kind of borg nanotechnology that only re-routes and fixes sci-fy actresses. I FEEL BETTER after laughing.

3. If I laugh, it really helps me accept myself – just the way I am. You can’t change the unchangeable. I’m a klutz. I’m going to fall. As long as I’m in one piece and don’t have any odd bits of bone poking out anywhere, (Yeah, I know. Right?) laughing at myself helps me just accept what happened. It is MY WAY of embracing my flaws. This is who I am.

3. It helps me put things in perspective. While cackling like a hyena, I can take stock too. My little “jingle” may re-play. Some deep breaths – a mirthful hiccough or two, and I’m good as new!

4. Laughing helps me de-stress. Likely I’m laughing because I just did something that COULD cause me stress. (What if someone saw? Bet this mud will NOT come out of my jeans! Chloe tore my hoodie! I’m never walking again! As a matter of fact I’m just going to sit here on the sidewalk and feel sorry for myself! I’m going to stomp on my phone – when I finally get up. I hate my life! I want my mother… ) Laughing… de-stresses me. I can feel the tension roll off of my shoulders.

So I do believe “laughter is good medicine”. But…

There are perfectly good reasons to take the time to CRY too.

Or Scream.

… but those are best left for another writer to touch on! 😉

Denise Portis

Recurring Dreams… Life Goes On

Published on August 11, 2014August 11, 2014 by hearingelmoLeave a comment

One of my favorite chapters in “Introduction to Psychology” is the one where we study dreams, sleep, and the subconscious mind. Everyone dreams – though you may not always remember your dreams. If you have furry family members, you’ve learned that even pets dream. I’ve seen evidence of REM sleep in dogs, cats, hamsters, even cows!

Very likely, if you do remember a dream it is because it was a bad one. Or, you may remember it because it is a recurring dream. Interpreting dreams is tricky. Yes, yes, I know! Abraham, Jacob, Joseph, Daniel, and numerous others in the Bible made it look easy. It really is NOT that easy. If you have dreams that are bothering you, or have recurring dreams, don’t be afraid to talk about them with someone you trust. It can be a friend, counselor, or peer with a supportive role in your life. However, just remember, YOU are the expert on your dreams… they are YOUR dreams. Tartakovsky (2011) explains that there are indeed some universal symbols in dreams, however what those symbols mean to the DREAMER is what really matters. Someone else analyzing and interpreting the dream on your behalf is very likely inaccurate. In spite of knowing WE are the expert when it comes to our dreams, recurring dreams usually end up making us “talk out loud” about what we are dreaming. Because you dream this dream OFTEN, you start thinking about it when you are awake. Most dream analysis experts agree that “recurring dreams reflect feelings and awareness that have not been successfully resolved in our waking lives” (Psychology Campus, 2004-2008, para. 4).

My Recurring Dream Had a Specific Trigger

I (like many of you) have a recurring dream and it always follows the same conscious scenario. Every time I fall and actually sustain an injury, I can guarantee I will have the same dream. I actually call it my “falling dream“.

Yes.

I do understand that by anticipating the dream, I am likely precipitating the dream itself. I get that. Now before you jump to conclusions, my dream isn’t about falling. Heck, I do enough of that in my conscious activity! I certainly don’t need it to happen in my subconscious mind – grin!

After a fall, I have a dream where I’m walking in a busy location with people everywhere, and all of sudden I’m frozen and cannot continue walking. Perhaps even more telling, my service dog, Chloe, is also frozen mid-step. Everyone around us continues to walk, talk, and move. Sometimes in the crowd I recognize people from my family, work, church, etc. Most of the time the faces are strangers, however. I can “hear” myself in the dream screaming (of course my mouth is not moving), “Help me! I can’t move! I can’t speak! Why aren’t you helping me? Can’t you see I’m frozen?”

So… yeah. Please have fun with that and if you feel like commenting or emailing me what YOU think this probably means, go for it! I’m always interested in other’s opinions. Because the dream always follows a significant “Denise fall down – go boom” moment, I think I have this one figured out. I’ve had this same dream for over 12 years. The only thing that has changed in the dream is the addition of Chloe, my service dog. I was matched to Chloe in 2007. Goes to show the significant impact a service dog has on their person that she ended up in a recurring dream. <BIG GRIN>. Another change in the dream occasionally happens… but I’ll get to that later! <wink>

I believe this dream “for me”, means that I recognize that my “new normal” has an affect on ME, but not so much others. All the feelings, fears, bruises, even shame, is something I deal with in being differently-abled. However, it isn’t something that impacts others. Ever want to scream at the world to stop a moment and acknowledge that…

DARN IT. I’m dealing with this! Don’t you see?

DARN IT. I suck at this! Don’t you see? HELP!

Life goes on. That’s hard, isn’t it? Isn’t it frustrating when you are sucker punched with a personal crisis of some kind and life just goes on as usual for everyone else? Worse? Life goes on for YOU!?

You lose someone close to you and crap. Life goes on.

You receive a diagnosis that will change your life. This sucks but life goes on.

Someone you trusted betrays you. It hurts but life goes on.

A progressive illness progresses. You adapt and life goes on.

You are sick and tired of being sick and tired. Life goes on.

Simple Acknowledgement

Most folks who live with invisible disability or a chronic illness will tell you that it is hard for them to share with others when they are struggling. This may be because they always seem to be struggling and figure everyone around them is sick and tired of hearing about it. We don’t want to be labeled as a “bellyacher”. Maybe you only rant to someone close to you. Perhaps you write. Maybe you pray. You may have some type of “release” that allows you to vent.

Sometimes my frustrations get the best of me and I bellyache out loud. However, most of the time I keep it quiet or at most confide in a trusted friend who “gets it” on a level that others cannot. I have a friend with MS who once told me, “Denise? I always feel like crap. I can’t respond to ‘How are you today?‘ with, ‘actually I feel like crap!‘. So I respond the way all of us respond, ‘I feel great, how are you today?‘. I can’t respond truthfully. People who do not have MS cannot understand what it is like to wake up tired, go to bed tired, and hurt all over each and every day. So I lie and say, ‘I’m great! How are you?‘ I don’t think this makes me a liar. This is how I convince myself I’m OK. I try to convince others I am.”

You know? I don’t know very many people who live with significant challenges who want someone who will allow them to dump for hours each day. Griping for hours on end does not help physically, emotionally, or mentally. Most of us learn early on that perseverating on the negative only provides the ingredients for a significant meltdown. It is HUGE, however, to know we have a trusted peep or two that we can say, “Today is a bad day, but I’m going to be OK“.

Most of us simply long for a quick acknowledgment. Perhaps a short hug. I have a friend who has a seizure disorder and lives with chronic fatigue and pain whom I see about once a week. Like most folks, when we greet we say, “How are you doing?” I know this person well enough that both of us can say (on a day things aren’t going so well), “I’m not doing that great today, but things can only get better“. Or, “I’m not doing that great but I’m OK. Tomorrow will be better“. A pat on the shoulder and an understanding hug goes a long way. My friend doesn’t want me to grab her hand, drag her over to the side, and make a big production out of her “horrible, no good day”. If I say, “I’m thinking about ya“, or “How can I pray for you today?“, that is enough. You can see some of the tension roll off their shoulders. Simply acknowledging another’s pain or distress is A BIG DEAL. Salovey, Brackett, and Mayer (2004) call this empathy or emotional intelligence, and one can grow their EQ (emotional intelligence) simply by learning to acknowledge someone else’s feelings. It doesn’t have to be time-consuming. As a matter of fact, here are some great tips that will grow your EQ and help someone else:

1. Remember – and follow up.

Did someone tell you that they were having a rough day? The next time you see them ask them how they are doing NOW. By simply remembering they were going through a tough time and you care enough to follow up is HUGE.

2. Send a card.

My life has dramatically changed in that most of my correspondence is electronic. I buy one book of stamps each YEAR, when I use to buy that many stamps each month. However, I do shop for and keep inexpensive cards for “other” occasions (in other words, not birthday or anniversary), so that I can send a card off to someone who let it “slip” they are going through a tough time.

3. Follow up with a text.

It takes 10-15 seconds (depending on how many thumbs you have), to send a quick text. If you’ve limited time, don’t text an open-ended question. Just send off a quick, “Wanted you to know I’m thinking of you today and hope your day is better“. It doesn’t take much time and it likely means THE WORLD to that person.

A Significant Change in the Dream

Ok. I explained earlier that I do have one specific change that happens in my dream and over the years I think I have this figured out as well. Sometimes when I am “frozen”, a person or persons do come up to ICE CUBE Denise and Chloe, and try to help. Guess what? These are usually people I’m thinking about consciously, who are also going through something significant. For example…

I had this dream this past week after a fall on the deck. The injury was significant enough to warrant a doctor’s visit, x-rays, and a cancelled trip. I have been thinking about and praying for two specific people, both of whom showed up in my “falling dream”. One had surgery last week, the other is looking at surgery in her future. Both came and patted “frozen Denise and Chloe” and told my icy self that “everything would be OK”.

You know what? Having a support group MATTERS.

It doesn’t mean that you need to join an organization (although there are benefits to doing so). It does not mean you need to find a group in which you stand up in a circle and say, “Hello. My name is Denise and I have invisible disabilities“. However, there is significant HELP in having a person or two who GET IT.

A tribe.

People who understand where you are coming from when you experience your life – your “normal”.

Thankfully, it is fairly easy to find those folks. The Internet has opened the door to really connecting with others who are like-minded, live what you live, and provide support simply because they truly GET IT. Maybe you have a friend or confidant who is that support for you, but they don’t actually share your diagnosis. But folks? Everyone has something. Life is hard. We all have difficult times. The two folks who showed up in my “falling dream” last week do not share my diagnosis. They do share living a difficult life but PERSEVERING. That’s why these folks show up in my dream. Support makes a difference.

You can be that kind of support. It will grow you. It may be time consuming at times. You may find a reciprocated “shoulder”. You may not. I don’t know about you, but at the end of my life I want to be the kind of person who patted a few ice cube people. I want to be that person who tells someone THEY matter. What they are GOING THROUGH matters. One of my dream goals is to eventually see a puddle under every person in my crowd.

Because we all deal with something.

We can help each other to thaw out by caring, listening, hugging.

Denise Portis

Psychology Campus (2004-2008). The possible meanings of dreams. Retrieved August 11, 2014 from http://www.psychologycampus.com/dream-psychology/

Salovey, P., Brackett, M. and Mayer, J. (2004). Emotional intelligence: Key readings on the Mayer and Salovey model. New York: Dude Publishing.

Tartakovsky, M. (2011). How to Analyze Your Dreams (And Why It’s Important). Psych Central. Retrieved on August 11, 2014, from http://psychcentral.com/lib/how-to-analyze-your-dreams-and-why-its-important/0005975

Turn On Date

Published on August 4, 2014October 25, 2014 by hearingelmo3 Comments

One of my favorite discussions to have with people who have chronic illness, invisible or visible disabilities, or living a “new normal”, is sharing stories of how their adopted vernacular throws others they communicate with for a loop. We probably all have stories to tell. If your life is different because of a surgery, technology, or diagnosis, you may be using words and phrases that confuse and irritate folks who don’t live a similar life. I try to be careful and take a quick look around at WHO I’m talking to when having a conversation, but that is after really screwing up a lot in the early years. Here are some of my more memorable screw ups:

Your Turn On Date

Johns Hopkins sends folks my way when they are considering a cochlear implant, especially if they have Meniere’s disease as well. I have learned that when talking to someone new to the idea of cochlear implants, you cannot talk to them like someone who has already had the surgery. Cochlear implant peeps throw around terms that make perfect sense to US, but not so much to others. Case in point: I met with a lady with Meniere’s at a library who was investigating cochlear implants. At some point in the conversation I said, “Now the date you are turned on, you need to have a designated driver if possible. Everything will be so strange and you may not be able to drive safely if you don’t have someone to drive for you after you are turned on“.

Her eyes got big and she paled. She stuttered out, “Wha…wha… WHAT!?!?” I’m savvy enough to figure out by the way she answered that she didn’t understand my terminology. I thought I’d clear it up but succeeded in only making it worse…

“Yes, when you go to the audiologist and they turn you on…” I stopped. Seeing her dropped jaw will silence me. I backed up and tried again, using “activation date” instead of “turn on date”. Do you know something? Unlike others who meet with me, she never followed up with post-surgery emails or meetings! <BIG GRIN>

I Lost My Ears

I had only been activated 8 months when I lost my ears. Now for CI folks, they get that when we talk about our “ears” we are talking about the external technology… not about our “listening appendages”. I was in a super Walmart, looking for a very specific jar of dill pickles (because yes… I’m that picky), when my cochlear implant – which has a magnetic coil to keep it on my head – flew off my ear and into the pickles.

Had I stayed still and searched the immediate jars I would have found it right off. As it was, being new to “hearing again”, I immediately stood up and screeched because my world had suddenly and completely gone SILENT. An older lady shopping amongst the same shelved pickles looked at me strange. I nervously picked up jars of pickles looking for my “ear”. The lady came closer and joked, “Are you pregnant?“. I turned to her with big tears in my eyes which made her come closer and immediately quit teasing me.

“Are you OK?” she asked kindly. I looked at her and wailed, “I lost my ear! I can’t find it!”

She looked at me bug-eyed and walked away. Quickly.

Thankfully I found my CI attached to the metal lid of some nearby olives. No wonder I couldn’t find it amongst the pickles.

I’m Not Turned On

When we lived in another part of Maryland, we use to have to drive a long way to go to church on Sunday. We actually went into another county to do so. Normally my family doesn’t listen to the car radio because they know that I’m totally incapable of tuning out the radio and hearing just the conversation. However, on longer trips, I often say, “I’m turning my ears off” so that they can listen to the radio and they know if they need me they only need to tap my shoulder. In truth, it is nice being able to sit in “total silence” from time to time. It is certainly conducive to “deep thinking”.

So one Sunday on our way to church, I gave the family heads up that I was going silent on purpose. I must have moved from “deep thinking” to day dreaming. We got to church, got our stuff out of the car, and Terry and I waved goodbye to the kids as we headed over to the building where we had small group Bible study. I’m still deaf at this point and I couldn’t tell ya if Terry was talking to me. I know my mind was somewhere else – that’s for sure! We went into the classroom and sat down at the big table. Some other couples were already there. One of the ladies leaned up so that she could see around Terry and said something. It was then I realized I still hadn’t turned my cochlear implant back on. “Oh! Wait, I’m not turned on!”

I reached up and punched the correct button and looked around at a bunch of stunned faces. Terry was actually embarrassed. (If you know Terry, you know he rarely gets flustered). A few who caught on a little late began to snicker. Me? Well I thought it was just HYSTERICAL. So I managed to get out in between laughs, “Oooops. I need to find a better way to say I don’t have my CI on“. Terry quickly said, “Yes Denise. Yes you do!“. It took a number of months for me to live that one down.

Remember Your Audience

Do you live with a chronic condition or acquired disability? Have you become an expert in navigating your “new normal”? Can you “talk shop” with the rest of your population?

It’s hard to remember that just because WE understand what we mean, others may not. We tend to use words and phrases that become a part of our vocabulary. Try to pay attention to your audience. A good advocate learns to do that. You may have to deliberately choose to use a different word or phrase if no one really connects with it but you. For example, I had to stop referring to my bright purple cane as “my third leg”. I’m fairly naive and had no idea the shocked looks were from folks who had heard that phrase in a completely different context.

In order to really educate and advocate, you need to use terminology that the general public will understand. You may think a word or phrase is very obvious, but others may not ever hear that word in conversation. I was trained at Fidos For Freedom, Inc., to know how to advocate for accessibility with my service dog. The trainers didn’t tell us, however, that not everyone in the general public knows what the ADA is! (Thankfully, they also equipped us with great little brochures and handouts with the law explained on them).

“Fibro fog” may only mean something to other folks with fibromyalgia. “CFS zombie” may only be a phrase others with chronic fatigue syndrome use. HoHearies can be figured out by most of the population, but is only self-identified by those who are hard of hearing. The general public may even make incorrect associations just because they don’t understand your chosen words. I had no idea anyone would ever think “tinnitus” was something caused by a cut from a dirty tin can.

You are a more effective advocate when you “consider your audience” and appropriately explain symptoms, treatment, and diagnosis. The goal is to educate after all. If you only succeed in confusing those around you, you haven’t really helped to educate.

What’s REALLY fun is when those closest to you start to confuse others as well. Terry often asks if I “have my ears on” now.

Denise Portis

Inclusion

Published on June 9, 2014 by hearingelmo1 Comment

A friend of mine from high school works for KIT (Kids Included Together) and I’ve enjoyed following her training schedule on FaceBook as it takes her literally all over the world. KIT, “… specializes in providing best practices training for community–based organizations committed to including children with and without disabilities into their recreational, child development and youth development programs” (KIT, 2014, para. 1). I touched base with her recently to ask if she and I could dialogue about what inclusion looks like on a community college campus. I want to be more involved at my workplace with the Student Services department and Disabilities office to help raise awareness about what disABILITY, chronic illness, and invisible conditions are (and are not), and to help train professors and staff to provide an atmosphere of inclusion, acceptance, and a place to grow for all who are differently-abled.

There seems to be such stigma attached with certain diagnosis or disABILITIES. I cannot stress to fellow professors how important it is to let students know at the very beginning of class:

1. You welcome transparency about any and all invisible illnesses, chronic conditions, or disabilities.

2. You provide assurance of confidentiality.

3. You provide a platform in which students can provide feedback about classroom procedures or policies that make it difficult in light of their diagnosis or condition.

4. You become a “safe person” to any who wish for a faculty advocate to coordinate with Disability Support Services and/or other faculty.

Some unfortunate stigmas attached to living with a disability or chronic condition, include:

1. You are looking for special favors because you are “special”.

2. You are not capable of doing well in class because you have to do things “different than the norm”.

3. You have a persecution complex.

4. You are a drama queen/king.

Some of the strongest people I know are people who live daily with an invisible illness/disability or chronic condition. They not only often have to find “new ways” to do something that to the normal person seems “easy” (for example, washing hair… pretty darn difficult if you have a balance disorder), but they also have to navigate a world that harshly criticizes, misunderstands, or labels folks who struggle with these issues. Some of the most difficult invisible illnesses to positively advocate for are those with mental illness or disorders. Good gravy, talk about your stigmas! They are often considered “crazies” or “fragile”, and people often avoid them after disclosure. This sucks IMHO. Some of my favorite people are those who happen to have mental illness or disorders. Talk about your resilient people! 🙂

Real Responses that HELP

As I have been thinking about inclusion from an adult perspective, I have found that in many arenas, peers, co-workers, and colleagues want to make their event fully accessible to you but do not know where to start. I have learned in the decades I’ve lived with invisible disABILITY, that we should strive to not only point out the problem – but also the solution. So here is where I need your help. I want to put together a document that can be downloaded by readers so that folks can use the collaborated effort of YOUR ideas to assist when they have problems of their own. So email me your examples, and I will include them! denise.portis@gmail.com – in the subject line please put: Hearing Elmo Problems and Solutions.

Here are some examples of my own to get your brain working on ideas yourself! Not all are “cut and dry” problems and solutions. Sometimes the solution is simply a candid response. Read on:

1. PROBLEM: It doesn’t help when you yell when I’ve indicated I can’t hear you as added volume distorts your words and draws attention to both of us.

SOLUTION: If I have indicated I didn’t hear you, please make sure you are facing me. It helps me to see your face. Speak in a normal tone and try not to over-enunciate words as this distorts the way it appears on your lips. If I still cannot make it out, consider writing it down, or re-phrasing it.

2. PROBLEM: It’s great to have accessible venues as long as the accessibility options are available.

SOLUTION: Are there elevators available for those who cannot take stairs? Please make sure these are not blocked. (At a recent workshop I attended, when the elevator opened, the registration desk was backed up to the opening, blocking the exit. They were horrified and quickly moved things, saying, “We didn’t know someone was attending who needed this“. It’s actually against the law to block accessible options from use. This includes handicapped parking, bathrooms, ramps, making sure hearing loops are actually switched on and working, and much more. (I once complained that the handicapped stall in the ladies room had been “out of order” for a couple of days and was encouraged to use the other available stalls until it got fixed. WHAT? *grimace*).

3. PROBLEM: People think if I just plan ahead and “rest up”, I will be able to participate in an event.

SOLUTION: When I have to bail even last minute on something I hoped to attend, I try to provide as much notice as possible. You may need to remind organizers or colleagues that how you feel “day to day” is often out of your control and that you regret the late cancellation. Something as uncontrollable as the WEATHER can wreck havoc with my plans. We aren’t trying to be butt-heads and we very likely really wanted to participate. Please do not make it worse by giving us a hard time or insinuating we planned poorly.

4. PROBLEM: The workshop has several small group activities but the room does not allow the groups to separate very far. This may cause difficulties for those with any degree of hearing loss with the “bee hive” effect.

SOLUTION: Go up to the workshop facilitator and request to allow your group to go out in the hallway, or a nearby room so that it is quieter so that you can participate. (If you know in advance the workshop may incorporate these kinds of activities, see if the conference/convention center has assistive listening devices, or invest in your own so that you can carry it with you always. Be a “hearing loop” advocate! http://www.loopamerica.com/?gclid=CjkKEQjwttWcBRCuhYjhouveusIBEiQAwjy8IG2XkFTiQkOxeExJVBKV8kaOwZxqjxKgqTGAMSh4Ktzw_wcB)

I look forward to receiving your own ideas and together presenting a form we can share!

Finally, you may be wondering about the picture I chose for this week’s post. The truth of the matter is, we all have the power to wound or injure another person with words, actions, or lack of action. I want to remind my own community of folks who live with chronic illness, or invisible disability that you are not alone. Yes, people can and will hurt you. But there is strength in numbers and you are not alone. I get knocked down from time to time, but you seriously are going to need “back up” to keep me down. This community is very resilient. We bounce back because we’ve learned there aren’t a lot of other options.

Send me your own ideas of problems and solutions to things that you have perhaps experienced yourself. I leave you with one of my favorite “list graphics”:

Denise Portis

Kids Included Together (2014). KIT: About us. Retrieved on June 8, 2014, from http://www.kitonline.org/html/about/kit.html

I Was Given Just 15 Months to Live…

Published on May 2, 2014May 2, 2014 by hearingelmoLeave a comment

Hearing Elmo welcomes guest writers are I am thrilled to introduce you to Heather Von St. James. Invisible illness and disability are not aided in remaining invisible. One of the things that helps to raise awareness is for advocates to write about their experiences, and educate others about “little known” diagnosis. Heather shares in an interview, her passion for mesothelioma research and awareness because it is HER story. You can learn more about her personal experience at: http://www.mesothelioma.com/heather/#.U2PU0ihNuSo

If you would like to contact Heather, please see her contact info at her website.

Heather, many people may not even know what mesothelioma is. Can you explain what it is in layman’s terms for us?

Mesothelioma is cancer of the lining of the organs primarily caused by asbestos exposure. There are three main types, Pleural, which is the lining of the lung, peritoneal, which is the lining of the stomach area and pericardial, which is the lining of the heart.

How common is this type of cancer?

It is quite rare… only about 300 people a year in the US get diagnosed with it every year.

What can you share about those early days immediately after diagnosis? What were you thinking and feeling, and what advice can you give those newly diagnosed with this?

The first few weeks were a total blur. I was going from one doctor appointment to another, then from one scan to another, making travel arrangements to get us to Boston to see the specialist, as well as trying to tell everyone in our lives what was going on was almost more than I could deal with. On top of that, I was caring for a newborn. My daughter was just 3 1/2 months old upon diagnosis.

I remember thinking that I just need a plan to beat it. If I could get a plan in place, then it would be ok. The feelings were all over the place; fear, determination, anger, relief that I finally knew what was wrong with me… then finally a state of peace, because I knew that no matter what, this was happening for a reason, and I would do whatever it took to beat it. My advice would be to find a medical team you are comfortable with, and a specialist. Get a page on Caring Bridge to keep friends and loved ones up to date on things going on, so you don’t have to make 1000 phone calls. Surround yourself with your support system. The more people to help you out in your time of need, the better… and let them help you. That is the hardest thing sometimes, is to open up enough to let others help us.

What advice can you give friends and family members? What are “good things” to say and do, and what were some of the “not so good things” you heard that were not beneficial to you?

OH boy… there is not enough space to talk about this! The main thing to remember… cancer isn’t contagious. You can’t catch it from the person who is ill.. Your loved one who is sick has not changed, they just have this going on in their life. Don’t desert them… be honest with them, that yes, it scares you, and you are scared for them, but this is about them not YOU. Good things to say are to tell the person you love them. Be mindful of the person who is ill, and be honest with them. Don’t be a Debbie Downer, and be depressed around them, that does no good for anyone. Just be who you always have been. Trust me, they will appreciate that.

HOPE and staying positive are a central theme of your message. Can you explain why this attitude is so important when a diagnosis you may have seems extremely dire and frightening?

Negativity and despair will do nothing for you in your battle. You have to have a victorious mind set, not victim mentality. It’s been clinically proven that a positive attitude does more than just medicine alone. I let myself have down days. It is impossible not to, but just visit that place, don’t live there… when you are done wallowing in self-pity, get up, dust yourself off (figuratively speaking) and move on. No good comes of negativity. It is not always easy, but fighting something so scary is a lot easier to do when you have hope.

You have a beautiful daughter who was only a newborn when you were diagnosed. How have you discussed your illness with her and what advice can you give someone if they are a parent?

We have never hidden anything from her. It has always just been a part of our life. She knows I have limitations because of my one lung and for the most part is pretty cool about it. I’m very involved with her life at school and take her places to show her that I’m not a victim, and that I try my hardest, even with certain limitations. Handling a situation like this is different for every family, depending on the child, and what they are capable of. I guess you need to do what is right for you and your individual family. What works for us, doesn’t work for everyone. Some people are very private, and the thought of sharing their life with the world is mortifying, while others don’t mind and put it all out there. It is whatever is right for you.

How can we help YOU raise awareness?

Share my story, my blog, my video… tell people asbestos is not banned. Tell them to call their elected officials and ask for money to be appropriated for meso research and to say NO to the FACT Act. Those are just a few… Thank you so very much for helping, it means the world to me.
– Heather Von St. James

Your Thinker and the Trickle Down Effect

Published on March 21, 2014March 21, 2014 by hearingelmo2 Comments

Wednesday, March 19th

I had a “pep in my step”. I had a whistle on my lips. My heart was glad. I was walking my service dog and most of the snow was gone from the ground.

“What beautiful weather for a walk!” I thought to myself.

But then a squirrel scampered down off a tree trunk merely inches in front of my well-trained service dog’s nose. It all happened so fast.

The first jerk on the leash put my body in motion. You can’t fight the laws of science. I was going to be in motion until something stopped my motion since my brain went on instant vacay. Let me tell you I stuck the landing. Nearby Olympic judges all held up “10” placards. Cheers all around (or at least in my imagination).

I lay there on the pine-needle strewn ground for a minute trying to determine if anything was broken. The world was still spinning. I closed my eyes for a minute and choked back the nausea. Flipping to my back I felt a hound dog kiss on my face.

“Whew. Chloe is still here”, I thought.

I forced my brain to verify the leash was actually still in my hand. YUP! I opened my eyes and focused for a second. Chloe went into a down/stay on her own and rested her head on my shoulder. The weight of my ding-a-ling service dog’s head was a comfort.

I heard something! Another good sign. My cochlear implant was still attached to my head. I focused on the sound and looked up – Up – UP into the tree boughs above me and spotted that rascal squirrel.

Oh.

My.

Gosh.

He had the impudence to sit up there fussing – at US. I couldn’t help but laugh. He was ticked! I laughed all the way up until he skipped away… jerking the branch he was on and dumping snow on my face and chest from twenty feet up. My laughter stopped immediately. I was choking after all…

I sat up and brushed the snow off and started to giggle again. Chloe wagged her tail in delight. It seems she wasn’t going to get a “Denise sermon” after all. Within 10-15 seconds though I was overcome with a different emotion. I sat there crying. Not just silent tears – nooooooo. This was unladylike, deep sobs with intermittent hiccups!

I sat there bawling my eyes out for five or six minutes, comforted by a hound dog most certainly sorry her instincts caused another “Timber…” moment for me.

Yes. I could see the funny. But fast on the heels of the laughter and positive attitude came an emotion near the surface most days. Self-pity. Sorrow. I hate my life.

Is Happiness a Choice?

One of my favorite books is “Happiness is a Choice” by Minirth and Meier. The premise of the book is that especially for those of us living with depression, happiness is a choice. The book’s number one principle is: “Change the way you talk to yourself”.

I’m on board with that. Really!

I am!

“You can change some of the negative aspects of your thinking by challenging the irrational parts and replacing them with more reasonable thoughts” (Martin, 2010, para. 4). Whitbourne (2013) explained these, “inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1). I believe in the power of self-talk. I believe our “thinker” really can influence our behavior. My husband is a cognitive psychologist. He and I have a lot of discussions as I work on my own Ph.D. about the best ways to change behavior. He – and other professionals like him – believe that if you can simply change what your thinker is thinking, there will be a trickle down effect. It will influence and possibly change behaviors you wish to change. There is a lot of scholarly research and science to support this.

I believe this! I do! But I will be honest for a moment. There are times I want to just say…

SCREW SCIENCE

That’s right. Just in case you even needed MY – or ANYONE’s permission…

It is OK to be upset about the reality of your life.

Living with acquired disability sucks. Hearing loss sucks. Meniere’s disease sucks. How about you? Fill in the blank:

_____________________ SUCKS.

*Deep Cleansing Breath*

I’ve tried to explain to folks who ask, that living with a chronic condition or acquired disability is – on the best of days – HARD.

I still get the flu.

I have still lost people I love and miss them.

I have lost beloved pets.

I get headaches, body aches, and am growing older.

I get mad at my family sometimes.

I experience car problems.

I hate traffic.

I have unexpected bills.

I still have a period (hey! Jus’ layin’ it all out there! <BIG GRIN>)

All of these things happen to me just like they happen to you. Only folks with chronic illness or acquired disability have those things happen on top of what – for them, is the norm… living with challenges daily.

Yeah, yeah. I know!

~~I still get the flu~~ I can be thankful I have medicine to help and a hound dog to cuddle with. See? I can see the positive!

~~I have still lost people I love and miss them~~ I can be thankful I will see them again someday based on my personal faith beliefs and worldview.

~~I have lost beloved pets~~ I have other furry family members and that makes me happy.

~~I get headaches, body aches, and am growing older~~ Beats the alternative. Right?

~~I get mad at my family sometimes~~ But I have a family…

~~I experience car problems.~~ But I have a car and this time we could afford the “fix”.

~~I hate traffic.~~ I have a job to go to.

~~I have unexpected bills.~~ But I’m smart enough to figure out how to pay that bill or arrange payments.

~~I still have a period~~ Yeah. I got nuthin… (LOL)

So can my forced “change thinking” have a trickle down effect and influence my behavior, feelings, and perceptions? Yes.

And no.

Confused? I don’t mean to be the cause of a “What the heck you talkin’ about, Denise?” thoughts.

However, it is important – at least I think it is – to allow yourself to have moments of self-pity. Feel the sorrow. Rail at God. Write “My Life Can Suck” really big and pin it to a wall and throw darts at it. If it makes you feel better, do it. I think it is healthy to “own your feelings” about the reality of your life. It’s hard. You may feel alone. You may want to give up. It’s OK to feel that way.

But then? (Brace yourself…)

Change your thinker. Allow it to do what studies have shown actually works. The “Trickle Down Effect”. I’m here to tell you though that it isn’t a long-term fix. You may have to “adjust the knobs on your thinker” daily. Maybe on REEEEEALLY bad days – hourly!

Do you know what thoughts help me the most?

Keep on keeping on.

I can make a difference in the life of another.

Tomorrow is a new day.

Mean People Suck. (Sorry. That’s my favorite bumper sticker and I *had* to throw it in there).

Yup. They are platitudes. “Feel good self-talk”. But ya know something? It works for me because I also allow myself the freedom to sit in the pine-needles with snow covering my shoulders and bawl my eyes out.

So strive to improve your self-talk. But feel free to wail.

{{{{{{{{{CYBER HUG}}}}}}}}}}}} from me to you!

Denise Portis

©2014 Personal Hearing Loss Journal

Martin, B. (2010). Challenging Negative Self-Talk. Psych Central. Retrieved on March 21, 2014, from http://psychcentral.com/lib/challenging-negative-self-talk/0003196

Whitbourne, S. K. (2013). Make Your Self-Talk Work for You. Psychology Today. Retrieved on March 21, 2014, from http://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

Counseling. Only for the Weak and Needy?

Published on March 10, 2014 by hearingelmo5 Comments

I’m married to a psychologist. I’m 37 hours + dissertation away from my own Ph.D. in Psychology (I know, I know it is still a lot! But to count it down helps! 2016 seems like such a long ways away!). My daughter is getting her Master’s in Psychology. My son is working on his Bachelor’s in Cyber-criminology. Needless to say our family meals – the few we have since our kids are adults now – are very weird. Weird, as in we talk about strange things. “Psycho-babble”. We are psychology geeks. Or is that freaks?

For me, to seek counseling has zero stigma attached. But… some folks do think that seeing a counselor is something to be ashamed of and try to hide the fact they may be getting professional help.

Don’t misunderstand. I don’t think you should tell your life story to every single stranger you encounter who asks, “How are you, today?” But when is it OK to seek professional help and talk to someone about all the things you DO have trouble expressing to anyone else?

I Feel Like I’m not as Independent…

A friend of mine found out I was seeing a counselor. She knows me well enough that she can ask me nosy questions and I don’t even feel as if she is being – well, NOSY. With her permission, I’m copying the gist of the conversation here:

Her: “You are one of the most independent people I know! Why are you so open about seeing a counselor? Aren’t you afraid people will think you aren’t as strong as you let on? I think if I went to see one I wouldn’t be able to let anyone know!”

Me: “Well it doesn’t work that way. I need someone to listen and who will give me objective advice. If they were my bestie like you, they wouldn’t give it to me straight!”

Her: “Hey. I tell you like it is all the time!”

Me: “Giving me a ‘dose of reality’ is different than being objective from a trained, counselor’s point of view. How can something make me less strong when I walk out of there feeling ‘stronger’?”

Her: “I dunno. I thought you were ‘Ms. Independence’. It seems strange to hear YOU are going to see a licensed counselor!”

Me: “You are missing the point. I’m seeing a counselor so that I can continue to be independent about the right things, but am also learning to be dependent in a healthy way. Geesh this life is hard enough without trying to ‘go it alone’. We all need help from time to time!”

She remains unconvinced, but hey! I think she’s coming around.

So Should you see a Counselor?

So how DO you know if you should see a counselor?

Psychology Today has a great little “self test” that helps you determine if you should seek therapy. You can find it here: CLICK HERE

Another great little quiz to help you make this determination can be found here at Psych Central’s website: CLICK HERE

The Huffington Post put out a great article in February, “8 Signs You Should See a Therapist”. You can find that article here: CLICK HERE

Those 8 “signs” include:

1. Everything you feel is intense

2. You’ve suffered a trauma and you can’t seem to quit thinking about it

3. You have unexplained and recurrent headaches, stomach-aches or a rundown immune system

4. You’re using a substance to cope

5. You’re getting bad feedback at work

6. You feel disconnected from previously beloved activities

7. Your relationships are strained

8. Your friends have told you they’re concerned

People with disability or living with invisible, chronic illness can benefit from counseling. Whether you are struggling to cope, grieving “something lost”, feeling angry or depressed, or just feeling overwhelmed, seeking help can prove very beneficial. It doesn’t make you weak. If anything, it shows how proactive you are about your own mental and emotional health. Recognizing that “all parts” of who we are need to be strong is a sign you are being pretty darn good to yourself!

How do I find Help?

Where do I find help? My favorite “how to” article is several years old, but I still think it’s the best advice I’ve seen. You can check out the article by Dr. Aletta here: CLICK HERE

For me, I had to find someone that was “in network”. I can’t afford to pay for counseling other than a co-pay. Sometimes practices will have pro-rated charges based on your income. For most of us though, we have to go see who our insurance will pay for to help alleviate costs. Depending on your insurance, you can probably find a list of “in network” counselors, therapists, and psychologists. For me, finding someone who had similar faith practices was important. Doctrine wasn’t as important as finding someone who believes there is a God. So you may have to go to the web and search too, matching practices up with who your insurance says is “in network”. If you don’t have insurance, or insurance won’t cover counseling, there are still options. (The article I gave you *points up* gives some great tips).

Feel free to comment here or privately email me. I’m pretty open about my own “journey to a healthy mental/emotional, Denise”. If you live in an area where counselors are “few”, you may find assistance at area worship centers. If confidentiality is a MUST (meaning you don’t even want to be seen coming and going), a new trend includes cyber-counseling. A licensed and trained counselor sees you at a designated time through a web-cam, so it is still face-to-face (important for those of us that need to see a face to communicate well).

Denise Portis

Advocacy ≠ It’s All About Me

Published on February 17, 2014 by hearingelmo6 Comments

Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”.

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

“lock and load” (Ok. That’s is a bit much, yes?)

“gird up your loins” (Umm. Creepy much?)

“put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis

Illness Saved My Sex Life

Published on January 27, 2014January 27, 2014 by hearingelmo13 Comments

Rachel and husband on her wedding day... — Rachel and husband on her wedding day…

I cannot remember who found “who” first. Rachel Meeks and I have exchanged emails and virtual “high fives” for a couple of years now. She is the talented and witty author/owner of “Do I Look Sick?”. You can check out her blog here: http://doilooksick.com/ Rachel has a knack for telling things like it really is. Folks with invisible illness and disability have trouble articulating what it is like to live “this way”. Rachel doesn’t have that problem and welcomes dialogue and comments on her blog. Recently, SEX was discussed here at Hearing Elmo. Even folks without disability or invisible illness shy away from the topic. Not us. It is Rachel’s – and my own – hope, that by openly talking about this topic, people may discover they are not alone and that there are others who deal with the same issues. Hearing Elmo, welcomes Rachel as a guest author this week!

Just after I got engaged to my high school sweetheart, I was diagnosed with endometriosis. All chronic illness has an effect on sex, but endo especially so – it’s a chronic pain condition in which the lining of the uterus ends up outside the uterus, causing intense pain centered around the uterine area – AKA all your sexy bits are the parts of you that are “sick” and hurting. That’s not really something you want to tell someone who thought they were marrying a…to be frank, normal person. Sex isn’t everything in a relationship, but it is a lot – especially to men. I’m not saying that to be sexist or anything, I just mean that there’s scientific proof that men have a greater physical need for sex, and that their minds are more geared towards sex romantically speaking. The way that long talks and thoughtful gifts say “I love you” to a woman is the way that sex says “I love you” to a man.

That’s what I’ve come to know after almost four years of marriage. But when I was a 19 year old fiance, I had a very different idea of the role sex plays in a relationship. In my mind, sex was like, the second most important thing just under love. And I had grown up believing the stereotype that men enjoy sex more than women, and that it was mostly an act of giving. That’s a nice fluffy way of saying I didn’t know anything about it because I didn’t think I was supposed to. I didn’t know what I liked or didn’t like sexually, I wasn’t very familiar with my own anatomy, and sex was actually even embarrassing just to think about, much less talk about. So now, I wasn’t faced with talking about sex – no, it was worse. I was going to have to talk to the one person who I really desperately wanted to like me and only know the best things about me, and explain things I barely understood. I’d have to explain the gross stuff that makes up my period was all over my gross organs. I’d have to use the word “uterus.” I was embarrassed enough to die. Luckily, he really loves me and never had a thought of calling off the wedding – even with a foreboding sexual forecast and the possibility of fertility problems down the line.

“Coming out” to him about my condition was a pretty good indicator of how our sex life was going to be, even if I never had endo. I’ll be blunt – sex was awkward for us. We had passion and desire but we also had totally unrealistic expectations of TV sex that’s always perfect. We both really wanted to have that wordless, passionate sex that you see in movies. Without any feedback or communication, neither of us was getting a lot out of our sexual experiences. They were nice. They were just ok. They were….very odd. So we thought we must just be bad at it. It also didn’t help when it was extremely painful because of endo. We both felt like such losers. You never hear about this kind of thing. Couples get married and you just assume that because they’re in love, sex is smooth sailing. It’s actually really complicated, and I wish the world was less hush hush about it. At the very least, I wish things were open enough that we would have somehow known we weren’t the only ones.

After we became disillusioned about magical movie sex, we got bitter and mean. We wanted to have sex, but I was always hurting and we didn’t know how to talk about it so usually when we’d try, it would turn into a fight. What’s interesting is that when you get angry, you also get honest.

After our stormy stint of fighting over sex, we went through a dry spell. We lost the anger, but kept the honesty. I started talking to him more about endo and even bringing him to the OBGYN with me. We’ve always been best friends who could talk about anything – except sex. Once we started talking about endo, we broke down the last barrier between us. We became closer than ever. And we brought that talking to bed with us. We let each other know what feels good and what hurts. We give a heads up when we’re going to change positions or we want to try something new. We actually tell each other what we want and what we like. If I didn’t have endo and we didn’t have to go to the hospital and I didn’t need his help, I might never have opened up and talked with him like this. Now that he has a chance to fully understand my disease, he can help me with medical decisions too. But most importantly, we can both have a real sex life now – not only a fulfilling one physically, but also emotionally.

Endo sucks, and it sure makes sex a challenge. But I can also look at it as an opportunity for us to grow closer. When it feels like your illness is in the way of intimacy, try to see the way around it. It may just be better than your original plans.

Rachel Meeks

Do I Look Sick?

————

Denise Portis

Hearing Elmo

Post-traumatic Growth (Part 2)

Published on January 13, 2014 by hearingelmo4 Comments

Post-traumatic growth. If you missed part 1 of this series, click HERE for that if you wish. In the first post we looked at what can cause post-traumatic growth, and what changes might occur in our lives as a result of the growth.

This week, however, I want to address the WHY behind growth. Have you ever wondered why some people come out on the other side of trauma a much better person? Why do some people give up, while others thrive? Is it something within the person themselves, or is it the environment they are lucky (or unlucky) enough to be in post-trauma? Does personality style have something to do with it? What decisions did the person make to get them through the worst of it? What was the time table of those decisions? Is there a magic formula? (Would you like to participate in a survey? It is very short, confidential, and your “voice” will be used in research about post-traumatic growth! Click HERE and scroll to the bottom of the page for the link about the short survey)

These are all important questions. These important questions are difficult to answer, however. In all the years I’ve thought about these questions and other related “survival” issues, I believe little can be assumed and the variables are infinite. There are, however, a few key points that I think are valid. You may not agree with me and that is OK. After all, this is not a scientific analysis and I only have personal experience and the testimony of others to generate my list of probable reasons some people experience growth. So here we go! 🙂

Taking One Day at a Time

One thing I have noticed about people who experience growth, post-trauma, is that they do not start out with long-term plans. Especially in the beginning – you may be in survival mode. You go to bed each night with the sense of, “Whew. The day is over. I made it“. There is not any fanfare or celebration of the fact, it is simply what IS. You survived.

In that day-to-day survival you may have drawn on specific helps that for YOU, allowed you to make it through that day. It may be faith, a supportive person or persons, a mentor, a counselor, a cause or purpose… love. It may even be things that some people define as negative: anger, stubbornness, revenge, or even hate. By themselves one asks how can something so ugly be used to help you survive? These things may be inter-woven into your thoughts and feelings and played a part in your survival for that day. Positive or negative, it isn’t one specific, “magical” formula. I have met people from all walks of life with different supports in their life, some of whom have grown post-trauma and some who have given up.

For some, enough time has gone by that you may feel like you can begin to look and plan for further down life’s path. Just do not be surprised if something happens and you find yourself in survival mode again. It could be triggered by something that seems so irrelevant and inconspicuous. Why is this true?

I think it is because post-traumatic growth is a PROCESS not an outcome. Those who grow do so because they continue to “take one day at a time”. They recognize there will be setbacks. They recognize there isn’t a prize or even a finish line. They know and realize that life after trauma may include days in which you are only able to trudge through.

Supports

I have met a few people who insist that they made it through a traumatic experience and grew from it all on their own. They found the wherewithal inside themselves and pushed through the crisis. However, I believe that even those whose “claim to fame” is that they are completely independent miss the point. Someone, somewhere had an impact on who they are as a person to be the kind of survivor who could dig deep and push themselves. It may not be someone who stood right next to you while you began your “life after trauma”. It may be that it was a person or persons who impacted your life years ago.

For many, however, it is a current support system. You do not have to be married or in love. You don’t have to be a person of faith. You don’t have to have a BFF. You do not have to have a dog (grin). Sure… these things can be used as supports, but they aren’t necessary. I know this because I’ve met far to many people who have experienced post-traumatic growth who do not have these things. The key is that they reached out to something or someone.

The danger of experiencing the worst life has to offer is isolation. Not solitude – something we all need from time to time to grow our souls – but isolation is the enemy of those seeking to grow post-trauma. Some folks have tried to tell me that they isolated themselves to survive. It hurt to much to interact with others “after”. If you isolate yourself long-term you are not going to make it. I’m not trying to scare you. We are human beings and at our very core we need other people. When you isolate yourself, another cannot find you to help. Those YOU were meant to help are also out of reach. The way to avoid isolation is to reach out. Join a support group. Go see a counselor. Write. You have to let others know you need them.

“And in this curious state I had the realization, at the moment of seeing that stranger there, that I was a person like everybody else. That I was known by my actions and words, that my internal universe was unavailable for inspection by others. They didn’t know. They didn’t know, because I never told them.” Kim Stanley Robinson.

An important side note? If you reach out to someone who needed you immediately after a traumatic event – a life-altering illness or diagnosis, the death of a loved one, victimization, violence, catastrophic loss – don’t forget to continue to check in with them FOR THE REST OF THEIR LIVES. Remember. Post-traumatic growth is a process, not an outcome. They remember the anniversary of the death of their loved one. They remember the accident that changed their life forever. They still have nightmares. They still need you. Continue to be there for them. When something traumatic happens to you (when – not if), you will need people who walk along side of you until the end as well.

Finding a Purpose

No worries. I’m not going to spout off an over-used platitude about lemons and lemonade. When we experience something traumatic we become an expert – at times an unwilling one. No one understands you like YOU do. Some people who experience traumatic events, collaborate with others and see significant changes in laws, supports, or after-care programs. They have the passion to see it through and to demand change.

Others, however, may not experience growth in such a measurable way. Yet, they too make a difference. There is a person in my life who has advanced MS. She writes me about three times a year. Her letters are written in a huge font because her eyesight is so poor now. I believe it very likely takes her hours to write me one newsy email. For a long time she had no idea what those emails meant to me. And so I told her. She is a transparent, significant human being who just so happens to excel in encouragement. She has impacted my life. I tell her so. She doesn’t get out much and often isn’t healthy enough for visitors. But she can use her computer on a good day – and she reaches out. She chooses people she thinks she can encourage and writes them. She may have to nap the rest of the day just to recover. She has a purpose. She matters and what she does matters.

It can be big or small. It can be something related to what you went through yourself, or a path that simply has you helping others that may be hurting in a different way. Find something or someone to be involved with and do it with passion and a purpose. It is often that cause or purpose that sees you through those days you find yourself back in survival mode…

… because it is a process – not an outcome.

You, too – CAN

I tried to grow tomato plants one summer. After only 4-5 weeks, the plants began to die and I noticed a smutty, yucky, kind of growth on the leaves, stems, and fruit. Disgusted, I pulled them all up and soothed my hankerin’ for ‘maters by visiting the produce department and local farmer’s markets. The next summer I carefully tended to new “baby” plants and tried again. In less time, the fungus-like growth was back and I was mad – and hungry for tomatoes.

I had to empty out the large planters and scrub them down. I had to buy new top soil. I had to do – what I SHOULD HAVE DONE the first time ’round. By the early Fall, I finally had fresh tomatoes from my own backyard.

You may not be experiencing growth because you have isolated yourself. Perhaps you tried – too soon – to make long-term plans. Maybe you didn’t immerse yourself in a cause to fulfill that need we all have to have a PURPOSE. Maybe you aren’t growing because you need to transplant yourself.

Are you surrounding by negative people? Do people tell you that you CAN’T do that NOW? Sometimes well-meaning people promote fungus-like growth. They destroy our fruit. We need to set boundaries and show them we CAN. We need to find people who believe that we CAN.

I welcome your input and feedback.

Denise Portis