May 2014 – Hearing Elmo

Pet Peeves

Published on May 31, 2014 by hearingelmo4 Comments

Hearing Elmo welcomes, Melissa Sisco, guest author from Alabama. One of the many things I love about Melissa’s writing is that she is very transparent and doesn’t “sugarcoat” things. The way I see it, a blog supported by writers who live with invisible illness or disability, must be very REAL as they write. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”. A big shout out to Melissa for writing!

Okay. So I’ve had Meniere’s Disease for over 7 years now. I’ve been bilateral for over 2 years. The reality is that my left ear is more or less a lovely decorative piece. I have a usable older (once top of the line) hearing aid that is being refashioned for use on my right ear. I could truly benefit the most from a nice bi-aural set, but insurance doesn’t cover that, and the set I would need would set me back a good 8 to 10 thousand dollars. I now make too much money to qualify for any government assistance, so that option is gone now. I don’t have that kind of money lying around, nor do I want to bury myself in credit card debt, so I would rather spend it on my daughters while enjoying some activities of natural hearing while I still have some left.

When I was first diagnosed at 27, the hearing loss thing felt like a death sentence. Now I see it’s just part of my new me. My world is more quiet, save for the tinnitus. I see more, I feel more, I taste more and yes, I even smell more. I’ve enriched my other senses out of necessity. And really that is not so bad. I’ve even accepted the definition of disability as it is necessary to protect me legally and medically. But I am no less ABLE. I just don’t hear as well. My mind is still sharp as a tack (most of the time). Hearing –not so much. I am okay with that. I can accept it; make peace with it. That is God’s Will after all. Everything happens for a purpose.

But, there is one pet peeve I’ve encountered repeatedly lately that really gets under my skin. You know, like poison ivy or something akin to that. Starts as a tiny pink slightly itchy dot. You tell yourself not to pay it any attention. But it itches. You scratch, it spreads, it gets worse. Finally you have to stop and confront it with calamine, Benadryl or even a visit to the doctor if it’s bad enough or you happen to be allergic. That pet peeve is people who have already written me off as Disabled. I need a, beg my pardon, flipping epi-pen for this one.

Nothing else infuriates me more right now than that attitude from others, whether they are strangers, co-workers (present or past), friends (present or past), or family (can’t change that). Being completely written off as “Oh, she’s done, stick a fork in her;” is absolutely the best way to watch steam come blowing out of my deaf and going-deaf ears. The word anger just doesn’t seem to really define how I truly feel when I am overlooked, uninvited, unfriended, or just plain ignored because, well I am (*gasp*) Disabled now. There are days you would think Disabled is synonymous with Dead. Well I am NOT.

I still eat food. In public. I still can be a bridesmaid (although I can’t wear heels – I will look tipsy way before anyone else). I still have a promising career because of this lovely new-fangled invention, they call it a chair. I still drive a car! For now anyway. I still type 85 wpm. I am still a mother to my daughters, a wife to my husband, a daughter, a friend, etc. to those who haven’t walked away. And a loyal one at that. I have had to make certain adjustments, like asking people to look me in the face when they are talking, or to wait until I can get my caption call phone working before we continue a good conversation, but these aren’t overboard requests. I’m not asking people to walk through lava or sit in on my inner ear perfusions with me. I reserve the special stuff only for my closest loved ones.

I was really, deeply hurt when I overheard (okay, read the transcript) of a conversation I wasn’t supposed to hear. (Lovely captioning apps that Apple offers.) I found out that several people I had worked with previously (and some I still have to work with –awkward) had nixed our friendship because they assumed my “Disability” meant my career was going nowhere. No career meant I was “no good” to them. Words really can’t accurately express how deeply hurt I was. I have always taken pride in doing what I can for those I work with. I repeat in my head that I can’t possibly know the trials that others may be going through personally and so I make it my mission to do what I can to make things easier where I can. Accidentally finding that transcript was one swift kick in the emotional gut. I still treat them as I did before, because I can’t change who I am. I will always help when I feel the need is there. But that pain and anger is just below the surface as well. I guess it’s more like a deep throbbing disappointment now. And it hurts to see people daily who think I’m “done for” lying to me; eyes, words, gestures and all.

I struggled long enough to convince myself I was still good enough for myself, even without hearing or good balance. It took me a while, but I got there. There are still some rough days, the ones I can’t get out of bed because of the vertigo, or a random vertigo drop attack that suddenly smacks me with a sidewalk; but I am making it. I just didn’t quite imagine my work place I once considered safe turning into a world of landmines. People waiting for me to drop work permanently because they want my job, or they want someone else in my job. (After all Disabled people don’t deserve real jobs. *sarcastic thoughts of “healthy” people*)

Losing friendships hasn’t gotten any easier either. Some people just get tired of trying I guess. And I don’t blame them. I had a rather extended pity party for myself for a while. Making new friendships is even harder. I am not obviously deaf/hard of hearing. I “cover” for it well. Most people have no idea I can’t hear them, that I am only lipreading and body gesture reading. I’ve yet to try to figure out the best time to break that to people. If you tell them right from the get go they avoid you like the plague. If you wait a while, you get the “I had no idea,” or “Oh, that’s why you said [whatever didn’t make sense the other day].” Neither response is more conducive to friendship than the other. My favorite response was, “Why don’t you just hang out with only Deaf people?” No comment. I walked away from that one, quickly.

I am still working on my ASL. It is slow and painful for me. I crave grammar, structure, (I used to love diagramming sentences) and ASL has little to none of that. I also have no one to practice with except my daughters (at 5 and 7 they are already better than me!). My husband is starting to try, if only because it annoys him that “his girls” can talk about anything right in front of him and he is completely clueless.

Melissa, "But I am no less ABLE. I just don’t hear as well." — Melissa, “But I am no less ABLE. I just don’t hear as well.”

I have recently picked up an old hobby again. My acoustic guitar. Can’t hear all the notes. But I can feel the vibrations. I actually play better now than I did when I could hear fully. How ironic is that?

If you would like to contact Melissa, reply here or contact me. I will forward your email to her! denise.portis@gmail.com

Beaver – Destructive or Discerning?

Published on May 16, 2014May 16, 2014 by hearingelmo2 Comments

We have beaver. Actually, we’ve had beaver for about 16 months now, however this summer it is really evident WE HAVE BEAVER.

Our townhouse community sits up at the top of a hill. It is a closed cul-de-sac community, so it is great that “through traffic” is not an issue here. A brand-new walking path is now within footsteps of my front door. It will eventually connect to other walking paths, but for now it is about 1.5 miles round trip. At the bottom of our “hill” the path takes us by both a busy road, and what was once a small creek. In the Spring, I use to get a kick out of “hearing” the water sounds, especially after heavy rains. Last Spring those water sounds disappeared. However, I spotted this:

… and then this:

The creek quickly turned into a pond. And this year? Well let’s just say there is a new ecosystem near my house.

I came across a huddled group of homeowners about 3 weeks ago, whispering and gesturing towards the pond with banks now within 60 feet of our back doors. I stopped to see what was going on, and because it was early enough in the morning with few traffic sounds, I could actually hear their whispers.

“Will the water level rise much more?”

“What do you think they are up to?”

“Do they bite?”

Now my first thought was, “FOLKS. Beaver do not understand human language and to my knowledge they don’t have bionic hearing like I do. Why the HECK are you whispering?”

I didn’t voice those thoughts. Instead I said, “Ummm” (I’m ever so eloquent…)

“Yeah, but have y’all been down to the pond area where the walking path is? Have y’all seen what has happened down there?”

Blank looks. I discovered they don’t comprehend SOUTHERN. I tried to speak a little more cultured…

“Yes, you should walk down there. There are 2 HUGE culverts about 8 feet in diameter. That water level will never get any higher unless those culverts become dammed up as well. If that happens, the city will just unplug them. After all, that road will flood before our homes will“.

Blank looks. See what a lack of exercise will do? Go walking folks, go walking. Check out what the beaver have done up close. Geesh. I think they were miffed I was talking in a normal tone of voice. After all… *sneaky whisper* … the beaver probably HEARD ME.

Beaver have made a comeback in Maryland. I pulled this from a neighboring county’s website:

“Beaver can be among the most beneficial of the county’s wildlife. They create favorable habitat for a variety of wildlife species including fish, birds, amphibians, reptiles, and mammals. This variety of wildlife is in turn valued for recreational, scientific, educational and aesthetic purposes. Beaver activity is also helpful in retaining storm water runoff and improves water quality by trapping sediment, nutrients, and pollutants. Beaver activity can also cause flooding of roads, trails, forest land. They also consume trees and shrubs. Their impacts often occur suddenly and dramatically.

These benefits and detriments often occur simultaneously at a single location. Because of the varying degrees of tolerance levels among people to beaver activity, there are bound to be disagreements on how best to “deal” with beaver conflicts.” (Howard County Parks and Recreation, 2014).

Living side-by-side with these amazing creatures is fairly simple. I’ve been thinking a lot about this family of beaver.

They migrated to this area near the bay bridge and did what came naturally to them. Not with destruction in mind… but cunning and incredibly discerning architects, this family of beaver have created a whole new ecosystem. We’ve always had tree frogs (although it took Chloe’s trainer to clue me in to what I was hearing each year). But now we have:

… bullfrogs. You should have seen Chloe’s head and ears the first time she heard THEM! These fellas stretch about two feet, nose to tip of hind legs. I know this, because I’m the crazy neighbor lady screeching to the neighborhood boys who have caught them and held them up to “Return them to the pond when you are done!” There are also numerous plants I have never seen before in this area when all we once had was a creek…

and the trees are flourishing…

I counted 4 different families of mallard duck one evening, with little ones thriving in this secluded and protected environment. Turtles are sunbathing on any log or rock that breaches the surface of the water. The fox are back (having been gone for at least two summers). There are enough deer in our area now to make my poor hound dogs hoarse for all the barking alerts they insist on for me.

I cannot help but be amazed. The beaver strengthened and created a home just right for them, and in the process created a place to thrive for other species. Folks? I want to be a beaver.

I didn’t ask for disabilities. I never once thought, “When I grow up… I want to be DEAF and have a significant BALANCE DISORDER”. However, in my own process of adapting and making my environment safe and liveable for ME (cochlear implant surgery, service dog from Fidos For Freedom, be-dazzled canes, no-slip shoes, discovering where all the elevators are on campus, practicing all I learned in vestibular rehab.), I have created a new ecosystem.

I want MY WORLD to intersect with the REAL WORLD and help folks recognize the importance of inclusion. I work to make sure that my new life, teaches and advocates in accepting differences. I want others to recognize abilities rather than disabilities. I want my invisible disabilities to be visible and “pond-like“. I want my life to inspire others to choose to live equally purposeful lives. In my own small way I do this by working with my campus disability office. I openly talk about being “differently-abled” in class. I “plug” what I know whenever I can to whomever will listen… cochlear implants and service dogs, depression and coping skills. I have discovered my environment changing. People are coming out of the woodwork… or umm… newly created POND, and sharing with me that they have a mental illness, invisible challenge or diagnosis such as fibromyalgia, chronic fatigue syndrome, or Lyme’s disease.

Yes. Having an attitude of gratitude and focus on education and advocacy, has me walking by concerned citizens from time to time, whispering about a beaver conspiracy. But just as I’ve learned that being transparent is contagious, these folks will eventually HEAR and go walking to discover other new ecosystems. At least… I hope they will.

Do you live with disability? Are you struggling with an invisible illness? Do you have a chronic condition that folks do not seem to understand, nor comprehend how it affects you? Hearing Elmo is not just a place to “hear”. My desire is that numerous authors, both named and anonymous, begin to disseminate the kind of information that changes our environments. In the end, the beaver aren’t the sole beneficiaries. We all benefit. Would you like to write for Hearing Elmo? Contact me at denise.portis@gmail.com and type “Hearing Elmo” in the subject line. Building dams is pretty fun. It is unexpected. It is worthwhile. We can all make a difference!

Denise Portis

Howard County Parks and Recreation. (2014). Beavers. Retrieved May 16, 2014, from http://howardcountymd.us/DisplayPrimary.aspx?id=2396

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