If you’ve followed Hearing Elmo for any time at all, you know we don’t shy away from tough subjects.
I want to hear from you
Sexuality and intimate relationships can be and are impacted by invisible (or visible) disability, chronic illness, or invisible illness. My heart’s desire is that through a post earmarked for the first week of September 2013, WE can explain what it is like to struggle successfully or unsuccessfully in our intimate relationships. I believe this information will even help OUR community as we learn that we are not alone.
How This Will Work
1. Email me your feelings or experiences about intimate relationships and love by August 30, 2013. Do not make this explicit. This should be for all audiences. Email to: denise.portis@gmail.com
Please put in the subject line of your email: Do You Think I’m Sexy?
DO NOT COMMENT ON THIS POST WITH YOUR SUBMISSION!!!!
2. Try to keep it at 300 words or less; although, I won’t cut you off if you are a sentence or two over.
3. You must be connected to the community. (Disability, Invisible or Visible Illness, Chronic Illness).
This may include:
A) 1st person experience
B) LOVING someone who lives this. You are the partner, significant other, or spouse of someone with disability, invisible or visible illness, or chronic illness.
C) You are the parent or caregiver of someone with special needs and as a result your intimate relationship is impacted.
4. No names. This is anonymous. Please do not use clearly identifying descriptors either. My promise to you in order to keep this anonymous is that when you send me your submission, it will be saved along with other comments in a WORD document. I will then permanently delete your email. Even I will not have a record of “who said what”.
5. Another promise – I will not change your wording, grammar, or spelling. I will not morph your words into something *I* think works better.
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!
On 7/23/12, Hearing Elmo welcomed Melissa Sisco, from Alabama as a first-time guest author. You can access that post HERE. Hearing Elmo warmly welcomes Melissa again with a TWO PART post about her own invisible illnesses. 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”.
The hardest things we encounter in life can sometimes be the ones you expect and assume will be easy. I am learning to realign and reign in my own expectations/assumptions. When you have struggled with a progressive illness for over six years, say one like Meniere’s Disease that causes hearing loss and loss of balance, you assume your family will support you the entire way. You assume that they will take the time to read the literature, the pamphlets from the doctors or at least even use Google or WebMD. You expect that they will get the hint as you slow down while walking, because your world has begun to buckle and spin. You assume that they will take it in stride when an episode of vertigo strikes and can only be remedied by lying down –for hours sometimes. You assume they will understand that an impromptu dunk in the water will harm your health in multiple ways because you have holes in your ear drums and have to wear ear plugs when you risk getting wet. You expect those closest to you to understand your new world, but the reality is that they don’t. Not at first. You actually have to teach them, or paint the picture if you will. They are not any more adept at struggling with accommodating my illness than I am. It really isn’t fair to expect them to know what was also foreign to me a decade ago. Experience can be the harshest yet greatest teacher.
Recently, a family member commented, “God, you really are deaf!” Apparently he had been speaking to my deaf ear for several minutes without my noticing, “testing” my “deafness.” I simply turned to him, so we were face to face (even ground for me), and said, “Yes, so if you want my attention, try my right ear or tap my arm or shoulder please.” All while smiling a really tight painful smile. Now what I really wanted to say was closer to a negative word, followed by an expletive, and ending with Sherlock. But I digress.
I admit I am still in the resentful stage, I resent that I should have to be the one to teach others about my own illness and its effects on my life. I never aspired to be a teacher; I haven’t the patience of those saintly souls. For reasons beyond me God has placed me squarely in a position where sometimes I have to teach, to save my own sanity. It’s just awfully annoying to teach family and friends who I expected to learn a little on their own in the last few years. My disease is nothing new anymore. I’ve learned a lot of my “new normal” on my own, (although I’ve been blessed to have great advice from those who’ve already invented this wheel –ahem Denise, Gayle, Shanna) but I do get downright angry when I have to teach someone something that should be obvious – at least in my opinion. I haven’t been wearing an absurdly expensive hearing aid in my left ear for 4 years just for kicks and grins. As more of my conversational frequency in my good ear wanes I have found that small talk is just no longer my cup of tea. I still avoid public situations in general. I have learned a distinct dislike of restaurants, malls, arenas and movie theaters. I am working on that, but I am a country girl at heart anyway. My country is just a bit quieter than it used to be, which is rather nice sometimes.
I have also found that there is finally a language I am really struggling to learn. It’s called American Sign Language. The only one I really need to know, and it makes Hebrew look like a piece of cake. (I would say Greek, but I can actually read that!) I’m quite certain that I appear as if I am under the influence of some sort of psychoactive drug when I’m trying to sign. The nuances of hand gestures completely elude me in a way that centuries-old grammatical rules never did. I can’t even profess to be able to understand it well, either. I get so focused on trying to comprehend one particular gesture/word I miss the next seven and am therefore totally lost. Like missing the pinnacle episode of your favorite TV show and trying to tune in to the next one and catch up – it just ain’t happennin’. I haven’t given up, but gosh is it hard. Bill is a great guy, but you can only make him repeat a phrase so many times before you start having weird animatronic/you-tube nightmares. (Thank the Lord, and Bill, for Lifeprint.)
I have recently also begun to despise the words disability and handicap with the exception of their necessary legal presence. I really just don’t see myself that way. I still do a number of things on my own; to include working, driving, doing basic household chores, etc. Although I despise it, I can grocery shop on my own, most of the time. I just can’t reach for anything on the top shelf, or on the bottom shelf, without relying on my cane or a sturdy wall or post. Sometimes it’s just easier asking for someone’s help. NOTE: Do not rely on shopping carts (that’s buggies for us southerners) for balancing because they have wheels. Really bad idea. Trust me.
I am able to be much more up front with people about my invisible “handicap.” I can flat out tell a stranger that I am deaf/hard of hearing, I need to see their face to understand them or I will ask them to type/write out something complex. Most of the time this helps, and it is only occasionally that I encounter special people who begin to mimic Dr. Seuss using a bullhorn. Unfortunately, rhyming and loudness are lost on me. And it really annoys my co-workers or whoever else happens to be with me at the time. Sometimes I wish my hearing aid had a neon flashing light that proclaims “Deaf lady coming, repeat, deaf lady coming,” simply so I can save my breath. Sometimes I am saved by the Grace of God in the form of my own eldest daughter. She missed out on my shyness gene and takes the world by storm. She is quite eloquent when I see her shout at the top of her little six year old lungs, “My Mommy is deaf! Don’t you get it?” All while sighing, knitting those eyebrows, putting her hand on her hip, and glaring at the perceived offender. (Yes we are working on the politeness and manners thing- but it is easier said than done.)
A lady, let’s call her an acquaintance, I run into sometimes at work, asked me, “What is your cane for? I notice that some days you have it and some days you don’t.” Another unexpected and unwanted teaching explanation. I replied to her that I have a balance disorder, some days I need it, and some days I don’t. Though you may not always see the cane it is usually nearby, just in case my power steering fails again without warning. She smiled at me with that look of “Bless your heart,” which forces me to fight the urge to strike her with said cane. I despise pity. I don’t want pity. I just want –a little bit— of understanding.
And I have to understand that not everyone else can see my illness, even if a person has known me for thirty plus years. One of my mandatory responsibilities now is to help others understand me as I learn myself. I have to constantly remind myself that, though my illness is invisible, dealing with it is truly a two way street. No one ever said it would be easy.
PART TWO: “It’s Not That Easy” will run Friday, July 19, 2013.
“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou
If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!
I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at denise.portis@gmail.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.
Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.
Not a Great Example?
While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!
“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”
I was stunned.
Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.
But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.
Ummm… How is this Relevant?
You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?
We have to respect the individuality of other people.
I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.
I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.
Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!
But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.
There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.
United we Stand, Divided we fall
So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?
Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.
What are some things that have left you feeling peeved when judged by your peers?
Hearing Elmo 