Yep, I’ve started a Facebook page, and I’d love it if you followed me there. It’s a very easy way to get in touch with me. All my post will be listed there and I do post little things there that I don’t post here, so jump on over there and Like my page.
I’m a doofus and can’t figure out how to get a picture from there to here. Duh.
So here’s a picture that used to be the header to my blog, because I just love pictures.
Some of the best teachers of mindfulness and ‘being in the moment’ are animals.
– Richard J. Brewer
I love you Daddy. December 23, 1932 – June 30, 2016
My dear readers, I wanted you all to understand my absence over the next week or so, unfortunately after a long illness my father died last night. During this immediate time of mourning I will not be posting.
I got my first cochlear implant (CI) in July of 2011, and my second in September of 2013. When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs). A friend of mine asked me a few questions about it recently. I’m here today to answer some of those questions.
What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing. Let me see if I can explain this in my own words. There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter. There is part that is on the inside that is the stimulator and the electrode array. Sound comes into the microphone and goes through the speech processor to the transmitter (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator). The stimulator is in my head, between the skin and the skull. When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves. For a better explanation please go here. (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)
Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease. My hearing loss happened fairly quickly. I was diagnosed bilateral in November of 2009. In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear. That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked. It took a little while, but I soon got my second CI.(September 2013) Why did I get cochlear implants? because that was the only way I would be able to “hear” anything.
How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site. “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”
Do you hear the same with a cochlear implant as a you do with normal hearing? – No. Some people can understand words and sounds immediately, other people can only hear clicks and whistles. It is a completely different way of hearing and your brain has to be retrained. When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium. A lot of Donald Duck and Mickey Mouse voices were around. Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part. When I hear something I’ve never heard before things can sound very odd. Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them. The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.
Do you now hear like everyone else? or is it odd? What is your hearing like now? – This is the big question isn’t it? What is my hearing like now? First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.
I often can’t hear when someone speaks behind me. If there is noise in the room I have a very hard time hearing. (the newer CI’s are better for this, even though I have a newer CI I still have a hard time) In groups it is very hard to keep up with what everyone is saying. I am much better at conversing one on one. I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me. Between the two of those I do pretty well, but put me in a crowded room, and I’m lost. Heck, put me in a room with more than one person and I can get pretty lost.
I think I might be able to hear better if I had more practice, I’m not sure. Most of the time I only talk with Stuart. I talk to my doctors. I talk with our roommate, but I have a very hard time understanding him. His voice is deep and I simply cannot understand most of what he says. It makes things difficult, and sad. But for the most part I don’t see anyone else. Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity. However, it’s also really hard to put myself out there in those situations because I get so lost and confused. It does make meeting new people even more challenging.
Unlike most people with cochlear implants my hearing fluctuates. Some people with Meniere’s who get CI’s end up still having fluctuating hearing. Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted. My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.
Let me tell you what an average day for me is like. I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound. Everything sounds a bit loud. Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change. It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud. I’m always telling Stuart to please be quieter. Sometimes my hearing will change throughout the day. I will often say, “I’m having a bad hearing day.” I’m thrilled when I can say I’m having a good hearing day.
When I take my CI’s off the world changes. Suddenly the only thing I can hear is my tinnitus. (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)
I don’t know sign language. I am working on learning some, but I haven’t been able to take a class. At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.
What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off because I got too close to something metal. I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it. It’s kind of funny, kind of annoying. Other times when I want to lie down the headpiece won’t stay on. This is annoying, especially when I’m sick. I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.
Does it hurt? – Well the surgery hurt, but it wasn’t so bad. It is actually an out-patient surgery. Does it hurt on a day-to-day basis? Not really. If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that. I have screws that are very close to the surface right behind my ears. One ear is worse than the other. Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin. Sometimes this hurts. Sometimes my processor and glasses will rub on them. My sun glass arms are thicker than my daily glasses and they will cause that area to hurt. If I can lie down on it, it hurts a bit. Other than that, no it doesn’t hurt. If I didn’t have the screw issue I really wouldn’t even notice I have them on.
Now I just have to share the funniest thing I’ve misheard due to my hearing loss– Once I asked Stuart what Jesus was other than seen as a prophet and son of God. The answer I heard was, “Jesus was Jimmy Buffett” I busted out laughing. “Whaaat? Jesus was Jimmy Buffett??” What Stuart actually said was, “Jesus was a Jewish Carpenter.” I still get the giggles when I think about Jesus being Jimmy Buffett!
Recently I’ve been feeling pretty sick. Having vertigo regularly and having migraines daily again is taking a toll on me.
The stress in my life has increased significantly and “chronic stress has a significant effect on the immune system that ultimately manifest an illness.” (Mohd. Razali Salleh 2008) I don’t know how many doctors have told me that I need to control my stress. Unfortunately, that is much easier said than done.
Stress comes in all shapes and sizes. We have major things that cause stress, like someone close to us dying, or being diagnosed with a chronic illness. We have little things that cause stress, like a traffic jam or being late for an appointment. We even have stress from good things in our life, like moving into a nicer home, or having a baby. Every moment of stress can cause havoc on our health. Chronic stress is caused more by the big things, the things that don’t just go away, but the little things can build up and be “the straw the broke the camels back”.
In mid April we moved from this a tiny little duplex that I felt very uncomfortable in to a larger house with a beautiful backyard. This relieved one huge bad stressor on me and created a new happy stressor, but a stressor none the less. It has been 2 months since we’ve been in this house and we still aren’t settled in, this causes me a lot of stress because I know if I was not sick, this would not be the case.
At the beginning of May we had a friend move in. Someone who is going to be helping us out and we are hopefully going to be helping him out. No matter how smoothly this move-in was, no matter how much we all love each other, no matter how good the situation will be, it has caused stress. Suddenly I have someone else in my home and I’m not used to that. I’m not used to people seeing me sick. I haven’t been around many people at all for the past few years and suddenly there is someone living with me. I’m not used to sharing my space with anyone other than Stuart. This has caused a huge amount of stress. It’s unintentional, I didn’t expect it, and I’m sure it will ease, but right now it’s there.
My father’s health is declining. He lives over 3 hours from me. I can’t just jump in the car and go see him. I can’t spend this precious time with him. I can’t help care for him. I can’t help my sister. About the only thing I can do is give my sister encouragement. I can text her and listen. That isn’t real help and It breaks my heart. The guilt is overwhelming, so is the stress. This is the first time since I stopped driving that is has caused me such anguish. I know even if I could drive I’m not well enough to care for someone who is ill, and I’m feeling guilty about that too. Guilt is a huge stressor.
Of course, the fact that I’ve been sicker is a major stressor too. A huge Catch-22 huh?
What can we do to reduce the effects of stress? Well there are a few things, many of which are hard to remember when you are in the throws of being sick. However, there are things I try to do, they include:
How do you handle stress? Any suggestions for me and others?
I admit when I’m under a lot of stress I have a hard time implementing my stress relieving techniques, but just sitting here listing them makes me realize that I have ways to help myself and it has given me the incentive to get busy and try more of them.
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-Henry Miller
(photo taken by me in my front yard. For me, paying attention to the little things makes the world seem much less overwhelming)
I’ve decided to do something a little different. Every Monday I’m going to try to share a mindfulness quote along with a photo, drawing or other creation of mine. I hope you enjoy. If you’d like to join me in posting on Mindfulness Mondays, I’ll be happy to link to your blog so others can view your Mindful Quote and feel inspired.
“Every day we are engaged in a miracle which we don’t even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child – our own two eyes. All is a miracle”
Picnic with Ants 