131 Days

It is now 131 days since my cochlear implant processor died. That is 3,144 hours, 4.30 months and almost 19 weeks without hearing. 

That is a lot of numbers. Math has never been my strongest point in education, but even I can say that this is a lot of numbers. These numbers really don't mean anything though; not when it comes down to the nitty gritty of every day life this past four months. 

I have always had a hearing problem. It has gotten worse over the years but I can honestly say that this is the worst period of hearing loss I have endured so far. The last time I was in this much despair, it was ten and a half years ago when I suddenly lost the rest of it after mowing the lawn. Up to that point, I had been wearing hearing aids, which were largely ineffective to some degree but it was all I had known. I did well with them. Getting a cochlear implant was not on my mind then. I was getting ready to go to the Rocky Mountains with Mike and our twin toddlers. I had never dreamed that I would lose the rest of my hearing, though I don't know why I didn't think of that because I had been losing my hearing steadily over the years. The hearing aid was working just fine for me then. 

I endured 10 months back then without hearing anything other than tinnitus and maybe some loud noise on occasion. I still wore my hearing aid, though it was ineffective at that point. I was a nervous mom of twin boys that were two and a half. 

It is now ten years later. My cochlear implant processor was getting old and Cochlear had sent a memo saying that it was outdated and they would no longer make the spare parts for it or even make it. We were in the process of ordering me a new processor, an updated version with all of its whistles and bells, when my processor finally died. It stopped working. Just. Like. That.

I didn't even have a back up pair. When I had my surgery, the audiologist then kept the back up pair even though it was mine. She just never gave it to me. I don't know why. I just never got a back up pair. 

I have been without hearing for that long. This may not seem like a long time to some people, but for me it is a lifetime of missing out on a lot of things.

I have missed out on hearing my sons' voices;
hearing their laughter;
hearing one of them recite a part in their Christmas program; 
hearing their church Christmas program;
on going to church;
listening to music especially my favorite Christmas songs;
listening for the phone;
talking on the phone;
missing out on conversations;
being able to hear my sons while they are talking to me about their day; 
listening to the birds singing;
listening to my husband's voice as we talk;
being able to carry on a conversation without missing anything or having to repeat something; 
understanding people;
being able to speak clearly and audibly;
being able to handle an emergency situation independently; 
feeling safe in the car as I am driving somewhere; 
and to be able to hear everything that I used to.

I went through a lot of changes this past four months. We just put our house up for sale as my husband transferred his job to another city in another state. My mom went in the hospital for a routine procedure and ended up spending two weeks in cardiac intensive care. That was a fun challenge trying to read the foreign doctors' lips and trying to keep up with all the medical issues that were going on. I couldn't call Mike whenever I felt like it because I wouldn't be able to hear. Texting can only go so far. 

I could get another processor anytime I wanted to, but the insurance company is making it impossible for me to get one. It is a covered benefit since it is a medical necessity (and a safety issue as well), but they want us to pay $10,000 upfront. Then they'll reimburse us ... if they do reimburse us. We don't have that kind of money. Even if we weren't in the middle of making a move, we don't have that kind of money. To make things even more interesting, one of Nick's processor is totally smashed. He doesn't have a back up pair either since his back up pair quit working awhile ago. 

I understand big business. They look at issues in black and white. Having to spend at least $10,000 for one processor is a lot of money, not to mention the mapping fee, the audiologist's fee and even the equipment fee. I understand all that. That is not my problem though. We pay for the insurance. Yes, Mike's employer pays for a lot of the costs too, but we pay for it. We pay with the expectation that it would make available certain things that we need to have done. This is one of them. 

I sincerely hope that I will not have to go another 131 days before I get to hear again. 

Music in My Head

I have a piano playing in my ear. Not outside of my ear. No. It is inside of my head. Some days, it is a lovely piano music that plays ever so gently with lovely notes. On other days, it is a buzzing saw rasping through my skull, making me clench my teeth and close my eyes. Still on some days, it is a bad rap song beating its crescendo constantly, and I find myself asking people if I am shouting because I feel like I need to shout to hear over the beats that are pounding in my head. I never know what I am going to get on any given day. It has even woken me up from a deep sound sleep because it’s so loud. Fortunately, that does not happen very often.

Before you write me off as some nutso, who is on her way to the looney bin, realize that I have tinnitus. It is described as: A sound in one ear or both ears, such as buzzing, ringing, or whistling, occurring without an external stimulus and usually caused by a specific condition, such as an ear infection, the use of certain drugs, a blocked auditory tube or canal, or a head injury.

I don’t have a head injury. I don’t take drugs nor do I have an ear infection. The cause of tinnitus is completely unknown. While I never had it while growing up, I first experienced it after giving birth to my twin sons. For most of their first day on earth, I could barely hear anything since the buzzing in my ear was so loud. It did go away.

It came back again sporadically through a couple of years and it would always go away. Then one day, it didn’t. That was also the day I lost the rest of my hearing.

I am sitting here right now, listening to this mixture of a roar and a buzz saw drilling a hole through my left side of my head. It isn’t as bad as it could be as I get some organ notes filtering in there somewhere. Right now, I have this beautiful, melancholy note playing its scale ... it’s so gorgeous. This might come as a surprise, but sometimes, I actually get beautiful music in my ear. I am afraid though that I won’t be able to replicate it on a piano as I am not musical at all. It is very loud as well. It takes up a lot of my waking thoughts. It makes it hard for me to concentrate on lip reading since it takes up so much energy and sound in my head, that I have a hard time focusing on people’s lips. Sometimes, it is much easier to sit at home and bear the sounds in silence.

No one else hears this besides me. It is all in my head. When I say that, people look at me funny and maybe scoots over an inch further away from me. After all, who wants to sit next to that lady who says she can hear musical notes in her head?

 (And she’s deaf. Shhhh.) 

There is no cure. There are suggestions. Take Vitamin B12 and that will work. Done. Take Manganese ... that did help but now I can’t find it anywhere to buy more of. I don’t have a family doctor of this moment to get a scrip for it. Listen to music and that will help tone the tinnitus down. Sure. I’ll do that ... as soon as my cochlear implant processor is fixed or I get a new one.

There is no cure for this. It is an anomaly, that is what it is. It is irregular. It is not normal. It is something outside of normal boundary and scientists are not really that interested in learning more about this, which I think is a shame since more and more people I know talk about having this.

It does interfere with normal hearing and even with a hearing aid. My husband suffers from it and he isn't deaf. He doesn't know how he got it and it does interfere with his every day living. My mom has it but since she has a cochlear implant, she is able to ignore it during the day. It isn't too bad at night when she takes off her processor.

Some days though, I really do get this lovely note going and it is a reminder that even though I can't hear, I can still have music even if no one else hears it.