...and we come to a fork in the road, and we choose a new direction
Several of you have asked me about my blog lately. I know I threatened to start writing again and I just haven't felt motivated to. But I have decided that I will, at least for the time being. I decided this AFTER going back and rereading old posts about previous experiences, especially with my left ear.
I say this often, and I'm saying it again; I have forgotten more than I will ever remember.
You would think that big things would stick with you, but it's amazing that sometimes they don't.
After last week's relatively successful activation, I went back to reread my documentation on this site from my 2008 activation just so that I could compare the two.
I was astonished. I recounted an almost identical experience with this left ear back in 2008. I actually heard sound at the initial stimulation of the device, and I was pleased with it.
It is amazing how the mind not only forgets but changes perception over time. When I look back at that left ear device that I had implanted in 2008 and explanted in 2010, all I remember is the failure that it seemed to be. My overall impression of it was that it was a catastrophic failure. I heard nothing, it made my balance horrible, I never adjusted to it, it was painful and uncomfortable and unusable, and in the end, it came out. Dr. Haynes told me in 2010 that he was leaving the electrode in "in case you want any future technology" and I inwardly rolled my eyes and thought "I've been there, done it, not doing it again".
I think this must be something like childbirth, where you form a perception of the overall experience, and that's what stays with you. Some of the details stay, some go, and you are left with just the label: "joyful" or "successful" or "horrendous" or "frightening". My overall impression of my left ear has always been "failure".
This ear will have to be different. I had a realization a few weeks back that I will have to choose my attitude in this journey and I will have to do my best. I am 48 years old. I had my right implant for 12 years and almost six months to the day. It was a gift given to me on November 5, 2007. It worked perfectly when it was removed. I suffered from a skin breakdown over the implant that would not heal. It was removed on May 6th, 2020. The current plan is that in a few months, hopefully by the end of the year, it will be replaced. I am hopeful that I will get back the hearing that I had before. I don't expect it to be identical to what I had; I will be thankful if it will help me regain some of my speech comprehension.
One of my grandmothers lived to be 99. One lived to be 94. My mother is young yet, in her 60s, and in good health. All things being equal, I could possibly live a long time. There is only so much space on the human head and the implant electrode is only so long. There is a possibility, although it's small, that someday down the line we might run out of prime real estate on my head for another right implant, if I were to experience skin breakdowns again. Dr. Haynes offered by way of explanation that it's something that's seen more in women than men, and more with age and time, that the skin just thins and stretches and is prone to occasionally break away. I'm pretty sure that the combination of reading glasses and the processor on that side led to an even earlier than normal breakdown, and moving it to another location will help with that traffic issue, but in my mind there are no guarantees anymore.
I need to learn how to do this left side, regardless of past experiences and perceptions. I know that it will take time. I do not expect it to ever be amazing. I hope for tolerable and usable. I hope for comprehension. I choose to make it work for me this time. I choose for this implant to be successful. I will adjust my definition of success accordingly.
In rereading my past experiences this week, I let myself become discouraged. As I said, I was surprised to reread and discover that my initial impression on that side had actually been positive, yet ten years later I considered it a failure. I continued to read and remembered that testing over time had not produced good results and it had actually seemed to hinder the performance of my superstar better ear. Of course that immediately created doubt; will this time be different? Am I putting myself through this for nothing? And I took a few days to think it through. I mourned really hard the loss of the beautiful experience that I had in my right ear. I stopped to appreciate the benefits that it gave me; it taught me what some sounds were, sounds that I wouldn't have known otherwise, and it gave me a standard to train the new ear with. It gave me the knowledge of what could be, and the encouragement to push to have it again. It gave me independence. I have felt a lot of fear about doing things on my own without hearing. It's really scary. For future reference when I look back on this post in ten years, we are in the middle of a global pandemic, and masks are everywhere. The rules are changing every day and so are the actions, and communication is needed. It's a tough time to not hear well. Having said that, it's not the lack of hearing that holds me back but the lack of action. I can do all the things I did before. I just need to learn to do them again in a different way.
I have the benefit of having an audiologist that I personally think may be one of the best in the world. I have the newest internal device on my left side. I recognize a lot of sounds with my new ear already. I can hear birds and dogs and footsteps on the stairs and I can hear the sound of voices, although they sound very robotic and also like they are under water. I have pretty much zero comprehension without lipreading but it has literally only been one week. I was sent home with three programs to work with, each increasing in loudness. I am on the third program. My brain is working. It's doing its job. This is not a situation without hope. I was a cochlear implant mentor for years and I know very well that there are no textbook routes to success, and that there are varying degrees of success. People and brains and devices and motivation and ATTITUDE are all factors. I'm reminded that some people only ever hear environmental sounds, and if that were to end up being the case, I am determined that I'll learn to live with that on that side.
A counselor once told me that your hard is still hard, even if it's not the same as someone else's hard. I realize this and I acknowledge it and I allow myself to feel the hard things and mourn the losses. You can't move forward until you have acknowledged the past. I am also of the belief, however, that you pick yourself up and you go on. I was not expecting this twist in my hearing journey. I was very happy with my one ear for ten years. I was content and I saw no need to change anything about it. I haven't written a post on this blog in years because I was living my "best hearing life". Apparently, the journey to hearing with two ears is back on, and it promises adventure.
I'll update more, and I'll probably also post pictures in the upcoming days for reference. I think I've made it so that you can subscribe by email; if you try it and it doesn't work let me know :)