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Email: patrick@patricktullytherapy.com
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Reflections and Change

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2018 UPDATE: Another post from 2015 that remained unpublished until now!

As I no longer feel so like a patient and have more free time to think with clarity once again, I’ve really spent time reflecting on the past and thinking of the future.

I am more empowered and willing to help myself when I need help. That includes asking others for help in getting my needs met.

My energy has come back with certain levels primed for handling even more facing my true self. Being hard-of-hearing has been such a burden largely because I’ve wanted and hoped it would disappear. But despite the reality being that I will always deal with it, I feel more empowered.  I have persevered even when people said I couldn’t.  I was told by a well-respected professional when I was very little that I would never learn to speak.  Well, I certainly did!  I was lucky to have supportive parents that trusted their instincts and didn’t believe this person’s opinion, regardless of her “status.”

A message to myself:

“Accept me for all of me. For who I am truly, not the fantasy hoped for.  I am enough and offer far more than you realize. Partial hearing loss is just a tiny part of my being. It can inform and help others who struggle with their own challenges.  Thus, it empowers me to be helpful to both myself and others.”

Advocacy and becoming a Psychotherapist

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2018 UPDATE: This has been staying in my drafts since 2015 and it’s time to publish it!  The date will be listed as 2015.  The post was created back during the first days of my cochlear implant activation.  I’m considering creating another blog where I talk about my perspective being partially hard-of-hearing and also gay.  I would share a variety of things on that blog.  The purpose of the blog would be to remind readers how much more similar we are than different.
Hi everyone,
I have been lucky to have been receiving not only auditory retraining for my hybrid CI, but also tools to better advocate for myself.

I was just thinking that I should state to the caller on my cell phone voicemail to please slowly state their name, telephone number, and message as I am hard of hearing!

Now that makes me feel more in charge of my hearing loss!  Receiving auditory therapy has included advocation and so that has prompted my own ideas, so why not state this with my voicemail?

I’m tired of the fast-paced talkers leaving messages ;-).
As you may or may not know, I’m on the educational path to becoming a licensed psychotherapist.  My goal is to eventually work in private practice.
A few people have suggested that carving out a niche of clients who are hard-of-hearing who don’t fit into the deaf community and struggle with fitting into the hearing community with hearing loss would be a great fit for me.  This is my journey as well and thus I would be able to relate to others who share this experience.
By no means would I limit my practice to certain clients, but certainly being a therapist with this specialization would be gratifying and so important as there aren’t a lot of psychotherapists who can help in this way.  It would be amazing to be able to introduce myself at HLAA meetings and be an advocate in that way.  Plus, I could make suggestions during a session, if people are demonstrating or mentioning difficulty with a part of their hearing instrument or program to visit their audiologist.  — There are a lot of people who unfortunately avoid discussing issues with their audiologist.  The intentions are good – to not bother the audiologist, but that’s what the audiologist is there for, to help out and solve issues.  I have a wonderful audiologist at House Clinic that could definitely help many people.
What’s great about all this thinking is I’m feeling more empowered in my life as opposed to in the past.
Cheers,
Patrick

Music has more depth!

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I just made another discovery with the hybrid CI.  Music has an added depth to it that is surprisingly pleasant.  I say “surprisingly” because the new sounds have not all adapted yet and my brain still interprets many of them as very mechanical or harsh – but less so than in the beginning I believe.

However, when I’m listening to music, there’s a pleasant addition of tones, an added layer, that I never heard before.  The music comforting and this experience is so awesome!

Hearing Test Follow Up

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Last week I was tested for my hearing level with the hybrid.  A series of beeps (similar to a hearing test) were sent to the booth I was sitting in at each frequency at different levels of volume.  The softest level one can detect the beeps the better.  The louder the beeps have to be, the more likely you have a hearing loss (for a hearing loss test).  In my case, the softer the beeps, the better my hybrid CI and brain are doing in adjusting to the new frequencies being heard.

Well, it’s two months in and my results showed that I hear all frequencies at a normal level with the hybrid CI on!  Wow!  With hearing aids, that never would have been attainable.

This test indicates that my brain has access to all of the frequencies!!!  Whee!!!

Now the speech discrimination work continues and my brain continues to adjust.

I have continued to retain the residual hearing I had after surgery!  This is great news as the risk decreases with time.  I will be able to breathe better after six months to a year post-surgery regarding residual (existing) hearing as when that time passes, the surgeon feels most at ease about existing hearing stability.

Emotions!!!

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This week I will be having my next programming (formally called a MAP).  The brain needs these constantly in the beginning of receiving a hybrid and less frequently as time goes on.  But these reprogrammings go on for life, because the brain is adjusting to the signals it is being sent by the implant.  Whenever a MAP is needed, an implanted individual will often feel that things are less clear or in my case, there’s a feeling that a new programming is desperately needed!  I need the compression of sound to be less aggressive as it blocks out sound from music clips and I feel I’m capable of more clarity – which my AVT therapist said was what the next MAP could provide.

Both today and yesterday I’ve been feeling sad because I don’t know what’s going to happen and that’s scary.  The odds are in my favor, but there’s still a chance that I could lose existing hearing and have to be reprogrammed even more extensively.

There’s the chance that things won’t be better than before the surgery.

But everything we do comes with chances and I chose this surgery to hopefully enhance my life.  Those positive posts that I have been writing have been 100% real and exciting.  However, emotions can take over and one just has to let them happen and breathe.

Things having to do with the implant, such as the earmold that goes into the ear for the acoustic low frequency portion have been stressful to think about since it’s not always that comfortable and I’ve tried multiple domes (non-custom earmolds) that normally I’ve preferred to ear molds (custom ear pieces), because the domes are more flexible in the ear than “earmolds,” yet they’ve been disappointing.  This has to do with the fact that the manufacturer that makes the current version domes and receiver that the dome attaches to is using an older version of the product – still works 100% but it’s an older edition that isn’t as comfortable as the newer versions that other companies are using.

I want to fix this somehow, but I have to trust that it will come with time.  I’m sure it will be fine with time.  However, my “autopilot” is to try to figure it all out.  This isn’t always a bad quality, actually it’s a good strategy.  However, if the result is not a fix, I feel sad.  So, patience is needed and to trust that things will get better.

Anyway, I have spent a lot of energy trying to get the best fit, etc.  This is also a reason I’m glad I’ve taken time off from school, because I don’t want to be thinking too much about the device parts or be overwhelmed with a part that feels uncomfortable to me.

All this is further made overwhelming by the fact that I know I have this implant that could do anything.  So, there’s fear.  No wonder my emotions have been swinging back and forth!  I’m glad I did the surgery and took the chances and I look forward to reaping rewards as time goes on!

Thanks everyone!  Writing this has made me feel better 🙂

Hearing better!

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I definitely have started experiencing real life situations where I am picking up speech better and better!  This process definitely includes a lot of baby steps, but it’s all worth it!

I’m so lucky and blessed!  I picked up the phone today and placed it against my implanted ear and I could understand a full conversation.  Granted, it was with my mother and I am used to her voice, but I have had many with her where I don’t pick up every word.

It’s scary to use the phone with the hybrid as I’m so used to my left non-implanted ear being the one that is used during phone calls.  While I have gotten much more comfortable with the hybrid, the phone can be a frightening experience because I don’t know how well it will do.  But I will continue using the hybrid ear and practice!

The sessions of auditory retraining have demonstrated my progress as in the beginning we practiced with sentences where the context was known (eg. a topic was chosen and thus I would know what topic was being referred to in the sentence).  Well, we moved on to more complex sentences where the topic may not be so apparent and I’ve been nailing the sentences!

However, the context-based clues that still are a part of the exercises on a lessening basis, but still nonetheless a part of the program remind me of how when I have a group conversation, if I miss hearing the key concept, that makes it difficult for me to follow the conversation, especially when the context changes and I miss the “clue.”

That will always be a challenge and is a challenge for everyone who struggles with hearing.  But having greater awareness of this and reminders of when and why things are more difficult are sources of information for me so that I can reason why I didn’t get a conversation.  So it makes me feel empowered in a way!

Anyway, I’m very pleased to have been implanted and to be able to be going on this journey!

To be clear, I was implanted in one ear only as that is what is approved and since the risk for losing all hearing is so high, it’s the right thing to do at this point.

There may be a point where hearing preservation improves and there could be hybrid version 2.0.  If I continue retaining my residual hearing for a year, my surgeon said that a hybrid in the other ear could be considered.  I would consider it if the current hybrid continues the remarkable improvements and if it truly would be beneficial enough to risk the ear’s natural hearing.

The risk of losing the quite good low to beginning mid-frequencies in my unimplanted and so far, “better” ear would have to be worth it.  It’s better in it’s natural hearing ability while the hybrid is proving to be better with it’s identification of high frequency sounds.  The high frequency sounds are still getting sorted by my brain which is completely par for the course.  So, how well the brain does it will be a factor in my decision obviously.

So it’s good to wait a year and see what happens with everything and to make an informed decision later.

Cheers everyone!  I feel very happy!

Newspapers are annoying!

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The rustle of newspapers never used to be annoying to me even though I could still hear them.  However, I didn’t hear with quite the crispness I now hear as a result of access to the higher frequencies – and now the sound is so annoying! 😉

I remember at some point in school, I would rustle my school papers and not think they were creating an annoying sound.  However, they annoyed people in the classroom, but I always thought that was because some people were more sensitive to sound.

That’s funny to think back to!

Sorry to all those that I annoyed with shaking papers, etc.  I now understand your pain! 😉

Speech understanding improving!

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I decided to try out communication with just the implanted ear – turning off the hearing aid in the other ear – and compare that to how I did when I first had this device.  My understanding of my mother has definitely improved significantly from the first time I tried this weeks ago!  How exciting!

The other day I was in Starbucks and while awaiting my drink, the barista said something and this was in the waiting area portion of the cafe.  Well, usually I’m not focused on listening in that area while the drinks are being made and certainly it’s difficult to understand.  But I noticed that I understood what he said about ten seconds after he said it.  Before the implant, I wouldn’t have gotten any of the passive chatter.  So that was very nice and encouraging!

Things are Moving Forward!

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I continue to work on auditory training and get reprogrammed.  I feel optimistic about the process.  Patience is definitely key for something like this!  It’s interesting how marketing makes something like this seem instantaneous in results.  Well, I was informed from the beginning that there’s a lot of work involved and indeed there is.  But it is well worth the effort!!!

I’m glad I took time off to do this as I keep reading about people who aren’t able to have time off or don’t consider it (or rather can’t consider it) and they struggle with the adaptation.  To me this is completely understandable, because the training involved with this device takes up the entire day!  One needs to rest A LOT during the process and thus there needs to be ample time for rest to occur.

I feel blessed to have time to work with the device and really do all I can to allow it to work for me.

Gratitude

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I wish success for everyone and it really makes me happy when people are doing well. It brightens my day! Not every day is easy because we are human beings, so when people are having those great days, it is like sunshine. I’m not trying to sound corny at all. With the experience I’ve been going through, I feel like I appreciate the good days everyone has more than I did before. I didn’t always stop to smell the roses when that is so important to do. Thank you to all of you who continue to inspire, educate, and encourage me!  You fill me with gratitude.

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