Life Inspires Me

Posts Tagged ‘hearing’

I am hearing again… sort of. Let me explain- I heard the beeps at activation. I am still deaf when I wake up and go to bed but now I control my deafness and can wear my CI when I want. I don’t have hearing like I did with the CI but I am open to this adjustment and teaching myself to hear again (more like a different way.) It’s going to be a long slow process…

“Patience Jess, it’s not about the destination but the experiences along the way”

Reflecting back on the days that lead up to activation-

I was a wreck. I mean excited but scared…. I mean the hard part of doing surgery was over but …“What if this doesn’t work? Maybe this is just how it is and I’m supposed to be deaf? I know if it doesn’t we could always try for the ABI (Auditory Brainstem Implant), but would that work?”…This is all I could think of.

Activation Day-

When I heard the beeps (this is how we were testing the level of loudness) I because a giddy mess! “I heard a beep!!” when Dr Z switched it to picking up surrounding sounds … I heard my parents say I love you. If my tear ducts worked, I would have filled the room up with tears. It was bittersweet. To be in 6months of silence and the thought of hearing my parents becoming a bleak hope, I could feel my emotions just pour over. It was truly a magical moment.

Currently-

Everyday is a struggle yet milestones are made. I kept my wristband from surgery in April and proudly posted it on my bedroom mirror with quotes that inspire me… as a reminder this is how far I’ve come this year and to keep my eye on my goals in life. I am keeping a daily sound journal to mark small achievements I have made and new discoveries with the CI.

My medical journey is far from over…

• I am still going to University of Michigan often for tune-ups with the CI. I never want to take it off… maybe trying to catch up for lost time. But any sound is good with teaching myself to hear in this new form.

• More tumors to monitor and more surgeries to come… hopefully no surgeries for a few months… my body needs time to recover a bit more from this year. My body scans for monitoring and looking for new tumors with the MRI’s is coming up… keep you all posted.

• My balance is still really off (from NF2 in general it is.) I am looking into and trying new forms of therapy and hopefully I can rehab this and see some improvements in the next year. (Until then my friends/and family have gotten used to me clinging to them all to steady my balance.)

Life goes on with all of this… a never ending journey. Keep you all posted on what comes next!

Peace, Love, and Rock on!

Jess

Dear Friends/Family-

I sent this to everyone in my address book awhile back because… someone may be able to help and give me guidance in making this a reality. I am sharing this with all of you because I want to show that even though people face hard things in life… it is crucial to never lose that passion to keep going.
I have been on one huge heartbreaking, earth shattering, emotional roller coaster. I gave up my hearing to save my life. With that I have in a way missed out on a lot of things but have gained so much more. I miss the sound of my dog wanting to go out in the morning as I wake up, my dad playing guitar, my mom saying “I love you.”, calling my siblings just to talk about silly things that happened… I miss music.

In the big picture, I’m alive!! And who can say they have been able to see the world while standing in another persons shoes… ok the shoes are still mine. This is a learning experience. Life to me is all about learning and experiencing. My dad always taught me that 2 things in life are free… Advice and knowledge… Being able to be born hearing and then give up all sounds- and getting to see and experience the world as a deaf woman, is incredible to me. Everyday is something new, I love it. Plus I learned a new language out of this (I can talk with my mouth full and still sign.). I have met so many amazing people and built a lot of wonderful relationships (All of you find inspiration in my journey but I find courage to preserve in you! Thank you!)\

Doing a follow up interview, I was asked, what my plans with my life are now (the cochlear implant activation was that week.). Since the beginning of this year my life/plans/everything had been altered. In response to this question, I said… (Actually I don’t remember what I said because I drew a blank and said the first thing that came to mind. the shortened version of this…) Ok after much thinking and collecting all my thoughts from journals from the past months, here is how I am going to lay it out…

Career Goals-
I want to be a motivational speaker, a patient advocate, a face for NF, a role model and a voice for those whose words aren’t heard. I stumbled upon a list of 10 of the most giving people in the world…I want to be #1 on the list of most giving people (Watch out Oprah!! just kidding!)

Side note-
(When I go out for dinner, I wrap part of my meal and give to someone on the street- I just find joy in that. like its a small thing I can do to help someone…. or I will simply buy someone a cup of coffee or even a bagel. ok maybe I am a bit of a softy/ push over but it makes me happy giving back, even if it is a small thing. I may not be able to change the world but I will make on heck of a dent trying.

When I have finished recovering I want to get back to volunteering- anything. I just want to donate my time to helping others.) That is the purpose of my blogs but I had this thought for a reality show, my idea was a reality show based around my medical odyssey (the basis is inspiring people to see the beauty in life and not take things for granted.). I want to be help others reach there dreams. (Like mine was finally meeting Matt Nathanson before I gave up my hearing). Whether it would be taking a kid, who is undergoing medical treatment to a baseball game, or even simply going and donating time and visiting someone who are in and out of the hospital and have no visitors. -I want to change that. Go in and spend time and bring a bit of a bit of happiness to them. (I think by taking out the tumors, they switched my brain into overdrive. like I am always super happy… more than usual.). The basis of my idea is to get away from that big over the top stuff and inspire people to never give up and see the beauty in the world. Maybe sounds a bit free spirited but people focus too much on petty stuff when they should take a step back and find the beauty in life.

Social/ Personal Goals-
I want to live in Chicago. I want to get a place in Wicker Park area. I love being in the city and I will do whatever it takes to make it happen. It’s close to my family and my hospital for treatment but far enough away to spread my wings. I want to focus more on my art. This has been something I have got away from this year (due to other events happening in my life). I want to finish my book (I am writing a book on my medical odyssey; even if it’s for nothing more than my family and close friends. There is so much I have experienced in my short life that I need to release it all and share with others.)

Add on- I want to complete my books for my sister and brother in-laws baby… based around conversations I might have with them and knowledge I would hope to instill in them.  The baby is due a week before my birthday in June and this will be this first grandchild in our immediate family… making it even more special to me. I have no idea how this child will take to me… I just hope I can hear them cry and laugh and be there to watch them grow. I get super teary eyed about this because kids are awesome and my sister will be a great mom. She is an awesome big sister and married to a great guy. I come from a very loving amazing family and that child will definitely be surrounded with love.

There you have it- my goals in life, my dreams if you will. Keep smiling and stay beautiful!

Peace, love, and rock on!!
Jessica Stone