It's been awhile since I've ugly-cried.
In the last few weeks, I've whimpered here and there thinking about my approaching one year anniversary with the CI. I'm still not understanding the world. When I think like this, without warning a few tears might slide down my cheeks. But when I find myself questioning why my CI isn't helping me more, I shake it off. I have to work, be a mom, and just do what I have to do.
I try to encourage others to embrace their truths, and when I start my own pity party, I try to remind myself I'm okay. It's going to get better, right?
I tell myself it has to. I tell myself I don't have it that bad.
I tell myself I have the most beautiful, wonderful children and a loving and supportive husband. It's not that bad, I tell myself. I wouldn't want to seem ungrateful.
But tonight I'm angry. Why isn't the hearing happening for me?
Perhaps I haven't been that honest all along. Perhaps instead of escaping into my blog, or giving speeches, or any of those achievements that made me proud- so very proud- maybe I should have spent more time this last year practicing hearing, advocating with my audiologist, really trying to wrap my brain around cochlear implant technology and the options available to make life easier.
Perhaps my "success" in other areas briefly distracted me from lack of progress when it came to my hearing.
Perhaps I've been seeking self-acceptance through others than myself, because honestly, every word of encouragement, every "LIKE", every Facebook message-- they can make a difference in getting me through a day without breaking down in sobs. Maybe I depend more on others than myself to get me through.
Tonight I stood in the midst of a business mixer, numerous voices surrounding me. But it's not voices. It's just noise. Sharp, sometimes painful, chaotic noise. I turn my volume up, I turn my range down, I change programs... And NOTHING WORKS.
And so I left the event. I got in my car, and I cried. I cried really hard. Blurry-eyed, I stopped the car and started writing. Because through my ramblings, perhaps there's some clarity.
God, HELP ME TO HEAR. I want to understand. PLEASE.
I finish this post in a convenience store parking lot, wiping away my tears, and continuing on. Another ugly-cry behind me, I tell myself I must continue on.
In the last few weeks, I've whimpered here and there thinking about my approaching one year anniversary with the CI. I'm still not understanding the world. When I think like this, without warning a few tears might slide down my cheeks. But when I find myself questioning why my CI isn't helping me more, I shake it off. I have to work, be a mom, and just do what I have to do.
I try to encourage others to embrace their truths, and when I start my own pity party, I try to remind myself I'm okay. It's going to get better, right?
I tell myself it has to. I tell myself I don't have it that bad.
I tell myself I have the most beautiful, wonderful children and a loving and supportive husband. It's not that bad, I tell myself. I wouldn't want to seem ungrateful.
But tonight I'm angry. Why isn't the hearing happening for me?
Perhaps I haven't been that honest all along. Perhaps instead of escaping into my blog, or giving speeches, or any of those achievements that made me proud- so very proud- maybe I should have spent more time this last year practicing hearing, advocating with my audiologist, really trying to wrap my brain around cochlear implant technology and the options available to make life easier.
Perhaps my "success" in other areas briefly distracted me from lack of progress when it came to my hearing.
Perhaps I've been seeking self-acceptance through others than myself, because honestly, every word of encouragement, every "LIKE", every Facebook message-- they can make a difference in getting me through a day without breaking down in sobs. Maybe I depend more on others than myself to get me through.
Tonight I stood in the midst of a business mixer, numerous voices surrounding me. But it's not voices. It's just noise. Sharp, sometimes painful, chaotic noise. I turn my volume up, I turn my range down, I change programs... And NOTHING WORKS.
And so I left the event. I got in my car, and I cried. I cried really hard. Blurry-eyed, I stopped the car and started writing. Because through my ramblings, perhaps there's some clarity.
God, HELP ME TO HEAR. I want to understand. PLEASE.
I finish this post in a convenience store parking lot, wiping away my tears, and continuing on. Another ugly-cry behind me, I tell myself I must continue on.
Pam, my heart is with you tonight. Give yourself permission to cry those tears and know that tomorrow is another day, another step toward clarity.
ReplyDeletebig hug and a box of tissues
I cried when I first read this... but in a good way. And I was also OUT of tissues!
DeleteAnyway, I'm seeing now that maybe I needed a big ugly-cry to move forward and to make the changes I need to hear and understand better. I'll work through this. Thank you for writing to me!
I'm sorry. I know how hard it can be, too. Sending best wishes to you.
ReplyDeleteThank you for writing. Now that ugly-cry is behind me, I'm trying to focus on what I have achieved as opposed to what I haven't. That mindset is challenging during moments of frustration, but I try to keep in mind I've never been one to have success quickly handed over to me. I work hard. I take the time, and I prepare accordingly. I know I have to continue to work hard on this journey, but I'll get there. Thanks again for your kind words. They mean a lot to me.
DeletePam,
ReplyDeleteIts been a while since we've talked. I want you to know that I understand (in part) how you are feeling. For the last 6 months I have had my wife in the hospital and then setback after setback with my premature son. There is nothing like feeling helpless and IT NOT GETTING BETTER. You know what I have realized, sometimes it is just OK that it just IS. Sometimes you have to cry and scream and curse and hate everything and be ok with that. I've realized lately that its not all fairytale endings...you will never hear perfectly....my son will never have the health of a "normal" baby. But Pam we don't have to let those things dictate and control our lives. Say them out loud...take away the fear of those things and thus take away the power of those things to control our lives because we are missing the good things when we obsess on the bad. You have always been a strong girl with a lot going for you. You are beautiful, funny, nice, and a wonderful singer. You have adorable kids and a great family. That is worlds better then being alone and hearing every moment of it. Reach out anytime.
John Vermitsky
Wow John. Thank you for reaching out to me.
DeleteI've been following your journey and with each post I read about your son, I am blown away by the strength you and your wife have for your boys. As an observer via Facebook-world, it has been incredibly moving for me to be part of YOUR journey. Each time I'm made aware of what you are going through, I pause. I reflect. I pray. I hope your feelings of hopelessness are not as strong as they might have been in earlier months. I know I am one of many who is rooting for you all.
And you're right: though challenging, this last year has made me all the more aware of the blessings in my life. Every person who reaches out to me, who offers a word of encouragement-- they are people now forever embedded in my heart and in my prayers. Consider yourself one of those people, John.
Sending virtual hugs. I've totally been there, but I am sorry you're having such a hard time. I truly believe eventually it will "click" and things will improve. But gosh, it sucks you have to deal with this.
ReplyDeleteI am not sure what brand of implant you use, but have you tried requesting having a company rep come out to your mapping? I have done this before when I am having issues. My audiologist wonderful and insanely knowledgeable, but sometimes the reps just have more experience and are able to find the one right thing to change. If you haven't already done so, I would definitely give it a try.
Thank you for your concern and kind words.
DeleteMy implant is made by Cochlear. Back in July, my audiologist brought in a field specialist from the company, and that was BY FAR the best mapping appointment I've had yet. I was thrilled to received an email from my audiologist that the same field specialist is reviewing my files before my next mapping appointment.
So excellent advice! Thank you. I'll be sure to let you know if things start "clicking" soon.
I am reading your blog for the first time today. I have a daughter who has received a Cochlear implant around 6 months ago, she is 1.5 years now. I came to your blog in my quest to understand more about what she might be experiencing through her implants. I thought this understanding will help me see the world through her eyes while if I do, will help me be there when she needs me the most.
ReplyDeleteIts very natural for you to feel frustrated and helpless. And accepting reality, even if it hurts, is the first step to get better. I therefore think you did just the right thing in spelling out how you feel.I really hope it gave you the clarity to garner more courage and start afresh. All the best. I am sure you use this set back to tell another valuable story to all the followers of the blog that how you have overcome yet another hurdle on your way to clear hearing.
Thank you for your encouraging words. I hope your daughter has had a positive CI journey so far! I would love to hear her story.
DeleteI wrote this in a previous post and it seems relevant here: "My journey does not seem to be a typical one, and I'm wary of becoming a CI spokesperson. I worry my comments will evoke skepticism, avoidance or fear in someone who could really triumph with a cochlear implant. I also don't want to be labeled the Judas of the CI world by somehow implying, despite others' tales of life-changing miracles, that the surgery isn't all it's cracked up to be. Still, I'm committed to the truth, and this happens to be mine."
Did your daughter have any hearing prior to the surgeries? From talking with other CI recipients, it seems there is a difference going from no sound to sound; I think recipients see better results in this situation. In my case, I went from one version of sound to another. My brain is tasked with taking 31 years of "noise knowledge" and transferring it to CI hearing. This is much more challenging than I anticipated. I have setbacks, but you're right that some days I just need to get through a painful period to be able to start fresh. Today, I still have faith that my CI will give me clear hearing. It's just taking time.
I'm sure your daughter will do very well, and I am wishing her (and you) much luck and happiness!
I am happy to know that 'you still have the faith'.
ReplyDeleteThank you for your good wishes for my daughter. She never heard prior to her surgery. However, now is is picking up well. Its been 6 months since the surgery and she is has show steady improvement. She now responds to name call and is trying to mimic what we say. So we are happy with progress now.
I also want to say that you are doing a wonderful thing by sharing your story with others. Its invaluable in many ways, you should know.
Thank you and wish you the best.
I'm so sorry I didn't respond to you sooner. I'm so happy your daughter is doing well and hope progress continues for her. Thank you for your kind words. It's indeed a powerful experience sharing my truth with others; I am grateful.
DeleteOh man, I was born deaf, grew up oral and mainstreamed and have had so many godawful ugly cries, thoughts of suicide and that deep longing to finally HEAR! I lived this way for decades.
ReplyDeleteAt the age of 40, fed up with being left out of everythin, fed up with my family forgetting that despite exellent speech skills, I still cannot hear much, I started to learn sign language and it changed my life! It was wonderful to finally understand others fluently, even in group settings and it was a big boost to my morale to be with others like me, who get me, who don't need me to explain or who put me in a self-defensive stance. they already know and understand.
The aftermath of this is inner peace. I still struggle to understand spoken languages but at least I have sign language to fall back on. I hope that you continue with your sign language lessons and socialize with others like yourself, it will help a lot!