When I wake, silence
All I hear is rushing wind
It’s all in my head
Category Archives: Tinnitus
Trigger Warning: Suicide
Doctors never did figure out why I had been sleeping so much. They tested for all sorts of things, but came up short. They suspected Susac’s Syndrome, which at the time I thought was fatal, so I’m glad that turned up negative. I’ve had a couple fluorescein angiograms to take pictures of the blood vessels in my eyes, but both times they showed that everything was normal. To this day, I’m still a medical mystery.
After sleeping a couple months of my life away, I started to wake up a bit more to what was going on. I was still very deaf and still could not see well, and still had no answers and no hope. The reality of it all was starting to set in. I was now, ironically, having trouble falling asleep at night. The tinnitus would get so loud. I remember the ringing sounded a lot like chanting monks, which would normally be a comfort to me, but at four in the morning it was a nuisance. I brought this issue up to Dr. Hong at a follow up visit and he prescribed me Xanax to help me sleep. It worked wonders. I was able to get proper rest at night and was miraculously still able to wake up in the mornings to help get the kids ready for school.
I want to convey my level of desperation at this point in time without being overly dramatic. Mike and the kids had left me home alone for an evening because I had seemed to be doing so well, but that turned out to not be the case. I was feeling scared and beat down and I couldn’t see any way out of my situation. I was unable to communicate effectively with everyone I cared about. I felt utterly ALONE. I was at the end of my rope, and wanting to let go. I was feeling so desperate for a way out that I seriously considered swallowing the whole bottle of Xanax. Even more frightening than the hearing and vision loss was the thought that I wanted to check out of life permanently. I reached out to my girlfriends, hoping and praying that one of them could come over and save me from myself. My friend Tracy was the first to respond and she rushed over to the house. She prayed with me and hugged me and reminded me that I was not alone in this struggle. She left that night with the bottle of Xanax so I wouldn’t be tempted again.
As awful as it was, that night was a turning point for me. I had to stop retreating into myself. I needed to reach out, both to God and to the friends and family He had put in my life. After my family returned home that night and we put the kids to bed, I shared with my husband what had happened. I could see from his face that he was both shocked and sad, but he was glad I told him and he reassured me that we were in this together, and that he and the kids needed me. We hugged for a long time and he let me cry on his shoulder. It was good to be reminded that he was there for me because, while we didn’t know it yet, we had an important trip coming up at the end of the month to the Mayo Clinic. I’ll be sharing more about that in the next installment of Adventures with Mel 😉
Cherishing the silence
I’m finding that I do my best thinking when my “ears” are off (my cochlear implant processors). Even at night, when the house is quiet. It’s just a whole different kind of quiet, because all I hear is the low ringing tones of tinnitus and absolutely nothing else. You probably don’t realize there is noise to be heard, but just try plugging your ears for a few seconds and you’ll see what I mean. There’s a word for that noise but I can’t think of it at the moment. Ambient maybe?
What’s funny about me enjoying this silent existence is that it used to terrify me. So much so, that I needed medication just to sleep at night. But 4 years of deafness and now I welcome the silence. It’s helpful to retreat into myself, to focus my thoughts, but mostly I embrace it because it’s now my favorite time to talk to Jesus. He meets me here in the silence. He was here with me every day while I wrestled with hearing loss and vision loss back in 2013, and he’s never left me since. I don’t share this info often, but there was a song I used to sing during that time, over and over and over mostly in my head, and it brought me peace and comfort when not much else did. I’ll post the lyrics below because you might see how unbelievably appropriate it was for what I was going through. The interesting thing about it, no – miraculous – is that prior to losing my hearing, I had only heard that song one time that I can recall. It was in a movie that I watched once years ago. How on earth could I have remembered that song? Only God knows. But boy, did that song ever save me from a really ugly and scary time in my life, and I believe it will now forever be my theme song.
Losing my hearing and vision was an enormous life changer for me, for obvious reasons, but God has used it all to bring about incredibly wonderful changes. The biggest change, and the one I am most grateful for, is that it solidified my faith in Jesus. He showed me through that song, through the support we received from family and friends, through Scripture, through the fact that we survived it all, that He will never leave me.
So. When I’m settling in for the night and am taking off my ears and entering the silence, I am delighted to talk to Him. He is my peace, forever and always, amen.
Jesus, Lover of my Soul
Jesus, lover of my soul
Jesus, I will never let you go
You’ve taken me from the miry clay
Set my feet upon the rock, and now I know
I love you, I need you
Though my world may fall, I’ll never let you go
My Savior, my closest friend
I will worship you until the very end
Bilateral CI Success
Tuesday most of the day was taken up with a return trip to the audiologist. I was activated last Tuesday, June 9th, so this visit was just to see how I was doing with the left ear, and to make some more adjustments to the volumes on the electrodes. The volume for the left ear was overall too low, so I noticed a big difference after these adjustments.
The biggest change so far, the biggest improvement and blessing from the second implant, is that the tinnitus is greatly reduced. It is almost gone completely, when I’m wearing both processors. That has been a pleasant change, and one that didn’t come until this week’s adjustments. It’s so nice, so peaceful, to have ACTUAL silence. Which is ironic, right? Because before, I was profoundly deaf, not able to hear real world sounds, but there was still perceived noise going on in my head, and I had sort of become accustomed to it. Yet I guess in becoming accustomed to it, I hadn’t realized how much it bothered me. And now that it’s gone, I’m loving it. And I don’t even care that the left side is still slightly sore from surgery, or that these implants are bulky, or hard to style my hair around. Those things could be nuisances, but they aren’t. They just don’t bother me.
Because I am loving the silence. That is strange to say. From someone who unwillingly lost her hearing in a matter of days, nearly two years ago? Someone who has endured countless medical procedures and tests, including two surgeries to regain her hearing? But hearing the things going on around you in reality is far different than hearing the incessant ringing going on in your head. Because tinnitus really is all in your head. So yes, all of that was worth it to get relief from the ringing. Of course, if that were the only benefit I would say it’s overkill. They still haven’t found a cure for tinnitus. But hearing again, the real things and ONLY the real things, is wonderful. And it only gets better from here. I am looking forward to more double CI joy!
Little M.S. Runner 