Transcript: Episode 331
331. Unboxing our CIs
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[Short piano piece is played, lasting about 20 seconds]
You will not believe how much adulting we did this weekend with the husband. Well, not the weekend. It feels like the weekend. But really, it's the week between Christmas and New Year’s, where nothing is happening anyway and the children are busy, which is exciting and a relief. And so we had plenty of spoons to get things done. We have new doctors where we live. We have eye appointments. We have dentist appointments. We have audiology appointments. We have a new therapist for the husband. We have our therapist that we're keeping. All of our appointments are laid out and it is epic. That is amazing. When you are talking about all of those appointments for a family of 10 [laugh], because at this point we have to include the husband's parents because we are caring for them now. And so that is so many people and that is so many appointments. [Laughter] Plus the nutritionist if you to count her too, and the physical therapy and orthodontist for the children. Like, so much is going on and we took care of it.
And then, as a reward, you will not believe what happened. But I actually already recorded this separately, so I'm just gonna place it in here, even though it'll be a little bumpy on audio because I'm in my closet now and I was in my room earlier. So I'm sorry about that. But I have to share it because it was the moment it actually happened. Yes, our cochlear implants have arrived and it's very, very exciting.
--Inserted audio--
Oh my goodness, you guys. It's here. I can't even believe it. I am so excited for you to see. I think it’s my ears. Can you see? I think I got one. [Sounds of shuffling, zipping] This is epic for an unboxing. [More shuffling and movement sounds]
[Sobbing]
They did not fix my ears. They gave me two new ones. Two both new. [Sobbing]
[Indistinguishable] …but you don’t understand how hard it’s been. I can’t even [Sobbing]
I have no sound on this side. And the one on this side is going on and off, on and off, but it won’t stay on. And it makes it so hard to understand and so hard to communicate and so hard to do editing for the podcast. [Sobbing]
I’m so so grateful. And we could not have gotten them without your help. I just want to say thank you. [Sobbing.]
I’m sorry I’m crying.
Okay. [Shuffling sounds] There’s two. [More shuffling sounds.] Charger. [Laughter] [Zipping sounds] That’s, that is what I need to be able to edit podcasts. [Sobbing]
It took two years, three years, of asking and six months to raise the money and to get approved, and I can't believe it's here. I'm sorry I’m crying. And a backup. So when you get the newer-. When you get the upgrade or a new processor you get to pick an accessory, like an extra thing that you need for it to work. So for both ears I picked the same thing, because I can't do the podcast without it. And so this is called the wireless phone clip. And with the new ones-. I don't even need that to use my phone. But I do need it to edit podcasts. And so this is a big deal. A really big deal.
All the papers, how to do it. [Laughter] How to use them. This big white box. So oh my goodness, I'm so emotional. I'm sorry. I didn't know this would be so emotional.
So for those who are listening instead of watching, you can watch on Patreon. But for those who are listening, it came in a big brown box. Well, actually, here's what you need to know about the story. Yesterday, yesterday, I suddenly got an email that said we were not at home to deliver our package. And I was like, what? Because I don't know of any packages coming. And the address that it had listed was where we used to live before we just moved. And I was like, “oh no.” And then I realized where it was from and I thought, “no way.” Because almost always they notify me the steps along the way so that we know how much progress we've made or what's left of the process of being able to get them, right? And I have not been notified that they were approved. So I had no idea it was coming. It was like a Christmas surprise. Except then it went to the wrong house [laughter] even though we had talked to Cochlear and had updated them. And so I emailed Cochlear right away. We contacted them and we were like, “Hey, we moved. We told you. Please can we not lose this box? I don't even know what's in the box. I don't know if it was parts to fix this, because you didn't tell me what was approved or not approved by insurance and with the money that we had saved.” And so we didn't know what was coming. And then they emailed back yesterday afternoon said, “Yes, not only can we fix that, but he's close enough he actually can get it to you the next day instead of sending it back to us and then that's sending it back to you.” And it did.
The doorbell just rang, always freaks me out. And it was this giant brown box. And inside the brown box was this fancy schmancy backpack that says Cochlear on it. They always have some kind of cool luggage or some piece that it comes in. I guess it's like a consolation prize or a con-, cons-. I don't know. I'm kind of like, extra bonus, because it comes with so much equipment and it can be hard to keep it all together, right? So that's super exciting. But oh my goodness. Still, until I opened the box I didn't know what it was. If it was just parts to fix the one that's completely broken, or if it was parts to make the one that's still working work better. Like we did not know what we were approved for.
But, there is one, not just one, but two boxes. And in them, left and right. And in them are brand new cochlear implants. I can't even tell you. This big giant white box is parts. All the books and pieces that we need for it to work. So what we got is Kanso 2. So they gave us with what insurance approved us and for what people helped us raise money for. We got not just parts, but completely brand new cochlear implants. And we're gonna unbox them.
Okay. Sorry. Kids heard me upset and wanted to make sure I was okay. But I am. I'm okay. So. Whew. [Breath] I can't even tell you. Okay.
Also, I do need to correct my language. I don't mean I had bad language, that would be rude. But I had, um, I had a mistaken word in English, because these are not my cochlear implants. The cochlear implants are the parts that are actually inside my cochlea. Implant: cochlea, inside the cochlea. These are what is called the processor, which is the outside part that goes on my head. That's what it looks like. The ones I have right now look like this little black egg.
So, opening the box. I'm so excited. I can't even tell you. [Sounds of box opening]
Oh, wow. This is different. It says, “When handling your Kanso 2 sound processors, you should be careful not to let them touch each other or it will delete your programming.” That's bad. [Laughter] That's really bad. We do not want it deleted. So on my implant—on my processor, we say “implant” but, or “ears,” but, I mean the processor, or the outside part—it can have four programs. One is like people talking and normal conversation. One is like a noisy environment conversation so that you can hear up close and it takes away all the background noise. One is music. And one is something else. [Laughter] I don't remember what it is. But oh my goodness. Look, it's beautiful.
So this box right here-. Inside a box. This is like our fourth layer of boxes. It's very much a metaphor for my life. This is where it is a charger, because the new processors are rechargeable. I do not have to use batteries anymore. I cannot tell you how much easier that makes our life and how much money that will save us. So in so many ways this is beyond huge. I can't even tell you.
And then the actual processor. I can't believe it's here. Ta da! How beautiful is that? It's so simple. This one is the one. I have to put the battery that has to charge. I have to put it in, but it'll stick right here on my head. And then the right one will go on the other side where I have the old one right now.
So I need to charge these so that I can start using them. And I'm so excited and I can't believe it. And I’m sorry for crying like baby. It’s a really big deal. It's a really big deal. You only get new processors, like no matter what technology improves or how much better they get at making these, you only get new ones every five or ten years. It's really hard, at least in our state, it's really, really hard to get them approved. And they're like $20,000 to $30,000 each. So having insurance coverage is critical for being able to get them and then it's still $2000 to $5000 depending on your insurance, of how much you have to do for your copay to also pay when they approve you to get new ones. And so it's such a big deal. I can't believe they're here. And we absolutely 100% could not have done it without you. I mean it so much and we are so grateful. And thank you. Thank you. Thank you, truly, for your help. Your kindness has been the-. I don't have words. [Tearful] I don’t have words. Thank you.
--end inserted audio--
Okay, so now they are all charged up. We left them charging all afternoon and evening while we hung out with the children. We got dinner. They watched a movie. And finally they're down for bed. Yay, bedtime! [Laughter] They're all down allegedly, except that they keep coming back and knocking on my door. It's like whack a-mole. I'm telling you. How many times do you six kids get up out of bed before they actually go to sleep? About three or four times each? Do you know what that means when you have this many children? It means 18 to 24 times you say, “Oh yes, your drink of water. Good night. Oh, yes, you can go to the bathroom. You don't need to ask. Good night. Oh, yes, one more hug. I love you. Good night.” 24 times people. [Laughter] Oh, my goodness. Oh my goodness.
Okay. So they have the coolest little chargers. All I do is set it down in there like a fancy cake in Alice in Wonderland and close the lid. And just like that they charge. It's amazing. I do have to say, what I said earlier was wrong. Where I thought the battery went is not the battery. The battery is already inside it. What goes inside that I had to put together was actually the magnet, which is what holds it on my head. There's a magnet inside my head—super fun parlor tricks with refrigerator magnets—and there's a magnet in the processors. And so that's how the processors sort of stay on my head. Because now there is nothing on my ears. Nothing like hearing aids at all. It just sticks on my head like I escaped the matrix.
And I don't know how to explain what this means to me. I shared that there is no way I can put into words what it means. It means I can still function, even though we had to leave Kansas City where interpreters are plentiful and automatic. Here, you have to fight for interpreters. There's not enough interpreters. There are like seven deaf kids in the school system where we live and none of them have interpreters because we can't get any interpreters up here. You don't get interpreters at the doctor, they just write you notes. In Kansas City if I just walked into the building, they knew I needed an interpreter. I didn't even have to ask. I don't mind learning how to ask for my needs. That's important. But they're not going to be met in Oklahoma. [Laughter] And so there are many, many ways we actually really miss Kansas City. But right now the husband's parents are really struggling. Oh. In fact, right now his dad is deteriorating faster than his mom and now I'm concerned about him. But I can't even think about that right now. We're in the right place. We are where we need to be for right now and I am content with that.
Back to cochlear implants. It means being able to do Zoom meetings and listen to people talking for a living. It means being able to do interviews if I want to. Maybe I don't want to. And it means being able to keep my job. It means I have choices in how I express myself because sign language or voice speaking. It means I can hear my children who can sign but also make such delightful and unpleasant sounds. It means that the listening fatigue of being a deaf person in a hearing world is a little less exhausting. It means I can experience the world in ways I never have before. I heard a bug crawling on a leaf for the first time this afternoon. I heard the sound of my toes in the carpet. I heard my child singing happily from the other end of the house, when I could not find her and I knew she was okay and breathing.
You guys, don't laugh at me. But until we got cochlear implants we did not know that you could hear around corners. I'm not kidding. We didn't know. You can't see around corners. Why would I know you could hear around corners? I didn't know this until we got the cochlear implants. And with technology updates, for the first time my ears are connected to the Bluetooth on my phone. I can adjust my settings without carrying or wearing any extra equipment. I can adjust my volume to match the mood of my children. [Laughter] I can be less irritable, more patient and more tolerant because I understand what's happening around me instead of it just being noise. It means I can go on walks and listen to podcasts, to the news, or even music. It means I can listen to books while I wait in lines or clean or work outside. It means I can watch my own thing when my children are taking turns in hospitals. You guys, I could watch something intelligent instead of what they are choosing to watch on the hospital TV. [Laughter]
You don't understand how epic This is. Anything you can do with earbuds or ear pods. It is finally my turn. I can hear music in both ears. My friend sent me this piece of music. And I don't want to say what it is because it was just private for my friend. But they sent a piece of music. It’s just public music. But it was the softest most gentle sound of an introduction to having music in both ears inside my brain, that it was the most gentle, careful experience. I can't even tell you. I can't even tell you. It was incredible.
And then my husband was like, “Well, if you think that's neat, let me just blow you away with this.” Because of course, go bigger or go home, right? And so he says that this song called Light a Roman Candle With Me-. I think that's the title. I don't know who it's by, I'm sorry. And it's not about if it's your style of music or not. He says that it's some of the best audio mixing that has ever been done. But he says you can only hear that when you are listening with headphones, when you have both earbuds in or headphones or whatever, or two cochlear implant processors that both can stream for your phone. Because this is the first time I could have both processors streaming for my phone. Before my other processors, I could plug in and listen through one side or the other side. I did not have surround sound. You guys he put on that song and it was like pop rocks in my brain. It was like fireworks [Laughter] going off all over in different parts of my brain. Like I know sound is not a tangible thing. But it was like I could feel it inside different parts of my skull. I can't even tell you how, like there are not-, pop rocks. I don't even know what to say. It was amazing.
So we have played all night listening to different things. Listening to people talking. I went and listened to some different things we put on the podcast just because I wanted to hear. That was a bad idea so I stopped listening to that. And we listened to music or songs. Listened to some of the husband’s songs. Listened to some of the songs of the children singing. Listened to some of the songs of, from his musicals or from his favorite playlist or songs he puts on for the kids when he comes over. Like we have listened to so many things. I can't even tell you what an incredible experience it's been.
So I just want to thank you, seriously. And I just want to challenge you to be present today, not just in all the hard stuff we're dealing with all the time, right? That's always in the background. But like, change the settings of what it is you want to focus on. Listen to the sounds around you. Those of you who can hear, everyone else will read the transcripts later, but those of you who can hear, notice the sounds around you. Like, are you really grateful for the gifts that you have to hear all of those sounds? And then if that's like a temporal level, like at a spiritual level, at whatever that means to you like in an existential kind of experience way, what is it that you can hear or that you can understand, or that you have access to that you're taking for granted and you could shift to be more present in that, or more appreciative of that, or more aware of that? And just hold space for that today. Like, celebrate with me this big amazing thing and just notice the world around you. Because sometimes it's kind of amazing.
[Break]
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