Rambling

Surgery is a few hours away. I'm not planning to post this until later but I need to write all of this. My support network has been amazing through all of this. You don't know how much every single text or message has meant. I'm not up to taking about it and please don't try to hug me because I will fall apart. But I appreciate written communication so so so much. That will be my primary means if socialization for 6 long, dark months. This is literally the second time that this has ever happened. No one I know has seen someone go through this situation. It's "like" some other hard things in life, but it's also very unique. There's no way I can make anyone understand but let me try to clarify a few things. 

The implant works. It works PERFECTLY. I'm not in pain. There is no sign of infection. The problem is that the skin around it broke. I think it's because my glasses constantly rub on it. My surgeon thinks the skin is damaged from when the implant moved before and because I'm thin skinned (he means literally, I think figuratively). Because he's brilliant and I trust him, I'm doing what he says. Listen to this part, though: if I wanted to, I could have the device completely explanted. They could reconstruct my middle ear and I could wear a hearing aid. But I'm not doing that. The Esteem is WORTH six months of pure hell and another surgery to reattach the battery. It's absolutely worth it. 

I'm not anxious about surgery. That's NOTHING. In fact, I'm planning to be awake and not even sedated. The horror here is six months of total deafness in my good ear. It's going back to the way life was before this miracle. Now that I know what life can be like, I can't imagine how painful it will be to go back to that. 

So will I get through this? Yep. Don't have any other option. Believe me, I've tried to find it. I'd like to be out in a medically induced coma until I can hear again but I don't think the dr would agree to that. This isn't going to kill me. But that's what makes it hard. For some reason (mostly what the deaf community says), people think hearing loss is no big deal. We can still function. It's not like being blind or losing a limb. And you're right...it's not. But it's horrible. The worst part of hearing loss is isolation. And WE DO NOT CHOOSE TO ISOLATE OURSELVES. I'm going to punch the next person who says that. Whether we stay home or force ourselves to socialize, we are alone. With other people, we are completely lost and confused all the time. We don't fit in at all and we know it. But despite all of that, life goes oh. We don't get a reprieve. I was talking with another Esteem recipient about this and she pointed our that if I had been in an accident or had a surgery with a long recovery, people would be lining up to help and I would not have to face normal life while I recovered. Exactly. In this case, that doesn't happen. My friends and family are wonderful. They want to help. But they can't. They can be there for me but sometimes that's harder. It's just so isolating. I have to keep living life during this time. It's just hard.

My favorite thing people say is, "It's just six months."  JUST?!?!? Cut off your arm for six months. It's JUST six months. Of course that includes the entire summer...the time when I am most thankful for hearing. I also love, "it's just one ear. The other one works." You've got two arms, too. Why would you need both? 

I get that only one other person on the planet has gone through this so no one can relate. My Esteem friends are fantastic. They're horrified. They get it. They know what it's like to be deaf and get hearing and CAN imagine how awful it would be to lose it. I know everyone wants to help and I appreciate it. I really really do. So here are ways to help a deaf person. 

1) Communicate. I won't be good in groups or public settings but I would LOVE for you to come to my house and hang out. A text can totally change my day. It doesn't have to be much. Just say hi or ask how I'm doing or tell me something funny. Keep me in the loop. I was great at being deaf before but now I know what I'm missing. So keep me updated. 

2) Be patient. Constantly asking everyone to repeat themselves sucks WAY more than having to repeat yourself. Trust me. If I'm clingy, give me grace. I feel so lost in crowds that I find someone I know and cling. I know I do it but I can't figure out a better solution. Be patient. 

3) Lighten up. I want to laugh. I told my students that they could have a candy every time they made me laugh. I NEED that. 

4) Don't disappear. You don't know what to say? That's fine. Say hi. Tell me how your day went. I don't need something profound. I just want to be included. Stay in my life even though I'm not myself for a very long 6 months. That's what all deaf people want. We just want to fit in and feel included but our disability prevents that. 

I'm going to need a lot of support in the next 6 months. I don't need help with everyday tasks because my body is fine but my emotions aren't. I need people, really. That's how you can help.