Saturday, April 26, 2014

Because I Can

Last week was incredible!! I've been so down and discouraged because I HATE being deaf. I'm tired and cranky and not myself at all. BUT I had already planned a trip to Nashville for my spring break and decided to go anyway. I'm so glad I did!!

I love Nashville. Lots of my favorite people love there and another one met me there last week. It was so refreshing to see people who I love and who were so understanding. It wasn't nearly as stressful as I had anticipated. In fact, I spent most of the week with one person who handled all of this with such ease that I could actually relax. It was a relief to know that I didn't have to be on guard all the time. I feel so much better after having a break!

The highlight of the week for me was SKYDIVING!!!!! I was not a daredevil before I could hear but now I want to do EVERYTHING I couldn't do before...just because I can. :) I checked with Envoy to make sure that my Esteem would not be affected before jumping, of course. It was incredible!!! It was nothing like I expected but I loved every second. The full video is on my Facebook page. 


Another highlight was seeing Nickel Creek at the Ryman on Friday night. I actually cried because it was such a relief to hear the music and enjoy it. Right now, it feels like a lot of things I enjoy have been taken away from me. Thankfully, music has not. 


Last week was a wonderful day of sunshine in a very stormy period of life...and I am very thankful for the reprieve!!

Friday, April 11, 2014

Unexpected Blessing

When I began looking into the Esteem in October of 2011, I had a hard time getting information from Envoy. The management of the company is wonderful now, but at that time, it was not easy to work with the company. Fortunately, Google led me to the website of Shohet Ear Associates and another surgeon in Northern California who, at the time, performed the surgery. I had a choice between two well respected surgeons who had both been implanting Esteems since the clinical trials and were located equal distances from my home. The deciding factors for me were two people: MaryKay and Megan. 

MaryKay is Dr. Shohet's office manager. She has to be the sweetest person God ever made. When I called the office looking for information, she called back immediately and put me at ease. She was knowledgeable and caring, an absolute wealth of information with a genuinely loving demeanor. She instructed me to send an audiogram for Dr. Shohet to review, which I did that same day (Oct. 13).


The very next night, an Orange County number appeared on my caller ID. It was Dr. Shohet, calling at 7:15 on a Friday night. I remember thinking he was very friendly and loving that he had done his residency in Nashville (where I went to college).  After he told me that my audiogram numbers were in the "sweet spot" for the Esteem, I really didn't care how kind he was, though. I had researched him enough to trust his surgical expertise. 

From that point on, I talked to MaryKay often. Every single time, she put my fears to rest. She navigated the insurance nightmare, helped me when the imaging center lost my CT records, worked appointments around my teaching schedule and encouraged me that this would be life changing. I thought, at that point, that I would only see the surgeon a few times, but the office staff and audiologist would be in frequent communication. MaryKay was enough of a reason for me to choose Shohet Ear Associates for my surgery. 

As I said earlier, there have been many POSITIVE changes at Envoy over the last few years. One of those changes is that activations and adjustments are done by audiologists now. At the time of my surgery, Envoy sent technicians to surgeon's offices to perform those tasks. An audiologist is a highly educated hearing health professional. They are trained in the science and psychology of hearing (and hearing loss). Technicians or engineers were trained in how to operate the Esteem. Obviously, that's an important task, but I wanted an audiologist to do all of my programming. They understand hearing. Dr. Shohet's office offered that option. On Dec. 19, 2011, I went for pre-op testing and met Megan. We connected immediately. Before my surgeries, it was really rare for me to connect with people, but Megan is wonderful. She told me that she figured I would hate hearing tests so she'd try to make it fun AND she gave me coffee. Coffee is my love language. Throughout the whole process of my first surgery, she was always there for me. She gave me her cell phone number and even met me in the office on a Saturday once...on her birthday. She left the practice right before my second surgery and it was devastating for me. She is absolutely the best audiologist I've ever worked with. She has been (and continues to be) a tremendous blessing to me. Even though she is no longer working with Dr. Shohet, she has been in touch through this latest ordeal and has given me great advice. After meeting her, I had no doubt that I wanted the surgery and I wanted Dr. Shohet to be my surgeon and Megan to be my audiologist. 

After Megan left, I started seeing Arineh for adjustments. She is as sweet as sweet can be. She's personable and warm and puts up with my chattiness at appointments. She even let my friend Joshua wear headphones to hear what I heard during a hearing test once. I was very thankful to have such am encouraging and sweet person who I genuinely liked handling my hearing. 

I mistakenly thought that the only thing that mattered in choosing a surgeon was his surgical expertise. I knew Dr. Shohet had that. When I met him, I knew he was very nice. Funny thing: my mom absolutely loved him before I did. At my pre-op appointment, I wouldn't let her go into the exam room with me, but Dr. Shohet asked her to come in after the exam so he could answer any of her questions. I was 26.  That's the kind of doctor he is. I really thought that I would only see him a couple times then again in 5 years for a battery change, so his personality wouldn't make a difference. Was I ever wrong! I liked Dr. Shohet from the beginning, of course. The man made it possible for me to hear. He's my hero and I owe him an incredible debt of gratitude. It wasn't until these complications began that I realized how amazing he really is. In December, when I had the minor procedure to move the implant back into place, he was very patient with me, constantly reassuring me that he would not remove the implant and everything would be fine. He or MaryKay called me every day for two weeks to check on me after that surgery. Seriously! This is not your average surgeon. He travels all over the world to teach other surgeons how to perform complicated surgeries, but he still makes time to call patients personally. That's unheard of!  When the skin opened last month, it was a Saturday morning. I had to call the emergency number and he called back within 10 minutes. All day that day, he took my calls or responded to my emails immediately. I was a wreck. I couldn't stop crying. I had never been so inconsolable or out of control and he was so calm and caring. He even called the next afternoon just to see how I was feeling emotionally. That makes a world of difference. 

The next Tuesday, I went to see Dr. Shohet before surgery to remove the battery. I fell apart. Most of you reading this know me and probably can't picture it, but I was a mess - crying, screaming, shaking, throwing up, it was ugly. I completely lost control. Losing the Esteem is my worst nightmare and it was coming true. Looking back, I am so embarrassed. It was really awful. The entire staff was wonderful, though. MaryKay hugged me over and over. Chelsea stopped to tell my mom how sorry she was. Sam, one of the audiologists, was brave enough to adjust my Esteem that afternoon. I'd never met her before. She must have been terrified to deal with this crazy girl but she was fantastic. She was calm and fixed the problem I had been having, reassuring me that she would be with me through all of this. She told me, "It's okay to cuss in here. This is really awful."  I liked her right away. :) It was the first time that week that someone didn't give me an annoying platitude. She got it.  That whole week, MaryKay was in touch frequently. She would email or call just to check on me or encourage me. She got my mom's cell phone number and called her to see how I was doing. She is amazing. 

Life had been tough since surgery. The day of surgery was absolutely terrible. If not for the nurses, the anesthesiologist and Dr. Shohet, it would have been unbearable. Horrible as it sounds, knowing that my surgeon actually felt my pain that day helped. I wasn't alone. Someone understood how painful this is for me. Now, I'm glad that he's an otological genius, but I'm more thankful that he's a compassionate and genuinely kind man. He has emailed me to say that he's in this with me. Who does that?!  MaryKay has emailed me encouraging verses and told me that she's praying for me. Sam has tried everything imaginable to help me hear better. Arineh sends the sweetest emails, encouraging me and offering to talk if I need it. What an incredible team!

I knew I would need a support system for this time.  I expected my family and friends and coworkers to be wonderful. They have been. I know I'm loved and have a whole network of people who would do anything possible to help me. I did not expect my surgeon's office to be part or that support system. I knew I could count on them for top quality medical care, but in this season, when nothing medical or audiological can be done, the emotional support and genuine concern for me as a person (not just a case or a problem) has blown me away. What a spectacular unexpected blessing!

Sunday, April 6, 2014

Value

I bought a new car yesterday and I love it. It's adorable and sporty and red. Seven years ago, I bought a light green SUV. I didn't want to draw attention to myself at all. Post-implant me just wants to have FUN! :)

Obviously, cars are not cheap. The cost of this car was just a little less than the cost of an Esteem. Now, I was very fortunate that my insurance covered most of my Esteem surgeries. However, signing paper work for the car yesterday made me think about that. So many people won't get the Esteem because "it's too expensive." Then they'll drop $40 grand on a car without thinking twice. Yes, cars are necessary and I understand that...but a car is not going to change your life. It won't give you the ability to relax and actually ENJOY life. How can you place a value on that?!? It's absolutely priceless. Having had 2 Esteems and now living without one, I can tell you that. I'd pay anything to be able to hear with both ears again. It makes me so sad that people are willing to stay trapped in that deaf bubble just because of money. It's worth every penny. In fact, at activation for my first implant, my daddy said that to my mom. He had his ipad covering his face and spoke quietly to my mom. He said, "This was worth every penny!" and I HEARD IT.  He was right. Don't let money keep you from experiencing life. 

Friday, April 4, 2014

Normal

I've survived 4 weeks missing one Esteem now and that's exactly what life has been - survival. I'm exhausted from the constant strain of working to hear. Every night, I get in bed and feel thankful that I made it through one more day but then I have to get up and do it again. 

I'm NOT me. It feels weird to say that. I spent 26 years without hearing. That should be normal, right? It's not. In the 2 years since my first implant, I've come alive. I'm not reserved or shy or nervous anymore. I ENJOY life instead of feeling anxious all the time. It's remarkable. I never dreamed that my hearing loss was dictating my personality. It's ironic because the deaf community is adamantly opposed to surgically treating hearing loss because they say being deaf is a crucial part of who we are as people. I'm living proof that it's not. Getting hearing implants didn't take away any part of me. It was the opposite: It allowed me to find out who I am. I'm not shy or reserved or pessimistic. I'm bubbly and cheerful and outgoing. I never knew that because being deaf kept me so isolated. Now, even with one implant, I don't feel like me. I miss that cheerful spirit and endless energy. One of my coworkers actually commented last week, "You're just not you now." She's right.  

How incredible is it that after 2 years of hearing (compared to 26 years of not hearing), the hearing is "normal "?!? I can't believe how good God is to allow me to experience this miracle. Tomorrow marks 2 years since my first surgery. Two years ago, I didn't know what this roller coaster would bring. I was hoping for hearing like I had with a hearing aid, but I got so much more...immeasurably more than I could have asked or imagined.