Life Inspires Me

Archive for November, 2008

Thanksgiving’s a time to be thankful… I have so much to be thankful for. I have done a lot of self reflection leading up to this holiday… What am I thankful for??? Such a simple question, yet I drew a blank till these past few weeks. The holiday is only a reminder of being thankful, but every morning we wake up we should be grateful for all we have. We lose sight of such simple things because we get caught up in life. We take for granted having a roof over our head, warm beds to sleep in, and a computer to surf the web, and sometimes the special moments we share with loved ones.

I learned a special lesson early in the week that made me appreciate my family that much more. I was looking at spending Thanksgiving alone in Chicago. Yup, alone in my friend’s apartment with a book, some sushi, and a bottle of wine… this didn’t sound appealing to me. I wanted to be home with my family.

Let’s back track early Tuesday morning (4am), my friend’s whom I was staying with headed to the airport to fly home to be with there family’s for Thanksgiving. I woke up with them to say my goodbyes for I was expecting to catch the evening train home. Since I was awake I jumped on thee computer to buy my ticket and catch up on some emails….”SOLD OUT” the trains schedules read….my jaw dropped. This couldn’t be… I searched again hoping it was a mistake. ”SOLD OUT” Again??? No this has to be a bad dream. After 2 hours of searching to find an alternative way home, I texted friends in the area in hopes to make plans but failed for all of them had left that morning as well or the day before. The thought of not being with my family for Thanksgiving was so overwhelming; I locked the bedroom door and passed out on the bed for a bit.

When I woke up the bedroom filled with light from the sunny clear skies outside. My Blackberry had been flooded with apology texts from friends in regards to not being around to keep me company. It wasn’t the thought of being alone that upset me, the fact of not being with my family felt like a stab in the chest. Still scrolling through my texts, my mom had texted while I was asleep; she and I both we still on the hunt to find a train to get me home. Becoming more used to the idea of a date with sushi and a book I wondered… How I else would occupy my time? A shot in the dark I opted to just check Amtrak one last time… to my surprise 1 ticket had opened up; without a moments hesitation I bought it and packed my bag at lightening speed, brushed my teeth and washed my face, and arrived at Union Station 2 hours before my train was scheduled for departure.

Call it ignorance but we tend to look away when we see the less fortunate in need. Out of sight out of mind… something like that. My friend and I had gone to dinner the night before and both only ate half of our meals and boxed the rest to take home. Being that he had left that morning our food sat in the fridge. I don’t like to waste food, so I took it. Walking to the train station I had seen a man lying in a doorway of what I assumed was a vacant building… I wondered- What he would be doing for Thanksgiving. Without a second thought, I took the 2 small boxes and gave them to him. If wasn’t much but at least I knew he would eat.

The train ride was long but it was nice to be going home. I couldn’t shake the thought of the man lying in the doorway. How many cold nights has he slept outside??? Pondering the struggles he may face when the snow comes. It wasn’t pity but respect for him. I know, I know… many people can just say of that’s his choice to be a bum or that’s the life he picked. But really step back and look at the big picture. He may not have a home to go to or is struggling to find a job (keep in mind the economy isn’t the best these days). I am an optimist to a fault. I like to think there is good in all of us and that is our little something beautiful we can share with the world. After 3 hours my train arrived home and I was met by my mom… remember the movie Home Alone2 and the scene where Kevin (Macaulay Culkin) sees his mom and makes that super happy face and runs to her… that’s what is was like for me, minus the running to her and the blockbuster music to set the tone. I was home!!!

I think we miss the point that Thanksgiving isn’t about the turkey or the football games or parades. It’s about getting a special day to come together with loved ones. Call it a reminder… call it food for thought… I am most thankful for my family and special people in my life. This is my something beautiful to share with all of you! Happy Thanksgiving!

Peace, Love and Rock out!

Jessica

When Superhero’s Meet Again:

Thursday November 20^th, 2008 started out to as any other day…. I was in Chicago staying with friends and woke up to have a cup of tea and fooling around with my Blackberry. Today held special meaning, for I was reconnecting with someone whose words I held so dear to my heart. Maybe this is putting him on a pedestal as a hero but I adore him… he is an inspiration. Today I was seeing Matt Nathanson. I had butterflies in my stomach and mixed emotions that clouded my thoughts. Would he really remember me??? Will he still like me, even though I can’t hear his music like I once did???

“We’re here!!!” Megan Healy texted me (Matt’s tour manager, who I’ve also bonded with this year) the band just arrived in Chicago.

I was nervous and overwhelmed with such doubt. I started to get ready and stood in the shower pondering what it would be like when we saw each other that night and how we would communicate since he didn’t know sign language and I was still learning to read lips. Snap out of it Jess! You are starting to look like a raisin! Trying to shake the thoughts I dried off and did my hair. I wonder what he will say to the large bald spot on my head. (The large bald spot is from surgery and my many failed attempts at shaving a spot to place the magnet sticker for my Cochlear Implant. It’s easy to shave my legs, but shaving a part of my head when I can’t see is a different story.)

Giving my hair the once over I crawled into the sink to put on my war paint (apply makeup) and gave myself the final pep talk before I left for the House of Blues (the concert venue Matt was performing at… Also known as HOB) I texted my friend Tim, (who I was staying with) about a million times that day, asking if I should go and if it would be ok to just hide under the bed till Matt left town… trying to talk myself out of it. ”Jess you’ll be fine. You are a strong girl. That’s what I love about you and you can do this.” Tim would continuously reply in text.

My game face was on. My hair was straightened and after trying on every outfit I packed countless times, I was ready. You are one hot mess! Go kick some ass! I seriously said this to myself in the mirror. With Tim’s words of encouragement, I grabbed my coat and left to flag down a taxi. By the way rush hour traffic sucks! I sat in traffic for 25 minutes. (The HOB is barely 3 ½ miles away, and should have been like maybe 10 minutes to get there.) Needless to say the whole day of pumping myself up for this felt like a waste. I wanted to just go home and hide under the covers but I had made it this far.

I finally arrived and picked up my ticket at the booth and headed up to go see Matt. Even with my Cochlear Implant I can’t quite pick up music (with that said it sounds odd I am at a concert. I wasn’t there for the music… it never has been about the music. I was here to reconnect with friends.) A drum roll played in my head as I walked up the stairs… Maybe it was my bongos??? My final thoughts as I was reaching the door to his room- Take a deep breath, walk in, and smile. I walked in.

Ever feel like the music stops because you appear? I felt like I had this huge sign I my forehead and everyone were going who’s that!?!? I followed my advice and took a deep breath. Where’s Matt?? My eyes scanned the room… There’s Megan! That moment felt like an eternity. Greeted with hugs from Megan and the band, Matt was on the couch tuning his guitar. He immediately jumped up with the biggest smile on his and gave me a huge hug. It’s moments like these… built up on such anticipation, that make it that much more cherished.

Huge sigh of relief! Time to enjoy myself! Matt and I sat on the couch before the concert and just talked….Conversation was easier then I imagined. Whatever I would miss he’d just write of my dry erase board.

I brought gifts for everyone (homemade trail mix) along with something special for Matt and Megan. They both had mentioned they want to learn sign so I brought a few books to help them learn. Megan liked it and was already finger spelling words I missed when trying to read her lips. (She had already learned the ABC’s and was amazing at finger spelling.)

I had a little something extra for Matt. How do you thank someone for all they have done for you over the years (I started getting into Matt’s music about the time I was diagnosed in 2000 and have always found inspiration in his sincere lyrics. I’m not a musician or a song writer, so I wouldn’t be the best at writing a song to show my gratitude. I don’t claim to be anything more then what I am. I’m not a painter but I enjoy art. It’s always been my window of creativity. That’s what I did; I painted an abstract piece to represent the common bond we had. I started about the time I had surgery in April and finally finished the piece recently for him.

I found comfort in his music and his words were my last. I can’t really go into it too much because I just become a blubbering mess…. Here I go putting him on a pedestal again but Matt is my superhero. He may not fly or run around wearing tights and a cape… We are both far from perfect and will never able to please everyone…. But that’s what I admire most is he just puts himself out there as is. It is an extremely rewarding thing when we are able to make a difference and positively impact someone’s life. Matt does that for me, so thank you for sharing your words and wearing your emotions on your sleeve.

The videos I posted are of us performing my final song… sorry the lightening wasn’t the best for my camera and I mess up a lot… really I don’t care. We had fun and that’s what matters.

Peace, Love, Rock on!

Jessica

Silent First Snow:

Today was definitely something beautiful. Snow fell for the first time this season in Michigan. I know that doesn’t sound that appealing to some but this was my first snow experience since being deafened. Watching the snow I was mesmerized. My mind wandered to recalling sounds of winter and the holiday season. I tried to recall things that made winter so memorable… Sledding down the sand dunes of Lake Michigan… building snow forts with my brother… The taste of hot chocolate and making cookies and gingerbread houses… Christmas music getting stuck in my head and my family decorating the house with lights and putting up our Christmas tree with all of our keepsake ornaments… watching my favorite holiday movies that I’ve seen countless times but it always seems like the first time.

That’s when I paused….

Everything since April (since my surgery and becoming deafened) was a first for me. As if I born again… well no I am still who I’ve always been but I have been given the chance to relive experiences again. Obviously things like first learning to drive or my first kiss aren’t really something I can relive. I know how to drive… and my first kiss on that little bridge over the stream by my house is a memory. Referring back to my favorite holiday movies that I’ve seen countless times is similar to the small things I experienced when I was younger that are vague memories… I get a second chance to relive those childhood moments. Everything in life to me is being viewed if I were a child. That’s why this snow is so amazing.

So this is my something beautiful…snow!

Déjà Vu Smoothie

The title “Déjà Vu Smoothie”, I am sure sounds a bit strange. Life is strange and that I think that’s what I love the most… Life is beautiful! Everyday a new discovery is made in learning to hear again with my CI. This video is my “Déjà Vu Smoothie”. I was here before, capturing sounds I wanted to remember before my surgery in April. Here we are again! To me its so jaw dropping (I can’t think of a better way to describe this.) to see how far I have come.

Sound of the Blender-

The sound of the blender, I am sure to most it’s annoying. To me it’s amazing.. Again the noise is different. I know its going to be… It’s about differentiating sounds… The sound I picked up was soft… Comparable to have the volume TV so low you can just make it out. High pitched…. I make not of this in my journal but think of Darth Vader on helium… that’s the sound I get.

Deeper Thought-

This is the second smoothie I have made and drank since April…. I think I stopped because the emotion I felt from adjusting to the deafness and recovering from a brain surgery was too much to take in… doing something I love and not getting the sounds. It was similar to flipping a light switch. I really didn’t have time to grasp the concept… I mean so fast my hearing was gone. If I could have froze time and held on to those final moments of hearing my family voices and my favorite musician’s songs, I would have. I think anyone would have, in the same position anyone would have. I tried making a smoothie a few times after surgery but I couldn’t stand to drink it because the sound memory of my blender would just play in my head and made me miserable.

Since Activation I have made two smoothies. (I LOVE SMOOTHIES!!!) … First off it so ironic that something so sweet and simple could bring joy to my life. The first smoothie, I let my emotions get to me and cried… yup I cried over a smoothie.

I think what most people miss… KISS- “Keep It Simple, Silly.” We invest so much time and stress over things that really doesn’t deserve that kind of credit.

“Did I pick up milk at the store?”

We all need to stop and look at the bigger picture in life and just be thankful for the goodness that surrounds you here and now. The milk will get picked up, when you get to it. No need to worry over the small stuff.

I have to give my parents all the credit for instilling this belief in my head and encouraging me to live by this everyday…

“Take life as it comes, because tomorrow is not a guarantee, so enjoy what is in the present and what will be, will be.” -Jessica

My life is a never ending circus full of medicals woe’s… I can’t tell you what happens next. My advice to life as a whole… is to just go with it. Be a good person and the rest will fall into place.

Peace, Love, Rock on!

Jessica

I am hearing again… sort of. Let me explain- I heard the beeps at activation. I am still deaf when I wake up and go to bed but now I control my deafness and can wear my CI when I want. I don’t have hearing like I did with the CI but I am open to this adjustment and teaching myself to hear again (more like a different way.) It’s going to be a long slow process…

“Patience Jess, it’s not about the destination but the experiences along the way”

Reflecting back on the days that lead up to activation-

I was a wreck. I mean excited but scared…. I mean the hard part of doing surgery was over but …“What if this doesn’t work? Maybe this is just how it is and I’m supposed to be deaf? I know if it doesn’t we could always try for the ABI (Auditory Brainstem Implant), but would that work?”…This is all I could think of.

Activation Day-

When I heard the beeps (this is how we were testing the level of loudness) I because a giddy mess! “I heard a beep!!” when Dr Z switched it to picking up surrounding sounds … I heard my parents say I love you. If my tear ducts worked, I would have filled the room up with tears. It was bittersweet. To be in 6months of silence and the thought of hearing my parents becoming a bleak hope, I could feel my emotions just pour over. It was truly a magical moment.

Currently-

Everyday is a struggle yet milestones are made. I kept my wristband from surgery in April and proudly posted it on my bedroom mirror with quotes that inspire me… as a reminder this is how far I’ve come this year and to keep my eye on my goals in life. I am keeping a daily sound journal to mark small achievements I have made and new discoveries with the CI.

My medical journey is far from over…

• I am still going to University of Michigan often for tune-ups with the CI. I never want to take it off… maybe trying to catch up for lost time. But any sound is good with teaching myself to hear in this new form.

• More tumors to monitor and more surgeries to come… hopefully no surgeries for a few months… my body needs time to recover a bit more from this year. My body scans for monitoring and looking for new tumors with the MRI’s is coming up… keep you all posted.

• My balance is still really off (from NF2 in general it is.) I am looking into and trying new forms of therapy and hopefully I can rehab this and see some improvements in the next year. (Until then my friends/and family have gotten used to me clinging to them all to steady my balance.)

Life goes on with all of this… a never ending journey. Keep you all posted on what comes next!

Peace, Love, and Rock on!

Jess