A windy Day at the Beach!

School may be back in session, but I’ll always be a beach bum at heart.

Life Inspires Me: To Swim at the Beach

Peace, Love, Rock On!

Jess

May 6, 2009-  Before the sun had risen I was up at 5am. With no breakfast in my tummy and no makeup on my face, my mom & I headed to the hospital. Not sure why but I was channeling the Teenage Mutant Ninja Turtles (the 1990 cartoon), and my mantra walking into the hospital was “Let’s turtalise em!”  Yes, let’s turtalise these tumors!!

We checked into outpatient, signed some forms, and headed back to get prepped for surgery. Here is my small complaint… what is the first thing you wake up in the morning and do?? Most people go to the bathroom. Prepping for surgery they want you to pee in a cup to run some tests, general procedure. Well I couldn’t go, so they ended up having to draw blood. I hate needles!! The IV is bad enough, and more needles set me over the edge..

Surgery was a few hours and I woke up in Recovery with minimal pain. I did a swoop surgery to remove 10 tumors from head to toe… more like head to thighs and my poor boobie (boob) was a wounded in battle. Released from the hospital about 1pm and home to veg the day away on the couch. I tossed my cookies a few times due to the anesthesia, and really want some Strawberry Kefir to settle my stomach.

May 7, 2009-

I woke up at 1am in a lot of pain and failed at my countless attempts of opening my bottle of pain med’s. Child proofed sucks!

Plan today is to convince Tyler (my brother) to get me some Kefir… rest would be good too.

Final Notes-

I went under the knife again…. And kicked some serious ass!  Another surgery pulled off flawlessly!!

The River Bank Run this Saturday in Grand Rapids (Michigan) and my cause is simple- I’m doing this for Neurofibromatosis (NF), a genetic disorder that I live with. I’ve been doing the fulltime patient gig since the age of 7, with more than 20 surgeries under my belt and many more to come; it’s easy to lose sight of hope. This is where you have to keep your head high and keep on fighting. What I do sucks, but it’s crucial to never give up.

Check out my First Giving page for more information on the fight the cure NF.

http://www.firstgiving.com/jessicastone

All4aCause: All4NF

Peace, Love, Rock on!

Jessica Stone

Happy Tuesday!!! A happy Tuesday it is… its Obama’ Inauguration Tuesday.

As the 44^th president of the United States this afternoon, He promises a lot, but I have faith that he will bring a change.

“Starting today, we must pick ourselves up, dust ourselves off and begin again the work of remaking America,” -Obama

Obama stands for so many things to so many people. Most importantly, Obama stands for hope. Hope to inspire… Hope to bring change. This isn’t about race, sex, religion, political views, or financial/ social status; our differences put aside, together we will better our nation.

It is not where you stand, but what you stand for.I stand for so many things. Mostly I stand for inspiration for a better tomorrow. I may not hear the world, but my actions will be heard. Life inspires me. This is my pledge to help bring change for a better tomorrow.

Peace, Love, Rock on!

(3 videos were taken and are listed below)

This is pretty typical snow fall in Michigan. This is my favorite kind of snow, soft and light. Since I woke up this morning I have been so set to get out and play in it. So here we go!!! What starts out as just silly fun turned into some real character development… I shoveled the deck, sidewalk, and driveway and cleaned off the cars.

What a day!! I played with my Toby (my dog), shoveled, and grabbed some sushi with my parents! It is a happy Saturday!

Peace, love, rock on!

Jessica Stone

 When Playing In The Snow Turns Into Character Development (Part 1)

When Playing In The Snow Turns Into Character Development (Part 2)

When Playing In The Snow Turns Into Character Development (Part 3)

It’s a new year and a time to wipe the slate clean and start fresh. 2008 will be a year I’ll never forget; 2009 to me is all about new opportunities’, new adventures, and reinvention. This year is going to be drama free… nothing but good karma, good health, accepting flaws and striving for greatness.

I’m far from perfect… I take pride in my flaws and my unique view of life. The only person limiting us is ourselves. I wish not to be looked at as a hero or put on a pedestal for what I’ve been through; bottom line is we all have struggles in life. It’s important to keep in mind that hurdles in life are meant to be jumped, not stop us.

Writing out my New Years resolutions, I started out with the phrase “I’m going to…” then scratched that. “I will…” There is so much I want to accomplish and I’m determined to do it. Resolutions are made to break bad habits and better ourselves/ the position in life in which we sit. No need to get into the specifics of my resolutions because they’re personal and aren’t opened to be judged.  The point I’m trying to make is it’s a new year and its time to make a difference.

To a better tomorrow by the positive actions we take today. I wish you all a happy New Year.

Peace, Love, Rock on!

Jess

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!

]]> http://lifeinspiresme.com/2008/11/first-snow-of-the-season/feed/ 0 http://lifeinspiresme.com/2008/11/learning-to-hear-again-smoothie-2/ http://lifeinspiresme.com/2008/11/learning-to-hear-again-smoothie-2/#comments Mon, 10 Nov 2008 20:42:46 +0000 Jess http://lifeinspiresme.com/?p=76 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