The Rest is Still Unwritten

As promised a few weeks ago, I am once again here to leave you with a final note for the year. As a lot of us spend time with our family and some of us put the lights on the Christmas trees, it is never too late to try something new or try something you have been wanting to try for years, but have been neglecting it. I have two examples of this.

As I said a few weeks ago, I was waiting on a proposal for Cleo and I to possibly speak at a statewide conference put on by an organization called the Arc. For a year and a half or so, speaking with Cleo was just a dream, a hope, and a wish for the future, but now we can both proudly say that it has become a reality. They said yes to our proposal and with that yes a new business has unfolded. I am so happy that I didn't let this dream go dormant, because I was about to. 

My other example is a touchy subject for some people and at first I didn't know how to go about this one because there are many different ways to go about it and many different approaches to achieve the same peacefulness. Due to all of my struggles this year, I have decided to turn to my faith once again and consistently go back to a synagogue. So, I decided to look at a synagogue that felt right to me. I like the Oak Park community, because, in general it feels excepting. It has a wide variety of people with all different ethnic backgrounds and classes. A perfect example of the ethnic background scenario that I am talking about is when I attended my first service at Oak Park Temple there was a man converting to Judaism from Mexico. That is a perfect illustration of open mindedness and an excepting community. Another thing that I was attracted to from the very beginning was that their synagogue is on a sliding scale. Which means you are only required to pay what you can afford and they won't turn you away. Even though it will be awhile, my ultimate dream is to move to Oak Park. So I knew that besides my dance community, I would have to build more of a community in Oak Park and I thought that this would be a great place to start. 

With all of that said, however, I am a big believer in tradition and family bonds. So I will always continue to go to my synagogue in Northbrook for the high holidays which are Rosh Hashanah, our New Year, and Yon Kippur, our repentance day. With a combination of reconnecting with my faith and creating a stable profession for myself all in the matter of a few weeks, it has made me believe that this year will start out to be a good one. I hope that all of you have a wonderful celebration of the New Year and that it will bring to you happiness, health, prosperity, and success in all that you do. Don't give up on those dreams that you have been putting off! As the song by Natasha Bedingfield says, "the rest is still unwritten". 


I am unwritten, can't read my mind, I'm undefined
I'm just beginning, the pen's in my hand, ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Oh, oh, oh

I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
The rest is still unwritten
The rest is still unwritten

Oh, yeah, yeah

Start the New Year off right! Love to all, write to you in 2014!
-Jessi

Patience is a Virtue

Even though the saying, "Patience is a virtue" is very much a cliche, I believe it is very true even in today's society. I was reminded of this in this past month, which I believe is ironic especially because it is the time of year in which people spend more time with one another and give gifts to one another. I would like to share with you two stories in which I most recently received two of my favorite gifts.

The first one was when I was having a meeting with some family and friends to discuss my future. I had expressed some frustration that Cleo and I hadn't really gotten our business up and rolling and I felt defeated. I didn't know how to stay motivated with this idea and I didn't want it to be gone with the wind, but I needed some advice. At the meeting, my co-worker suggested I write a proposal to speak at the upcoming Arc conference in April.  I called Cleo days before the proposal was due explaining my situation and asked her if I did this on my own, would she be interested in doing the real thing with me because we hadn't talked about this in months. A few days later I got an email from my co-worker saying, "I'm afraid I have some bad news, Jess. I believe the deadline for the application to the Arc has passed, but if you call the person below you might be able to pull some strings." So, immediately after that I called the number. She said the deadline was last week, but she was willing to extend it to that Wednesday. I was very pleasantly surprised but very nervous at the same time. One, because this was Monday and the deadline was that upcoming Wednesday. And two, I knew Cleo was out of town. I knew that I would have to do most of this on my own and if I had questions I would just have to talk with her through text. I had an idea of a basic outline but never imagined that I would be doing my first proposal as a professional speaker alone. Especially, since we agreed to do this together. I don't know the end result but I do believe that we definitely have a shot. Despite having to wait for our first big break to come at the right time, patience is a good virtue to have. 

As for the second gift, I got to go to my Chi Chi's 80th birthday in St. Louis. See, we kind of have a unique relationship. When I was 7 years old, my Poppie was dating a woman that basically became a part of our family. She basically has always seemed to fit into our family like a glove even before my Poppie and my Chi Chi were married.When he decided to marry her, my brother and I knew we wanted to call her something other than Grandma, because she is not technically my Grandma and she also seemed too upbeat for that name. It just didn't fit her. So we were tossing around names, similarly to how you do when you are about to have a baby or get a new dog. I don't know how we ended up with Chi Chi, but it has been that way ever since. Because I never met my real Grandma, Marsila, she has felt like a real Grandma to both my brother and I. She is always there for us when we need her and my favorite part about her not having an old spirit is that we can talk about boys and it doesn't seem awkward. She tells me about her boyfriend she is dating because unfortunately my Poppie is not with us. We discuss life with Poppie and everything else under the sun. So, I was beyond thrilled when I found out that her sons were having a party for her 80th birthday. I couldn't think of a more deserving woman! She is very accepting of all people and she embraces every one in her life. It was a marvelous thing to look back and see how many people were there from all different walks of life and from all different connections she has made through her life. In my past writings I have talked about connectors and she is a wonderful connector. She had family, friends, our blended family, cousins, her current boyfriend's family, and many many friends from her childhood. She has been through a lot, but she is a perfect example of what happens when you truly believe that patience is a virtue. Happy Birthday Chi Chi! Thank you for wrapping us into your life!

Stay tuned for my second post for the month to help close 2013. Write to you in a few weeks.
-Jess

Featured Camper

This month I was featured in a newsletter that my camp puts together every month. I have had a very wonderful month with many birthday cards, presents, and good wishes from my family and friends. I also was able to participate as the entertainment in the Champaign Disability Expo. I plan to post pictures from that experience on the blog as soon as I get them, but the funny part of it all is that experience almost did not happen. I was trying to leave my room and my chair wouldn't move. You see earlier that day I had spilled coffee on it two times, but up until that moment my assistant and I were like, "Phew!" It didn't break down, but apparently it did, just not when we thought it was going to. Thank goodness the wheelchair people were able to get me a joy stick within 2 days of the mishap. I guess that's just the key to getting things done fast in the future. Just tell them you are going on vacation even if you are not, haha! Teddy has been through a lot also this month, but I am trying to get him back into the pup I want him to be. A friendly and enjoyable dog that everyone will enjoy because I know he has that potential. Anyways, here is the story from the featured camper of the month.

http://secure.campaigner.com/Campaigner/Public/t.show?5y3tx--326sp-k3b0db3&_v=2

I have one more funny story to share. I was exhausted from the show because we had four pieces to do. The biggest show I have ever done in my whole life and I was waiting for Tori to get out of the bathroom. This mom said, could you move up, I said sure. I must have looked really out of it because the little girl whispered to her mom, "is she real?" That is my scary story for Halloween, BOO!

Happy Halloween!
Jessi

Inclusion or Not

Hello Readers,

Even though it is late I have decided to write a blog. I would like to address with you a very controversial topic in the disability community. Inclusion or not.

I have mixed feelings about this. Earlier this month, I found out that a young woman my age was fully included in her classes despite her learning disabilities. And I was like, “Why couldn’t that be me?” I felt very angry, but on the other hand I enjoy going to camps and other segregated programs because it is a way for me to bond with others who have similar issues.

This has been very helpful to me this month because I am going through a lot of stomach issues and ironing out these issues with people who have similar problems makes me feel like I am not alone. It makes it easier to get through the days and see that there is a pot at the end of the rainbow.

So I have very mixed feelings on this issue. It depends on the day for me. Sometimes I like inclusion, and am a huge advocate for it. I would like to know from other people with challenges such as myself their opinion on this issue.

I have had a lot of people in my life with disabilities who have passed away as a result of their conditions and I am very happy to say that despite my stomach issues I have lived a very healthy year this year and will be having my 27^th birthday in two days! And with a song that I believe sums up this month in a nutshell, it is called “Better Together” by Jack Johnson.

There is no combination of words I could put on the back of a postcard

No song that I could sing, but I can try for your heart

Our dreams, and they are made out of real things

Like a, shoebox of photographs

With sepia-toned loving

Love is the answer,

At least for most of the questions in my heart

Like why are we here? And where do we go?

And how come it's so hard?

It's not always easy and

Sometimes life can be deceiving

I'll tell you one thing, it's always better when we're together

Mmm, it's always better when we're together

Yeah, we'll look at the stars when we're together

Well, it's always better when we're together

Yeah, it's always better when we're together

And all of these moments

Just might find their way into my dreams tonight

But I know that they'll be gone

When the morning light sings

And brings new things

For tomorrow night you see

That they'll be gone too

Too many things I have to do

But if all of these dreams might find their way

Into my day to day scene

I'd be under the impression

I was somewhere in between

With only two

Just me and you

Not so many things we got to do

Or places we got to be

We'll sit beneath the mango tree now

Yeah, it's always better when we're together

Mmm, we're somewhere in between together

Well, it's always better when we're together

Yeah, it's always better when we're together

Mmm, mmm, mmm

I believe in memories

They look so, so pretty when I sleep

Hey now, and when I wake up,

You look so pretty sleeping next to me

But there is not enough time,

And there is no, no song I could sing

And there is no combination of words I could say

But I will still tell you one thing

We're better together.

Write to you when I am 27! Sweet dreams!

-Jessi

Fork Stuck in the Road

This month has made me very confused and uncomfortable. I feel as though my life has been shook up and put back together. That is because I received state funding a few days ago, and with that state funding comes rules and regulations that I’m not used to. They are also not used to having somebody receiving this funding having such an active life like I do. So we both have to work together, even though I don’t see it now, people keep telling me it will benefit me in the long run. I was reminded by a song this month by Green Day, called Good Riddance, I think that describes exactly what I am going through.

I am also experiencing a lot of good things though. Cleo and I were interviewed on my boss’s radio station, Disability Beat, a few months ago about our upcoming business, which will probably be called No Limits with two taglines that my aunt suggested. Thank you Aunt Sheri! Here is the interview for those of you who want to hear it and if you would pass it on to your contacts I would greatly appreciate it. www.disabilitybeat.com/MP3s/jessiandcleo.mp3

Also, I believe that having a blog isn’t always necessarily for me. It is a way for me to reach out to my contacts and help other people out when needed. This summer, I was fortunate enough to meet a wonderful young woman at camp named Pearl Gannon. Her muscular dystrophy has gotten to the point where she is in desperate need for an accessible van to maintain her health and to be able to do the things she loves to do. Including going to camps and participating in many wheelchair sports. But she can’t do it without your help. So in honor of the Jewish New Year, I am asking you please to help my friend out in any way you can, even if it just is telling other people about her situation.

Thank you very much! And I hope for those of you that it applies to that you will have a sweet, happy, and healthy New Year with your family and friends. I know that I will because my friend, Paula, is coming in right before it starts. Which means she will set off good vibes for me. She has been through a lot this month herself and I really am grateful that she will once again be able to make the trip up here. September 1st marks my 5^th year of living on my own. Thank you Mom and Dad for helping to support me this far. I know it hasn’t been easy and I am extremely thankful. Within those 5 years, I have learned so much, grown as a person and developed my own views and opinions that help me to help others in my situation. I am so grateful that I have had this opportunity to be able to live on my own the way I want to, but I am mostly grateful that I can set a good example for the agency that's helping me to recieve the state funding of a person that likes to live a productive and meaningful life, and not one of what they are used to. I love to be one of those people that make others think and go beyond what they are used to. And it also marks the day that my cousin, Jordan, will be moving in to his own apartment very close to where I live. Another good way to start off the New Year! We are extremely excited, we don’t know who is more excited, me or him!

Here are the lyrics of the song I mentioned above…

"Good Riddance (Time Of Your Life)"

Another turning point, a fork stuck in the road

Time grabs you by the wrist, directs you where to go

So make the best of this test, and don't ask why

It's not a question, but a lesson learned in time

It's something unpredictable, but in the end is right,

I hope you had the time of your life.

So take the photographs, and still frames in your mind

Hang it on a shelf in good health and good time

Tattoos of memories and dead skin on trial

For what it's worth it was worth all the while

It's something unpredictable, but in the end is right,

I hope you had the time of your life.

It's something unpredictable, but in the end is right,

I hope you had the time of your life.

It's something unpredictable, but in the end is right,

              I hope you had the time of your life.

Five years and counting,

Jessica

The Explorer

This summer, I feel like I got to really explore myself in two main areas, myself as a person, and myself as a dancer. I got to support my friend while visiting my family.  I feel that during this time that my bonds with my family became that much stronger. This was especially exhilarating for me, because it was my first time going to see my family without my parents. Not that I don’t like to go as a whole family on vacation because I do, but getting this opportunity to go see family on my own gave me renewed confidence that I can explore and see my family on my own and this made me feel like a true adult.

It was weird but all the same empowering. At times I felt as though I had to pinch myself because I was like “Am I truly here alone without my parents?” During this trip, I got to see different forms of dance every single night. There are not many places and times in your life that you can see a ballet piece and then five minutes later see a modern or a dance with a Spanish flare to it. Seeing all of these different types of dance over three days was an amazing feeling. I kept thinking, “Wow, wow, wow!” I felt like a little kid who just opened a bunch of birthday presents, and one was even better than the next. But my dancing exploration did not stop there.

In June, I went to a summer intensive that was put together by the Dancing Wheels Company and School. They are based out of Cleveland, Ohio and during this week we studied the principles of Martha Graham, Doris Humphrey, and the integrated dance movement of the Dancing Wheels Company themselves. I believe during that week I grew as a dancer because of what I was taught. My teacher there was brilliant. He saw the good in every human being and there needs to be more people like that in the world. He said something that will always stick in my head. He said, “The most important part of dance for every single dancer is their face”.  And I believe that is 100% true. I think that helped me to understand dance on a whole new level.

My summer isn’t over, but my most recent experience I had was going to camp. This camp was most made for adults with physical disabilities. It was for 18 and older, but most of us were 21 years or older. We all had some sort of physical limitation in our day to day life, which didn’t matter to any one in that camp. That is why I think I like camp as a whole. Meaning my camp in Colorado, or this camp. For one week we can just enjoy ourselves, ask questions about what each other is going through, feel like kids, and basically do whatever we want without having to worry about judgment, or if it will take us too long to complete the tasks.

For example, you might think that this is a childish activity, but I wanted to color one of those felt and marker poster boards that they had in the arts and crafts room. My assistant asked me if I wanted to go on a different activity several times. And I specifically said no. Now you may be wondering, why would I say no when there are so many things to do at camp. And my answer is this, I just wanted to sit down, color, and didn’t want to worry about where I would be going next or what I would be doing next. Or we have to hurry up, can I finish this for you? At times, this was even an adjustment for me to relax because I would even ask my assistant “Do we have enough time for this? Do we have enough time for that?” And just hearing “Yes” was an amazing feeling. Having the freedom to take as long as I needed to complete something was a great gift in itself.

Another wonderful gift that I got to experience, was that I got to put my feet in the lake for the first time. Yes, I am 26 years old and have not had the opportunity to put my feet in the lake. When I told my dad this, he was surprised and I could tell that he kind of felt bad that I had never had that opportunity before. I do not want him to feel bad because at least I got the opportunity. It was nice to experience something out of my wheelchair that was a part of mother nature, that is given to all of us human beings on the earth. It is the little things in life that I enjoy exploring. And that sometimes when there is no time limit on the activities that I want to do, it makes my whole life a lot easier.

In my day to day life, I often feel as if I am being rushed from one place to another, especially since it takes me longer to do things. But for this one week, I did not feel rushed. I could sit by the lake for as long as I wanted to, sit by the campfire for as long as I wanted to, and not have to worry about a single thing in the world. This was a very hard adjustment for me when I came back home and I wish I could have shared it with my Colorado friends, but that is what makes life exciting. It makes you look forward to those precious times again where you can once again do what you want to do.

If they happen all the time, you would have nothing to look forward to. I also was very happy because my friend, Paula, surprised me and came to Visitor’s Day at camp. I was trying to get a hold of her all week to see if she was coming. She did not answer my phone calls or anything so the day of Visitor’s Day, I kept thinking, I hope she is okay, maybe it is bad reception in the woods. But then her mom came running in around dinner time and said “Paula’s here!” My face lit up with excitement, and that is when I realized she wanted to surprise me.

But the fun doesn’t stop there, she is coming in just a few weeks to come and spend a weekend with me and I absolutely cannot wait! I hope that all of you have been able to explore during this rest and relaxation for the summer and hope that you have had a chance to be out in the sunshine to explore in your own way. Tori and I have been exploring together for a year on Thursday! I can’t believe we have been living together for a year! It has been amazing and I would never change it for the world.

So go explore and I hope that you have a good compass!

The Little Things in Life

Hello Readers! I hope you are all having a good summer. I am definitely having a fantastic one. Instead of me telling you about my summer however, I decided to postpone that and tell you that at the end of the summer. Here is my real entry.

Often times in life, we overlook things or take for granted what we do have especially when we are in a frustrating situation. But then when something little happens in your life that makes a big difference, you are so happy and thrilled. I have a perfect example of this. As I told you last month, Tori and I went to the Spring to Dance Festival in St. Louis. My chair was beginning to serge or jerk as I like to say. Then, it would stop for a couple of days, and it is still doing this one month later. We had no idea where the source was coming from, there was nothing in my wheels that seemed to be the source of the problem. All of us at the Purple Pad were perplexed, what could this be? And every time the wheelchair company came to fix other things with my chair I forgot to tell them about the jerking because it would seem to go away. Kind of like when you feel sick and then on the day of the doctor’s appointment you don’t feel as sick as you did when you made the appointment.

One day on, one day off, this was getting tiring and frustrating. So I finally put my foot down the other day, and I said you know what regardless I’m going to call the wheelchair company. When I called the wheelchair company, they said we can come out in two weeks, but I have a better alternative for you. The wheelchair representatives will be at the Abilities Expo, which is an expo where people with disabilities come together to learn and to buy products and services that will hopefully better their life with a disability. Of course, I said yes and the next day Tori and I drove to Schaumburg to the Abilities Expo where sure enough, Permobile’s booth was right in the front. After a lot of moving around, question answering, and puzzled technicians, they came to the realization that my gears on my wheelchair needed to be fixed. They said it would take a few weeks and I was like “Okay, I’ve waited this long, what does two or three weeks matter at this point?”

But then the best news came! They said that they were going to come and install the gears for me free of charge! I was shocked and thrilled by their generosity! This was a true lesson for me in patience, community, and the importance of really realizing that little things in life make a big difference! Once again, I will be rolling and dancing smoothly very soon thanks to these compassionate people. In about three days one of my favorite holidays will be happening. For most of you advid readers, you probably know what it is because I have woven this topic throughout my blog post every year it comes about. But for those of you who don’t know what I am talking about, it is the Fourth of July. When people ask me, “What is the reason?” Every year I come up with a little twist to the answer, but the underlining message of the answer stays the same. Freedom is a great thing, and I am so happy that we have a holiday to celebrate the freedom that we worked so hard as citizens to attain. Remember, that every human being has their own form of independence. So in honor of this month’s blog, even though I have seen the fireworks many times in my life, and gone to many parades with my family in the past, I’m going to go back to the basics. I’m going to enjoy the little things in life and I hope you do too. So just when you think hope is gone, don’t give up. Enjoy your own type of freedom, with a little red, white, and blue.

-Jessi