Sunday, December 22, 2013

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

Tuesday, December 3, 2013

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

Wednesday, October 16, 2013

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

Monday, September 30, 2013

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 27th 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

Thursday, August 29, 2013

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 5th 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

Wednesday, July 31, 2013

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!

Sunday, June 30, 2013

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

Sunday, May 19, 2013

Connections



One of the things that I enjoy most about life is traveling to different states and then reconnecting with people when they come back into your own city. I experienced this once back in March around my MOMENTA show and the other one just happened for the third time this week. I'm going to talk about connections and then go back to how I met these people.

Connections are what make your world and your surroundings interesting. You can find them just about anywhere. You can find them through school, a spiritual community, a dance community, if you are a part of a band or orchestra, and in my case Toastmasters. But the most exciting thing is you never know when and if you will ever see these people again because a lot of these people are from different areas of the world and you just came together for that particular time. For example, if you go on a band retreat you never know if you will see these people again. If you go on a young adult trip such as Birth Right for young Jewish adults wanting to experience Israel, you hope to see them again but you don't know if you ever will. And it is a wonderful thing when your paths do cross. I experienced this crossing once in March and once just last night. These people are Petra Kooper and Alice Shepherd. 

I met these two amazing people in 2008 when I was a part of the AXIS Dance Company summer intensive. Petra was a participant and at the time Alice was a company member. Back in March, Petra came to Access Living in Chicago to talk about women rights and the expression of integrated dance to the UIC Disability Studies Program. She was here for a two day event, one of the days she also ran a dance workshop which I was a part of. During that day, two amazing things happened. I was not only able to reconnect with Petra but people that didn't even know me helped me get out of my chair. You see, at this time, we were struggling to find assistants. So my mom stepped out of the room for a minute to answer a call from one of the perspective candidates. And usually I am hesitant to let strangers help me get out of my chair due to a horrific experience I had in 8th grade. But something told me when half the class offered to help me that everything would be alright. 

At this workshop, because of their help, I was able to experience some of the most freedom I have ever experienced in my entire life. And freedom is very hard to come by when you have a disability. The amazing thing was, in this experience I was not only able to experience freedom for myself but help others to accomplish freedom and that in itself is a gift for someone with a disability because often times when you have a disability you are the receiver and you have a harder time being the giver due to your limitations. Not because you don't want to give, just because of your limitations. It is a time in my life that I will never forget.

The other connections happened with Alice Shepherd. One time when she came to perform at Access Living and did a workshop at MOMENTA. The second time, she performed at the Auditorium Theater with AXIS Dance Company in downtown Chicago where the Joffrey Ballet performs. And a third time, which is just this weekend, she is here for the Bodies of Work Festival dancing with some of the MOMENTA company members. A festival all about disability, art, and culture. I got to see her at the opening celebration of this festival. I feel extremely lucky to not only have met these people, but that our paths have crossed again. My wish for you is to go out and explore the world the most you can. Meet amazing people, go beyond your boundaries both physically and psychologically. Because those are where you meet the most amazing people. 

This summer I will be taking part in three different trips in which I hope to build connections. The first one is actually next week. Tori and I are traveling once again this time to St. Louis to the Spring to Dance Festival to support Kris Lenzo, another company member. The second experience I will be having is getting the chance to go to Dancing Wheels Summer Intensive where I hope to meet dancers. Both of these experiences I hope not to only enjoy myself but build connections with my dancing community. The third experience I will be having this summer is going to another camp and though it will be different than my camp in Colorado, I hope to build relationships there that will help me to feel even stronger as a person with a disability. There aren't many times in my life where there are just people with disabilities so I try to take advantage and I don't want it to be this way all of the time but sometimes it is nice to have these chances. So think about your connections. How can you build them and make them stronger? 
In the Spirit of dance, I would like to leave you with this song from the Access Living Dance Show that was a part of the Bodies of Work Festival.

Dance Floor
by Pennie Brinson

I don’t move like you
I move like this
I don’t dance like you do
When I twist and sway my way
To the Dance Floor

(Chorus)
Dancing, dancing, dancing, dancing,
On the DANCE FLOOR
Dancing, dancing, dancing, dancing,
On the DANCE FLOOR

Might not hear the beat
Or clap on time.
I got two left feet.
But I’m
Just fine
On the DANCE FLOOR

(Chorus)

If you want you can dance with me
Do your thing
And be
Free
On the DANCE FLOOR

(Chorus)
(Repeat)
Dancing, dancing, dancing, dancing, dancing.


Have a wonderful summer!

Love,
Jessi and Teddy

Friday, April 26, 2013

No Limits


A few months ago, when my friend Cleo was helping me prepare for a speech, she said, “How cool would it be if we had our own business? We are both minorities and together I bet you we could create a public speaking business with the leadership skills and communication skills we have both learned through Toastmasters. Plus, we would get to travel together and explore the world.” I said that would be cool because it would be doing something we love to do and it would give us opportunities to travel places we might not ever get a chance to go to otherwise. But at that time it was just a thought. Ralph, one of my other mentors, gave us ideas about what our company could be called but nothing struck a cord between either of us.
We began speaking to other clubs and I even spoke at the Rotary club. And then one day, my brother asked me if he could come with his independent living class to my apartment and ask questions about how I live on my own. It was then that I realized that the message that I gave to his class was don’t limit yourself. Even though I didn’t use those exact words. I continued speaking and then one day this past month it hit me. Even though there are many different messages woven throughout these blog posts my main message is don’t limit yourself. The thing that really encouraged me to get this off the ground was a goal list my friend Tim Wambach gave to me and I knew that if I wrote it down I would feel defeated if I didn't accomplish at least part of it. It was then that I asked Cleo if we could have a meeting with him to discuss the direction of this new business because we both knew that we wanted to get it off the ground in someway even if it was just talking about it out loud. Weeks before this meeting was when it hit me, No Limits would be a perfect name for our new company. Our main target audience is college students but as the title says we are not just limiting ourselves to college students. Even though we will have different types of speeches ranging from disability related topics to adjusting to the US after being in the Philippines, our message will be the same.
       At the end of the month, we are celebrating our achievements through Toastmasters and celebrating with our friends as well in their achievements. Toastmasters has really become a bonding experience for me. I have developed friendships that go beyond just the meetings even into Saturday nights. Just by coincidence, this month will mark Cleo and my anniversary for when we first met. It’s amazing that it has just been a year, because I feel like we have known each other for a lifetime. I guess that is what happens when you find the right friendships. They just click. And Cleo and my relationship is a perfect example of this. I hope people will begin to develop a bond to help each other in the tragedy of Boston but not just for the tragic times, for all the years to come. Similar to the ones I have developed through Toastmasters. What really bothers me is that the United States comes together in tragedy but in often times doesn't help each other out on a typical day. And that my friends, is not being a true American. That is putting limits on yourself. The business still isn't that much off the ground but we want to speak at least once together by August. I’m reading inspirational books to get ideas from others and thinking about my childhood to create even more powerful speeches that will benefit and make a big impact on our audiences as well as writing ideas down that I have in a notebook because we have to start somewhere. If you can think of a group that would be benefited by our message of No Limits and following your dreams, please let us know. Remember my message for the rest of this month and always don’t put limits on yourself because that will just upset you and stop you from following your dreams.

Dream big,
Jessi    

Wednesday, March 27, 2013

Here Comes the Sun


Just like the weather outside, it has not been very sunny in my life lately. In the course of one week I lost three assistants due to medical, financial, and other personal matters. And on top of that, I am having family issues, my chair wouldn’t charge for reasons we do not know, and the thing that buckles me in the car is completely broken. I am not telling you this so you can feel sorry for me, rather to prove to you that I am not super woman. As the saying goes, “When it rains, it pours”. And that’s basically how this month has been for me. 

But there has been one person that has been by my side these past couple of weeks the whole time. Even though we didn’t get along the entire time, my mom was always there for me. She has always been my rock but especially during these past couple of weeks. Together I believe we are a force to be reckoned with. In the matter of a week, we have hired and trained three new wonderful assistants, ordered a new battery for my chair, and ordered a new part so I can get in my car again independently. 

I am still feeling down about things but it is people like my mom and other family members and friends that encourage me that everything is going to be alright. The good thing is, during these difficult times, I couldn’t dwell on them too much because I had my Spring Concert MOMENTA show of a Midsummer Night’s Dream. And as they say, “the show must go on”. It was a good way for me to channel my energy in to something positive, especially during such a difficult time in my life. I said to several of my friends these past couple of weeks have been I would say, one of the hardest times in my life in all the years I have been living on my own. There were times I even wanted to give up and say, I’m going to surrender and move back home. But then I thought about the wonderful things that this apartment offers me and that there is a light at the end of the tunnel.

The week we were hiring assistants, I don’t know if this was ironic or meant to be, I kept hearing the ever popular song, “Here Comes the Sun” by the Beatles on the radio. Now I don’t listen to the oldies station, so I don’t know why it kept playing this, but I want to believe that deep down in my soul, it was a sign from G-d. It has only been a week with my new assistants, but I am already seeing a little bit of the sun poking through again in the Purple Pad. Having new assistants takes a lot of trust and comfort that comes with having a new person in your life. Especially, when they take on such an intimate role. I have to learn their personality and they have to learn mine. They have to learn what I think is acceptable as my assistant. It is a challenge for all involved, but I can see that there is definitely hope around the corner for all of us. 

As Maddie J.T. Stepanek, a peacemaker who died from a rare form of muscular dystrophy says, “We must learn to play after every storm”. So my mom, my brother Brian, and I have decided to play because it is his Spring break, and frankly we all needed a break, after all that has been going on. We have decided to go to Madison. It is only for one weekend, but we are going to play hard in all the sense of the word and enjoy every minute of it. With that said, I also wish that the sun will poke through not only in the Purple Pad, but outside as well. And in the spirit of Passover and Easter, I know that because the sun is already poking through in the Purple Pad, that it will literally pass over too. Happy Spring to all of you, and in the words of Maddie J.T. Stepanek, “Remember to play after every storm”.

-Jessi

Wednesday, February 27, 2013

One Special Place


Imagine yourself walking into a room where the walls are covered in purple. At the crack of the door you see something interesting and you don’t know exactly what it is, but you get an inkling that you are immediately blessed. As you continue to walk in the room you see a wall covered in photos of dogs and a sign that reads, “you had me at woof.” Just that sign makes you more intrigued so you continue to walk in. Then you see a blue couch and above the blue couch you see hand-made art work. Around the hand-made art work you see a stick-on quote that grabs your attention; it’s so real it pops out at you. As you continue towards the middle of the room, you see a white, framed, luscious bed that you feel like you could hop into at any moment even though you’ve never been in this room before, so you do just that. You decide to act on your impulse and hop in the bed. Your covers are wrapped around you in baby blue, white, and purple. You’re wearing the pajamas that your good friend gave you and above there are white butterflies flying in formation. On one side of you there are pictures of you dancing and on the other side there is a picture of one of your role models; Martha Graham. On the wall above your computer, the dancing doesn’t stop. There are calendar photos of expressive dance movement and quotes related to dance. You don’t know how the pajamas got on you or how your favorite decorations got around you, but you feel so special. It doesn’t stop there. On the shelf by your computer, there are pictures of everyone you possibly love in your life and you see the same thing on your bookshelf; you’re like “how did this happen? Is it a dream?” You close your eyes and open them again and realize no, it isn’t a dream; it is your room.
What I’ve just described to you is my bedroom. In the spirit of Valentine’s Day, I decided to talk about my room. Every time I look around my room, I smile and I know that when I wake up from one of those bad dreams I talked about in a previous post, that I am ok because I just look around at those pictures and at that moment I feel like everyone in those pictures are hugging me at once. It is an amazing feeling. I loved my room at the other purple pad, but I love this one even more because I was able to add almost everyone’s photograph that I love and care about in my room and that is just a great feeling when you walk into a room. When I first moved into this apartment, I was always adding photos for that reason. I thought to myself, “Oh, I didn’t add a photo of so-and-so because I didn’t get a hug from them yet. Oh, I need to include this person because they are important to me.” When I sleep at my parents’ house, it is totally different because I have that mindset now. Even though it is where I grew up it is just a room because it doesn’t have those vibrant colors that I have always wanted in my room. Whenever I tried to convince my mom to convert my room into purple, she always said, “It doesn’t match the rest of the house.” That was one of the things I was very excited about even though I was nervous about living on my own.
That, my readers, is actually where the name of this blog came about. I knew I wanted to share my trials and turbulations of having a disability and living on my own so I could inspire people to do the same and I knew that I wanted purple in the title. For me, purple also represents royalty, beauty, and motivates me to get to a higher standard of living, meaning improve myself as an individual in all the activities I am a part of; whether it be in my personal life, as a dancer, or my newest goal setting opportunity; toastmasters. That is why I also included chandeliers in my room to represent the royalty part of purple. The more I look at my room, the more I am realizing that this room has symbolism for me. At the beginning of this post, I talked about the thing in the doorway that made me feel blessed. What I meant by this is my mezuzah. All Jewish people know that if you have one of these, the room is automatically blessed. Even though they all look different on the outside, they are all the same on the inside which is also another symbolism for me within itself. You see, as human beings, we are all different on the outside,  but are all the same on the inside. For many years now, I have wanted to tell you the meaning behind the purple pad, but it wasn’t until I started decorating this room that it all came full circle for me.
Another way I experienced love this month was when my Uncle Eddie and Aunt Sherri came in from St. Louis. It was so much fun to see them. As many of you know, they are avid readers of this blog and it is people like them who encourage me to stick with my goals and dreams even if they don’t come out and say it because of their personality. For example, they were only with me for a few hours, but they were set on trying to figure out a way for me to get an accessible sink. Once my mom or one of them has a goal in their head, they do not give up and I have them to thank for my positive mindset. When I’m not having a positive day, I just think to myself, “Ok, how can I get this done? How should I think outside the box like Uncle Ed, Aunt Sherri, and my mom would?” And most likely, when I think like that, I can get a lot of things done in a productive manner. The sink isn’t installed quite yet, but we have all of the materials to do so and it will be installed very soon. 

With lots of love and a trace of purple,
Jessi

P.S.- Thank you Uncle Eddie and Aunt Sheri for adding the last touch to the new Purple Pad, my purple mezuzah! 

Saturday, February 2, 2013

The Traveling Roommates


Hello Everyone,

Let me start by telling you I am writing the date January 31st because I am not able to post the actual blog until February, but I am still considering this my January post.
So here it goes....

I have amazing assistants right now, but I also have an amazing roommate that I feel so grateful to have met. She is another one of those people that I felt from the beginning that I can just be myself around her. Not that I try to be two separate people, but usually it takes me a while to feel comfortable and be my full, total self with somebody. But she is totally different. I am very happy to say that she is another one of those people who disbite my challenges wants to help me live a full life.    The new year has started out amazing.

We have traveled to Champaign Urbana to visit my friend, Paula, which I've talked about in other posts and I truely believe that in that visit, she became Tori's friend too. We also went to see the Martha Graham Company just two weekends ago. But let me start with the trip to see Paula. There is nothing like waking up to one of your best friends wanting to throw a pillow or her Charlie Brown christmas tree in your face when we had been up all night; since it was New Years Eve. Normally, I would have been angry, but I was just surprised that she had so much energy for the little amount of sleep we had the next morning. I guess she is just an early bird. But waking up the first day of the year next to one of your best friends just made me feel amazing. It gave me this vibe saying in my head that, "the new year was going to be great." And that's only where it started.

We also created memories in Wal-mart that only Paula, Tori, and I will understand. It was already late that night, but Paula said, "Why don't we go to Wal-mart, it's your last night here, I want to live it up." I was already tired because we had been staying up all the other nights late, but I said, "Ok. I agree. It's our last night here." And I'm so glad we went to Wal-mart and I did not become a party pooper.  We stayed up late and made rice crispy treats after the Wal-mart escapade. The night before, we also chased each other in the mall and acted like fools and it didn't even bother us.

Another thing that I enjoyed about the weekend is talking to Paula's friends. You see, she is 10 years older than me. And getting some insight from her friends on how to deal with CP issues is very beneficial since I don't get to ask questions like these at home. Having a mentor group makes me feel good and more comfortable about my situation. It reminds me that if they did it so can I! Sometimes I'm concerned if I'm having a new issue related to my CP that comes up out of nowhere, but then I talk to them and it makes it all better. Having those kinds of peer groups reminds me that I can, in the words of Mike and Tim, "keep on keeping on." 

We did not want the weekend to end! I had those feelings of bittersweet running through my head the whole way home. But then I had to remind myself this is not the end, just another weekend I will never forget.

Those were just some examples of the memories we created that weekend. It is what I like to call "A Huge Hug of Memories." And every single time I think of that weekend, I just want to smile. 

However, our travels did not end there. Last weekend,Tori and I took a less-than-24-hour trip to see the Martha Graham Dance Company in Ann Arbor, Michigan. Martha Graham is a very influential dancer when it comes to modern dance. I have been taking classes in her technique since October and have totally fallen in love with this technique! Therefore, I was itching to see her company. My teacher and director of MOMENTA always expressed how fabulous the company was, but until I saw it for my very own eyes, I didn't fully understand what they meant despite the fact that I was falling in love with the technique as it was. And let me just tell you, this company is breath-taking, and it was the best $20 I have spent in a long time! I always talk about how things happen for a reason, and I really do believe they did because we got there just 5 minutes before it started. In this case, I want to believe that G-d was looking out for me! 

Tori and I love to travel together! Who knows, please look out for the team of Jessica Martin and Tori Sluis because we might end up traveling to a city near you in the near future. 

I can't end this post without telling you some sad but happy news. My pet frog, after almost 4 years, named McDreamy died. I couldn't see McSteamy living by himself, so I got a new one and named it Little Dude. But on a brighter note, yesterday was Tori's birthday, so I surprised her with a cake, and of course we did what we love to do...stay up late!  

In celebration of this month, I'd like to end with this quote from Martha Graham that is on my bedroom wall. It reads, "Nobody cares if you can't dance well. Just get up and dance. Great dancers are not great because of their technique, they are great because of their PASSION." 

Happy New Year to you all. I hope this new year has started out well for you just like it has for me. And Happy Birthday, Tori. You are amazing!