Follow Your Heart

In life, you are faced with choices, and when you are an adult sometimes it can be hard because your parents are not always there to help you decide what the right choice would be. They say when you are confused to follow your heart. This might sound cliché, but it was absolutely true for this month for me.

I was faced with two choices: 1. To go to camp 2. To dance. It might seem like a simple answer, but both of these things bring me comfort and enjoyment. After several days of contemplating the issue, and being concerned about what the right decision would be. I decided by the advice of one of my friends to give myself a day to think about it. I did, and I truly believe I gave myself a day to think about it. I not only did that, but I said to myself, “Do what your heart is telling you to do”.

And in this circumstance, my heart was telling me to dance. Even though I am not going to camp this summer, I will still be going to Fall Weekend, which is a weekened where I can spend time with some camp friends. You might say, “Jess, but you only get a chance to go to camp once a year, and you dance every week”. That was something I considered, too, but then I thought about how as a sit-down/wheelchair dancer, I do not get as many opportunities to perform as the stand-up dancers do. I knew my dance partner would be leaving for college in a few years and I didn’t know how many more opportunities we would have to spread the message of freedom of dance for all people with all abilities. 

So, that is why I believe my heart took over and told me to dance, because when I finally made my decision to perform this summer it was no longer coming from my head. My body just had an instinct telling me “You need to do this. This is an opportunity that you do not want to miss”.

I will be performing on July 19^th at the Disability Pride Parade downtown and at my dance studio in Oak Park, the Academy of Movement and Music on July 26^th and 27^th.

I don’t know how many other times I will get this strong feeling of urgency in my life, but my advice to you is…When and if you ever get a it, follow your heart, because if you don’t you may be missing out on experiences you wish you hadn’t!

-Jessi

P.S. - My friend Chava had her baby today! Mazel tov to her and her family and I know she will teach her daughter to follow her heart!

Food For Thought

As most of you know, I usually write this blog to appeal to all types of people: my friends, my family, and people who have disabilities and have questions about living on their own despite having disabilities. But this month’s post is mainly for people with disabilities.

Even though I have been living on my own for 5 years with assistants and have been writing about the adventures both good and bad, there are some weeks that I still struggle with the very basic part of living on my own, and that is having an assistant.

Sometimes, it has nothing to do with them, but I just need my own space and time to chill out. Other times, one thing gets me upset about the fact that I need them generally and my whole day turns into a bad one. I thought this would go away after several years of having assistants, but if just goes to show you that we are all human and we all struggle with some of the basic things in our life, relationships. Relationships are very difficult. Even though I cannot get rid of my assistants because I need them on a day-to-day basis for physical help and sometimes advice, we figured out that I can have 45 minutes alone by myself if needed and eventually maybe longer and two hours alone if I am with a friend or family member. This is another part of living on my own that I did not realize would be so important to emphasize in this blog.

To the average person, it may not seem like a big deal, but everyone needs their time and space. When I had my time and space for the first time since we figured out this new arrangement, I thought about something we talked about in my writing class. We talked about the quote, “Life is not measured by the breaths we take, but by the moments that take our breath away”. Though the author is unknown, it is a very powerful quote. It reminded me that even when I am going through a difficult time with an assistant, that there are always solutions to problems even though it may not seem that way at first. And I have a lot to grateful for.

I am grateful that they are there to help me. I am going back once again to the Spring to Dance Festival in St. Louis, and to visit family with one of my assistants. I am hoping that I will have less times when I get angry with my assistants if I implement these break times in my life. I plan to continue with the new system even when I am on vacation because my assistant and I figured out we will be together for almost 100 hours over the period of time we are on vacation. After I have had these breaks for a month or so, I will tell you how it is going because maybe when and if you are living on your own it might be something good for you as well to think about. I am by no means trying to tell you what to do, I am just giving you a helpful tip that might be beneficial to you.

In addition to the Spring to Dance Festival, I will be going back to Horizon Camp this summer. I will be a part of the Disability Pride Parade, both walking in it and dancing with Momenta, the dance company I am a part of. I will also be taking part in a summer intensive with Momenta, based upon the Humphrey technique. Doris Humphrey was a dancer and choreographer of the early 20^th century who focused on the concepts of fall and recovery.

Finally, Paula will once again be coming to spend a long weekend with me. I can hardly wait! And oh yes, the best news ever! I will be spending a whole week with Paula because she is coming to Horizon Camp with me this summer! It is still hard to believe.

If that isn’t enough, just a few short days ago I received the best package ever. It was from a school that I spoke at recently. I was so confused. The package was really big and I already received my paycheck. Did I forget something there? I said to myself “I think I had everything with me that day. What could this be?” I opened the package to find thirty something letters from 4^th, 5^th, and 6^th graders expressing their appreciation to me on how much they liked my presentation and that they learned a lot. I was having a bad day with an assistant, and this turned my whole day around. It is little things like that that can change a person’s whole day and reminded me why I am creating this business of public speaking. My new business is officially called “Good Life Designer”. It incorporates my public speaking, my passion for helping people plan for their futures, and my ability and passion for choreographing integrated dances.

So, as you can see, I have a lot to be grateful for this month, and I am grateful for all of you!

-Jessi

Dancing Through Life

There has not been much going on in my life that is new since I last wrote, so I decided to steer this month’s post in a different direction. At the end of the summer, Larry Ippel will be retiring after close to 40 years of working at the Academy of Movement and Music, and Momenta. He was one of my very first dance teachers at Momenta when I started there 7 years ago.

So, I wanted to share with you the thoughts I wrote for him to say “Thank you” before he retired. Now that the weather is finally becoming beautiful once again, I want to encourage all of you to grow in whatever capacity that may mean. Whether it be learning something new for yourself or for the benefit of others. And THANK YOU Larry for helping me to learn and become a better dancer! I will miss you! Here is the note I wrote to him:

It’s a beautiful thing when we dance through life, the people we come across. One man, who has made a big influence in my life when it comes to music and dance, as a whole is Larry Ippel. He was the first person who choreographed for me when I started dancing at Momenta.

He made a special truck for me, so my wheelchair could fit in it while I was on stage. Larry also admired the fact that my wheelchair sat up in an upright position, so he created a cathead and it looked like I was a yawning cat as I slowly went up and down in an upright position. He has always seen the beauty in every dancer in the academy for that matter. He helped me from the start become musically aware of the counts, though I found it very difficult from the beginning to find my space on stage; he was always very patient with me because I think he knew I would eventually get it.

I am happy that I was able to improve my timing and ability as a dancer because in the beginning I didn’t know if I could and became frustrated at this, over the years he has helped me with choreographing ideas to make my dances even better along with dancing in and out of my wheelchair. For I am extremely blessed because I came to find that in dancing in and out of my wheelchair has its own gifts and experiences, because of this I have been able to elaborate on this when I knew this was the case.

When dancing to the right music I feel free and at peace. Unfortunately there are not many teachers that see the gifts that people with disabilities have, Larry is one of them and he will be missed by a lot of people.

Thank you Larry for encouraging me never to give up!

Love,

Jessi

P.S. - Tomorrow I am doing my first professional speaking gig at Hoover Math and Science Academy! I am so excited! I cannot believe it is already here!

True Example of Life

Since I last wrote, a lot has happened. So much in fact that I can’t believe it has only been a little over a month. In every part of my life I have had something either change for the better or for worse; but I guess that’s a true example of what life is. So I’m going to break it down into different categories. The categories will be as follows. Update on my funding to live on my own and assistance, family life and new business.

  Having help from the agency is becoming a little easier as time goes on. They have been more flexible to my needs and accommodating to my ever-changing schedule. The best part of all of it is, if I have a problem with an assistant and if they aren’t able to show up my assistant will contact the agency and it is their responsibility to make sure that there is someone to help me out so that my parents and I won’t have to worry about it. I still find once in a while that I have to stick up for my needs. Especially when it comes to the interview process, they are not use to having someone that is interested in being apart of the interview with them. Just the other night I had to remind the person in charge of the scheduling that I wanted to be apart of the interview but then again what independent disable person doesn’t have to stick up for their rights so I’m kind of use to it. It was just temporarily frustrating but I think she learned something and that to me is all that matters. When I say that she is in charge of the scheduling I mean she does not decide what or when I do things. She is just the person that makes sure that people will show up when they are suppose to and don’t go over their hours and let me tell you she was put to the test this month because I lost one assistant and temporarily another one so I want to thank her for all of her hard work that she has done to make sure my life is still running smoothly even though she will say “ That’s okay it is my job”.  I also want to thank my assistants and Tori for stepping in at the last minute to work extra hours so my life can be more efficient.

When it comes to my Family life we were thrown two curve balls this month. My great uncle Sidney past away, which is my moms last uncle he was 91 years old. I didn’t get to spend a tremendous amount of time with him but I will always remember him for his courageous smile and eyes that seemed to sparkle in mostly every picture. I don’t know why but I will always remember that he loved the gummy chews, the kind that are hard to find and come in a box. I think I will remember that because not many people except my brother and I like them. When I met him for the first time and found out that he loved them I was really happy. No one likes a memorial service but at his memorial service they had a soldier service before the actual service and let me tell you even though there were no words during the service it was extremely fascinating and powerful something I will never forget. Along with my great uncle Sidney my family lost our white furry member of the family. Junior Bryan martin at exactly three months before his thirteenth birthday, I will always remember the times we had together including bike rides, times by the fire, and just simply sitting outside together and enjoying the beautiful sunlight. He brought so much joy to our family and friends that is irreplaceable It is amazing how such a small animal can make such a impact on your life. He was their for me in difficult times in high school and often with us for many celebrations just wanting to get scraps from the table. Thank you dad for taking such good care of him in his last year of life, I know it wasn’t easy and thank you teddy for being there when I found out that Junior had past. I don’t know what I would’ve done without you. You are really maturing into a wonderful dog. I’m so happy that you are now sleeping in bed with me. I will miss Junior forever and he has definitely left a paw print in my heart. On a happier note my grandparents also known as “ NANA” and “ PAPA” will be coming home after almost two years of being in Arizona. I’m extremely excited because I haven’t seen them since then. It will be a wonderful summer. Also even though she is not a family member my friend Pearl Gannon feels like a family member so I decided to talk about her In this section. Unfortunately she has not received the necessary money to get an accessible van like I mention in an earlier post but a few days ago she was crowned ms wheelchair Illinois. I am very proud of her achievement and if you look up ms. Wheelchair Illinois on Facebook she would love your support. I will be sending invites to her page later this week to show my support for her. She has been through a lot and I am so happy she was able to receive something good and turn her life around for the better.” You Go girl”

Bam! My new career as a public speaker has really taken off. I feel as though I am a horse running out of a gate and taking off extremely fast. For something that I was waiting and waiting to happen, that seemed like it would never happen, I am shocked at how fast it all has come about. Let me start from the beginning. On February 26^th, I started my day earlier than normal because I had a presentation at my cousin’s school, and of course I wore a purple dress for good luck, put my make up on, put my board in front of me, and I was ready to go. I knew that I was not doing this as a paid position, but I was thrilled to have the experience and get my name out there. Cleo once told me, “In the beginning, it is not about the pay. It is about the experience and getting your name out there.” This was a true example of that. For some reason, I never would have thought that my name would travel as fast as it did. People at that speech liked me so much and the messages I had to share that one of the people that wasn’t even there heard about my speech and wanted me to come and speak at their school. This was a perfect example of how patience and perseverance really can pay off. The funny thing was that the presentation itself was on perseverance.

Thank you to my cousin, Jordan, and the Lincoln Prairie School for listening to my message, carrying it out, and letting me share my story with your community so my career as a public speaker could take off. It is because of that speech that now I am able to say that for the month of April, I am not only getting paid to speak at the Arc Conference, but I am getting to speak at Hoover Math and Science Academy as well. That’s what I mean when I say that it is really taking off. As for Cleo and I, we have decided that we are better just as friends, but I am extremely grateful for all of the help and support she has given me up until this point, because without her help I do not believe I could be as successful as I am today when it comes to being a public speaker.

In the future, I am open to speaking to colleges, high schools, junior highs, elementary schools, people with learning challenges, and medical students. If anyone has an idea of where I could speak, or has a referral for me, that would be great! Thank you very much.

Your new public speaker,

Jessi

Thank You

Another reason why I write this blog is to share things that have gone well with my assistants to inspire and hopefully help those who want to live on their own with a challenge. So, this entry is a story about something that worked well for me and I understand if it does not work well for you. I just thought it might be helpful. 

As I said in my previous entry, I just lost two assistants and for the most part my time with them went well. So, I decided I would write thank you notes to show my appreciation for what they had done, things I will never forget about them, and things that I would like to leave them to hopefully motivate them to become an even better person as they both go on to higher positions in their life. 

I used to think thank you notes were a waste of paper since my family has always been environmental, thanks to my brother's beliefs and business. But I realized how important just a few words can change a person's outlook on life, inspire them to be better and continue to follow their dreams. I think that the idea of writing thank you notes to your good assistants is a good way to help them feel good about themselves. Everyone needs validation in life and this is the perfect way to do so. It is amazing how just those two words, "Thank you", can make a difference in a person's life. You might not even know what that difference will be, but at least you made an impact in their journey of life. 

I would like to leave you with a quote that perfectly summarizes February for me. 
"My life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next". --Gilda Radner

With much appreciation,
Jessi

Pieces of Life

Do you remember when you were a kid and you wanted so badly to get that 500 piece puzzle from the store, then it took forever to convince your parents to buy it for you, but then when you got it home you were like, “What did I get myself into!?” That is how I feel when I am about to hire a new assistant and the interview goes well, I think the training process will also be a breeze, but unfortunately that is not always the case. In the same way, I believe that my assistants may think the same about me that working with me will be a breeze. Even though this person may have good qualities and credentials to fit my life, it might take them longer to learn how exactly to fit my needs. In a way this makes me like a puzzle because I sometimes have needs you cannot see on the surface. So from the very start, we have to work together to make the pieces all fit together.

That is why I get so excited when I go to my friend Paula’s house for New Years. Because aside from the party time, it is a time to get together with friends who are older than me with disabilities to discuss my concerns, so that the year starts out right. We talk about health concerns and share experiences. It’s an informal, open-ended discussion among friends where I can ask questions and be mentored. This conversation helps the year start smoothly. This year was no different. I got to go to one of my friend’s houses that is totally accessible, and by that I mean the kitchen included. Everything is adapted so that she can reach all the utensils and appliances. Even something as simple as this helps me get inspired for the rest of the year.

I believe I have two puzzle pieces to deal with at all times, if not more, due to my disabilities. One is the assistant piece, which I just had to deal with recently because I am losing two assistants that I’ve had since March. The second piece is that even though Cerebral Palsy doesn’t get worse, the symptoms might be aggravated due to weather or difficult situations in my life, which are happening right now. This time around I am experiencing tightness and spasms, but sometimes it can mean uncontrolled movement. So it is always a puzzle to figure out how to be comfortable with the new problems that arise due to my puzzle pieces and I am working to put them all together, but I know it will take time, I want to thank all of my readers for supporting me in this difficult time of putting the pieces back together.

Love,

Jess  

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