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

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

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    

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

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! 

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! 

Everyone has light

In the spirit of the holiday season, I have decided to talk about something that I find is universal in all religions this time of year. Whether you’re lighting the menorah for chanukah, lighting a Christmas tree for Christmas, or lighting the kinara for Kwanzaa, at the center of it all- religion aside- we are all admiring and enjoying with our families and friends the miracles of lights. Light does not discriminate against any religion, and it is what makes us excited to move on in our life and what gives us hope for the future. During this time of joyous celebrations, whatever religion we celebrate, we all get together with our families and friends to enjoy the spirit of light during one of the darkest seasons of the year. We all enjoy the beauty and the wonderment that is before us whether we are 2 or 92. We all think that the light that we see before us is magical. Light is beautiful and we all enjoy it the same every year no matter how old we get. It brings us back to our childhood, our traditions, and what is really important in life- family and friends. Nowhere in there does it say anything about presents or the importance of presents. Even though presents are, of course, fun to get this time of year, it is the beauty of light and the family memories that we create that make this time of year simply magical. 

I have been in 2 situations this holiday season where I gave someone a gift and they said, “Can I open it on Christmas? I don’t get a lot of gifts.” And of course I said, “Sure!” In fact, I was honored! I agree that presents aren’t everything, but I was so happy that I was able to give them something to open on their most joyous day of the year. In the Jewish religion, we call that a “mitzvah,” or good deed. I was so happy to do a good deed, and I didn’t even know prior to getting the present, that I would be possibly the only person who gave that individual a gift that year.  

A night this past week I didn’t have much going on, so I decided to just sit back and enjoy the lights of the menorah. I do not do well with smoke because of my asthma-like difficulties, but I thought it wouldn’t bother me if it was just this one time. But, I was wrong. I was up for most of the night coughing, but I do not regret it because in today’s society there aren’t many times during the year where you can just sit back, relax, and enjoy the natural beauty with no one bothering you. 

My wish for you, as this year comes to a close, is threefold: 

(1) that you enjoy the simple beauty of light with your family and friends

(2) that you remember to acknowledge people that you keep meaning to acknowledge by either talking to them or just simply giving them a hug, letting them know that they are important to you and even more important as a person. I don’t think enough people in the world get to hear that they are important, and this has come to my attention because of the recent attacks in Connecticut.  I understand that you can’t take people’s illnesses away, but if you just let people know that they do matter and that they are important, it’s better than not saying anything at all. Let them see their inner light, meaning that their heart does shine, and that they do matter.

(3) that you enjoy what you are given in material objects. Let the giver know that you care about what they gave you and are appreciative that they put you on their holiday list. I mean, let’s face it...opening up a gift, no matter how old you are, makes you smile. And smiles are priceless. 

I hope that you get to enjoy family and friends, presents that make you smile, and the beauty of light. May your inner light shine bright this holiday season and may 2013 be a magical year of health and happiness for all of you.