A way to wrap up the year.

A few weeks ago, when I was down in the dumps worried about how I was going to complete my internship hours for this semester and worried about what i was going to do for next year, I turned on the TV and watched an extreme home makeover episode about a boy who went through chemo therapy and is in remission.  When he found out that he had cancer he was told that his blood type was B+ and his motto and foundation were born.  Now he has a foundation entitled "B+" and since that episode it has encouraged me to push on through the end of the semester and I thought if he can do it so can I.  So my message to you as this year comes to a close is we have a lot to look forward to in 2010 and remember to stay positive or in case of Cameron, the boy in the episode, B+. 

Roommate Questions

A lot of you have been asking me "What is your status with your roommate?  Do you want a roommate?" or some people have been telling me "It's smart to get another roommate" and my response to that question is sometimes it gets lonely to not have another roommate around and I'm sure it puts a lot of pressure on my parents at the same time but for right now, with me trying to figure out what I'm going to do next year, completing my classes for this year, making sure that I spend enough time with my family and friends, it doesn't seem like it would fit in my schedule, at least not to have somebody with a disability.  I like to make my own schedule and my own decisions even though sometimes I do miss Norine.  So as you can tell, there is no straight answer to how I feel but right now I am content if my parents are OK with it.  

On the brighter side I am happy to say that thanks to Brian and Justin I am the proud owner of 2 frogs.  Yes I not only live in an apartment now, but I have pets of my very own.  Something I have wanted since I moved in.  However, right now they are nameless and I believe no living thing should go nameless so I am having a contest to see what names I like the best.  The winner will win something very frog-a-licious.  Email me or send me a post with your ideas.  Have fun and the frogs and I say thank you in advance.  Happy holidays and as you can tell I'm having fun already!  Ribbet Ribbet, Love Jess

Speaking Out Has A New Meaning

 

I enjoy my life on a regular basis but sometimes going to places such as the speak up and speak out conference makes me feel reenergized and ready to take on any struggle that comes my way.  From the minute I walked into the conference, I felt at ease despite the fact the night before we had trouble getting our rooms and getting the right accommodations I needed at a different hotel.  All of that disappeared when I came to this conference.  All the people were excited to share what they had to offer and have a good time.  There were vendors there that had equipment to make peoples lives with disabilities that much easier.  Motivational books and people laughing and smiling it was the greatest energy in the world.  I knew right then and there that I had made the right decision to come and represent the IAMC Illinois Association of Microboards and Cooperatives and represent myself.  As a person with a disability I knew that just like camp and my dance workshop, I wouldn’t be judged there or looked at differently.  For example there was a dance at the end of the conference and I was debating weather or not to take my shoes off because my feet were really hurting me due to the fact that I was really excited, and then I thought this is the last place I’m going to be judged, put a smile on my face, took off my shoes, and kept spinning.  People were just excited that I was there to stand up and speak out. 

Throughout the next few days I not only enjoyed myself but I got to learn a lot about advocacy and what I want to do in the future.  It motivated me to continue doing what I am doing in school and helping others while keeping in mind what I have to do to stay strong as a person with challenges.  It reminded me never to give up and thanks to this conference.

 

I was able to get a real handle on what an amazing legacy Lester Prichard left on not only the disabled community, but also the world.  It was unfortunate that I never got to meet him because I think he would have made a big impact on my life but just hearing about his legacy and what an impact he made on other peoples lives made me stronger and made me proud to be at the conference.  Luckily however I was able to meet and take a picture with his wife Barbara and she told me, “In a way Lester did meet you because he saw you on the Life My Way website.”  Just like Lester, Barbara was and is an amazing person and it was an honor to meet her.  We need more people in the world like Lester and his wife with positive attitudes that say we can do anything we set our minds to and Barbara even said “despite Lester’s death we can’t give up the fight for equality.” To find out more about Lester, go to my previous blog. 

Besides meeting Barbara I was also able to strengthen my friendship with Paula Vanier.  She is another self-advocate who I briefly met before at a meeting for people who have cooperatives in the state.  Getting to spend this quality time with a person who is older than me with a disability made me feel inspired and energized along with everything else I did at the workshop from hearing someone speak who wrote his own book despite having down syndrome hearing someone speak with cerebral palsy who is married and just plain dancing with friends.  I learned that sometimes the smallest things could make you the most empowered.  Remember to speak up and speak out.  Happy Thanksgiving to you all I feel so blessed have you in my life. 

 

Love Jess

 

The power of positive thinking

I know I have already written a post for this month but I thought both of these stories were blog worthy

I was lying in bed with a really bad cough wishing that I was at my parent’s house because for some reason they seem to have better immune systems.  When I thought ok there’s nothing I can do about it.  So how can I think positively?  It was then that I thought about Lester Pritchard a man who was a disability advocate who spent his entire life thinking positively and working to better the lives of people with disabilities.  I only wish I had the opportunity to meet this amazing person.  As a tribute to him here is a little bit of information about who he was.

http://www.chicagotribune.com/news/chi-obit-pritchard-15-oct15,0,3668892.story

As most of you know besides living on my own, going to school, and getting an education is very important to me.  All throughout my time at Oakton just like Lester, I have had to advocate for my needs as I have said before in this blog.  Since I am graduating in May I knew I had to plan ahead.  Now you might be wondering Jess why now it’s only October?  When you have a disability you have to plan ahead even for my graduation because in order for me to stand up in the ceremony the way I want to, they need to order a special ramp and reconfigure the seating in a different way.  From prior experience with this particular person I was expecting her to be negative and even though I didn’t get everything I wanted I still got about 90% and that was only because of safety. 

I was really impressed at the detailed notes she took of our conversation and how much she seemed to care about my situation.  I was excited and giddy.  I left the woman’s office with a huge smile on my face.  I think I not only made myself happy but taught her a lot as well! 

Lots of love

-Jessi

 

Don't Judge a Book by Its Cover

 There are only a few places where I feel completely accepted these are camp, my dance workshops both here and in California and most recently my trip to Israel.  Why am I telling you this?  The other day I was at a party and about to judge someone because they were petting me like a dog and talking to me in classic baby talk.  I almost said something but then I thought I get judged all of the time and is it really worth it?  Then I was sitting at Yom Kippur service a few days later and having a good time, when all of the sudden our older rabbi walked up to the pulpit.  I was thinking o no why am I here.  I wish I was back at my apartment because when he speaks he goes on forever.  But then I thought come on Jess give him a chance.  It’s the New Year!    Everyone knows the saying don't judge a book by its cover. Do you like to be judged?  So I did what my conscious told me and gave him another chance.  As it turned out it was pretty good.  Now I am not saying that I will never judge a person again or by telling you these stories I will never get judged again because I know that unfortunately when you have a disability it comes with the territory.  But I think that becoming conciously aware of when you are about to judge someone can only help you. 

So in honor of Yom Kippur or the Jewish judgment day, just ask yourself would I want to be treated that way and do I want to feel completely accepted where ever I go and what ever I do?  That’s what I want don’t you? 

I Did It!!!

Today September 1,2009 is a very special day for me. I have lived at the purple pad and have been writing this blog for exactly one year! A year ago living in an apartment was something my family and I talked about over dinner. In the beginning, even though I wanted to live on my own, I didn’t know if it was possible for me or if I would like it.  I even thought there might be a chance that I would write something like unfortunately the apartment thing didn’t work out for me and I had to move back home but luckily that was not the case.  With the help of my mom, dad, and PA’s, this has been a very successful year.  Thanks to them another one of my dreams has come true.   As I sit here and think about this past year I know that I still have a lot of things to master about living on my own and things will be different now that Norine has moved out.  I am disappointed about this and it will take some getting used to but I understand and I believe there is a reason for everything.  However over the course of this year, I have learned a lot of important life lessons such as what it is like living with a roommate, having to hire and fire aides, and being in charge of someone.  Like everything else in my life freedom comes with challenges and it isn’t always easy, but the fact that I can say that I have lived on my own for one year with supports means a lot to me!  I plan to stay here at least another year and look forward to the new challenges and adventures that lie ahead as I continue to live on my own and write this blog. 

I would also like to welcome Lindsy as the newest member of my support staff.  We went to Israel together and we have a great relationship.  She is helping me this year at my internships on Mondays and Wednesdays and some Friday nights so I can stay at the apartment more often. Not to say that I don’t love coming home to my moms cooking and spending time with my family because in fact I do, but getting the chance to stay at the apartment more will allow me to feel that much more independent and it will open the door to new opportunities for me.  Thank you for reading!  It has been so much fun doing this. 

Yes ladies and gentlemen of the jury, I did it!

I have lived on my own for one year!  !  ! 

I am very happy! 

Lots of love

-Jessi

Ps.  Please see the link below.  We need to get more self advocates with disabilities in the state of Illinois because if we are silent nothing will get done and I along with the disabled community could lose the chance to live independently with self determined lives but at least this website is a step in the right direction.  Thank you for letting me be a part of it.  It is an honor to do so.  Please spread the word! 

 

http://www.lifemyway.org/

 

Sent from my iPhone

Israel Adventures and Norine update.

Monday, June 8, 2009

Today was a very interesting day because it ran into two days due to the fact that the flight was so long. First I flew to New York at JFK Airport, and then to Switzerland after meeting up with the group. It was hard to tell what day it was or even what time it was. This made me both nervous and excited. I really felt for once in my life I was going on an adventure. After the Switzerland trip I knew Israel was just around the corner, I was even more excited! We arrived in Israel at 4:30 pm Israel time, but to my body, it felt like nighttime. At times I felt like I was pulling an all nighter. Once we got there I couldn’t believe the beauty I saw before my eyes. People had always told me Israel was beautiful, but until I saw it, I didn’t believe it. We arrived as a group and a bunch of people welcomed us with a sign and flowers, which made me excited and comfortable to be in this unfamiliar place. I had finally arrived in the place of my dreams!

 

Wednesday, June 10, 2009

On the first day of exploring this country, we started out by going to Mt. Arbel, a famous mountain in Israel. It looked like a huge Grand Canyon with lots of rocks added to it. I took many pictures to capture the beauty. Then we continued our journey by making our own pitas at K’far Kedem and really feeling like Israelis by riding donkeys and dressing up as old fashion Israelis. We also enjoyed a real Israeli lunch at K’far Kedem before going on a boat ride where we danced to Israeli music and when I experienced a drum circle for my very first time. My question of the day was if Menachem really got the pigeon or if it was just for show. We ended the day with a great meal and a chance to explore Israeli market places and shops before heading back to the hotel. By the way, Israeli money is really cool. My favorite activity of the day was the boat ride.

 

Thursday, June 11, 2009

On our second day of the journey we saw a beautiful view of which I took many pictures again. It was called the Tel Dan. When we were done enjoying its beauty and going up and seeing what it had to offer, we went back up to the bus to go to my favorite place of the day; an Israeli chocolate factory where we saw how their chocolate was made and got to taste it. Then we got into Jeeps and got to see many different parts of Israel, including the Jordan River. When we were about half way into the jeep tour, we stopped at the Jordan River where we got to enjoy sitting on rocks like biblical people. The counselors made me a thrown out of rocks and made me feel like a queen. Before we went back to the hotel we celebrated Jonathan’s birthday, a fellow participant with cake and watermelon. The river was amazing.

 

Friday, June 12, 2009

On the 3^rd day of our journey, on the beginning of Shabbat, we went to the Kineret which is Israel’s main water source which was actually near our hotel. We went swimming there. After enjoying the Kineret we got ready to have an authentic Shabbat with dinner and dancing right in the center of Jerusalem, not far from the old city. This was a very moving experience especially because we were here for Shabbat. Praying and dancing in that environment made me feel very grateful to be where I was. And something I’ll never forget, it made Shabbat seem very special, more than just a weekly holiday that comes and goes.

 

Shabbat, Saturday, June 13, 2009

On the 4^th day of the journey after Shabbat concluded, we had a Havdalah ceremony outside of our hotel looking out towards Jerusalem. That experience was very powerful and inspiring because after the light was illuminated everyone held hands and very slowly started singing songs and eventually we got much louder. After the ceremony we had an army night coordinated by the IDF soldiers who joined our trip in the 2^nd day. With the help of my new friend, the medic Dovi, I did the army crawl through the obstacle course. It was really awesome, that was my favorite part of the day.  PS we also learned about a soldier and what he went through to help other people and that was only one example. There are plenty of soldiers who everyday help the people of Israel stay strong. I was very fortunate to meet and come close with real Israeli soldiers.

Sunday, June 14, 2009

On the 5^th day of the journey we went to what’s absolutely one of my favorite places in Israel the Kotel, otherwise known as the Wailing Wall. I felt so fortunate to be able to speak to G-d in this very holy place, an experience I’ll never forget. Just like when I arrived in Jerusalem I didn’t yet realize how big of an impact it would make on me as a person, especially a Jewish person. Like one of the participants and later what one of my friends said, “You feel like your in G-d’s office.” It’s an experience you have to partake for yourself because there are not enough words to express how special and powerful it is. Before heading to the Bedouin Tents for dinner and campfire and sleepover, we toured Jerusalem the rest of the day. The sleepover was a neat experience to see how Bedouins live.

 

Monday, June 15, 2009

On the 6^th day of the trip we went to Masada, which was the hottest day. It was almost unbearable for me, but it was an amazing site to see at the same time. Then we cooled off by going to the Dead Sea. This was my favorite part of the day and one of my favorite parts of the trip as well because I felt free, especially for someone who uses a wheelchair this is very hard to come by. I floated on my own with no help, during this brief and precious time. Because it was so salty, I could pray and meditate as well as be comfortable without a worry in the world.

 

Tuesday, June 16, 2009

On our 7^th day of the journey, we went to do a mitzvah, or a good deed for the rehabilitation center in Israel, similar to Shriners Hospital in downtown Chicago. The experience was kind of boring because we had to shred paper but also important cause I got a free trip to Israel, and it was only right to give back for this trip. After we did the charity work, we got to try out some of the equipment. My favorite part of the day was trying out the scooters. I took a lot of pictures and felt like a kid again. I liked it because it supported me more than a regular scooter, sometimes its good to feel like a little kid in the right environment. Then we went to one of the next important places in Israel, Yad Vashem, Israel’s Holocaust Memorial. If you’ve never been there, I recommend you go because it’s a powerful experience even though it may be emotional. Some of the exhibits are hard to explain, but have helped me understand the Holocaust more than taking a semester course. Finally we briefly walked through an illuminated room saying children’s names and ages that perished in the Holocaust. I felt like their spirits were with me. Even though I didn’t know them, this was very emotional and powerful for me.

 

 

Wednesday, June 17, 2009

I’m sad to say that this was essentially our groups last day in Israel but on the upside, I believe it was one of the most powerful and special days of the whole trip, because I was able to plant my roots in the Holy Land of Israel, and dedicate a tree to anyone I want. The person who I dedicated the tree to, my uncle Steve, would get better, due to the fact that I prayed and planted the tree in such a beautiful and holy place. I was proud to leave a piece of me in Israel before concluding our trip. The last tourist attraction was Independence Hall where Israel was born and declared a state. This made me proud to be a Jew and thankful for being able to experience this trip. Before heading in the plane, we had a final banquet and awards, kind of like in camp. Some of the experiences both with people and the places we saw weren’t always easy, but I’m so grateful for this opportunity, and I’m so proud to be Jewish. I hope all the best for all of you as I return from my journey. No matter where I am in the world, you are all important to me.

I would like to take this opportunity to thank all of the wonderful staff that made it possible for me to experience Israel like my peers. 

Also a big Thanks to Lindsy because with out her there is a big chance I wouldn’t have been able to go on a trip like this.  As a result of the trip I believe our friendship has gotten stronger and I am so grateful for the new people I met there. 

Something else that I feel so grateful for was to have the opportunity to have Witness and celebrate Brent and Kristina’s wedding with them.  They are perfect for each other.  Before I end this post, I have some sad news. Unfortunately Norine has decided to move out at the end of August.  Yes I am disappointed but I know not everything is easy when you move out and the bumps in the road, is what makes us stronger.

 

To end on a happy note you can go to my face book to see my Israel pictures, the wedding pictures, Matt and Andrew’s Graduation, what Total Link has been up to and more summer fun!  Yes I just got a face book and I love it.  Thank you Jamie and Lindsy for helping me with this! 

Love

-Jessi

 

PS  Good luck Matt and Andrew!