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.

Honesty is the best policy.

At first, I thought that the subject I am about to tell you would not be appropriate for a blog because I didn’t know who would be reading it. But then I thought, “You know, they might learn from my story and it might make me feel good getting it off my chest.” For about the past week and a half, I have had a horrible reoccuring dream. One, that in fact, I had to call my mom. Yes, I felt like a child at that time. And I thought, “Why am I calling my mom over a dream? I am 26 years old.” But the fact is that if I didn’t talk to someone about this dream, it would continue to reoccur. Let me explain the dream:

I am standing on a boat. I am not in my wheelchair. The wind blows me this way and that. I don’t know why but I have to hold on to these reigns that are attached to the boat. I keep wanting to pull one way, but the boat keeps wanting to pull me a certain way. Right before I wake up, it goes into a horrible rain storm. And then I have a lump in my throat once I wake up.

That is how I have been feeling pretty much for the whole month except for when I participated in the MOMENTA shows. There, I felt free and not trapped. Without explaining my family situation in detail, I feel like I’m trying to pull my parents one way while they are in their own way pulling the other way. This can be frustrating, exhausting, tiring, confusing. And it makes me ask the questions of “why” and “is this really my future? Will my life be a life of confusion and frustration?” Even though it did help when I talked to my mom, the situation with my parents makes me have a lot of questions about my future, g-d, and my life as a whole. It has helped me open my eyes to learn more about relationships and what is really important in them. And maybe it was a good thing that I’m not with Ryan anymore. I am still, as I like to say however, in the “why” stage. In psychology, they talk about the different stages of grieving. Currently, I feel all over the roadmap when it comes to these stages: shock & denial, pain & guilt, anger & bargaining, and acceptance & hope. So, you might be wondering at this point: how do I stay afloat? And my answer is 3-fold:

1. really, really good friends who listen and don’t question.

2. dance and toastmasters, of course, to express my feelings.
3. Prayer, which I don’t always do, except for in really difficult situations so I don’t get depressed. I had been there before and I don’t want to get to that point. It makes me unable to do the things I love to do in life, and it inhibits me from being a part of the world the way I want to. You only live once and you have to deal with things when they come.
Here is something one of my friends from Toastmasters gave me after she read at one of the meetings. It says:

Remember to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn't cost a cent.
Remember to say, "I love you" to your partner and your loved ones, but most of all mean it. A kiss and an embrace will mend hurt when it comes from deep inside of you.
Remember to hold hands and cherish the moment for someday that person will not be there again.
Give time to love, give time to speak! And give time to share the precious thoughts in your mind.
AND ALWAYS REMEMBER:
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

As a result of this month, I am beginning to realize that you can’t change the things around you sometimes no matter how hard you try. But you can change how you feel about things by beginning to accept the things the way they are, even though it is hard, and changing things about your body to a certain extent. Here’s what I mean by “changing you body”: On top of feeling sad, confused, and worried, I was beginning to feel sluggish every single day. So, as a result of this, I have decided to become a vegetarian. It has only been a week, but I already feel better. I have more energy than ever and I am happier with my life. I am still no where near the place that I want with accepting the situation, but it definitely has helped me get a little further along the road toward acceptance. Thank you to all the friends and family who have been there to lend a helping hand or just listen when I needed them. And let my post be a reminder that we have to be thankful for what we do have. Happy thanksgiving. And I am so thankful for all of you.

Love,
Jessi

P.S. Teddy turned 2 this month! I can’t believe it!

One Fortunate Woman

It all started on September 24th when I received my Competent Communicator in Toastmasters, which is the first achievement award after completing the first ten speeches in the program. I am so fortunate for many reasons this month. But the first reason is that I had the club and two mentors who helped me along the way because they believed that I could do it. 

It didn’t stop there. On my birthday, October 2nd, I was so pumped up to start the second manual that I proceeded and decided to do my first speech that day. Tori and I also made Halloween cupcakes the night before to bring to the meeting. It was a very celebratory day. It was a way for me to not only celebrate my birthday, but celebrate my recent accomplishment in becoming a CC (Competent Communicator). It made me feel so good that not only my family and friends were supportive of me, but in this case another whole community had my back, just like my Oakpark family did when some of them came to my birthday party the following weekend. I was very happy that most of my family and friends, Oakpark included, were able to celebrate my birthday with me. Having people around me that want to celebrate me for me and no other reason makes me feel wonderful. Having other people in different communities come together to support me makes me feel so good. Knowing that I can not only rely on my parents, but other people to have my back as well makes me feel that I can do anything. I have learned in order to feel successful I don’t always need to have my parents there to help and that for me is so empowering.

Let me give you another example. Cleo and I, who is one of my mentors and very close friends, spent a whole evening trying to figure out how I can successfully read a speech on my own because even though I have a lot of my speeches memorized, some of them I still read. I wanted to figure out a way for me to read it on my own without anyone having to physically stand there and flip the pages. By the end of the evening, we had figured out a way for me to do so. Yes, it was only temporary, but knowing that I had figured out a way with the help of my friend to do something with out my mom made me smile. I’m not saying that my mom is not helpful or anything like that. Growing up, I always felt that she and my dad were the ones with all of the answers when no one else knew what to do. But knowing that I don’t have to rely on them to do the things I want to do opens up a whole new window of opportunities for me. 

The fun did not stop after my birthday party. Several weeks later, my friend Hannah who was not able to attend my birthday party, surprised me at her apartment with most of her place decorated for my birthday. I was very touched by this. Especially since she was still feeling under the weather at the time. Aside from having the place decorated, she also surprised me with a cake and awesome presents. It makes me feel so good to be the one that other people do things for because growing up I had to initiate a lot of my friendships. I think that’s why I love surprises so much. 

Finally, this weekend I am going to Speak Up Speak Out once again, the self advocacy conference that my brother and I go to. Here, he sells his environmental products and I speak to self advocates to help them learn about the IAMC (Illinois Association of Microboards and Cooperatives). I hope to be one of the key notes speakers at the 2013 Speak Up Speak Out Conference with Cleo. To top it all off, I will get to see Paula at this conference and dress up as a butterfly. I hope she dresses up as well. So as you can see, this month has been a spooktacular month for me on many levels.

Love to all,
Jessi

Welcome to the hotel

Hello Readers-

Oh my goodness! I am so sorry I missed you for a month. I think that has happened to me only one other time in this whole process of writing. BUT a lot has happened since then! Aside from a few decorations in the new place, Teddy, McDreamy, and McSteamy and I are all settled in the new “Purple Pad” at 504. I am so grateful that the movers didn’t drop the tank!! Right now, I have a wonderful roommate who loves staying up with me. We are perfect for each other because we are both night owls. And, I have 5 wonderful assistants that I believe that were meant to work with me during this new phase in my life. 

Now, a lot of people have been asking me, “Why would you want to move to a different apartment?” And my answer is twofold: One, the people that I rented from wanted to move back, and two, my bathroom at 607 was beginning to look like a war zone because it was so tiny. I could barely fit my chair in there without marking up some part of the wall, and proud to say that I only have one little mark in this bathroom.  

Yes, you did read that title correctly- I said, “Welcome to the hotel” because it still doesn’t feel like home yet for 2 reasons:

1. The bathroom is humongous and looks like my parents’ bathroom. Not one that an almost-26-year-old should be deserving of. 

2. I have had so many wonderful things happen to me in this past month that I feel like I haven’t been at home that much. It all started when I went to go visit my cousin at the end of July at Eastern Illinois. We went to the bagel fest, a nearby bar, and did things that every college kid should be able to experience. Since I never really got a chance to experience it myself, it was so much fun to get the opportunity to do so even if it was just for one weekend. We both created memories in that one weekend that words cannot explain, and I believe we got even closer because of it. For example, he said to me, “Don’t you wanna come see my place? You’ve been driving for a long time, and you’ve been waiting years to see my place.” I looked at him like he was a little crazy. I said, “But I can’t get in.” And without any hesitation, he lifted me up, and before I knew it, I was in his bed in his apartment. It is people like this in my life that make life an adventure. They do not see me in my wheelchair- they see ME. Just ME. And THAT makes me smile.

    I was also very fortunate to participate in the summer MOMENTA show. I felt very blessed because I had family and close friends who came to see me. For me, there’s nothing like the combination of bright lights and people around me that make me feel more energized. Once the lights hit me, I feel a warm and fuzzy feeling all over me, and I feel like I could do anything. 

    Then, as if that wasn’t enough, I went on a camping trip with Maine            Niles Special Recreation Association. I didn’t know what to expect, but it was there that I realized that it was extremely similar to Rocky Mountain Village, where I went for 5 summers. The camp bug bit me again, and I want to go back next year for a whole week. We did everything from zip-lining to horse back riding to camp fires. As a matter of fact, I am going back there with my friend Alison for a short weekend later this month. I can’t wait! 

    To top it all off, my friend Paula, like I said in my post in July, came back for a weekend. We had an amazing time together, and I can’t believe it’s already been a week since she left. We took so many pictures that I think my iPhone was getting tired. If my iPhone could talk, it would say, “Please stop taking pictures!” Maybe we had TOO much fun and that’s why my Siri and wheelchair have been acting up this week! I can’t wait for next year! 

So, welcome to the hotel and I can’t wait to show it off sometime soon! Come on over!

Love,

Jessi

    

Four Years Already....

 I can’t believe what I’m about to write is my last post for Jessi’s Purple Pad 607. Don’t freak out. I am still going to continue writing. This blog has helped me cope with a lot of circumstances in my life over the past 4 years and I feel like it is a part of me now. For me just to stop would be ridiculous. However, I am ending my first portion of living on my own because next month which will be August, I will be moving into a different unit, which will be purple as well, in the same building. Instead of changing my whole blog title, for this new apartment, I am just going to add 504 to the end of my blog title. So, not much of a change but a change all the same. 
    In preparation for this post, I have decided to summarize all my posts up until this point because I am so grateful for everything, yes EVERYTHING, that has happened up until this point. It has made me become a more confident and stronger young woman. I have so many memories in this house. It really has become a home.
    I have cherished every single thing and would not want to change anything because I believe there is a reason for everything...even the bad stuff. I knew I had a lot of wonderful things happen to me these past 4 years, but until I sat down and really made a list, I didn’t really realize the magnitude of how many there were. So, here’s my list:
    Receiving my first piece of mail- I remember it like it was yesterday. I still love receiving mail, but once I realize that bills come along with my mail, I sometimes dread going to the mailbox. And my mom says, “Have you checked your mail today?”
    Having Norine as a roommate- I will always cherish the memories both me and Norine had during my first year of living on my own. I think it really helped me feel not so lonely, especially since that was my first year my family wasn’t around me every single day. It really helped the transition from childhood to adulthood be more smooth.
    Bought my first pack of beer- How adult-like. I am an adult.
    House warming party- I felt so loved the day of my house warming party. Everyone was there just for me and I couldn’t have asked for a better party...maybe just for some more room because there were so many people that showed up to show their excitement for me as I began this new phase of my life.
    Lots and lots of assistants- Over almost 4 years, I have had lots and lots of assistants like most of you know. And towards the end of my blog, like 2010-2011 and currently, I chose not to say their names so I could have some privacy and they could have their privacy especially because this was going to be public. I thought it would be more appropriate. However, I am not going to change the other posts because that’s how I wrote back then and it would be weird to go back and change them now. I am so grateful for all the people who have come into my life because they have all helped me become more independent in their own way. I have learned a lot from them over the years, even if it means indirectly showing me how I should treat an assistant.
    In the news- Over the years, I have been very fortunate to be in the news 3 times, one for independent living, one for promoting physically integrative dance or PID, and the last one for becoming a public speaker despite having challenges.
    Funny stories- There are a NUMBER of funny stories woven throughout my blog. But one that somehow got deleted is this: 
About a year ago, me and my mom were waiting for some adjustments to get done on my chair and they had to take my chair away. I’m not kidding you...I was in a wheely chair for a good two hours. And because it was later in the day, we were both getting hungry. So, once again, we had to adapt. She said, “What if I wheel you to the cafeteria?” I said, “That sounds like fun and a good blog story, so why not?” This kid who was about 5 yrs old looked at me and my mom in the elevator like we were both crazy. Keep in mind, my balance isn’t great and I’m using all my muscles that I have to stay up straight and not fall out of the chair. I had no seat belt on. So, this must have been a sight for a little kid, I don’t blame him for being like, “What is she doing?” But we successfully made it down to the cafeteria and both my stomach and my mind thanked my mom.  And believe me...there will be plenty of more funny stories to come at 504.
    Parties- There were plenty of parties at 607 and plenty more to come at 504. I will cherish all the fun times I have had here.
    Conferences- Having the opportunity to go to conferences through my work has allowed me to experience the world like I never have before. And has taught me a lot about how the state of Illinois needs A LOT of work when it comes to bettering the lives of people with developmental disabilities. I never realized this before, and when I first realized this, I was like, “Oh my goodness! This is our state?!” At these conferences, it hit me that I was really growing up.
    Going to Israel- My birth right experience was amazing. And though I wish it was longer, I will always cherish the memories that I was able to experience there. Something that I had always wanted to do finally came true. I didn’t even know if this was possible for me. I do want to go back, but if I don’t get the chance, at least I know I have been on Israeli soil in my lifetime.
    “McDreamy” and “McSteamy”- My first pets at the Purple Pad. And Yes, they are still alive and thriving. And they are still doing their favorite thing...fighting. I never really can tell them otherwise. They are not good listeners.
    “All About Adapting”- Throughout this entire blog, and my life for that matter, I have learned that in order to do a lot of things in my life, I have to adapt to a lot of situations otherwise I wouldn’t get things done or just be upset with the outcome.
    Supportive readers- This is where I get to thank you. You have always been there for me. And there are occasional times when someone has said, “I like your blog,” and I don’t even know who they are. And those are the kinds of impacts that are so rewarding to me. That is another reason why I decided not to stop writing my blog but to continue. Thank you, thank you, thank you from the bottom of my heart.
    Pez collection added to Purple Pad- I am so happy that I was able to add my Pez collection to the Purple Pad, and it really added color and excitement to the place. But I really have no idea how I’m going to get all of my Pez into 504. Good luck, movers!
    Graduating from Oakton Community College- It was fun writing to you about my adventures at Oakton. My friend, Hannah, just graduated, and she reminded me of something that I will always cherish. At most graduations, before you go into the ceremony room, all the teachers from the school are there to congratulate you. You feel like you have just won a million dollars, and so many memories start to flash in your mind as you realize this is the end. I will never forget this special day, and I am so glad I was reminded of that portion of graduation because I definitely don’t want to forget that, especially after 5 fun long years and hard work.
    Life lessons- Throughout my blog and throughout my future blog, there will always be life lessons that I will come across, but I believe that the ones that I have already come across are the most influential because they happened when I first started living on my own. 
    It’s all about the journey, not the destination- I have decided to re-say that quote because it is always something I have to remember and it definitely gets me throughout the hard times. It has become like the Jessica Martin motto.
    Lost friends- I am sad that I lost 3 friends throughout almost 4 years. Two of them I lost in their physical form and one of them I lost for reasons I do not know. I am very sad about this particular friend. I know things happen for a reason, but I don’t know the reason. But, like they say, “the show must go on.” And the ones I have lost due to death have made me become a stronger person and I will always remember the things they taught me.
    Choreographed first dance- Thanks to MOMENTA, I was able to cross something off my bucket list by creating my first dance for their show and the disability pride parade last summer. My piece was called Flying Friends and it was a big success. Thanks to my first dance, I have been inspired to continue my career as a choreographer. Without this first opportunity, I don’t know that I would be wanting to choreograph. I love being a choreographer. In the beginning, it was just another idea, but in the end, it has opened my eyes to another facet of dance that I absolutely love.
    Raise money for wheelchair- I will always remember and be grateful to all the people that helped me raise money for my wheelchair. Like I said in my post, you are all my little angels. And KOKO helped my angels do what they wanted to do. Thank you KOKO, and all my other angels, for all you did for me.
    Spoke to medical students/inspired to do more often- Thanks to my experience speaking to medical students and having bad experiences with doctors and how they treated me and other people with disabilities, I have been that much more motivated to continue my work in speaking to future medical students. I hope to someday, in the very near future, make this a viable profession for myself. And I have friends who want to do it with me, which makes it that much more exciting.
    Cake Boss Cake- I was fortunate enough to get a Cake Boss Cake for my 25th birthday. I will never forget when I actually took a bite of cake and realized, “this is actually from the Cake Boss!” I’m sorry to say, but I thought, “I feel really cool right now!” And knowing that my family and friends were there to celebrate with me made it that much more special. I can’t believe it’s been almost a year already.
    See AXIS for the first time- I had a wonderful opportunity to see AXIS dance company, a contemporary physically integrated dance company, actually in my own state. It was amazing to have the opportunity earlier, before I started the blog in 2008, to learn to dance with them, but another thing to see them dance professionally on a stage in my own city. I was thinking, “Wow! They are amazing, and I had the opportunity to dance with them? What a lucky girl!” I hope to dance with them again in the future.
    Vacation- I traveled only a little bit during these 4 years, with the exception of Israel, but I loved the places I went. Even if it was just to Wisconsin with my grandma, or Chi Chi. Sometimes, it doesn’t matter where you go but the people you are with. And oh yes...how could I forget? My first skiing trip. That was something I wanted to do for a long time...and I look forward to skiing again in the future. Since my first time I skied, I skied one other time as well. I absolutely love the feeling I get when I ski; it is so exhilarating! And for the first time in my life, I am actually excited for winter to come around..because it’s SKI SEASON!  This summer, I’m going on a camping trip with Maine Niles Special Rec. Association, and also, I am going to go visit my cousin at Eastern Illinois before he graduates. This is another thing that was on my bucket list. I will probably talk about this, as well as the camping trip, in my first post at 504.
    Met Samantha Abeel (one of my heroes)- Meeting Samantha Abeel, the author of My Thirteenth Winter and Reach for the Moon, gave me hope that, despite my math disability, I can get passed things in the same way that I can get passed things despite my physical disability. Therefore, she is another one of my heroes. 
    Surprise my parents- Having the opportunity to work with my grandparents to surprise my parents really really made me happy because I felt, for the first time in my life, I was actually giving back to them. When you have a physical disability and depend on your parents for so much for so long, it is hard to give back. I know that my tree is a little shaky right now, but I know that the roots are there and I am hoping that, with a little watering and a little TLC, they will be fixed very soon. 
    Teddy- Oh my Gosh! I can’t believe it has been almost 2 years since I got Teddy. It feels like yesterday! Teddy is not just my third pet at the Purple Pad (including the frogs) but he makes life that much more meaningful. I love my man’s best friend. I hope he adjusts well to 504. Woof! Woof! 
    Toastmasters- The experience of Toastmasters has brought me so many things. It has brought me newfound confidence, new skills, and hopefully if all goes well, a profession and a business partner. Keep your fingers crossed for me. I am in the very beginning stages of seeing if this can actually become a reality. I never would have thought that being part of a club would bring me so many wonderful opportunities and newfound skills. I also believe that, because I am in toastmasters, I believe I am teaching others about how to help people with disabilities, how to treat people with disabilities, and there is more to a person than just meets the eye. All of those things combined gives me such satisfaction. The fact that I am learning and teaching others makes me feel like I have a real place in the club.
    Playfair begins- I had my first year of Playfair, the after school program to teach kids about disability and social justice issues in an informal setting after school. Though this was not as successful as I wanted it to be, I realized that the kids did learn a lot when I sat back and looked at the year as a whole. And I also realized that this was just the first year it ever came to the US. So, for a pilot year, it wasn’t that bad. And I look forward to seeing where it goes next year when my mom and I go to another school. We don’t know where we’re going yet, but hopefully near Caruso, where I was this year.
    Paula visited 2 times and Marva visited- I will never forget the times that me and Paula spent together when she came and visited in 2010 and 2011. Paula is coming again this summer from August 30th to September 2nd. It can’t come soon enough! Paula- come to chi-town NOW! In the same way that I will never forget the times I spent with Paula, I will also never forget the time that Marva, one of the Israeli citizens from my birth right trip, came to visit me and Lindsy. Unlike Paula, however, this was totally unexpected! This is someone who came across the Atlantic Ocean to see us on her visit to the United States. It was so nice to see her especially since I thought I would never see her again. I guess things happen when you least expect them.
    Flexibility- Over these past years, my parents and I have really had to be flexible even when we didn’t want to. But, in order to make things work out for everyone, I have learned that I have to put on my big girl pants and do what’s best for the situation even though sometimes, because I’m human, I really don’t want to.
    The opportunity to speak at Lekotek- Having the opportunity to speak at Lekotek was the greatest honor I have had so far in my 25 years because, when I first came to Lekotek, I was just 4 years old. And now, they remembered me and were impressed by me enough to invite me to come and speak at their annual gala downtown. I honestly wouldn’t have thought that someone of my age would be asked to speak at such a formal event. This was my first official speaking engagement where it was basically just me and another family.  And that within itself is a gift. The fact that Lekotek did so much for me, I felt like I just had to say “yes.” It was my way of giving back to them. Thanks to that experience, it has motivated me to do more in the form of professional speaking. It hit a spark with me, and as most of you know, once a spark goes, I just keep going. 
    First serious boyfriend, Ryan <3 – I am blushing just writing about this, so I am not going to spend a lot of time on this, but I am sure you are wondering. I am sure you guys are saying, “You haven’t talked a lot about Ryan lately, how is it going?” Well, it has been 5 months since I wrote the post, but 6 months since we met. For the record, I am saying this on both of our behalves, I am tired of the rumor that people with disabilities can’t date- because that isn’t true. Things are still going strong. I love the times we spend together, even if it’s just talking in my room. I hope he does too. 
    Dealing with doctors- I have not only had to learn about dealing with disagreements with a roommate and disagreements and awkward situations with assistants, but I’ve had to deal with difficult situations with doctors. Now that I am older, I go to a lot of appointments either being dropped off or it is just me and my assistant. I have to deal with a lot of uncomfortable situations that I never really had to growing up because my mom was there, so I really never experienced these situations before. But now, that I want them to talk to me and not my assistants, it has become a problem. That is why I am so adamant on making it my life mission to speak to future doctors and nurses so that I can make a change. Yes- I can’t change all the doctors, but if no one does anything, nothing will get done. These experiences have opened up my eyes to what real life is like, and reminded me again that, yes, I am an adult.
    Teamwork- Even though I don’t like to admit it sometimes, teamwork is a big part of making my life at the Purple Pad successful. Sometimes I don’t like it because I want to make all of my decisions like an able-bodied person would be able to. But I know that there is more to my life than just decisions. It is who is actually going to be with you when you make that decision? Who is going to drive you when you make that decision? And when I made bad decisions in terms of letting people go on my own, I wouldn’t look at the big picture and looked at the immediate frustrations. See what I mean about life lessons weaving throughout my blog entries? It gets me every time.
    In summary, I will miss my apartment here because it was my first apartment and has really become a home to me. I will always remember the memories I had at 607 thanks to this blog but I’m looking forward to the new memories I create at 504!
    
Write to you in 504. Until then, bye from 607.

-Jessi, Teddy, McDreamy, and McSteamy

A New Window to the World

When my family and I figured out a way for me to navigate the computer and type on it efficiently, this was a new window to my world.  Though I do not type by myself all the time due to fatigue, I am still able to do so 95% of the time.  About three or four months ago a new window to my world was opened up when I got my i-phone.  I was dreading getting a new phone because, like I’ve said before, I usually do not like change.  And in the same way that I was uncomfortable with the computer when I first started, I was uncomfortable with the concept of an i-phone.  I was thinking, this one is fine.  There is no need for me to text, people understand my limitations.  Many statements were going on in my mind, like these, as my mom was trying to convince me otherwise.  But now after having the phone for about six months, I have realized that this is like the computer, another way to level the playing field for me and be like my peers.  So, it has reminded me that before I say I can’t, I should say, why not.  There is a famous quote that I just put in one of my speeches by John Wooden that reads “Do not let what you can’t do interfere with what you can do.” I see now that instead of letting the door close, I was able to open up a new window for myself.  I would like to finish with some of my speeches that I have been working hard on because being in toastmasters has opened another window to my life and taught me a lot about being confident, knowing how to speak in front of lots of different groups, being on a time constraint and giving yourself time.  And, the one I’m struggling with the most, being ok with making little mistakes along the way.  I don’t want my audience to notice or feel bad for me based on what they see.  Here are my speeches 5 through 7.  I hope you enjoy them, and I would love any feedback you have for me.  Don’t be shy- it’s how I learn to become a better toastmaster.  So think about how you can create a new window to your world.  And when you are afraid to try something new, think before shutting the window.  I know that there is going to be a little rain sometimes, but if you don’t try, you’ll never get the chance to see the sun poke through.  I hope it’s sunny through your window wherever you are.

Love,

Jessi

P.S.  Here are the speeches...

Speech #5

Did you know that over 90 % of communication on a daily basis is non-verbal?

Yet, we are intimidated by those who communicate differently than us.  Don’t be!

Let me give you some examples of non-verbal communications we use every day:·   When you email or text a friend, both are forms of
non-verbal communication.·   A simple smile or frown to a friend is also non-verbal communication.

Other forms of non-verbal communications are:·  American Sign Language

You’d be surprised how
many famous people communicate non-verbally.

Two that come to mind are:·   Stephen Hawking, the British physicist, who communicates using a voice synthesizing device.·   Roger Ebert, the PBS and
Sun-Times movie critic, uses a different synthesizing method.

Now would you be intimidated to communicate with them?

 Of course not!

So why should you be intimidated to chat with any of my friends who communicate non-verbally with the world?! 

-----------------------------------

Let me introduce you to
TWO of my best friends:

First, meet Halley.

Halley is a college student who is studying communication and wants to become a motivational speaker (like us Toastmasters).

She composes her speeches with her index finger on her computer and uploads them to her Dynavox augmentative device which verbalizes them.

For conversations, she selects the right words or types them in letter by letter on her Dynavox.

---------------

Second, meet Chris.

Chris uses a “Pathfinder” picture-oriented augmentative device to construct sentences.

He selects pictures, or types in words one letter at a time, and the device speaks them.

Chris has not yet decided on a career but he likes performing and to be around children.

As I tried to show, both of my friends communicate non-verbally in different ways.

If you met either of my friends on-line, you’d never know they use communications devices as their primary form for communicating.

Don’t think that they are not smart  just because they communicate differently.

My thoughts are best summarized in a quotation
I found on-line: 

Don't judge me
until you know me. 

Don't underestimate me
until you challenge me. 
And don't talk about me
until you talk to me! 


Speech #6

Imagine you are in a doctor’s office. 

Blah, blah, blah, blah… 

EXCUSE ME, Dr. > HELLO
I am here. 

Dr.  Dr.  Do you see ME?

I know you see this metal 

, 
but do you see ME?  

I know I am small, 

but do you see ME?  

I know I might look like a complicated case, 
but out of this chair I am a just person like you. 

Now do you see ME? 

I want the best for ME. 

I work like you work. 

Now do you see ME? 

I went to college like you. 

Now do you see ME?  

I have a family like you. 

Now do you see ME?  

I have friends like you. 

Now do you see ME?  

Do you really see 

Jessica Laurel Martin?  

---------- Transition from Opening to Body --------

Mr. /Madame Toastmaster, Fellow Toastmasters & Guests.  
What I just described is what I wish I’d said to one of my doctors  but was too
lady-like to say it. 

During that visit, he talked only to the person who accompanied me  and not to ME! 

Did this ever happen to you?  Of course NOT! 

I am SO FRUSTRATED  when a doctor sees me as a THING and NOT as a PERSON!

I’m NOT a bunch of symptoms!

Young doctors are not taught “sensitivity” in medical school,  or how to address “challenged” people as adults and not as children. 

This whole situation bothered me,  but I’ve come to
realize that unless  I DO SOMETHING about it,  NOTHING will happen! 

So, I plan to make it my mission to speak to future doctors and nurses in training.

I’m going to say simply “Treat disabled people WITH RESPECT!” by talking TO THEM <Pause>and NOT to their caregiver. 

------------------------------------------------------------

Another issue I have come across is when I am in a restaurant. 

Waiters and waitresses
aren’t any better than doctors when it comes to treating me with RESPECT. 

One time I visited my favorite restaurant on a date. 

When it came time to order, the waitress asked my date “what does she want to eat”. 

“EXCUSE ME”, I wanted to say,
“I am a 25 year old college-educated young lady who can tell you what I want to eat
ALL BY MYSELF!” 

Don’t you see ME?

I get SO FRUSTRATED when waitresses don’t TALK to ME 
or don’t SEE ME as a person! 

Or worst, when they offer me crayons to amuse myself. 

Don’t laugh  

This actually happens to me quite frequently when I
eat out with my parents! 

Would this ever happen to you while you were dining out? 

Of COURSE NOT! 

So why does this happen to someone like me!

I WILL “fight back” by going onto yelp.com or jjslist.com to 

critique businesses on how
well they treat people like me.

------ Transition from Body to Closing -------

Tonight I vented my frustrations with two personal stories illustrating when I was NOT SEEN as a PERSON!  

I also shared how I plan to get doctors and waitresses to “Treat disabled people WITH RESPECT!”  Do you see me? 
Mr. /Madame Toastmaster


Speech #7

Mister/Madame Toastmaster, Fellow Toastmasters, & Guests.

Today I am going to·   Start by telling you
who is a PEZhead.·   Continue with a brief history of PEZ candy and its dispensers that I researched on-line.·   Then, why I started collecting Pez dispensers and
became a PEZhead.·   And end with pictures of my favorite dispensers in my collection.  

Slide 2 - PEZhead----------- transition Opening to Body --------

A PEZhead isn’t just anyone who collects just a few
Pez candy dispensers. 

A PEZhead is someone who is fanatical about collecting every Pez dispenser ever made

Like me! 

Whenever I go/step into a candy store,  I am immediately drawn to the Pez section.

Slide 3 - Squeal

I squeal with excitement if my brother or I find one I don’t have.

Pez candy was invented in
nineteen twenty-seven by an Austrian candy maker. 

That was the same year that Charles Lindbergh flew solo across the Atlantic. 

--- Pfefferminz slide---

The name P-E-Z comes from the first, middle, & last letters of the German word for Peppermint –
 Pfefferminz  -- which was its original flavor. 

Pez was originally packaged in small, hand-held boxes similar to modern Altoid tins and sold as an alternative to smoking. 

--- Plain-top Silver dispenser slide---

The first plain-top dispenser  which was invented after World War 2,  was shaped like a BIK cigarette lighter. 

Some of you carried one as a kid.

Slide 6 – PEZ poster

Pez first came to the US in nineteen fifty-two during the Korean War. 

--- Santa & Mickey dispenser slide---
Three years later, the Pez Company added character heads like Santa Claus & Mickey Mouse on dispensers, <& marketed the smoking mint to kids as candy in new flavors. 

That same year, McDonald’s drive-INs started popping up across the US. 
umpkin head Slide
When I was 8, I was given my first Pez dispenser, Pumpkin-head, & began collecting Pez dispensers because they were inexpensive and unbreakable. 

I still collect them today because there are so many colorful old Pez dispensers, 
& new designs every year. 

I have over five hundred individual dispensers or collector sets in my collection. 

Among my favorites are:

A 2009 “Wizard of Oz” 70th anniversary collector set. 

A 2010 “Snow White & 7 Dwarfs” collectors set; set slide

A 2007 80th year limited edition set ; 

And a “Hello Kitty” collector set. 

Among the ones on my birthday wish list, are: 

ET set slide\

A 1982 limited edition set. 

A limited edition set; 

Or any new 2013 designs. 

Today/Tonight I began by defining is a PEZhead. . 

I continued with a of PEZ candy and its dispensers. . 

I then told you collecting and became a PEZhead. 

And ended with of my favorite dispensers, 
and some on my that I am fanatically hunting to add to my collection. 

Don’t I have a ? You too could be like me! 
Mister/Madame Toastmaster

"The Absolutely True Story of One Amazing Girl... You!"

Dear Readers,

I would like to share something with you that is not necessarily my own words, but I found it very moving and I got it from my grandma, nana.  Many people make fun of older people, but I don’t think that is fair because when you really think about it, they have been around longer than you have and are wiser beyond their years.  This particular card came to me at a time when I was really struggling with something, and it is like she had ESP.  

The card reads, “Once there was a girl... And she was unique and talented and interesting and amazing and unforgettable... And real.  And she knew, deep down, that if she tried something and things didn’t go as she had hoped or wanted or dreamed or planned, she could just try something different or try the exact same thing again but approach it in a new or different way.  Then, one day, her greatest hopes and dreams actually became true... And so her life was full of all these amazing and unforgettable moments and events and circumstances: incredible wins, of course, but also equally incredible- and worth it- losses.  Because no matter what happened, she learned from everything around her and everything she went through.  Yes, she fell sometimes (like everybody else does), but she got up and moved forward by always being true to herself... And maybe one day she will even make a path for others to follow... Until they can make their own paths, too.  You see, it’s not that she was never frightened or sad or even knew when she woke up each day what to do(no one does). It was simply that she believed in herself and always shined on like a star.  Just like you.  You are one amazing girl.”

It is things like that that make me appreciate the little things in life, like a card, a kiss or a hug.  My grandparents, or nana and popa as I call them, were supposed to arrive with my cousin Justin this Friday from Arizona.  But due to my grandpa’s toothache they are scheduled to arrive sometime next week.  So please keep good thoughts in mind for me that they arrive safely so that we can enjoy the wonderful summer with them.  

Just like the characters in Glee and many people graduating from high school and college, I am going through some changes once again at the apartment.  But, unlike the saying says, “I have a bad feeling about this” , I have a good feeling about this.  And, for the first time in my life, I am happy with change.  Yes, Jessica Martin is happy with change... Don’t fall over Mom!  I would like to explain why I like Glee so much.  It has taken me awhile to figure it out, but I struggled very much in high school, both academically and socially too.  And though I had a few friends, I never really had a place where people understood me and I think it is wonderful that the characters in Glee have a place where they can go where people understand them for who they are.  I wish more high schools had that as opposed to one place for the jocks, one place for the singers, one place for the dancers.    

Happy Summer.

Love,

Jessi

What is your outlet

    One of the things I am beginning to realize is that for me, three things stay the same.  Change, my love for dance and my supportive family, in no particular order.  This month has brought me a lot of hard times that I have had to overcome, but two of the things that have helped me stay strong is my supportive family and my love for dance.  Even though I wish no hard times on anyone, I am glad that they happened when they did because I had dance.  My love and my passion for dance was a way to keep my mind off of everything and was my way to soar in my own little world, even if it was only for an hour and a half.  My family and assistants were very supportive in taking me there because they knew it was my way to be free.  And the best part of all this is the month will be able to finish in a performance.  That to me, is just the icing on the cake.

    It is like saying “Jess, I know you’ve had a hard time, but you deserve to show off what you’ve been feeling and working on for so long.”  This is what I mean when I say “icing on the cake”.  So thank you to Momenta for allowing me to have this opportunity.  I have also decided to include my fourth speech from toastmasters because it is about none other than dance.   

Soar Like a Butterfly

I go into the elevator.

The minute and a half it takes to ascendfeels like an eternity 
I am so-O excited for what’s
about to happen. 

I know that after these LONG 90 seconds,

I’ll enter into my OWN little world, 

Where I can express myself however I want.

I’ve just described how I
feel when I am about to begin a
PID class. 

If you heard my Ice Breaker, you might recall that PID stands for Physically Integrated Dance. 

But I didn’t explain·     what PID is; 
·     why PID is so special to me ; 
·     Or how I feel while performing.

A thousand words can’t adequately describe a PID performance, so you’ll have to wait until Speech #8 to see a DVD of a dance I choreographed. 

As defined in the active wheelchair user’s magazine New Mobility, <“Physically integrated dance is performed by people with and
without disabilities, together on the same stage or as part of the same piece of choreography” 

PID blends contemporary, modern, & ballet dance styles together. <

PID is so special to me because ever since I was a little girl, dancing has always been in my blood. 

I would dance for hours in my room and on my family’s driveway on nice days dreaming I was a ballerina.

I was always disappointed that I couldn’t attend regular ballet classes with my friends. 

Instead I went to dance classes with other “physically challenged” children that incorporated upper body movements from ballet, jazz and modern dance. 

Even though I had a BLAST, 
I never quite found my niche 
that is until I discovered
Physically Integrated Dance. 

In my PID class, dancers with different challenges such as Down’s syndrome, Epilepsy, and mobility perform together with able-bodied dancers in choreographed routines.

When I’m in my PID class,
I don’t feel different. 

For an hour, my PID class sets
me free from my wheel chair. 

Like any performer, I still get nervous before I go on-stage.

But as soon as the music starts,
my nervousness fades 
as I relax and enjoy myself. 

When I perform PID, I feel FREE!

This is because all my worries
are taken away. 
·     I feel like my wheels are just propelling my movement; 
·     I feel like a bird set free
from its cage; 
·     I feel like a butterfly ready to open
 its wings and SOAR. 

Tonight I shared with you my love for Physically Integrated Dance.

1) First, I shared what PID is; ?
2) Second, I shared why PID is so special to me.  

3) And Third, I shared how I feel while performing. 

I hope I’ve shown you tonight how anyone can SOAR like a Butterfly in the world of Physically Integrated Dance.

And how, in the words of one of the Jackson Five’s big hits, to become a “Dancing Machine” - like me!!


    One of the reasons why I love dance so much, is you don’t have to say a word to express how you feel.  On the other hand, one of the reasons I love toastmasters so much is you can say EXACTLY how you feel.  It is a platform for me to get my feelings out even if it is in an indirect way.  And finally, I love writing and sharing with you because it is a way for me to share with the world how I feel.  I never know exactly who is going to be reading this or who is going to be touched by this, and the unexpectedness is what makes me excited to write.  So, think about what your outlets are, what makes you who you are, and what helps you get through the day.  Mine are dance, writing and preparing speeches.  For those of you who haven’t seen it, below is an article that I was interviewed in for the Des Plaines Journal that I was interviewed in last Wednesday.

www.journal-topics.com/lifestyles/article_dd0cda1c-8d90-11e1-accd-001a4bcf6878.html   

    This month, think about whatever your outlets are, whether it be the same as mine or totally different like soccer, singing or playing an instrument.  Trust me, it will help you.  So I am going to keep on dancing, keep on writing, and keep on participating in Des Plaines Toastmasters Club 1645.

Your dancer, writer, choreographer and speaker,

Jessi

Teamwork!!!!

One word that keeps popping up over and over in my head is teamwork.  For instance, whenever I lose an assistant, we have to work together as a team to figure out what the next step is.  I know from that point on, it is back to the bench and back to square one.  These times are tough, but I know I can always depend on the team for support and guidance. This will continue throughout my life.  
    Yes, it is not an “athletic team” but we work together in the same way as a traditional team would, for the better cause, to make things right for me.  Another example was on Tuesday when I had to take my second pair of wisdom teeth out.  I had to work as a team, tell the doctors briefly about cerebral palsy and my movement patterns, so they would know how to best help me. Mina (my day assistant) and I had to think outside the box because she knew I needed the x-ray done but I knew from last time it wouldn’t work in my chair.  So once again, we had to work as a team and be teachers to figure out a way I could get the x-rays done out of my wheelchair.  I ended up standing up with Mina behind me.  
    What I have learned over the years, it is all about flexibility and understanding.  I don’t get frustrated when I have to teach something to someone new; however I do get frustrated when the people I am trying to teach are not understanding of my limitations and think there is only one way to do something.  A lot of the time this is thought by doctors and professionals.  If there is one thing in the world I could teach professionals, it would be to be open minded.  Not every patient of theirs is going to fit the mold they are expecting.  So, it is all about teamwork people:

T-E-A-M-W-O-R-K!
Love, Jess

Do you see me?

For this month I have decided to include my third speech from Toastmasters and a poem I have created based on an experience I had this month.  Dr.  Dr.  I know you see this metal, but do you see ME?  I know I am small, but do you see ME? I know I might look like a complicated case, but out of this chair I am just a person like you.   Now do you see Me? I want the best for ME. I work like you work. Now do you see ME? I went to school like you did. Now do you see ME?  I have a family like you.  Now do you see Me?  I have friends like you.  Now do you see Me?  Do you see Jessica Laurel Martin?



the word of the day.


“Sticks and stones may break my bones, but words will never hurt me.”



How many of you remember this phrase?



How many of you believe that words can’t hurt you?



·   If I mention the “F” word, how many of you know to what
4-letter word I’m referring?

·   If I mention the “N” word, how many of you know to what
6-letter word I’m referring?



·   If I mention the “R” word, how many of you know to what
6-letter word I’m referring?



All too often on social networks like Twitter the “R” word is too frequently used without thinking of how hurtful it might be to a reader.

--Body --

By now I hope I have piqued your curiosity as to what the “R” word is.    It is “retard”.



Forty years ago it was “politically correct” to refer to people who were intellectually or developmentally challenged as being “retarded”,
but not anymore.



Unfortunately that 6-letter “R” word is still being used.

According to the website thesocialchallenge.org, people use the “R” word more than 25,000 times daily in just tweets.



The “R” word is very degrading to individuals who live daily with an intellectual or developmental disability, and to their families.



Individuals registered on thesocialchallenge.org website can combat the “R” word by monitoring its usage in Tweets then respond with a comment to get them to stop using it.

This “confrontational” method has been effective because tweets containing the “R” word have decreased.

---- Closing ----

What can YOU do to purge the use of the “R” word?

1.     First, work at trying to eliminate the “R” word from your own vocabulary!

2.    Second, join me ; on thesocialchallenge.org website to challenge tweets containing the “R” word.

3.    Third, as Corey Smith’s song title suggests: “Be the Change and Make a Difference” ; for people with intellectual and developmental disabilities!

Finally, I’d like to reemphasize that, “Sticks and stones may break my bones, and the “R” word will ALWAYS hurt.”
Thank you for seeing me for just  me!
-Jessi 

DREAM BIG

       Just a few short years ago after a relationship went from bad to worst like every young woman I was beginning to think that the whole relationship thing wasn’t for me.  In fact I was quite comfortable being single, that was until I met Ryan. 
        I’m not writing this to tell you about our relationship but remind you that it is ok to dream.  Whether you are 9 or 92, we all should dream.  It is what makes life exciting.  I have learned that not every dream comes true but unless you try to put it out to the universe nothing will happen.  
        This is a story that I tell almost every time I work with a family.  It goes like this: Many years ago a girl named Judith Snow was having a meeting to plan for her future and knowing that she really only had the use of one finger. They said "what do you dream of becoming someday?"  She replied, "I want to become a truck driver."  Instead of her parents saying no you can’t do that they said "ok Judith what is it about being a truck driver that you think you would enjoy doing?" She said "I want to make a difference in the world.  I want to deliver goods to people.  I want to feel in charge."  
          As a result of that meeting she is now a worldwide speaker traveling around making a difference, and she is in charge of her own schedule and personal assistants.  Yes she is not literally driving a truck but she is doing what she wants to do, just in a different way. 
So the next time you really want something to happen be patient and dream BIG. You never know what will happen.

Jess