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.

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