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"BLIND COUPLE OVERCOME OBSTACLES, WILL MARRY IN MAY"
Wally and Christy feel they have a lot
to be thankful for. Though both are legally blind and physically
disabled, they’re excited to celebrate their upcoming nuptials.
"Getting Back to Me"
This year has been a full of challenges, disappointments and discovery. Despite the growing fear in the pit of my stomach I decided to take a leap of faith and move out of the nest.
August 25, 2010 was the day that life as I knew it changed. It’s surprising how much a person can change in just a year. When I moved out I expected the expenses but anticipated the freedom of decisions. I didn’t expect the changes within myself. As a teenager, I knew relying on other people for my basic needs was difficult but didn’t realize the difficulty of finding reliable workers.
It has been a year of lessons. The most important was not to trust everyone who seems to be your “friend”. Shortly after moving, workers were not showing up and coming and going as they pleased. When it comes to school, if I’m not in control I feel lost. I also have high standards. Unreliable workers led to other things slipping from my grasp.
I looked in the mirror and saw someone that I did not recognize, I had no idea what to do. I managed to finish with decent grades and was thankful for summer break. Little did I know, something big happened that was going to make a big difference.
In April 2011, my cousin Ethan was in a motorcycle accident, taking away the function of his legs and most from his arms. Ethan’s questions allowed me to view my problems differently and made me realize I don’t have to be consumed by stressful situations. The words, “God never gives us more than we can handle” have never meant more to me. I appreciated meeting Ethan’s friend Steve, who was in a motorcycle accident 4 years ago, losing feeling and function in part of his body and half the feeling in his arms. He still plays songs he played before his accident. Watching him play made me realize how much I miss the things I love the most. I don’t know if I will ever be able to thank these men enough. The moral of the story, it is important to keep an eye on the prize, while making time for the things you love. I’d like to end with a quote that will stay in my mind forever, “the choices you make are the challenges you face”-Steve Mireau:-
"A Few Thoughts on
Political Correctness and Disabilities"
Today many disability advocates emphasize the use of language that is sensitive to people with disabilities. While I support this idea, some individuals without disabilities have become very self-conscious about this language. Many people insist on using person-first language even in informal conversations. Although I think person-first language should be used in writing, I do not think it should always be used when socializing with family or friends. For those of you who are not familiar with the first -person concept or simply need a refresher, this means that a person is described first as an individual rather than using the disability to identify such person. For example, instead of saying “my blind friend,” you would say “my friend who is blind.” I happen to be totally blind, hence the use of these examples.
First-person language is helpful. For one, it communicates that people with disabilities should be known as people first, not as disabled people. This is creating more awareness among the general public that people with disabilities should be treated equally and that we need to be recognized for our accomplishments, not for our limitations.
Although the advantage of first-person language is significant, I also think there might be a disadvantage. I have encountered many people from the general public that constantly insist on using politically correct terms to describe disabilities. Furthermore, I have heard people come up with their own terms just to be politically correct. These include “the differently abled” and “people with different abilities.” While it is great they want to be sensitive to people with disabilities, people should not be too strict about this terminology. After all, those of us with disabilities often forget about political correctness.
Most of us do not speak in first-person language when we are hanging out with friends or family. For instance, when I am relaxing with my friend Katie (who has Cerebral Palsy) we do not spend the time talking about our disabilities. However, if we do have to mention them, we will use terms like “I’m disabled” or “my blind friend.” Since we are comfortable with each other we even joke about our disabilities by using words like handicapped or crippled. Katie and I always laugh at these jokes, but we agree that it is perfectly acceptable to use this type of humor since we have known each other for over 12 years.
People should continue to use person-first language, but only in certain circumstances. I think that in the long run this will continue to help people with disabilities because society will realize that we should be known for other characteristics, not just our disabilities. However, people should not be too strict about political correctness. It is ok for everyone to be informal with disability language at times. In other words, society does not have to always be self-conscious about politically correct terms. As long as we do not use offensive language, it is ok for us to use terms that describe disabilities.
"CREATING M.C.S. AWARENESS ONE DANCE STEP AT A TIME"
I have a disability called Multiple Chemical Sensitivity. Recently I participated in a World Wide Dance Video project where people from across the globe were asked to dance a dance written by Ira Weisburd called Shuffle Boogie Soul. It is the current number one dance in the world, danced to the song Honky Tonk by Preston Shannon. The goal is to make one large dance video. They featured my story next to the KY video and received such a large response from around the globe as to how I sat out of dance for 15 years because of reactions to chemical and scented products, that they started the Breathe Freely Campaign to create an awareness about MCS. One instructor in California e-mailed my story to his entire class as one of his students also has MCS. Another lady e-mailed me to tell me about the instructor, and said she couldn't dance because of it as well. The word began to get out and people with MCS started to "come out of the closets" so to speak. It's about time MCS received this type of coverage as we are the forgotten disability...the one no one wants to talk about. That fact in itself has caused immeasurable emotional and sometimes even physical pain amoung those with this disability due to lack of accommodations. To view the Breathe Freely Campaign they started for us, go to--- http://www.hannaian.com/sbsvideos/breathefreely.html My story is a few down below the MCS information and attached to the left of the Kentucky video. This year as a result of the Breathe Freely Campaign, the group that filmed our KY video had unscented candles at our Christmas Party to help limit my chemical exposures. I was grateful as I am unable to attend most parties and gatherings because of exposures to products others use. MCS is a very isolating disability. While I can not partake often in dance, these accommodations certainly allow me to occasionally enjoy life once again. Dance has always been my life's passion, and MCS awareness is a close second. For more information about MCS and chemical injury contact Chemical Injury Information Network at email@example.com. This is a wonderful disability campaign that is being spread across the world. - Melva Smith (The Chemically Sensitive Cowgirl from KY) January 2011
Hello, My Name is David Krafcik. I am a disabled artist living and working in the Celo section of Burnsville. In 1980 I had a severe automobile accident and was diagnosis that I would never walk again. My determination and extensive therapy allowed me to walk again with the aid of crutches. In 1987 I started my business Visual Dialogue. I was making stamps out of linoleum and designing clothing. I would travel every weekend to Arts & Craft shows all over the state of Pennsylvania and New York. In the winter I would set up kiosk in malls and Air- Brush every thing and anything. My wife and dog, Oakly, and I moved to Saint Augustine Florida to start an air-brush business. In 1999 I applied for and received a disability grant from the State of Florida. With that money, I started my glass etching and carving business. I first started etching designs on door windows and then started a line of animal carvings in glassware. The animals were part of two books that I am writing called “The HUSH Archives” and The E-ERTS Log”. I sold these to shops in and around Florida . When I turned 50 I got tired of running from my disability. I wanted to show that you can still be disabled and still be a contributor to society. I started to do research to find disabled people making art and being in the art. I could not find that many. So I started a series of Reverse Glass Paintings called "Beautifully Broken". I want people to see that the disabled have a place and a role in not only making art, but being in art. The series feature images of me with my crutches in an abstract expressionism mode. In 2009 it was time for a change and we sold our Florida home and moved to the beautiful mountains of Western North Carolina. Here I still have a burning desire to show that the disabled have a role in society. I am still etching and carving glass and pursuing my dream to get in a gallery with my Reverse Glass Paintings to get the world to understand how hard it is for a disabled person to show society that they have a place in a world of non-disabled people I now have some of the work in a gallery in Asheville called Atelier 24 Lexington and in my gallery in Celo. What I hope comes of all this is to show that the disabled have a place in the non-disabled society and hopefully to encourage others with disabilities to pursue their dreams as well.
“Pressures of Success”
The pressures of success are heavy. Especially to those better known as people pleasers: people who put everyone else’s happiness before their own, assuming with the satisfaction of others, they themselves will be satisfied. Believe it or not, I was one of these people. Coming from a broken home and not having the best relationship with my father and step-mother, I’ve done everything possible in my young life to make them think I was going somewhere and I wasn’t just a couch potato waiting for everyone to do everything for me. I always thought that if I could just keep the peace with everyone around me, then everything would be fine and I could just keep that big fake smile on my face.
While in the time I spent at UW-Stout, I not only met a variety of people and learned a lot from them, but I learned a lot about myself. In talking to a friend that has many of the same challenges as myself, I learned that if you live for everyone else’s happiness, it will eventually kill you. This became reality for me, not only with my daily life challenges but in particular, my dreams of going to college. I’ve constantly been told that I would not be able to make it through college, and I have to admit there were times when those words sounded like reality. Eventually I began to realize that I have to live my life the way I want to and not pay any attention to the reactions I get from others around me. Though this task isn’t the easiest and will be something that I will continue to work at on a daily basis, it is one of the most valuable pieces of advice a friend could ever have given me. DVR (Department of Voc Rehab) have repeatedly used money as an excuse for me not to continue my education. Long story short, I qualified for unsubsidized student loans and when DVR found out, they continued to say they weren’t helping with any of my educational finances. It just goes to prove my point that you have to live for yourself and not live for what other people are expecting of you. In the words of the brilliant man who created this website: “If you don’t need someone and can find your way without them, tell them to go to hell.”
(note: CAP (Client Assistance Program) in Wisconsin should be able to resolve continuing education money issues with Vocational Rehab. for this writer. )
"Changing Point of View"
Most of the time I’m an open book when it comes to my disability; Although there are some experiences in my life that are difficult to share with others, I find sharing my story can lead to other people giving their perspectives on situations and possibly changing mine. Even though I have attended a camp for people with disabilities for almost thirteen years, my views on how to deal with the struggles that come with having a disability were still very narrow, even at eighteen. I thought if I could make everyone else happy that I would be happy.
However, my perspective has been altered during the past year that I have spent at the Transition Partnership School on the UW Stout campus where I met a variety of people with different disabilities. While making adjustments to this new environment I met a young man that has a disability similar to mine and my first thought was “How can you be closed off towards other opinions?” I didn’t realize how parallel our lives ran until we set aside our differences in opinion and recognize the similarities.
I grew up with a very supportive family for the most part; while he grew up “on the wrong side of the tracks”. The more time I spent with this young man, I learned you don’t always have to paste a smile on your face to hide the fact; things aren’t going the way you plan. There are many things that this person went through that I could never imagine going through; let alone not having the support of family while going through those challenging experiences. When I heard his story it twisted my stomach into knots. I couldn’t believe what he had gone through and had the motivation to go to college instead of wandering the streets. Often, he’s told me not to look at him as a saint because he’s done many things in his life that he’s not proud of, but he has made an impact on my life that has caused me to rethink my path in life as well as how I handle when people try to steer me in a different direction. This friendship as well as other experiences in the Transition Partnership Program has made me into a different person. I don’t know how I will ever be able to repay any of the staff for that.
May 2009"There is always something to learn"
By Ashley P.
Walking into any public place, or even a family gathering, can be a learning experience for everyone present. You are always going to have that person who thinks that just because you are disabled you are completely incapable of speaking for yourself. There are also going to be those parents scolding their children for asking questions, which is exactly what they should be doing. One of the more personal sides of having a disability for me is the relative that thinks you are a china doll. You see this person wrestling with the other nieces and nephews and wish that it was you who they were wrestling with.
Some people say that educating about disabilities starts with the younger generations. However, I believe that it is never too late to “teach an old dog new tricks.” I believe that just introducing yourself to someone can make a difference in their life. To make a long story short, I was invited to a family member’s wedding. Before I had even met these wonderful people they were asking my stepdad how he dealt with me having a disability. They just could not imagine what it would be like. I walked into the church that day not knowing what to expect. Of course, since I had already met some of my stepdad’s family I had no doubt that they were going to be very friendly. As friendly as they were, I could tell that they were still a little nervous. I was bombarded with quite a few questions, all of which I answered with a little humor, as well as with the truth. By the end of the night, I ended up with some very sore feet from being picked up by one person after another. I was afraid at first that if I said “no” to dancing with someone, that they would all think that they were doing something wrong. Eventually, I did have to stop. I was having so much fun, but I was afraid that my feet were going to fall off!
Not to sound long-winded, but I guess what I am trying to say is that it never hurts to be like an open book when it comes to educating people about disabilities, whether they are young or old. My experience at this wedding, sore feet and all, is a perfect example of this. No matter the age, there is always something to learn.
( Below is an edited article written by an accomplished author Stacey Chillemi)
My Determination to Succeed
The truths and triumphs of living with epilepsy
“Since childhood, I have dreamed of having a normal life. I was determined to make sure that my disorder would not interfere with my goals and dreams. When I was young, others told me that there was a possibility that I might not be able to achieve everything I set out to do because I had epilepsy. Despite what others said, I knew deep down inside that, I could become the person I dreamed of becoming.
…………I developed epilepsy at the age of five. I had contracted a sore throat and an ear infection. My mother had brought me to the doctor's office that evening and the pediatrician had put me on penicillin and told my mother to have me rest in bed. …
…. My mother recalls that on the tenth night when she put me to bed, my lips were more red than usual. The next morning about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She found me in my bed turning blue and having a convulsion. This was the first time I ever had a seizure…….............We also know this type of seizure as generalized tonic clonic seizure………
I was in an induced coma for four days after the grand mal seizure. The doctor had told my parents while I was in a coma that if I were to come out alive I would probably have severe brain damage and there was a good chance that I was going to become paraplegic……
This horrible news devastated my parents, but they never gave up hope. On the fourth day while I was in a coma, my father lay by my bedside and began praying to a saint. My parents told me years later that after my dad finished praying a teardrop rolled off from my eye and down my face and I woke up. ……….Phenobarbital controlled my seizures, until the age of nine. Before I was nine, the only time I would experience a seizure was when I had a high fever. …..At nine, my body began to go through the stages of womanhood. ……Once my hormones started changing, I began developing more seizures. My seizures would occur around the time of menstruation and ovulation. My neurologist told me that I was retaining water on my brain during this time of the month……
I always kept a positive outlook, hoping that I would find the miracle drug to control my seizures.
At the age of eighteen, my seizures were well under control and my neurologist gave me permission to drive a car feeling that my safety was no longer in jeopardy or that could endanger someone's life while driving. I was so excited….Unfortunately, after a few years, I had to stop driving because my seizures began to increase to two or three a month. ……. .I didn’t drive for over 15 years. I felt imprisoned inside my own home relying on my friends and loved ones to take me where I needed to go. For an independent person like me this was very hard for me to endure, but I refused to let my disorder control me. ………
I felt uncomfortable sometimes-asking people for car rides because I know everyone has their own lives to live and responsibilities that they need to attend too. I didn’t want others to feel obligated to take me places when I have to go somewhere but I became better when it came to reaching out to others for help, though I have always been a self-reliant person. When someone has epilepsy or any disability, one needs to realize that you cannot do everything by yourself.
In order for us to do everything we want too, we need to realize that we have to reach out for other people's support and love. Having other people's love and support is a necessity in life. No one can make it through this life alone. My family and friends have helped make my life a lot less stressful. Dealing with epilepsy for once had become easier deal with when I accepted myself and loved myself. No one is perfect, we all have our flaws ………..
Sometimes, having epilepsy has made me feel like an outcast. I have realized in the past couple years that you can do anything they want in life, if you try hard enough and put your mind to it. You need to understand that you can become your worst enemy if you let yourself. YOU CANNOT GIVE UP. You cannot fail if you try. Failure is when you give up on yourself.
It has been tough for me with all the testing and medical let downs, but I focus on the positive and avoid the negative. I have grown as a person from all these experiences both mentally and spiritually.
Mentally, having epilepsy has helped me mature and accept myself for whom I am. Accepting yourself is one of the most important steps to healing. You need to understand that yes, I have a disability and nothing going to change in that respect. But I have special qualities and characteristics that I can share with the world to help others like myself. The greatest gift is the gift of giving.
Spiritually I have learned a lot about myself; I learned what my wants and needs. I have found myself, the real Stacey. I have also learned that one cannot let having epilepsy control my life. Yes, I have epilepsy, but I do not have to stop living. Life goes on! Be proud to be you.
I am determined to live a normal life. You cannot compare your life to someone else's life. If you do, you're going to be unhappy. You need to love yourself and be satisfied with your life. If you're not satisfied than change the things in your life that make you unhappy! ……
In short, there is very little in life that having epilepsy should prevent you from making your dreams a reality…………”
Author Stacey Chillemi http://www.authorsden.com/staceydchillemi
All rights reserved by author with permission for BtDigest to publish an edited copy of my article written above.
Dylan’s "Words of Wisdom"
( written by Dylan Kuehl)
“People who touch our heart”
Friends come and go but the most memorable ones touches one's heart and minds leaving their mark on a soul forever. Nine years ago I went on this incredible journey not knowing where I would end up, or who to trust. I have been hurt so many times by my own family that I just wanted to give up. However I made some good friends along the way, friends that chose to stay and help me through thick and thin. Then there are those acquaintances in one's life belief and short lived altering the course of our existences.
Some old friends visit my mind from time to time like angels remind me of all that I'm grateful for. Patty Cooks is one of those angels. She's a blind, African-American with a quick temper. She has been on my mind for several weeks now that neither time nor distance can take away my feelings towards her. I hear her voice, laughter ringing in my ear, and her pretend crying. I met and became her roommate in my first adult foster care home. "Take me out to the ball game" Patty would sing, then followed by a "Yuck" and sometimes a giggle. She was a little bit strange at first but in the weeks and ten short months to follow I grew to love Patty as a sister giving her a piece of my heart without knowing it as she become another heart sister.
It wasn't too long after I moved in that Patty started acting out. I was afraid of Patty and being kicked out of foster care. She is tall, slim and very strong. So I did everything from housework to laundry to stay. My real sister Cindy didn't want me to live in her house anymore; she just couldn't cope with my depression and my undiagnosed bipolar mother in her initial stages of Alzheimer's.
One day while I was making up Patty's bed and getting ready for work. She pushed me and I fell onto the floor. Patty then started her pretend crying and yelled "Mama" that she calls the female adult foster care provider living with her. I don't think Patty has ever lived with her "real" family. Her family visits consists of a few short hours three or four times a year.
A few months later I started watching Patty. My adult foster care provider Sally became a girl scout leader. I had proved myself to Sally that I could be trusted. So I began to watch Patty three or four hours every Monday night. It wasn't too long that Patty started developing my attitude. "No biggie and You can't make me" were simple phrases but I never knew until Patty taught me that those words could mean so much by giving Patty a choice. For two weeks Patty would use these phrases to say yes or no to people then giggle about it. It was her way of voicing her own choice.
“WITH DOTTIE, I
HAVE MY LIFE BACK”
By Suzanne Ponciroli
I always thought helper dogs were for blind or hearing impaired people. As I began to learn more about these dogs, I realized they also offered a variety of assistance to people with physical limitations.
Service dogs can be trained to retrieve objects that are out of reach; pull a manual wheelchairs; open doors and turn on lights; retrieve help; assisting with dressing or undressing; and assist in many other ways. Some service dogs are specially trained seizure response dogs and there are dogs trained to offer a person counter balance when ambulating. One less tangible benefit is that these dogs can actually expand your world by giving you opportunities to meet people and get out in the world.
My service dog, Dottie, and I take
walks around the neighborhood every evening. Each evening, between 5:00
and 6:00, she brings me her leash wanting to take a walk.
(Unfortunately, rain presents a problem.
Suzanne Ponciroli has lived with the challenges created by MS for over 20 years. She has created a website, http://EmpoweredLivingToday.com and a blog, http://EmpoweredLivingToday.blogspot.com. Both websites contain ideas and aids to help people overcome physical challenges
It was a beautiful, sunny, spring day as ADAPT rolled in a convoy of wheelchairs for two city blocks through the streets of Washington D.C. As a deep, male voice chanted in the background “Free our sisters, free our brothers, free our people now!” Sometimes the male voice would change the chants “To Our Homes, not nursing homes!” To me this was my favorite chant, to tell the world that people with disabilities have feelings and rights just like everyone else. “We are the People…” Abraham Lincoln once wrote for all the people not just some. He freed African American from slavery. Now it’s President Obama turn to free us in the health care reformed bill.
Community Choice Care Act allows people with disabilities the right to choose between nursing homes and their own homes, which makes sense in these economic times. Medicare and Medicaid pays double or even triple the amount for nursing homes making our national debt increase, rather then giving people with disabilities a choice their natural basic right, to choose where and how to live. Community Choice Care Act also stimulates the economy by giving jobs to the unemployed. Helpers, aides, and PA they help people with disabilities lives to make them much easier to live with.
People with disabilities can do just anything --attend college, to live on their own, and get a job to pay taxes to decrease the national debt with the right supports. However most people cannot afford to be helpers, aides, or PA, people with disabilities hire and fire their own staff without benefits. Helpers received minimum wage sometimes paying dues into a union that doesn’t always look out for their best interest.
Before my trip, my helper had a bad toothache. Without insurance her tooth could not be saved. I felt really terrible about it as her employer but there was nothing I could do about it. McDonald’s, Pizza Hut, and Taco Bell can pay their employees nine to ten dollars an hour for fast foods. Why are people with disabilities human beings with feelings and rights are below fast foods? It just does not seem right somehow.
Our wheelchair convoy went to the White House to talk to President Obama’s spokespeople to include the Community Care Choice Act in health reform. They refused so ADAPT took action. President Obama endorsed this act while he was a senator in Congress. What changed his mind? People with disabilities were good enough to believe and vote for him. Now we are not the majority. He is betraying a promise. ADAPT sent a very clear message to him. “We won’t go away!” I got arrested for standing up in what I believe in.
( from an ADAPT member)
“Change is a process”
ADAPT wrote on their website that Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress.
Sen. Tom Harkin ( D-IOWA) stated in a speech to ADAPT members that
they go to their states, their senators and to those offices with their
voices. Senator Harkin stated he is committed to fight for Community
Care Choice Act to be included in healthcare reform and that he will
personally go to the President. We need to continue to give time and
commitment to voicing our needs to our individual legislators so that
the Community Care Choice Act comes to pass as they are the ones
(Congress) that needs to give credence to our voices and needs and act
upon it. We live in a democracy.
"Well I know one 18 year old who has a lot to say. It happens to be Rachel, my daughter. I don't know if it is what you want but her perspective is growing up in a small rural town being one of the only disabled kids in her school. What it's like when friends move on to sports you can't participate in, and the closest outlet to wheelchair sports is 100 miles away. What it's like to be friends with everyone but how they begin to "forget" about you when they start dating and driving cars and all the other things that teens do and you will never do, because of your limitations.
I will never forget, one day she came home and said - -
"Mom I got kicked out of class today"
--and when I asked her why she explained that she was just feeling really good about herself that day and was being silly and popped off in class and said "I feel like Carmen Electra today!" IF you don't know who she is, she is a very busty swim suit model, (not sure what else she does) but every one thought she was freaking out and sent her out of class for being inappropriate. Of all the things other kids say this was really focused on because the teacher happened to know Rachel has Bi-Polar and she was being silly and saying something that seemed out of context. Really she just felt great that day and wanted to be silly and let the world know! How twisted it can all become, when you are a little different to begin with. Most kids would have gotten a good laugh from the other students a frown from the teacher and that would have been it. Rachel was kicked out of class and severely reprimanded for not being "socially appropriate". Go Figure!
Left out, less of a person, no where to fit in, most of the clubs etc. for persons with disabilities in this area really focus on those who have intellectual disabilities and less on those with physical difficulties. Disability in small town America can be quite a challenge. How that has affected her struggle with her Bi-Polar disorder and controlling the depression, dealing with the feelings of hopelessness and loss that she feels are a pretty graphic and moving story.
She was very excited yesterday though as she went to her first day of work development training at goodwill industries. They are looking at her clerical and reception skills to help her build an idea of where she wants to be working in the next few months or so. So she finally feels as if she is moving on with life, at least a bit at a time"
"Leadership conference changes viewpoint"
This summer I was fortunate to learn much about how people with disabilities should be treated. In today's society, you hear many people being called 'retarded' or 'idiot'. Do we really stop to think what these words mean? They are inappropriately describing people with mental illnesses. A simple solution to doing away with such a derogatory image of persons with disabilities is called 'People 1st Language'. It emphasizes the importance of putting the person before the disability. For example, you should refer to someone as a 'person with a disability' rather than that 'disabled person'. Society has come a long way from what people with disabilities used to be portrayed. We as the disability community have also become more independent and willing to stand up for ourselves. I hope that we can continue to educate others on disabilities and earn the respect that we deserve. -Jessy B.