The best way to understand Next Step is to hear about it straight from the young people who have experienced our mission at work. Their words convey better than anything else the extraordinary growth and personal progress that is possible for a young person—even in the face of serious illness—in an environment of support, advocacy and empowerment.
Check out the following stories to better understand the power of the Next Step experience.
Claudine
I was really excited to leave home for a week to attend my first Next Step Summer Campference, but I was a little nervous, too, because I didn’t know what to expect. Once I joined their Task Force (Summer Campference planning committee) I was able to connect and reconnect with peers, which helped me feel prepared. There was so much positive connection going on that I could not resist—I knew that I made a good decision for myself.
Next Step gets it! They have the ability to understand what’s important in my life. We have fun and we have real talks. I am not treated as a child. I am respected as an adult and very well-supported around my decision making.
I have become confident and knowledgeable around my HIV status. After spending time with a group of peers that are at Next Step for the same reason, I learned that we should not sit in silence and guilt. I have learned how to advocate for others and myself. I realized that this is a place of comfort to find my self-acceptance.
I know how important it is for me and my peers to have each other. Next Step has given us the opportunity to create a space where we can share stories. This has become a huge part of my life and I have learned so much from these interactions. Next Step and the other participants have inspired me to go after my dreams.
Next Step has helped me realize that I may have an illness, but it’s just a small part of me and I am much more than that.
Matt
I had never been able to connect meaningfully with my peers about my experiences with cancer because, although they loved me and were glad I was better, they didn’t get it. When I walked through the doors at Next Step’s Summer Campference, I knew that I had found a group of people that get it. Even if it’s just a casual head nod from your cabin mate as you sit down to breakfast, there is a solidarity and connection that goes deeper than any other peer group I have had before.
Other programs are too sterile. Next Step has a level of reality to it that is refreshing and makes me feel that I am being respected as an adult and an individual. I don’t like to be talked to like I am a child, and Next Step meets me at the level that I need. We have real talks, we have real fun, and we make real friends.
Next Step has helped me to look at my illness in a different light. I’ve learned how to more effectively advocate for myself. I’m not just a sick kid anymore; I’m a confident adult with something special to give to the world. I have learned that there is power in breaking out of silence and singularity and joining a group of like-minded people that share a common cause, goal and ethos.
I attended my first Summer Campference in July 2013 and have participated in two further Campferences. I also worked as Next Step’s social media intern. Next Step and all the participants have made me see that I can achieve real, concrete things regardless of my diagnosis. They have inspired me to go after my dreams, and have supported me to that end.
Khadijah
I was 10 years old when I had my first pain attack. I felt like no one really knew what I was going through until I went to my very first Next Step program: STRIVE —an after-school program for high-school teens living with sickle cell. This program gave me my first experience talking with other kids about our shared diagnosis.
I remember one time where one of my peers randomly announced during a program that “sickle cell sucks,” and he “wished he never had it.” This was a hard moment for everyone in the room, but what happened after it was awesome. Because of his sharing, our group started to have a real conversation about what it meant to have sickle cell—how many school days we missed, what meds we were taking and how we coped when we had pain. Everyone shared and, most importantly, we never had to justify our experiences or feelings. We just got it. I finally felt like I wasn’t alone.
A few years later, I had a chance to attend a Summer Campference where I became more comfortable with my sickle cell and felt empowered to manage it in a more effective way. I plan on taking all of the techniques and good times from Next Step with me to college and hopefully beyond that, leading me to living a successful life with sickle cell. As a recent high school graduate, I’ve proved to many people that just because this disease runs through my body it doesn’t run my life. That moment at Next Step helped me start to understand this.
Ike
I look “normal” but my life is anything but normal. I have sickle cell disease. Just imagine the worst pain you ever had and that it could strike at anytime, anywhere, in your body. Growing up, I needed more breaks—at school and during sports—or risk being hospitalized. My sickle cell left me feeling alone and hopeless—life was just too hard.
I started to fall behind in school and desperately needed extra help. That’s when my parents signed me up for STRIVE, Next Step’s after-school academic mentorship program for teenagers living with sickle cell disease.
It changed my life.
The mentors at Next Step showed up for me in a way I had never experienced. For the first time in my life I realized that there are people outside of your family who will fight for you. They listened—really listened—and made me feel safe and supported. Working with them, I learned to own my story and become the author of my “whole story”, and just the story of my chronic illness.
My mentors, many of whom also live with a chronic illness, helped me understand the importance of managing my health effectively in order to achieve my life goals. I started to trust myself with my new skills and knowledge, and to feel more confident in my ability to face my personal obstacles. Because of the support of my Next Step mentors, Ike the student, the athlete, the football fan, the brother, started to define me more and my sickle cell a little less.
My future feels brighter because of the life-changing support I received from my Next Step mentors.
Sharde
Cancer had split my identity in two. There was the proud, self assured, professional dancer, pre-cancer Sharde. Then there was the lonely, isolated post-cancer Sharde—feeling weak and useless. As a young adult, I should have been gaining my independence and thinking about so many exciting; overwhelming things from dating to my blossoming career. But with cancer riding shotgun, I found myself feeling desperately isolated—with everyone passing me by.
It was at my first Next Step residential Summer Campference that I found a community of my peers that shared many of my cancer experiences, and knew exactly how I felt. With these other twenty-somethings I could hug, cry, and share really dark jokes about our cancer diagnosis. One day, I confided to my fellow attendees that I was struggling with my new post-cancer Sharde identity. I told them about a conversation I had with my best friend back in Detroit about my struggle and how I felt like I lost so much of myself that I trusted and took pride in. The reaction I got was, “Well, we never met Sharde before cancer—but we think THIS Sharde is really awesome.” That simple response changed me, and my path, for the rest of my life.
Then the hard work started. I had to learn to accept and love me—the “me” I’d become after my cancer diagnosis. It was within the Next Step community that I learned through everyone’s respective stories, unique, yet not dissimilar, that my personal journey with cancer would be paved by the testing of my audacity—my willingness to be bold despite the circumstances to rebuild my self-identity and take back control of my life. The transformative community at Next Step provided the safe space and opportunity for me to not only survive, but also thrive, in the face of my diagnosis.
JP
In 2013, I was diagnosed with a cancerous brain tumor and had to withdraw from Berklee College of Music. It felt like my life was falling apart. I was no longer able to go to school or work. Cancer and treatments became my life. I was disempowered and isolated. Cancer was hogging my life “microphone”; leaving me without a voice, a self-identity I could trust, and my life purpose of playing music professionally.
I knew I needed to figure myself out and learn what was possible for my future. Then I discovered Next Step’s Song Studio program, and met their music therapist, Kimberly. In Next Step’s recording studio I began to feel freedom from my cancer diagnosis. Music helped give a voice to issues that are often too difficult to talk about like isolation, depression, disappointment, loss, fear and pain. It was the chance to express myself in a way that was constructive, creative and actually fun. I wrote, arranged, performed and recorded my own songs—all while rediscovering who I really was and what I could become.
Listening to the music I created with Kimberly helped me understand what I really wanted for my post-cancer life. Next Step’s Song Studio program helped me set life goals that made me proud and helped me envision a future that I never thought possible. I also learned how to advocate for myself by writing and listening to my original song lyrics. This music therapy process gave me the knowledge and life skills to move forward in life. Yes I had cancer, but that doesn’t define who I am.
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