Category: Writing (Page 3 of 4)

When another human being encounters Shane Burcaw for the first time, the natural reaction might be to look past Shane and focus on the high-powered wheelchair that he uses to navigate life. Or, one might be caught looking at Shane’s fragile body, which, at 26 years old, weighs just 73 pounds. Or, one might be guilty of checking out Shane’s sweetheart of a girlfriend and wondering how Shane was so lucky to get a nurse that is so attractive (she’s not his nurse).

It is human nature to be guilty of any of those thoughts or visions, and yet if you are too shortsighted to see past all of that, you miss the best part of Shane Burcaw. The dude has an electric smile and a humorous personality that beams at anyone who will take the time to look at HIM. He’s also more generous and has more wisdom than many people who’ve lived twice as long.

Shane has a rare neuromuscular disorder called Spinal Muscular Atrophy. It’s caused by a loss of specialized nerve cells in the spinal cord and the brainstem. It affects control of muscle movement, which also causes progressive muscle wasting. There is no cure, only treatment. According to doctors and research, death before the age of 20 is frequent.

“Childhood felt natural to me,” Shane said. “I grew up learning about the world and myself from the seat of my chair, rather than walking around like most kids. I’m sure my parents told me about my diagnosis, but the emphasis was always on living a regular life, and on not letting the wheelchair stop me from doing everything kids do…like sports and school…and getting into trouble.”

Shane requires assistance for just about every physical activity, from getting out of bed in the morning to showering and dressing, using the bathroom, eating, and accessing his laptop. Yet he wakes up with a smile every day.

“I’ve never felt like I’m ‘confined’ to my wheelchair,” Shane explained. “I guess in high school I started to examine how my family and I have always used humor to deal with the adversities we face. I’ve always been a pretty happy person, but in high school I also realized that’s because my parents taught me how to effectively cope with any challenges I faced, whether related to my SMA or not. That mindset has totally influenced my worldview, teaching me that negative events only have as much power as we give to them.

“Living with a disability is not a horrible existence that requires me to put on a smile,” Shane continued. “That’s really important for the public to understand. When I do have challenges, like when my wheelchair breaks down, that’s when I have to utilize the cognitive approaches I’ve developed, but in no way is it a challenge for me to wake up happily each day.”

It would be easy to forgive Shane if he did have a chip on his shoulder, or if he was a grumpy Gus and just didn’t engage with people and the world around him. Even though his attitude and his worldview have continued to evolve (in a positive way) as he’s matured and become accomplished in a number of areas, it’s something all can take a lesson from.

“I think it’s really easy to get bogged down by inconsequential problems of everyday life,” Shane said. “It’s natural to get frustrated by the circumstances and the events of life, but it takes some practice to consciously let go of these annoyances and to refocus our minds to more positive places. When something upsets me, I allow myself to experience the negative emotion, but I don’t let it overtake me and create future negatives by brooding on it for longer than necessary.”

I’ve known this for a long time…words have tremendous power. The words that you speak to yourself. The words that someone else speaks to you. Words that you read on social media. Words you read in books.

Most experts agree that the words that you speak to yourself, and the words that others speak to you can, and will, make a significant impact on your daily routine, on how you feel about yourself, on your plans for the future, on your dreams and ambitions. That impact can be positive or negative. Too often, it’s negative.

The way that you talk to yourself (admit it, we all do it) can determine whether you have a good day or a bad day, conquer your goal or fall short, have a positive relationship with a friend or not.

Research supports my theory here, but nobody wants to read about research. But I received a real-world confirmation of my belief over the weekend.

I received a message on LinkedIn from the mother of a former player. I had not seen nor heard from them in four years. The daughter played two seasons of AAU basketball for me, and then they had to suddenly pick up and move from Pennsylvania to North Carolina. I think I heard from the mom once after the family moved.

Her message to me this weekend was to inform me that her daughter, the young lady that I and my middle daughter had coached for two seasons, had made it! She will be playing Division I basketball at Ole Miss starting next year.

For anyone who follows women’s college basketball, that’s the big time, the Southeastern Conference with Tennessee and South Carolina and Georgia. That made me smile a big smile because I knew the young lady had it in her, and it’s always a tremendous blessing for a family when a child can get a college degree paid for.

But the best part of the message for me was the second part of what the Mom said to me.

She said, “I want to thank you for believing in my daughter…we appreciate all you did to help her growth.”

That meant more to me than the first part of the message because that’s all about consistently speaking positive messages to a person. Her daughter was in junior high when I coached her, a very influential time in a person’s life. I recognized her potential, but she did not have a lot of self-confidence. Understandable for her age. Consistent positive messages for two seasons made a measurable difference in this young lady’s life.

But here’s the other part of that. You also have to speak the truth, and you have to build a foundation for what the person is attempting to accomplish. Positive words can only take you so far if you don’t eventually accomplish what it is you’re after.

The final thought on this is, there are experts with many more letters after their names than I have who will tell you that your behavior will closely resemble the five people that you spend the most time with.

Are those people you’re spending the most time with negative, drama-inducing, Debbie Downer? Or do they lift you up, make you feel better about yourself, and provide positive reinforcement? Maybe it’s time to replace someone in that five-person circle.

Don’t Say, “I Can’t.”

Reflecting on my interview with Kayla Brown in this month’s blog post (“Six of Anything Can’t Be Good”), the quality that stands out to me is Kayla’s perseverance. It’s a characteristic that I greatly admire. It’s also a trait that’s difficult to develop, and not one that you can easily rely upon if you haven’t gone through some challenges along the way.

Some people might ask, “what do you mean by Perseverance?” Good question.

One definition of Perseverance is “a steady persistence in a course of action or purpose, especially in spite of difficulties, obstacles or discouragement.”

Another says, “A continued effort to do or to achieve something despite difficulties, failure or opposition.”

Another one says Perseverance “Is not giving up. It is persistence and tenacity, the effort required to do something and to keep doing it until the end, even if it’s hard.”

That’s Kayla Brown. Despite tearing her ACL when she was in middle school, despite being diagnosed with a cancer, typically one found in older men, when she was 15 years old, despite having her teachers give up on her during her sophomore year, despite having six concussions…Kayla just completed her first year at Susquehanna University.

Kayla acknowledges that she has some extra effort in order to graduate on time, but she knows what she has to do, and she’s determined to do it. I’m not betting against her.

Perseverance is a message that I attempt to impart on my players every season. Everyone is going to face some sort of obstacle in achieving their goals. Sometimes that challenge is large, sometimes not so much. But how are you going to react when you’re working toward your goal and all of a sudden, things don’t go the way you planned. There’s a bump in the road. An obstacle?

Are you going to give up? Are you going to try to find the easy way out? Or are you going to have Perseverance?

Don’t Say I Can’t

{When I interview someone for a project, there’s usually pages of notes, and not all of the important information can fit into an article or a blog post. So, on the third Wednesday of every month, I’ll present to you Bulletin Board Material, which will be a short thought from that month’s interview that you can print out, tape on your mirror or refrigerator or your school locker to remind you of the important stuff.}

“Even if you don’t see it now, things will get better. There are some good days and some bad days, and the good days cancel out the bad days. I guess as long as you keep getting up and doing what you do, eventually it will pay off. That’s basically what I’ve done. Whatever you’re doing, keep getting up and doing that, you’ll see some success.

I read this one thing…even if you fall face first on the ground, you’re still moving forward.”

–Kayla Brown

“I like to look at my symptoms online, and I had an unexplained cough, so I went to the doctor,” Brown explained. “The chest X-ray looked clear, but they thought they saw an enlarged vein behind my heart. They did an MRI and saw inflamed lymph nodes.

“I said, hey Mom, I could have cancer,” Brown continued. “My Mom said, you don’t have cancer, and the doctor said the same thing.”

The doctors did a biopsy of her lymph nodes, and she was notified that she had a follow-up appointment with her pediatrician.

“They didn’t take my height, or weight or my temperature (when arriving for the appointment) so I thought something was fishy,” Brown said. “The doctor said, Kayla, we got the results of the biopsy and you have what’s called Hodgkins Lymphoma. I said, you mean I have cancer? I sat there, for like five minutes, just saying ‘Wow.’ They told me it’s common in 30-40 year-old men, which I thought was funny.”

Over the next six months, Kayla had 20 chemotherapy treatments, accompanied by a drug specifically for her kind of cancer. There were some significant side effects, including severe pain, fatigue, nausea and she lost all of her hair.

“People kept telling me I was so brave, but in my opinion, I felt like I didn’t do that much,” Brown said. “I feel like I just showed up and didn’t die. Everyday that I got up, I’d say I was going to fight it, no matter how bad I felt. Every single day I got up and took it one day at a time. It was kind of scary. But I tried my best not to complain, even as much pain as I was in, I was just going to suck it up and do it.”

Compounding her recovery is that she also was recovering from a concussion as well. A tutor came to the house as many days a week as Kayla could tolerate it. The two of them continued to work on her school assignments to try to stay on track. This might’ve been the most painful part of her recovery.

“Even though I was homebound, I kept turning in work,” Brown said. “But the teachers stopped sending work because they thought I was going to repeat. This was the worst year of my life, and I said, I’m not repeating it! I finished my classes by July, which was the deadline. The teachers basically gave up on me. It hurt. It’s never really been like that for me before, never had anyone give up on me before. I told myself, I’m stronger than this, I’m not going to give up because my teachers don’t think I can do it.”

Kayla is a journalism major, because she loves to write. Her goal is to write for ESPN when she graduates. She’s already started writing outside of the classroom, being a regular contributor to TheOdysseyonline.com, an online e-zine. She also uses her writing to display her emotions. Kayla doesn’t like to talk about how she feels, so she types it out on her laptop, sort of like a journal. She keeps all of these posts in a file, and if her Mom, for example, asks how she’s feeling, Kayla shows her Mom her writing.

“I put on this face…I like to show that I’m strong, but even though I’ve been through all this stuff, I’m still tough and it doesn’t bother me,” Kayla concluded. “But in reality, when I’m alone, I cry a lot about it. It works better for me if I put up a mask in public. My whole life I’ve hated being seen as weak. I take it one day at a time, and some days are really bad. But I have some good days, when it’s not a fake mask, it’s actually that I’m happy, and I’m pushing through. I just keep pushing on, and not giving up when it gets hard. Because if I gave up when it got hard, I would’ve been gone a long time ago.”

Don’t Say “I Can’t”

The last thing that Kayla Brown wants anyone to think about her is that she’s weak.

If you know Kayla Brown, at all, you know that assumption is the furthest thing from the truth. However, after recently suffering her sixth concussion, you can’t blame people for that faulty thinking.

“After each one (concussion), my focus got shot down, so I had to work harder with school stuff,” Brown said. “I’ve noticed that people…everybody worries instantly, if I stumble or fall, like I break easily or I’m fragile. It’s just hard, in general, because most of them haven’t had a concussion, so they think, Oh, you just bumped your head.”

With increased notoriety on concussions from professional sports leagues in recent years, and, with that, the increase in research, we know that a concussion is significantly more than a bump on the noggin.

Unfortunately for Kayla, she sustained her first concussion when she was 11 years old, in a youth basketball game. She went up for a layup and her face was the first thing that hit the floor. The next three, also, were sports related. Her last two have come during her freshmen year at Susquehanna University, in what anyone would call freak accidents.

For most people, these ‘accidents’ and the resulting brain trauma would be catastrophic. While Kayla acknowledges what the long-term consequences could be, she continues to forge ahead.

“After my concussion in the fall, they put me on academic rest, which meant I wasn’t able to go to classes or anything else,” Brown said. “I had to sit in a dark room and rest. Which is hard when you live in a college dorm, when there’s parties and people outside your door yelling.”

After two weeks of academic rest, there was no improvement, so doctors sent her home early for fall break. She saw several doctors at home, including a specialist. She ended up staying home for three months. She went through physical therapy, occupational therapy, and then speech therapy. She returned to college for the spring semester, but wasn’t there long when she suffered her sixth concussion.

“My most recent concussion, I felt like I was back at square one,” Brown said. “I don’t think it was as bad as the last one, but I don’t think I was completely healed from the last one.

“I did complete one class in the fall semester,” Brown went on. “I just have to make up classes over the summer and winter break. I’m definitely graduating on time. I don’t think I’m going to have a problem with that. I’m used to rushing to start and to finish stuff because I’m so used to being so far behind.”

This hasn’t been the worst time in Kayla’s life. That would be what would’ve been her sophomore year in high school. Instead of being at school, with her friends, she was homebound for the entire year, because in addition to concussion recovery, she had an added obstacle.

*Come back next Wednesday for Part 2 of “Six of Anything Can’t Be Good”

Good morning, the fourth Wednesday of every month, I’m going to post a short video for you on my Instagram page, briefly discussing the theme that stands out to me the most from that month’s story.

Unfortunately, I have this month’s video ready to go, but, for reasons I can’t comprehend, Instagram won’t recognize the video on my phone so that it will post.

Yeah, you got me, I’m a first-timer for this Instagram thing.

If I can’t get this video to post, I’ll be back next Wednesday with a new story,
“Six of Anything Can’t be Good.”

In the meantime, I’ll keep working on this Instagram thing…if any of you have any Instagram knowledge to share, let me know. LOL

Bulletin Board Material

{When I interview someone for a project, there’s usually pages of notes, and not all of the important information can fit into an article or a blog post. So, on the third Wednesday of every month, I’ll present to you Bulletin Board Material, which will be a short thought from that month’s interview that you can print out, tape on your mirror or refrigerator or your school locker to remind you of the important stuff. Here you go…}

“I never let anyone take my dream away from me. I had a passion and I knew what I wanted and I would never let anyone take that away from me. I knew how hard I was willing to work for it. I think that helped me with my adversities later in life. In college, it wasn’t always roses and gold medals, but I used it as fuel to motivate me to keep pushing. I knew who I was and that’s all I could ask of myself. Do the best that I could do.

That’s how I approached cancer… the stuff that I did have control over, I did to the best of my ability. I tried to keep pushing myself to my limit, because I knew there was my end goal. I would always set goals for myself, when I accomplished a goal I would set new ones. Seeing what I could contribute to make our team better or to go from a B to an A in class.”

–Amanda Weaver

When Amanda had her first surgery to remove the cancerous tumor, the doctors also removed her colon, which resulted in the doctor having to reconstruct her small intestine and her digestive system. But something still wasn’t right.

Amanda would be hospitalized 10 more times after the initial surgery because her intestine was kinked, causing her to get nauseous and vomit her food. The doctors told her that her symptoms weren’t physical.

“That reconstruction never really sat well with me,” Weaver said. “I kept telling the doctor that something isn’t right, and they told me I had anxiety.”

She was in Connecticut for a weekend and had severe symptoms of an obstruction – again – and had emergency surgery at Yale New Haven Hospital. It was an emergency situation, and the doctor stabilized Amanda, but when she woke he gave her news that was both frustrating and a relief.

“The doctor told me that I wasn’t finished,” Amanda remembers. “The first doctors did the reconstruction wrong, and there was a knot in my intestines, which made sense because nothing was getting through. The doctor at Yale reconstructed everything all over again.”

Three more surgeries later, and Amanda was on her way back to good health. Her cancer actually made a positive impact on her life. It caused her to change her career path, and she turned her ordeal into motivation to help others.

“After my first year of graduate school, I was doing my first clinical rotation that summer,” Amanda said. “When I started chemotherapy, I didn’t have energy to do anything…I’d go to chemo one day and I’d go do my clinical rotation the next day. When I was receiving chemo, I saw how everyone struggled, and I saw how cancer and treatment was affecting their lives. Then I’d go to clinical, and people were complaining about a sprained ankle.

“I was thinking, you don’t even know what I saw yesterday,” Weaver continued. “I didn’t like it (physical therapy) anymore, I didn’t enjoy being there, I fell out of love with it. Through my treatment, I had a fond appreciation for the nurses, and I talked to a lot of nurses who treated me. I decided that when I got healthy enough, that was my career path. I love my job.”

Amanda enrolled in an advanced nursing program at Johns Hopkins University, and she earned her Bachelor’s degree in nursing. She’s an oncology nurse at Johns Hopkins Hospital working in the inpatient hematology unit, primarily with leukemia patients.

When she was engaged in her fight against cancer, Amanda’s mother searched for support groups for her. She found a number of groups for children with cancer and for older people with cancer, but none for young adults. The search continued, and Amanda finally connected with the Ulman Cancer Fund for Young Adults in Baltimore.

The Ulman Fund was started by a former college soccer player who found himself in similar circumstances to Amanda. The group holds athletic events and happy hours geared toward raising awareness and raising funds for research. Amanda recently completed a run from Baltimore to Key West with the group.

“Now that I’m healthy, I feel extremely blessed,” Amanda concluded. “Going through radiation, I was sitting next to people who are no longer with us. I see what cancer does to so many people’s lives, and I feel so blessed to be here, and to be in health today. That’s why I pay it forward.”

DON’T SAY, “I CAN’T”

Next week: Your first dose of Bulletin Board Material

Nobody wants to hear the “C” word. It doesn’t matter how old or how young you are. It doesn’t matter how tough you think you are, or how physically fit you might be. It doesn’t matter if you eat salad and quinoa or three Big Macs a day. The “C” word doesn’t discriminate.

To most people, Amanda Weaver was living the dream. She helped lead her high school basketball team to back-to-back district and state championships. She parlayed her hard work into a Division 1 scholarship to the University of Hartford.

She played four years of Division 1 basketball, worked her fanny off to earn a 3.89 GPA in Biology, and was in the first year of graduate school for physical therapy when her world turned upside down.

“My freshmen year in high school I started to have rectal bleeding,” Weaver remembers. “I would tell my doctor, and they would say, ‘you’re all right, you’re young, it’s probably fine, you’re just constipated.’ When I saw the doctor annually, I would bring it up, and they said I was fine, I had no other symptoms.

“Toward the end of my college career, it became more frequent,” Weaver continued. “Toward the end of my first year of graduate school, it became really frequent, so I decided when I went home, that I was going to go to the doctor, and we’re going to do something this time. I thought I might have to change my diet or I had a gluten allergy. They sent me for a colonoscopy, and the next thing, they’re telling me I have cancer.”

Doctors first believed her colon cancer was in Stage 3, which means it spread to her lymph nodes. Additional testing changed that diagnosis. But Amanda’s battle was just beginning.

“It was a blur,” Weaver recalls. “I tried to stay strong for everybody else. My Mom was with me, and I tried to suppress my shock for my Mom’s sake. Colon cancer has a stigma attached to it. It’s usually older men that get colon cancer, and I’m 23 at the time.”

Once the shock wore off, Weaver channeled her competitive spirit and met with her doctors to determine a course of action. Prior to her first surgery, she underwent oral chemotherapy, and after that, six weeks of radiation treatment. She then had major surgery to remove the tumor, and post-surgery, she underwent six months of intravenous chemotherapy.

“It was both a physical and mental challenge,” Weaver said. “Sometimes I got into my own head, thinking I’m never going to live a normal life again. I felt hopeless at times. There were YEARS that I didn’t have strength to get off the couch. There were times that I couldn’t walk down the hall to go to the bathroom without getting winded.

“I really pushed myself because I had dealt with so much adversity prior to that,” Weaver went on. “I always found a reason to keep pushing. Instead of thinking about my future, I focused on, what do I need to accomplish today? I focused on the things I could control and did them really well.”

With a positive diagnosis from her doctors, Amanda thought she was on her way back to good health. However, just when she thought things were trending in a positive direction, her body had other ideas.

Come Back next week to read the conclusion of Amanda’s story