That video is 10 years old! It has been a crazy start to 2020. As a person with a disability and brain tumor survivor that lives alone, COVID-19 has greatly impacted EVERYTHING that I do. Through the organization, mAss Kickers Foundation, we’ve been able to connect with other survivors all over the world. However, with all the travel bans and social distancing precautions, international travel is not in the cards in 2020. Regardless if the travel restrictions end, taking people who were immunocompromised on long enclosed international flights AND staying in Air B&Bs/hotels is probably not a wise decision. The risk of getting sick is very high! Not a good idea, even with permission from a doctor. 2 years ago, I got sick after a mAss Kickers trip to Toronto.
Anyways, I wanna try something new. I’ve been using a mobility scooter AKA the “mAss Kicker Mobile” for years, and it gets me out and about in the community! It is really convenient using the mAss Kicker mobile in large airports! I am starting to use a manual wheelchair to go out and about. However, the chair I have is a a transport wheelchair and not built for self propulsion. On the positive side, I’m getting a vigorous workout! I think using a manual chair is fine in social settings, but I’m trying to figure out how to go grocery shopping in a wheelchair AND take the bus. (Since I can’t drive) Use a rolling cart strapped to the WC? Large bag/backpack? Suggestions?
Anyways, I’ve been cooped up in my place for 4 weeks now. Most people my age have already started families and have spouses and little “rugrats” to keep them occupied in this time of social distancing. I unfortunately live by myself. So practicing social distancing means A LOT of alone time in my apartment. I’m tired of watching TV/movies. I’ve done plenty of google hangouts, go to meetings, and zoom meetings. At the end of the day, I’m still alone and bored. You can only watch so much Netflix, Hulu, CBS All Access, and Disney+! I figure maybe I’ll start creating stuff again… writing, making videos, cooking?
I think I might start blogging again to alleviate my boredom… things are slow right now, anyone wanna join a writing club/group? We can come up with weekly topics… I thought 2019 was pretty bad, but 2020 has gotten off to a really weird start… let’s make the most of it and create something cool!
Another year has passed. I had surgery to removed a golf ball sized meningioma brain tumor at the cerebello-pontine angle on October 25, 2005. This was the day EVERYTHING CHANGED and I was reborn. For the first time in my life I wasn’t sure what was going to happen next and experienced true fear! It made me re-evaluate things. I remember calling the people closest to me before the surgery because I wasn’t sure if I was calling to say goodbye…
Surgery was extremely risky, but I needed that tumor thing (AKA “Amani Tumor” he was on my fantasy football team) out of my head! I survived the very risky 14 hour brain surgery, BUT I was left with some pretty severe physical impairments. I was reborn with a new attitude and a new appreciation for everything, I’m now officially 14… a “high school freshman”!
So much has happened since I was reborn. I’ve published 2 books, spoken at many interesting venues, traveled the world to talk about my experiences as a young physical therapist turned rehab patient with physical impairments, started a unique nonprofit, and met so many inspirational individuals around the world! While all of this sounds cool and exciting, I’ve also lost the majority of the hobbies I used to enjoy, lost contact with many of the friends that I used to have, lost my dream job shortly after getting it, lost my purpose/direction in life. My background in physical therapy has helped me navigate the scientific and medical aspects of my recovery, but I was not prepared for psychosocial ramifications of becoming a brain tumor survivor with severe physical impairments. I’m still adapting and learning new things in the process. Basically, I had to start EVERYTHING over from scratch, thus the “Rebirthâ€. My life is now dedicated to helping others: find their new path/direction after their treatments AND find a setting where they feel like they fit in.
These are some of the reasons mAss Kickers Foundation was created! On October 29, I’m traveling to Ottawa Canada for the first time with 3 other survivors to share our stories, hangout with survivors from Ottawa, and experience a new environment with fellow post treatment thrivers. Please contribute what you can to help other survivors discover something new!
Help me unite the world against all forms of tumors/cancer by donating what you can here:
Let me preface this post by saying that song still makes me laugh! I’m NOT a LFO fan. It seems like many of the popular entertainment outlets are deep into throwbacks to the 80s. You have TV shows like the Goldbergs, Wet Hot American Summer, and Stranger Things. Then there are movie reboots like GI Joe, Transformers, Pet Cemetery, Nightmare on Elm Street, and The Terminator. It is only natural to reminisce about good times, but I do not understand the strategy in rebooting a classic. Is it to create a younger fan base? Quick and easy “cash cowâ€. Why ruin a good thing? Nostalgia? Lack of creativity?
I find it funny because I vividly remember what it was like in the 80s. It was elementary school and junior high school for me. Those years were important in the formation of my identity. Sports, science fiction, movies, video games, and reading were the majority of my interests. That probably made me a strange kid. I think everyone feels awkward in that life stage. I was the same age as Kevin Arnold from the Wonder Years, but it was set in the 1960s. I remember thinking that me and Kevin Arnold were very similar. Of course he was much cooler than I was and actually talked to girls… Anyways, I religiously watched that show every week. Even though the show took place long before I was born, it hit a nerve with a lot of people because everyone can relate to that awkward transition from childhood innocence to young adulthood.
Transition periods seem to make great stories. Everyone can relate to the awkwardness of experiencing something new. I have more stuff in the works, so stay tuned.
I’m seriously wondering if I should get a get a new manual wheelchair. I think that I would benefit from a new chair because it would force me to be even more physically active. I discovered the Wijit lever propulsion system
a few years ago and more recently I discovered . the Nu-drive Air
I would use a regular manual chair, but I have difficulty propelling the chair with my grip/hands. My coordination is horrible. I wonder if using the Nu-drive Air will improve my coordination by strengthening the proximal muscles that control my tremors. I’m curious to hear what other rehab professionals think. I had an appointment with my PCP to get a script for a WC evaluation. I’m told this process will take anywhere from 3 to 6 months. Should make traveling easier… We will see what happens next…
Years ago in physical therapy school, life was so simple. Eat, study, sleep, go to gym, go to class, study for exams, take exam, celebrate finishing exam, watch sports or watch movies to unwind, repeat cycle. I was very focused on what I needed to do to be successful in grad school. September 11, 2001 changed everything. This is the first time I’ve talked it about since then and it still hurts. It marked the end of our innocence. It was the first major life event our group of friends came up against. Most of our friends from college were moving along and preparing for the next major transition. Some were in grad school, while others were “becoming adults” and moving up the ladder in the corporate world“. Most of my friends from college moved to big cities like LA, San Francisco, Chicago, or New York. There were still a few of us in Michigan. I tried to start fresh in LA, but I decided to come home and go to physical therapy school in Michigan. I’ll admit it was probably for the best because there weren’t as many distractions. On Sept 10, 2001 – the day before everything happened I went to a Detroit Tigers game with some of my classmates. We were right behind first base on the field. I have never sat that close to the field. We were in prime position to snag grounder foul balls. We all brought our baseball mitts with the hope that we would be lucky enough to snag one. I don’t remember the intricacies of the game, but I do remember cheering for a player named “Wendell†cause he had an extremely uncommon sports name and we probably had a few refreshing ballpark beers. Anyways, to our surprise we were able to snag a foul ball and were ready to bring our “trophy†to class the next day to brag about all the fun we had at the game.
The next morning, I remember waking up and going through my regular morning ritual before our first class of the day. My roommate usually lagged behind me. He was still on the couch glued to the news when I left, but I thought nothing of it. I’ll admit that I was the nerd in grad school who liked to get to class early and review my notes before the lecture. I can’t say the news of the first tower strike really hit me until I arrived at school and it was all anyone was talking about. I thought that it must have been an accident. Then we heard about a second plane crashing into the other World Trade Center tower. We were shocked. This definitely was not an accident! Someone orchestrated this! And then I got a call from my girlfriend from undergrad saying that our friend Christina works at the World Trade Center and no one had heard from her! That’s when the gravity of the situation hit me. It hit me hard. Our crew used to hangout at her apartment all the time. I lost touch with Christina after graduation, but my girlfriend at the time was still pretty close to her. I called my other friends in New York to make sure everyone was OK. Many of my friends from undergrad were in New York and we were updated about everyone. Another one of my friends from undergrad worked there, but he wasn’t at the office that day! I got scared when we didn’t hear back from Christina. She used to be the “moron police†whenever me and my buddies were acting stupid. Her look of stern disapproval instantaneously evaporated any thoughts of mischief in anyone caught in her gaze. For the first time in my life I was genuinely concerned with a peer’s well being. No one had ever been sick or had any major life crisis. Having a friend caught up in the reality of the situation made me realize that although we were heading in different directions, we started the journey to adulthood together from the same place with similar ambitions and roots. It made me wonder how we grew apart. After graduation, everyone goes in different directions. Everyone gets busy and it takes work to maintain those friendships, especially with the people who helped mold you into the person you become today. I lost contact with her my senior year of undergrad because we both got busy pursuing our own interests. I remember driving from Michigan to New York City a day after with some friends who probably felt the same. I’m not sure what we could actually do there, but I’m pretty sure it helped being around others that had similar feelings. People came to New York City from all over but most notably: Ohio, Michigan, Maryland, and California. All I remember was a silent 10 hour car ride to New York, but things got really somber once we got to the tunnel into the city. Seeing most of our friends from undergrad together made us feel a little better, but everyone was missing the one person that united us. We needed each other at that particular moment because it was such a confusing time. We had no idea what to say to each other. Sometimes a hug from a loved one or friend is all the talking we need. I remember going to the site and looking at all the pictures posted of missing people and the crowd of people searching for friends and loved ones. My heart dropped. I felt sad and confused how this could have happened. I remember the look on the faces of the police officers doing crowd control. They probably felt the same helpless because there was nothing they could do. I made eye contact with one officer. I could tell he felt the same feelings of helplessness. He let our group come up to the front of the barricades and pay our respects/ say our prayers.
Fast forward to 2019, I decided to symbolically fly on 9/11 back to Michigan to clean out my mom’s basement. As I sit back and recall all the emotions from that tumultuous week, I’m glad that there were people around so that we could go through the emotions together. I still miss Christina, but I’m sure she would be proud to see we are still there for each other AND how much we’ve grown since our days at “the apartmentâ€.
Sports have been the one constant in my life ever since I was young. The highs and lows of being a fan/supporter of any sports teams connects so many people. I noticed that I would get so depressed after a big loss that it would ruin my weekend. I am still a die hard sports fan, but losing doesn’t consume me as much as it used to. I don’t get too emotional in front of people, but put me in front a team that I’m a fan of and I’ll have the vocabulary of a grumpy sailor. I needed sports in every major transition in my life because “cheering for something†was a great escape from the moments of uncertainty or the seriousness of new situations. I look back at every major transition in my life and there was always a big sporting event associated with it. Detroit Tigers win the 84’ World Series. Motor City “Bad Boys†win 2 NBA championships in the early 90s. U of M football wins National Championship in 97’. Detroit Pistons win another NBA Championship in 04’. Patriots win multiple NFL Super Bowls. The Golden State Warriors win multiple NBA Championships. The Houston Astros win the World Series in 17’. The Toronto Raptors win the NBA Championship in 19’.
My younger brother played organized sports (t-ball) before I me because I was too much of a comic book fan to start paying attention to sports. He was always the cooler one although I will always be the BIG BROTHER… HAHAHA! But once we started playing the same sports, we grew extremely competitive… especially through high school when we were on the same team pushing each other to excel. It is the thing that still defines us. Our competitive nature is what made us stick out and helped us to gain acceptance in a community where we were so different from everyone.
Sports and physical activity became a part of my identity. However, that identity was put in jeopardy when I was faced with some severe physical impairments after major brain surgery. Luckily, working as a physical therapist and physical therapy assistant has exposed me to some amazing stories of rehabilitation and adaptation. The core of my former career as a physical therapist was rooted in helping people learn how to adapt to their impairments and discover how they can thrive under new circumstances. This is the crux of mAss Kickers Foundation. MKF strives to achieve adaptation and self-discovery in tumor/cancer survivors and their loved ones.
I just “pressed the reset buttonâ€. I had to take a little break from the oncology world, but I’m ready to jump back in the survivor advocacy game. This time around, I’m armed with the bitter taste of loss in my mouth. For the past 10 years, I’ve had the pleasure of meeting incredible post-treatment thrivers from around the world. Unfortunately, I have also experienced losing so many close friends to tumors/cancer. That is why I had to take a break and try something new. It pissed me off. I tried going back to grad school to approach the issue of post treatment thrivership from an academic angle. I discovered that my post treatment impairments (and age) put me at a HUGE disadvantage in an academic setting with so many gifted colleagues in the program. I thought I stuck out before, but now I felt like I was sticking out out for the wrong reasons. I am not the same student I was in physical therapy school. Somewhere along the line I became academically cynical. I didn’t enjoy the classes, I questioned why we had to do things, I had very little in common with my classmates, and then I became the guy in the scooter who needed help taking notes/needed extra time to take tests & quizes/ the guy you didn’t want to do group projects with. I started feeling like a burden. My classmates on group projects didn’t trust whatever input I had. Sadly my disabilities are hard to hide. Going back to school was a challenge I needed to try because I was getting too comfortable where I was. It definitely opened my eyes to the plight of students with disabilities. I realized that many young brain tumor survivors probably deal with similar issues… making it difficult to attain higher education. It pissed me off. I’ve never felt so helpless to things out of my control, BUT I now have a greater understanding of the issues many survivors face in returning to school. Helping survivors figure out how to adapt to their impairments and become thrivers is something I can still do. Oncology thrivership has always been at the heart of mAss Kickers Foundation. We want to empower ALL survivors and see them become leaders and powerful advocates for other survivors.
mAss Kickers Foundation is already planning on going back to tabling at conferences and doing more presentations. I have also realized that all survivors have a unique story that needs to be told. Our stories can benefit someone facing the same diagnosis or the challenges that come with that diagnosis. I’ve found that healthcare professional students are very receptive to hearing stories from people close in age to them. These stories resonate with students because they are typically identify with lecturers in the same social/life stages.
I’ve been in Houston for 2 years and I’m finally meeting other survivors! I didn’t realize how alone I felt without connecting to others with similar experiences. Honestly, I was so preoccupied with academics that I ignored the fact that I was pulling away from people. Perhaps everyone feels like this at some point in higher education. I have more time now, so perhaps I’ll start blogging more frequently.
Realizing you can’t do something is extremely humbling. Pursuing another graduate degree in a completely different profession with some pretty severe impairments was pretty ambitious! I think that accomplishing so much after major brain surgery probably inflated my confidence and gave me a false sense of invincibility. For the first time since my diagnosis I couldn’t figure out how to address my impairments… in an academic setting. I have learned that the cognitive/short term memory impairments are an extremely difficult to overcome in a formal graduate school environment. Impairments were easy to compensate on my own with my smartphone for note taking in meetings and a “lax” work environment. I’m just not sure if I have the energy to pursue another degree knowing that there is someone out there who needs that extra nudge to become an advocate for tumor/cancer survivors OR more importantly help survivors find their own purpose post-treatment. Maybe if I was 10 years younger I would have had the energy to both pursue another degree AND do advocacy work. After careful consideration, I’ve decided to “punt” on the additional degree and shift my focus back to empowering oncology survivors with a proactive attitude (AKA “Kicking Mass”). I’m now understanding that I was spreading myself thin trying to go to school AND run mAss Kickers Foundation.
While it has been humbling realizing that you can’t do everything, new interests have emerged. In the past 2 years here in Houston, I have learned more about issues in disability. Earlier this week I had the opportunity to speak on a panel at the University of Texas, Medical Branch in Galveston (BTW, cool beach city south of Houston) to discuss disability and healthcare. It was only the second time I’ve spoken specifically about disability issues. There are physical therapy rehab programs close to Houston, so maybe I’ll get more involved with them… Check out the first time I’ve spoken about disability issues. Disability advocacy is now on my radar and obviously near and dear to my heart! Disability is very prevalent in the brain tumor survivor population and is an issue that many survivors are unfamiliar. Maybe combining bout interests… Do many brain tumor survivors apply for disability benefits… Medicare/medicaid?
The move to Texas has definitely been an adventure:
moving here with Hurricane Harvey,
dealing with scooter travel in heavy rain,
going back to school after a 15-year break in a completely different profession,
being the “old guy” in the classroom with the severe mobility and writing impairments,
I have no regrets moving to Houston to try something different. Experience is the best way to LEARN!. Probably not efficient, but I learn best through experience. I’m continuing to meet amazing people AND I happen to live next to the #1 cancer treatment and research center in the world, MD Anderson! While it has been very humbling trying to start over with so many obstacles, I have found new interests and positioned myself to make a bigger impact in “Post-treatment Thrivership.” Take home lesson: Determine what you can’t do, then “Do the Hell” out of what you can do. Thank you Susan Tortolero-Emery, Mary Ann Smith, Christine Markhan, Lex Frieden, Vinh Nguyen, Roxanne Funchess, the Mirs, the Scotts, the Villatuyas, the Jacksons, the future Paddocks, and all the cool people I’ve connected/re-connected with in Houston. Maybe I’ll start blogging again about the new adventures in Houston… Do people even blog anymore?
Movies have always been my preferred mode of entertainment and an “escape” to another reality. Reading books also fulfilled this need for entertainment, but it is very time consuming because I’m a slow reader. For a little while, watching TV was great, but has become depressing with an abundance of commercialism and so much negative news. Yes, people need to be informed about what is going on and informed about what products/services are available, but sometimes you just need a break. Movies on Netflix got me through the first few years of brain tumor survivorship since my mobility was limited and I had a hard time physically leaving my apartment. Going to the movies has been the only constant. When I was younger, my dad used to take my brother and I to movie matinees all the time on the summer breaks. He also used to take us on weekly trips to video stores/ Meijer to rent movies. Watching the original Star Wars Trilogy, Rocky III, Rocky IV, the Back To The Future Trilogy, and the original Karate Kid were huge influences on me! My addiction to movies continued throughout high school and college because most of my dates involved going to movie theaters or watching movies on VHS/DVD. Now I go to movies by myself because: 1) it’s too hard to coordinate times to get people together and 2) I have MoviePass so I get to go to one movie/day.
For the year, I have already broken even on my $90 yearly MoviePass membership. I have seen 14 movies in 3 months! That on top of a Netflix subscription means I watch A LOT of movies. I enjoy going to matinees because the theaters are less crowded and therefore easier to find a good seat. I tend to gravitate toward comedies and action movies.  Since I am a HUGE comic book geek, my favorite movie so far this year has been Avengers: Infinity War. Although I’m an adult. I’m also fascinated by a good animation movie. The amount of time and skill it takes to piece together each individual frame/shot of a cartoon character’s speech and movements is AMAZING! The last great animated film I watched in the theater was Moana. It was so cool to see cartoon characters who actually reminded me of my family.
The summer blockbuster season is starting, so I’ll probably be ramping up my trips to the movie theater. Wanna join me? Maybe I’ll start reviewing them…
I was looking at a bunch of old posts and I realized that what I’m doing is crazy! Going back to school in a completely different profession with some pretty severe impairments is pretty ambitious. I’m still testing my limitations but figuring out how to address them. I always have intentions to blog, but I routinely get side tracked. I got lost last semester in academic work. I feel like it is an uphill battle learning new material/concepts with short term memory impairments.  Academically, new concepts are stored in short term memory unless they are applied. This is part of the reason why I’m having difficulty returning to school. I need to apply what I read or see. In physical therapy school, labs were very useful to me to experience direct application of techniques and concepts. I’m more of an experiential learner. Reading puts things in my short term memory, but now my short term memory is impaired. Studying for quizzes and exams is now more time consuming.  I’m taking 2 web based classes this summer semester which are self paced, but we will see how that goes.
It has gotten harder to meet new people in Houston because when people meet me for the first time, they see the scooter and all my physical impairments. “All-the-things-I-can’t-do” is now the first impression me. I have learned that in order for people to see past my impairments, I need to look past them myself. It is much tougher to meet new people because I’m limited by my mobility, it takes me a long time to get anywhere via public transportation so it is much harder to drop in on somebody. Most of the time, I get to hangout with old friends in Houston. Hanging out with new people is much tougher than I anticipated.
Physical/Cognitive impairments have surfaced as major challenges in a new academic environment. I’m definitely re-creating myself again, but this time it is much more challenging because at least last time I had an idea of how to address challenges/obstacles as a PT. The social sciences is completely different from what I am used to. I’m learning more about myself on the fly. Addressing new physical barriers (sidewalks/extreme rain/extreme heat), unfamiliar academic challenges, and being “the new guy” has made things interesting. This “kick in the head” is exactly the challenge I was looking for. It’s all about adapting to the new challenges… stay tuned.
