I am often askedwhere I get my strength & determination to keep going when it’s one thing after another?
In short, I have mentally conditioned myself over 11 years to turn my daily pain struggles into purpose with the sole ambition of helping others realize that life is not over even when the seemingly darkest moment is upon you. I derive my strength from others positivity, family support, I’m sure a little bit of genetic grit somewhere thrown in there, and the constant urge to push through what feels like insurmountable challenges at times.
Quite frankly, it’s exhausting. It takes up nearly 1/3 of my day to just power through, but I do it. As I write this article I woke up sick as a dog and spent nearly an hour staring at the screen. I don’t have the luxury of lying in bed all day to get better because I would get pressure sores from staying in bed too long. So, I was forced to get up in my chair. Sure, I could have laid back all day and done absolutely nothing, but what I find gets me through moments where I just want to crawl on the couch and wait for tomorrow to come, is the fact that I know I may be helping others appreciate the fact that they are not alone. I do appreciate when I need to take a moment and scale back my day, but sheer determination keeps me going to make a difference in the world.
I don’t want to wake up at the end of my life and realize that I have just worked my ass off, but I want to make an impact in people’s lives in some way, shape or form. My husband and I are not going to have children, so I feel this incessant drive to keep going. I am fortunate because I have the innate ability to move from project to project without losing focus. I retain information quite well, learn quickly, and “just do it” as Nike would say. Please don’t misunderstand, this is a daily battle I take on in every moment because chronic pain can bring an ordinary person to their knees, and disrupt their entire lives. I appreciate we all handle pain differently.
I’ve written numerous articles on the importance of mental health and expressing the fact that “It’s okay, to not be okay.” I believe this wholeheartedly, but often times when I find myself writing articles and reflecting back on a challenging moment or week that I had had – I do it while I am in a better mental state analyzing my past feelings. Today I’m flipping this article on its head because as I write this I am definitely not okay in the feelings I have about my mental well-being at present, which feel wildly different than feelings expressed in hindsight. I think both perspectives are valuable and I offer you today a glimpse into what’s really going on in life and how I am attempting to handle it.
I find great comfort in knowing that I am not alone in my feelings because I get dozens of messages a day from folks expressing thanks for being extremely open with what I go through as a C6 quadriplegic who is dependent on other human beings to take care of me on a daily basis.
What prompted me to write this article was Naomi Osaka. I’m not sure if you’re familiar with this young lady, but she is a professional Japanese tennis player and has been ranked number one in the Women’s Tennis Association. She is dealing with a lot of the mental stresses that undoubtedly come along with being a top professional athlete in her field. Just the other day she did not want to partake in a press conference for her own mental well-being and was penalized with a $15,000 fine for not talking to the media after a match. There was an enormous amount of support around the globe acknowledging the importance of mental health from the public, sponsors, and corporations due to the fact that she was honest with yourself, and the world.
I’ve spent the better part of a decade learning to adapt, train, push forward, and fight for survival on a daily basis to, not only accept this life of spinal cord injury, but to thrive in it. For the most part, I believe I’ve done pretty well and professionally I seem to have the ability to seamlessly keep striving for greatness even when I am faced with strikingly devastating defeats.
In my personal life, especially the last few weeks, it feels as though life has been crumbling around me. It doesn’t matter if you have a disability as I am sure many of us feel this way, like failures, whether you’re a single parent trying to handle multiple children on your own, a high-powered CEO trying to meet quarterly profits, or a starving artist trying to make ends meet – we all have the ability to crumble as human beings. Now, it’s how we get back up that of course defines us.
If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice. The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.
As the years roll by and you grow up that distant memory of the large envelope stays with you. It certainly stayed with me. Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment. I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.
Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.
he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed. Blue Cross and Blue Shield had initially rejected both requests. The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit. I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.
There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
I am so honored to be featured once again in New Mobility Magazine to talk about my marriage, the challenges we face, and how we work through them. Marriage is challenging enough, but when you add in the layered complexity of disability into a relationship I find that you have to work even harder on communication and making things work.
Check out the article below and I hope you enjoy 🙂
The other day I posted an Instagram story that choosing to be happy is a conscious choice. I received a message from a person who asked me a simple, yet thought-provoking, question on how I choose to be happy? This got the wheels turning as it is a really great question.
I’ve always been a very bubbly person throughout my life with a very quirky personality. I was raised to appreciate many different aspects of life. There is this one phrase I grew up with that my dad instilled in me.
“There’s always someone in life who is going to be richer than you and poorer than you.”
I’ve adapted this over the years to say that there’s always someone in life who’s going to have it better than you and worse than you. What it means to me is there are always two perspectives in life, and, more importantly, it is completely your choice which way you look at a situation.
I’m super honored to be featured in another article by the Christopher & Dana Reeve Foundation this year. There are concrete steps you can take to navigate the appeal system and I am partnering with SPINALpedia to create a website this year for a “Patient to Patient Guide To Navigating your Health Insurance Denials.” Look out for this later this year when we have it up and running!
We have to stick together and work together for you going to advocate for change in our country and in a broken healthcare system.
The other day I was working with my caregiver and I caught myself thinking about some of the things I ask for on a daily basis, and just how unbelievably bizarre they must sound the average able-bodied person.
I started to make a list of these particularly humorous statements that most people would consider very peculiar indeed! I found myself laughing out loud because I thought back to my life a decade ago and how I never would have thought I would catch myself asking people to do these particular tasks for me. To end the year on a funny note amidst a year of complete chaos I hope to leave you with a chuckle by the end of this article.
I’ve written about this topic numerous times, but when you are paralyzed you need help going to the bathroom. Plain and simple. When you (an able-bodied person) go to the bathroom you simply sit down on the toilet and poop. I, along with most other spinal cord injury folks, especially quadriplegics, do not have this luxury.
I do not have the ability to use my abdominal muscles to push out the poop. Probably too much information, I know, but that’s life. In any event, I have to put a suppository in my bum, let the poop come out, and then I have to have my caregiver put gloves on to go into my behind to get the rest of the poop out. Yes, it’s a pretty involved process, not particularly pleasant, but, hey, it is better than the alternative of going to the hospital because you can’t poop.
So, every morning during my “Morning Program” I ask some of the following questions:
1.)“How much poop did you get out of my bum?”
2.)“Okay, can you put your finger in my bum now to get the rest of the poop out?”
Mental Health. Society has come to appreciate the importance of mental health just as much as physical health in recent decades, but somehow there still a negative shadow cast over those who open up about mental challenges they may be facing. If you break your leg people openly tend to express sympathy for the pain you must be feeling.
However, if you talk about bipolar disorder, depression, anxiety, or whatever else ails you inside the complicated workings of your brain, oftentimes, people tend to form an opinion about the stability of you as a person. The leads to people forming quicker judgments about your ability to function in your job, your life, family or home. It’s unfortunate, but mental health, in my opinion, is still not a topic that gets the attention it deserves.
As many of you know I like to crack open uncomfortable topics and dive right into them. With that said, I’m going to open up about some of the serious inner demons that afflict me on a daily basis, how I deal with them, and, frankly, how I compartmentalize most of them just to get through my days.
Where does one even start reflecting back on the year of 2020? This has been a year to remember for the ages from pandemics to politics to pandemonium around every corner of the globe. The human race has endured throughout the ages and what millions of us are facing today will undoubtedly be written as a dark chapter in the history books, but there’s one overarching concept that continues to guide many of us during these dark times – Hope. Hope for a better future, hope for a vaccine from this pandemic, hope for our fellow humans to be kind to one another, and hope for the will to survive both physically, and mentally.
Each one of us has been faced with our own personal hardships & challenges, and while many of us may have trouble seeing beyond the trees within the vast forest – we will somehow prevail as we have done for thousands of years.
For me, 2020 has been a year of incredible clarity. While there are moments I feel intense guilt for thriving in such a dark time, I have finally found my purpose in life. In short, fighting for those who cannot fight for themselves. After 10 years of fighting my own personal battles for survival through the labyrinth of all of the complications that accompany a spinal cord injury and being paralyzed from the chest down, I finally reached a tipping point in my own life where I’ve come to realize how short life really is.