Chronically Alive means fully accepting your illness and using mindfulness to live the rest of your life to its fullest despite being sick. Whether you are physically ill or mentally ill, you can still have a full, rich meaningful life however long or short it may be. Even people like me, who suffer from chronic pain and terminal illness can find a way to add quality to their life in small microdoses. Chronically ill doesn’t have to mean chronically miserable.
When you are chronically alive, you spend each minute of your life living in the present and enjoying the moment to the best of your ability. The past is gone, you can’t go back and edit it. While the future is unknown, you also have to hold in the back of your head that you don’t have years and years to live a meaningful life. Everyone in the world wants to feel l like they have accomplished something that changed the world in some way, big or small. To do that you need to set goals.
You can pick a reasonable list of five to ten little goals that you can achieve one at a time, some people call this their bucket list. I didn’t do this. I chose one major goal. “To use my writing to validate, inspire, and instill hope in others suffering from chronic physical and/or mental health conditions. I want to remind the world that mental illness doesn’t magically innoculate you against physical illness. I need to change the way people with invisible but serious health issues get treated by the medical community and even the general public. My writing can be the catalyst for ending the stigma around chronic physical and mental illness.
Maybe I am crazy for hoping my website can do so much, but maybe not. To quote Steve Jobs, “People who are crazy enough to think they can change the world are the ones who do.”
In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact
Being chronically alive means that you don’t let your chronic illness ruin your life. It means you contain the pity parties, although you don’t totally stop them, because every once in a while, everyone needs a good cry and a “woe is me”. What it means is that you maintain a positive attitude. Instead of looking at all the things you can’t do anymore, look at everything you can do. When negative thoughts come up, acknowledge them, so that they know they’re heard, then replace them with a positive thought, like the new T-shirt you just bought, or the great book you’re reading. Our attitude toward life determines life’s attitude toward us. So, keep focusing on all the positives in your life and minimizing the negatives.
One of the ways to become Chronically Alive is through Mindfulness. You have to be able to “come home” to yourself and find a way to be comfortable in your mind and body. “Coming Home” is a term coined by Thich Nhat Hanh, a Noble Peace Prize winner and Buddhist Monk, who wrote volumes of books on mindful meditation, and ran mindfulness retreat centers all over the world. His teachings have helped me to “come home”.
Thich Nhat Hanh teaches us to get in touch with our breathing and nothing else. We don’t allow thoughts of the past, present, or future into our heads. We don’t let any thoughts at all into our heads while we are concentrating on our breathing. It’s almost like we become our breathing. If we get distracted from focusing on a mantra of “breathing in” when we inhale, and “breathing out” when we exhale and feeling what those breaths feel like, we gently remind ourselves we lost our focus and bring ourselves back. We only have to mindfully breathe for a couple of minutes to benefit from this mindfulness practice.
Once we have mastered focusing on our breath, we have a way to escape from the painful past and present and the scary future, by freeing ourselves into this safe zone and going “home” to our authentic selves underneath all the worried, obsessive thoughts, and physical and psychological pain.
When I was pronounced terminal, I began making some changes in my life to make every last moment count. Every week I write a list of everything in my life that I am grateful for. One of the first things I do when I wake up every morning is open up my laptop and write a list of three activities I will do that day that I know I will really enjoy. Sometimes they are small, brief activities like changing my teddy bear’s clothes, other times they are big and exciting activities like going to the Westfield Children’s Museum. Then when I am engaging in those activities, I pay attention to every part of them which makes them enjoyable to me, which gives me even more pleasure when I am carrying them out. This way every last moment I am given is an enjoyable happy moment.
I am also working on creating stronger connections with all the people in my life that I love so much. Research has shown that love has the power to replenish, even down to a cellular level. It affects the autonomic nervous system. The emotion of love can take a person from being in “fight or flight” mode and put them back into “heal and restore” mode.
Whenever I say goodbye to someone I care for deeply, I always make sure to tell them I love them, even if they’re coming back the next day or even in a few hours.
It takes practice to learn to live Chronically Alive. However, once you do, you have a life worth living no matter what.
The main way I stay Chronically Alive is through my writing. When I start writing, I go into a zone. It’s almost like I am meditating. My writing is my biggest coping mechainsm, it is how I connect with my deepest most authentic self. I have a BA in writing from Elms College and work as a freelance author. The following are my most recently published works, in reverse chronological order. “When One Door Closes” and “Was I Ever Normal” are my two published young adult novels. I also have another completed manuscript, “Changing Destiny’s Destiny” that I’m currently sending out to literary agents.
Was I Ever Normal is my latest novel, which was just released at the end of August 2022. Although it is a completely fiction book, I too suffer from childhood-onset schizoaffective disorder and went through multiple psychiatric hospitalizations as a young child and teenager. The main character is based on all the different kids I met on the various psychiatric units, all rolled up into one character which is Cassie. She’s a young girl with schizoaffective disorder who is so determined to hide her psychosis from the world that she spins an intricate web of lies to protect her secrets. When she finally realizes that she needs more help than she can give herself, and tries to tell the truth, no one believes her. They accuse her of “manufacturing symptoms to avoid working on the real therapeutic issues”.
You can find my store under the tab labeled “Store”. How original, right? My store sells downloadable e-books. I sell them one chapter at a time. I sell chapters from my book “Was I Ever Normal” so that you can buy some and decide if you want to buy the whole book, I also sell chapters from my novel “Chromically Alive: A Story of Sick”. So far I have seven chapters posted, I will post more as time goes on and people buy more of the first chapters.
I also sell the first three chapters as a preview of my up-and-coming book, “Changing Destiny’s Destiny” that I am in the process of sending out to literary agents.
Each chapter of all the books I sell is about fifteen pages and costs $1.99. If you have enough money to buy a coffee from McDonalds or half a coffee from Dunkin’ Donuts, then you have enough money to buy a chapter. it’s not something you need to save up for.
In addition to the typed chapters that you can download on your e-reader, I also sell audiobooks. Maybe you’re not a strong reader, maybe you just don’t like to read but enjoy a good story. Maybe your vision is going. Or maybe you just don;t have time in your day to sit down and read a chapter.
With the audiobooks, you can listen to my books while going grocery shopping, mopping the floor, driving to work, or even going to bed at night. Those are only $2.25 each. Go check them out at the store, I know you’ll enjoy them.
Check out my “Chronically Alive Blog”. It will bring you to my free blog where you can read about my descent into the world of chronic illness. My desperate search for a diagnosis and to have a doctor confirm to my parents that it wasn’t all in my head. A neurosurgery to remove a brain tumor growing on my pituitary gland. A 3 AM emergency surgery where I arrived at the OR via life flight. A five-month long hospital stay where I finally got the diagnosis that tied everything together, A six-month stay in a nursing home with a provider who almost killed me in her attempts to kill me, an unlikely unconditionally loving romance bat an assisted living between myself, a 24-year-old young woman with a terminal illness and a fierce determination to never give up, and a 40-year-old man barely hanging on the transplant list in a race against time to get his new liver before his cancer returns a second time and he gets permanently removed from the transplant list.
Maybe if the hospitalizations in the month of November had stopped there then things would have been okay, but life with major medical diagnoses is never that easy. First I went to the hospital for dehydration, Immediately after that bloodwork showed that my potassium was dangerously low. I had to rush back to the hospital.
I had barely finished the IV antibiotics for the UTI when I started to feel really dizzy and lightheaded all the time. I would never in a million years have connected feeling dizzy and lightheaded with my g-tube drainage bag
“Your lips look so dry,” Jeff kept telling me, “Do you need Chapstick?”
“I’ve been putting tons of it on,” I told him, showing him the Chapstick I carried in the purse that I kept clipped to the arm of my wheelchair.
During the first week of November, I started having that familiar urinary urgency and pain. I was attempting to catheterize myself constantly. Each time I catheterized all I got out was a few dribbles. Really, my bladder was empty, but I was having spasms. The spasms were making me feel like I had to pee so badly. Right off the bat, I knew I had yet another UTI.
I was closing in on my first year spent at Side by Side Assisted Living. I was also only 26 years old. As bad as that sounds, it was one of the best years of my life. From my very first tour there, I knew I was going to love it there. The assisted living ad rescued me. Before moving into assisted living I’d been at a nursing home. I suffer from a disease called autonomic small-fiber neuropathy. A disease that has stolen my childhood and adolescence from me.
© 2025 · Your Website. Theme by HB-Themes.