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.
What Does it Mean to be Chronically Alive?
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As My Life Comes to a Close
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.
Staying Chronically Alive When Chronically Ill
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.
Mindfulness and Staying Chronically Alive
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.
Making the Most of Being Terminal
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.
The Power of Love
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.
How I Stay Chronically Alive: My Writing
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 second novel. It was released at the August 22nd 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”.
My book on the Shelf at Barnes and Noble
At The Book Loft Book-signing
Where Can I Buy “Was I Ever Normal”?
- In-store at any Barnes and Noble across the country. If your local Barnes and Noble doesn’t have it in stock you can tell them that you are looking for “Was I Ever Normal by Becca Pava” and they will order it for you for free. It will be available in 2 to 3 business days
- Barnes and Noblesonline as either an e-book or a paperback
- Amazon as a paperback or a Kindle
- Books-A-Million
- The Book Loftin Great Barrington, MA
- Booktopiain Lidcombe, New South Wales Australia
- Angus & Robertsonin Australia
- Books and Cranniesin Martinsville, VA
- Darvill’s Bookstore in Eastsound, WA
- Mysterious GalaxyBookstore in San Diego CA
- Wellington Square Bookshopin Exton, PA
- Lehmanns Mediain Berlin, Germany
- Next Chapter Booksellersin Saint Paul, MN
- Tattered Cover Bookstorein Denver, CO
- And multiple other independent bookstores across the US and internationally, just google, “Was I Ever Normal by Becca Pava”
The Rest Of My Site
Browse My Store
You can find my store under the tab labeled “Store”. How original, right? My store sells downloadable e-books. I sell the books by individual chapters. You can buy chapters of my book “Was I Ever Normal” for $1.99 each to see if you like the writing and want to invest in the whole book.
The store also sells chapters of the book I am writing now, Chronically Alive: A Story of Sick. A story focused more on all the medical issues I’ve gone through and my relationship with Jeff, it is based on my blog but goes way more in-depth. I will be posting more chapters as people begin buying the earlier chapters.
A really cool aspect of the store is that it gives you a sneak peek of Changing Destiny’s Destiny, the first three chapters of my novel that I am currently sending out to literary agents.
Each typed chapter is about 15 to 25 pages long and is only $1.99. That’s less than the price of a coffee from McDonalds. It’s not even something you have to save up for. It’s change lying around the house.
The last thing the store sells is possibly the most exciting. I sell audiobooks. Maybe reading isn’t for you. Maybe you have a hard time seeing, or just trouble with reading in general. Maybe you don’t have time in your busy schedule to sit down and read. Well, how about listening to an audiobook while you drive to work, or while you work out at the gym, or while you mop the floor or wash the dishes, or maybe even while you’re going to sleep at night? Each audiobook chapter is about 20 to 25 pages long and costs $2.25 each. You can replay it as many times as you want.
Check Out My Blog
Click on the link labeled “Chronically Alive Blog”. It will bring you to my free blog where you can read about my descent from a healthy child into a world of chronic illness. Follow my desperate search for a diagnosis. My yearning for my doctors to validate to my parents that my illnesses were real not in my head. Two neurosurgeries. I arrived at one via life flight. A five-month-long hospital visit which finally procured a diagnosis that tied all my random illnesses together. A six-month stay in a nursing home where my provider almost killed me in her attempts to heal me. A stay in an assisted living which sparked an unlikely unconditionally loving romance 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 a permanently removes him from the transplant list.
Keep an Eye on My Events Page
My goal is to get as much of my writing out into the world as possible before my illness takes me, that way my short time on this planet will have meant something and I will have left my mark on this planet. My writing will be my legacy.
One way I get my writing out into the world, besides writing books and blogs is by hosting YouTube Livestream Events, where I read chapters of books I’ve written livestreamed on YouTube for people to comment on and interact with me while I am reading them and an official Q&A at the end.
My events page, listed under the tab labeled “events” keeps track of upcoming Livestream events with summaries about what the chapter will be about, pictures, and links to the sign-up page for the events. All my events are 100% free.
Lay Back And Watch the Video Page
The video page has links to all the YouTube videos created from the YouTube Livestream Events I’ve completed. It has every single video of every single chapter I’ve read aloud on YouTube Livestreamed. They are separated by book and start with chapter one and go from there. I also have miscellaneous videos on there like how I do my morning med routine, how I cope with a terminal illness, or what exactly my illness is, or what each tube I have does. I am always adding more videos.
