There is Life After Recovery: Some Reflections from Living with Chronic Dis-ease
“Surrender to your path, forget about time or speed, and most importantly walk in joy.”
Today marks 21 days since surgery and my first two follow-up appointments.
On Thursday, January 18th, I went into surgery to correct a cerebral spinal fluid (CSF) leak. I’m now more than halfway through my recovery period of 6 weeks. The first two weeks were the hardest. A lot of pain and needing assistance around the house. The last week and a half have been much better, yet the pain from intracranial hypertension persists. I’m waiting on an appointment with a neurologist to see what can be done to better regulate this, if not get rid of it altogether.
The stories I’ve heard from others dealing with this, similar conditions, or other chronic illnesses have broken my heart yet inspired me to continue to use my platform and my voice to advocate for myself, others like me, and the necessity of rest and equitable healthcare.
Since October of last year (2023), my capacity has been limited to leaving the house for classes and doctor's appointments, that’s it. The constant pain and pressure in my head prevents me from laying down flat (at all), inhibits my cognition of the material I'm learning, and disrupts my ability to focus on studying and work-related tasks. Not to mention the issues I've been having with short-term memory as well.
Official diagnosis: Idiopathic Intracranial Hypertension (IIH) with a CSF Leak. Translation: increased pressure in my head resulted in the fluid from around my brain & spine leaking through my sinuses & out my nose. There’s no known cause for this, for me, at this time.
I've been dealing with these conditions and their symptoms for a full year now, that I am aware. Since February of last year, my life has been impacted daily. My nose was constantly dripping from the CSF leak. And I do mean constantly. The moment I would look down or bend over my nose was dripping. The fluid would drip on me and whatever else was in front of me. Between blowing and plugging my nose, I was going through a roll of toilet paper every 1-3 days, easily.
Yet, with all this going on, plus feeling empathetic towards everything else going on in my community and around the world, I’m grateful to have (inner) peace amid all this chaos. Throughout most of my life, various issues with my health have taught me to lean into the simplicities of life, to stop trying to control everything, and to focus on doing my part.
The greatest thing any of us can do for ourselves, in this life, is to figure out what works for us as an individual. It’s a matter of death or life. I know this all too well.
This last year has felt like a scary replay of 2020/21 for me. Three years ago around this time, I was recovering from COVID-19 and its impact: pneumonia + liver failure. Ya girl damn near didn’t make it.
I’m so grateful to The Creator that I did.
So, low & behold, finding myself in a matter of circumstances that reflect such a vulnerable moment in my life helped me to pause and take time to reflect on what I need to be well, to thrive.
Defining my rhythm and flow has saved me time, money, and headaches in all parts of my life, and I’m excited to share how I did it and about the people, resources, and tools that supported me along the way.
My purpose in this life is to liberate myself and others through the power of peer support, and I decided that I don’t want to leave this earth until my work here is done.
“No one saves us but ourselves. No one can and no one may. we ourselves must walk the path.”
This year I will celebrate seven (7) years of being in recovery…
and for the fourth time, in four (4) years, I faced death and lived to tell my story. To say these, and other pivotal moments in my life, have been eye-opening is an understatement.
It was the loud whispers of, “Slow tf down!,” that finally got my attention after my first car accident in 2020, and my second one in 2022…and man I wish I had listened the first few times various states of dis-ease were signaling me to move at a different pace. A pace better suited to my capacity.
As of today, I am fully committed to listening to my body and my intuition.
I refuse to keep ignoring the aches and the pains. No longer can I dismiss the signs when they urge me to take a break and rest. I’m grateful for beautiful beings like Tricia Hersey, founder of The Nap Ministry, who introduced me to the concept of rest as a form of resistance to the oppressive system we live in. Or Jade T. Perry and all that she does in the realm of spiritual activism and advocating for disabled and chronically ill folks.
These women have shown me such brilliant examples of what it means to truly tap into one’s power and stand firm in it. And much like them, and many others who have inspired my work, I am doing my part to do the same. I believe we all deserve to live free and to live well.
[Last edited: 02/13/2024]
Like what you’ve read? Leave a comment below and let me know what resonated with you. I create content and share my life experiences with the intention to inspire others to tap into their power and turn their pain into purpose. As long as I am blessed to be alive, I will be a blessing to others.
