Surviving the Unexpected at Fifteen Years Sober

Fifteen years of sobriety. A lot of changes can be made in fifteen years. Amends can be offered, responsibility can be rebuilt, relationships can be renewed, structure can be woven into life, and blessings can multiply each year. I was absolutely on top of the world. I earned degrees and financial stability, learned to be a reliable mother, married an astounding man, and won the lottery of dream jobs, bringing adventure-laden recovery to others. And then… 

BAM! 

Just as I felt I had reached the peak, the rug was yanked from beneath me with as much force as those jail doors clanging in front of my drunken face so many years ago.  

My brain had been secretly suffering, and the odd symptoms had been subtly piling up. But the shit really hit the fan on August 15, 2023. That morning, my headache was severe, I was slow and confused, and I struggled to find words to express myself…everything just felt off. My husband was extremely worried and took the day off work to watch me. By 10 am, we were at the emergency department. 

I recall insisting I must be having some blood sugar difficulties. When my blood glucose was normal, however, the nurse turned his attention to my headache, and off I rolled to a CT scan. Soon after the CT came an MRI of the head. When the medical team came into the room to discuss results, they said phrases like “edema of the brain” and “could be PRES or MS.” I was told I would be admitted to the hospital (I briefly fought this new development, but thankfully the sensible folks around me overrode my addled thinking). Thus began the nightmare of the following year. 

Through the remainder of 2023, the hospital stays and diagnostic tests were daunting and traumatic. Not only did I feel horrible from whatever disease ailed me, but the constant poking, prodding, and scanning left me physically and mentally assaulted. My husband drove 90 minutes in Chicago traffic from our hometown to Rush Hospital to visit me during inpatient stays and accompany me at neurologist appointments, all while maintaining his work hours and our home. I begged my husband to bring my laptop to the hospital so I could work between tests and medication-induced naps. By the end of the year, we were beyond weary from trying to hold all the balls in the air. Rush struggled to find an answer and referred me to the cream of the crop – The Mayo Clinic. 

Starting from scratch to ensure they didn’t miss anything, my first Mayo Clinic visit was another onslaught of tests and procedures. What we thought would be a 5-day visit stretched to two whole weeks. The capstone of the stay was a brain biopsy, drilling a hole into my skull to remove a piece of brain tissue for examination (terrifying, to say the least). Although invasive, it was the only way to be sure what was happening in my brain. The biopsy did ultimately give us the diagnosis we sought, a rare neurological disorder called Cerebral Amyloid Angiopathy-Related Inflammation or CAA-RI. In short, protein accumulates in my brain’s blood vessels, impacting their integrity and causing structural damage and bleeding. 

Additionally, my body has reacted to the process with an autoimmune response that causes dangerous inflammation, which drastically increases my risk for hemorrhagic stroke (only a tiny percentage of people with CAA get this lovely bonus inflammation response). With a diagnosis, however, came a treatment plan. There is no cure for the CAA part of the disorder, but steroids and immunosuppressants can help reduce inflammation. I began a 3-month course of high-dose steroid infusions with the plan to follow up and see how I responded. 

While dealing with the brain issue, lo and behold, Mayo found another problem. (The more you poke, the more you’ll find, right?) It turns out I also had thyroid cancer! During steroid treatment, I returned to Mayo for thyroid surgery to remove the tumor. (At present, we’re still in the follow-up phase, and my three-month post-op ultrasound showed a new and highly suspicious mass…so a biopsy has been scheduled, and the next steps are still pending.) Sometime in the spring of 2024, I realized how much I had been through and decided to make a list of all the medical encounters I had experienced – here is that list (updated as of July 2024): 

• 3 Surgeries 

• 15 MRIs 

• 31 Lab draws 

• 8 CT scans 

• 4 X-rays  

• 2 Lumbar punctures 

• 2 Angiograms 

• 2 EKGs 

• 2 Ultrasounds 

• 2 Genetics tests 

• 1 each of the following: non-surgical biopsy, bone scan, echocardiogram, EMG, PET scan, EEG, auditory exam 

The losses, changes, questions, and fears have been overwhelming from one year ago. Obviously, the initial shock associated with being seriously ill, especially in my brain, rocked my world. Then came the extreme grief of realizing I had to leave the job where I thought I would work until I retired. This wasn’t just a job, though…it was a family, a community of people I had come to deeply love. I was devastated. One of the reasons I adored that job was because it involved adventure, a way of life that had defined me. Now uncertain about my prognosis, I started facing the reality that many of the activities I had enjoyed so much would be impractical (if not impossible) moving forward. 

On a related note, my physical condition deteriorated quickly. Without the ability to exercise six days a week anymore, and due to horrendously high doses of steroid infusions for months, I gained weight rapidly (the shame and self-loathing are challenging to quiet). The medical bills and trips to The Mayo Clinic piled up while the family income shrank. Financial stress increased day by day, peaking at the point where I had to stop attempting to work altogether and apply for federal disability. Since this process takes up to two years to reach a decision, I am without any income for an undetermined amount of time.   

While all this chaos unfolded, my husband’s mother sank into the final chapter of her six-year battle with colon cancer. On Easter day of 2024, my mother-in-law left this earth, leaving a wake of emotion my husband and I haven’t yet completely processed. The complex grief we are experiencing is so immense that we periodically let out a small squeak, like the slow release of a pinched balloon, afraid of where we might land if we thoroughly let go. 

Another loss with which we grapple is the impending sale of our home. What was a proud achievement only five years ago (my first house purchased thanks to sobriety) is now a 3-story obstacle for my broken body. Since I’m much less capable of helping the hubster with chores, it is also too large a property for one person to keep up. We’re doing some necessary repairs before the ‘for sale’ sign goes out, and then it’s on to a low-maintenance one-level property we can handle. 

These changes and losses are too much for anyone to bear. My relationship with my dear husband suffers as the stress piles on. My disabilities limit my ability to participate in my teenager’s activities. Financial and medical fears, day-to-day unknowns…the pressure is relentless. At the minimum, we know I will spend years on immunosuppressant therapy, praying it keeps my fiery brain subdued. At worst, the chronic microbleeds in my brain will continue to tear down my cognitive abilities, and a future of strokes, shortened life, or both await. 

Nobody knows what next week or year will look like for me….but isn’t that true for everyone? Isn’t that what recovery teaches us, at its core, to live one day at a time? I used to give a lot more credence to the tangible gifts of sobriety – money, cars, houses, vacations. However, the true gifts of recovery are much more lasting and powerful. I have meaningful relationships that don’t wax and wane according to my health or wealth. I have perspective, which allows me to be grateful for my blessings when I am in tune with my higher power. I have more gray in my world than black-and-white thinking, allowing me to redefine my relationship with adventure. Just a year ago, audacious experiences like mountain climbing and skydiving were par for the course. Now, I am learning that adventure can be more subdued and just as rewarding. There is comfort in the phrase “for now.” I cannot go caving like I used to ‘for now.’ I cannot participate in a Tough Mudder like I love to do at least annually ‘for now.’ I cannot run 5 days a week ‘for now.’ The future is unknown, but I don’t have to rule out anything yet. I can live each moment, embracing my current reality and hoping for more to come. 

Above all, recovery has underscored the importance of community. Throughout this journey, I have discovered new communities where I can be both the recipient and the giver of hope.  As the saying goes, I can’t give away what I don’t have. The beginning of that process (as we all know) is to share my story and start to heal through acceptance. Now that I have put my heart out there (again), I will continue to trudge the road…both in substance recovery and in chronic illness…living each day to its fullest, thankful to have this day at all. 

Want to learn more about the communities I have discovered? Check out an online support system for all forms of medical/mental health called The Mighty here: The Mighty. Making health about people. Check out a community dedicated to outdoor experiences for people with neurological disorders called Outdoor Mindset here: Outdoor Mindset. Check out an adventure community for ladies called Women Who Explore here: Women Who Explore: Adventure travel for women around the world. 

Megan Wright is a person in long-term recovery and living with chronic illness, a proud mother and wife, and an avid purveyor of the philosophy “When Was the Last Time You Did Something for the First Time?”  

FIRST TIMERS: Sober Curator Contributor Megan Wright, our outdoor enthusiast, is the purveyor of the philosophy “When Was the Last Time You Did Something for the First Time?” Follow along with Megan’s recovery journey and all of her first-time adventures on Instagram @megan_1st_timers

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