This week, I participated in a community sound bath at a local church. As I laid in a pew, immersed in meditative sounds, I started to walk myself through the year I’ve just lived. Y’all, it’s been a real doozy!
It was November 1st one year ago that I got the email with my mold test results. I was taking study leave at the beach and had done enough health research at that point that I knew these results meant leaving a job I loved to endure treatment that was going to make me feel worse than I already did. I’ve never felt so deeply sad while staring at the ocean.
November and December last year were emotionally awful. I knew my fate but couldn’t (or wouldn’t) share it publicly yet. I wanted UPC to have a “normal” Christmas after years of staff transitions and COVID. I led my last retreat with confirmands and knew it might be years before I’d get back to Montreat. I choked back tears on Christmas Eve and braced myself for the difficulty of sharing my news with the congregation.
In January, I had some brutal heart to hearts with youth and families I loved. And then I got to work preparing to do battle with my own body. My family helped me set up a treatment room at home with my infrared sauna, red light therapy station, and room for my rebounder trampoline. I stocked up on supplements, epsom salts, castor oil, and comfy clothes. I made a spreadsheet schedule of medications and treatments. I booked lymphatic massages and got registered with a compounding pharmacy.
By the time February rolled around, I was ready to get started. I dreaded feeling worse but it was the only way forward and I was determined to give this treatment my all. If it was going to blow up my life, it sure as heck better work! After the most incredible going away party at UPC, I started my first day of unemployment diving head first into treatment. I truly don’t remember much about February and March. I know my college roommates came to the rescue and prepared a ton of freezer meals for me, which kept me fed for months. I know my local besties adapted their life to fit my sedentary one. They regularly showed up in my living room to keep me company and keep my spirits up. I know so many of you sent needed gifts, keeping my porch full of packages, which was a huge financial help. And my mailbox was overflowing with cards and my phone full of messages reminding me how loved I am.
In April, my body revolted against the stress of the treatment and decided to throw me a Type 2 Diabetes curveball. I was forced to stop everything but meds while we got those numbers under control. But it wasn’t long before things got back in line and I was able to restart treatment, albeit at a less intense pace. In June I started to notice that I was feeling a little better. While I still had very little energy, I also had less pain. My inflammation numbers were coming down closer to normal. My thyroid was also getting closer to optimal levels and a little light started to shine at the end of this long tunnel.
In August, I got in with an Integrative ENT who finally properly diagnosed all of the fungal infection I was dealing with above the neck. Over September and October his accurate testing and subsequent treatments got me off the dreaded CPAP machine! The Balloon Sinuplasty a couple weeks ago went smoothly and I’m breathing better than I have since…well…ever! Getting rid of that constant fungal infection has improved my energy levels and I’m feeling better than I have in years.
Halloween night I went over to a friend’s house for a little festivity. That Thursday, I had dinner out with friends. And then on Saturday I did three things!: a kid’s soccer game, a movie, and the Iron Pour in Durham’s Central Park. That night, a friend said to me “You’re feeling better! I can tell!” “Oh really?” I said. She replied “Yes! You’ve been out of your house three nights this week and did multiple things today! When’s the last time that happened? You ARE better!” She was right. It’s been YEARS since I’ve done 3 things on a Saturday (unless it was work related) and the best part is that I didn’t need days to recover. It’s so simple, but it’s an amazing feeling to not have to calculate how much I might pay physically for a little fun and socialization.
While February and March lasted for eons, in some ways, this has been the fastest year of my life. Last November is seared in my memory for all the wrong reasons but it doesn’t feel like all that long ago. When I think about all that I’ve been through, where I was, the dark depths I traveled to and came out of, and now where I’m at, I can’t help but be in awe: in awe of my own body and what it’s capable of; in awe of what the right doctors and right answers can do for a person; in awe of what determination can help us achieve.
I’ve both lost and gained a lot in this roller coaster of a year.
I’ve gained a great appreciation for my deep and abiding friendships. I was told that going through something like this will reveal to me who my real friends are. And it’s so true. I’ve never been more grateful for those people that I know will show up and call when the chips are down and when I have absolutely nothing to offer them in return.
I’ve gained a deeper love for my body, a body that I was pretty angry with a year ago. But this body has worked so hard this year to get back to health and I’m so grateful for all that it can do. I’ve lost the desire to put my body last on the list of priorities. Before this, I was one to push through exhaustion, pain, or any symptom that was inconvenient. (This tends to happen after a few years of doctors not offering any answers for your chronic pain or physical oddities). I once walked around on a stress fracture in my foot for 3 months before finally breaking down and getting an x-ray. I’m the one who went straight to urgent care after leading two youth Sunday worship services and tested positive for the flu (pre-covid days of course when going to work sick was more common – though just as stupid). I pushed my body to keep going through a multitude of migraines, chronic pelvic pain, back spasms, sinus infections, and bouts of bronchitis. And why?? For work?? For a job that has managed just fine without me for the last 10 months? After almost a year of not working and putting my body first, I can see how truly unhealthy that way of thinking was. I’m now keenly aware of the fact that I only get one body. Listening to it is no longer an option.
When I count the losses, I can’t exclude the financial ones which will take years to fully recover from. Being sick in America is a bankrupting experience and I’ve had some of the best insurance out there. On average for the last year, I’ve spent (out of pocket) over $1100 per month in supplements, copays, and prescription drugs, and that doesn’t include insurance premiums. Over $45,000 has been billed to my insurance in this one year (with a little more to come before December 31st.) It’s mind boggling to think about. While I’ve been hemorrhaging my savings, I’ve also not put anything into my retirement account this year. As I prepare to turn 43 in a matter of weeks, I can’t help but realize the long term impact of that. But I’ve gained an attitude of gratitude too. I know I’m one of the lucky ones. I have a safe place to live and haven’t sacrificed much in the way of comforts this year. While I may be cleaning out my bank account, I was in a place to take this hit financially and not have to sell my house or car. I’ve had solid support from loved ones and know I can rely on them if things get dire. I have realized more than my financial privilege this year as well. Geographically, I’m situated within minutes of the best doctors. Relationally, I’m surrounded by the most generous, loving people. Emotionally, I have had the best support system and my nearest and dearest took my illness seriously from the start. So many who are diagnosed with mold toxicity are not nearly as lucky in even one of those realms, not to mention all of them.
I can’t help but feel like I’ve lost a year. While this time was put to good use getting in a more functional place, I feel like I’m just emerging from a year in a bunker. I’ve mentioned before that I’ve never been more self focused than I have this year and it’s a weird feeling to start looking forward again. Can I actually make plans for a month out? Can I start to add a little spontaneity back into my life? Can I go out for a fun day and not worry about recovering for days after? The answer to all that is yes but I’m not quite in a place of trusting it just yet.
While we are just starting to think about the holiday season, Auld Lang Syne has been ringing in my head on a pretty regular basis. Those famous words of the great Scot Robert Burns are literally translated as “days gone by.” While I’ve just started to process this last year, I’m sure there will be more gains to realize as my brain slowly deals with everything I’ve been through. While there are some aspects of this year that I’ll gladly never bring to mind, you can be sure I’ll be raising a cup o’ kindness to what’s to come.
Seeking Sabbath 