Brave: A Return to Writing After a Multi-Year Hiatus

For the most part, I consider myself a very brave person. 

I've known serious poverty twice in my life, the first time as a child.  Neighbors and relatives who loved and cared for us helped us through those difficult times, providing food and clothing when we couldn't afford it.  By the second time I experienced poverty, I was an adult, and I felt such intense humiliation that I drove myself deeper into financial disrepair trying to hide how poor I really was. 

But the really remarkable thing about my journey is my body.  

Few people can tell by looking at me, but my physical body has been fragile since birth.   Underneath an abundance of soft curves - curves which  illustrate my relative wealth and access to a rich supply of foodstuffs - and between the strong legs and slim arms -I'm more or less a ticking time bomb. I've been in and out of hospitals, labs and doctor's offices my entire life.  

I've spent the better part of 40 years trying to untangle patterns and see relationships in my health symptoms, in an attempt to predict and thus better manage my symptoms, while simultaneously attempting to be a good friend, daughter, wife almost mother, sister, aunt, niece, employee, leader, and competitive athlete.  

I can only remember brief periods - maybe 3-4 years at a time - where I actually felt "well ."  

The cycle, while also unpredictable, is usually similar: 2-3 years of wellness, fitness and happiness, interspersed with 7-10 years of malaise, fatigue, dizziness, and emotional exhaustion.

At the beginning, I probably didn't seem atypical, but that didn't last very long. 

I was born with mild scoliosis and a slight birth defect in my urinary tract.  The scoliosis stuck with me thanks to my refusal to perform my PT exercises as a stubborn child, but thankfully was never severe enough to hamper me.  The urinary tract defect, however , required a surgery that wasn't exactly common at the time, and then invasive exams to confirm the success of the surgery until I was 8 or 9.  My immature brain struggled to understand the physical pain and emotional horror of being poked and prodded in a private and sensitive place every few weeks to months, and I suffered night terrors until I was almost 10.

I had a happy and well period for a few years.  By the time I was 12, I was experiencing debilitating migraines.  My first came during a trip to the fair with my middle school amigas. I'll never forget coming off of a Ferris wheel in blinding pain. I couldn't see out of one eye for almost 24 hours. For days after, I lay in bed facedown, confused and terrified, sensitive to light and sound, nauseous and virtually immobile.  The most terrifying were the strange neurological symptoms: I'd try to call out to my mom for help, and I could see and hear the words clearly in my head, but each time I tried to speak, my tongue felt like it was buried in a bowl of oatmeal and the sounds I emitted were nothing but babbling slurs.  I desperately tried to speak, but no one understood.  They just patted my head and told me it would all pass, to just wait it out, that I was going to be ok.

(I was, but those migraines haunted me off and on for 30 years. )

Heavy periods began a few years later, which in my late 20s would require me to have an endometrial ablation, and by that time I knew that I also had polycystic ovary disease.  

Although I'd been physically active my entire life, I'd always struggled to consistently maintain activity due to feeling ill so frequently.   

The vague malaise and severe fatigue started when I graduated high school (early, at 16).  Everyone swore it was my schedule - I was very young but I went to college and worked full time - but I had days where I could barely walk up the stairs at work.  Some time around my 17th birthday I began to experience severe depression, and I had my first suicidal episode at 18, at which point I found myself grasping at straws, desperate for answers (mononucleosis? Autoimmune disease?) By the time I was 23 I'd been searching for a silver bullet for 5 years the majority of which was one of my unwell cycles, mostly with doctors who misdiagnosed and dismissed me. By this point dizziness and fatigue plagued me near-daily. I didn't know the difference between vertigo and lightheadedness. (Turns out I had both.)

I started triathlon and running in my mid-20s during that "well" string of 1-2 years, as a way to revive the fitness that had dissipated during an "ill" phase of 7-8 years.  Intense physical activity ended up being- and still is- one of the only things that regularly alleviates all of my symptoms and helps me feel physically strong and mentally clear-headed. Athletic competition became my identity, and in many ways saved my life.

I consistently defied all odds around these diagnoses.

 I finished undergraduate school despite taking nearly 13 years in between all of the tests and changes in jobs that I needed to make to accommodate my illness. I began running full marathons. At one point I my first breathing test that the doctor read the results looked at me and asked me how I could possibly run 6 miles let alone 26.2. I even started graduate school. 

But the symptoms of fatigue and dizziness persisted and created numerous complications.  I lost Jobs and all my fitness more than once due to inability to train - I was too dizzy and queasy to do most things, including work under fluorescent lights.  I took a leave of absence at work.  And then one day I even pulled out of a triathlon swim due to severe dizziness and lightheadedness.  (Again, I didn't realize it was both until later.)

While trying to live my version of a fulfilling and complete life, I also continue to endure a battery of tests.  Nearly all of them were productive , meaning I continued to find some new issue or irregularity, until I was 27 or 28.  Instead of a smoking gun, it turned out I was dealing with 20 or so tiny knives and scissors.  One of the most bizarre exams,  called a tilt table test, had the technicians literally strap me to a table, tilt the table up until I was essentially standing,  then watch me faint in front of them (within around 4 seconds).   The next strangest was a test at the ENT where they placed a mask over my eyes, plunging me into darkness, and forcing .me to move my head back and forth following a small red laser-like dot, until I almost vomited. 

The culprits of the dizziness and nausea at that point ended up being an inner ear balance disorder called labyrinthine hypersensitivity and three benign heart arrhythmias: premature ventricular and atrial contractions, and neurocardiogenic syncope.  The neurocardiogenic syncope was a real kicker.  One physician swore this was almost completely impossible because he insisted I couldn't faint unless I was standing.   That swimming episode? Just happened to have been both my heart and my inner ear fucking with me at the same time.  This was the same physician who misdiagnosed my HPV, which I later learned was one of the highest-risk strains for cervical cancer.  It was also the same physician who told me I had a goiter (enlarged thyroid) for the better part of a decade but never did anything but order lab work - always normal at the time.  

After the vertigo and arrhythmia diagnoses,  I changed all my physicians. I discovered I had asthma and an astigmatism in both eyes.  Those are relatively "normal" things, but they'd undoubtedly complicated my overall symptoms hopeful that the end of the quest for answers was near,. I began a course of treatment including salt pills., beta blockers  and, consumption of large quantities of Gatorade daily, to boost my electrolytes (to prevent the arrhythmias). This proved challenging because excess sodium intake exacerbated my inner ear balance disorder. thankfully , the labyrinthine hypersensitivity also ended up being cyclical.

However, again, I ended up being an outlier.

Part of my treatment for the vertigo was a strong medication I had to take for 2 years and which ended up triggering the most severe episode of depression I'd ever experienced, plummeting me into darkness and suicidal ideation, forcing me into psychiatric care if for nothing but to manage the numerous medications and their potential interactions.   Later on I finally learned how to manage some of the symptoms through self-massage, physical therapy and occupational therapy. I wish I had known that before narcotics were offered to me as the primary course of treatment, but at least I learned what worked best for me.

During this time, I met the man I would later marry. I'm not sure how he handled my mood swings, fear and desperation to be "normal," but he saw through it somehow.   He had an ability to understand and see who I was underneath the illness, the fatigue, the despair, and the terror.   He stuck with me through the next decade-long roller coaster.  

In 2010, after another period of inactivity due to depression and illness, some friends  encouraged me to train for my second marathon. I knew I would be slow at best and probably not even finish, but I needed something to keep me going. So I began a series of weeks of ploddingly slow training and completed my second full marathon the week before Martin Luther King Jr day in 2010. I was the heaviest and least "fit" I've ever been. The weather in Central Florida was abnormally cold and there was a small amount of snow and ice the night before, making the aid stations treacherous and slippery and making dressing for the weather nearly impossible. Completing that race was 125%  mental and absolutely another example of defying all odds

Just weeks prior I had been sent to my first endocrinologist, who sent me for my first thyroid ultrasound.  That resulted in my first biopsy. The biopsy had been painful;, the tissue around my thyroid bed was calcified which meant it was really hard and getting the needle into my tissue to retrieve any sample for the biopsy took a long time and left me with a sore neck for a few days. Nonetheless, I was occupied with my goal of completing the marathon and I used that to refocus myself for the coming weeks. 

After competing the race, I was getting ready for a phone interview for a new job on MLK Day in 2010, but I received a phone call from my endocrinologists office informing me of my thyroid cancer diagnosis.  Although the staging of the disease was relatively positive, given how slowly thyroid cancer can grow, it was in fact metastatic, having spread to my parathyroid glands and nearby lymph nodes.  Surgery and a high dose of radioactive iodine, followed by monthly and then quarterly labs and titration of synthetic thyroid hormone, occupied  the next three years of my life.  

Radioactive iodine was another extremely bizarre experience. The protocols for how much to isolate and where to receive radioactive iodine treatment differ greatly from region and region or from physician to physician. In my case, I was given my radio. I active iodine in the oncology department, and then sent home to isolate myself for 7 days.  I remember sitting in the exam room waiting  for the nurses to wheel a cart into the room wearing heavy rubber gloves. The cart carried a small container, which resembled a lunch box, and both bore the radioactive symbol. The nurse  open several MORE, containers and handed me a cup. I wasn't allowed to touch anything, but had to swallow the pill inside the cup immediately. I later learned that I was to consume the same isotope that was responsible for the Chernobyl disaster.  I was completely isolated for that 7 days during which I had to wash everything I touched twice, including flushing the toilet twice after using it. 

And then the clouds broke for some time. 

I finished graduate school with a near perfect grade point average. Despite working full time and managing so many tests, procedures, and doctors. I ended up finding a career that was relatively fulfilling and far more lucrative than any I had ever done before. I finally discovered the appropriate dose of thyroid hormone. My energy started to return. PET scans revealed the cancer treatment was successful but highlighted  uterine fibroids and some recurrent cysts on my ovaries, all of which all that ended up being asymptomatic and benign.  My mood swings and depression abated. My dizziness and fatigue became almost non-existent. I finally learned how to be both a chronically ill human being and a high functioning leader, something I thought were never possible to do at the same time .I became athletic again. I became hopeful again. 
What some physicians postulated was that I may have been experiencing thyrotoxicosis, causing vast mood swings, neurological and biological symptoms, as my body attempted to cope with the inconsistent dose of thyroid hormone that my slowly-dying thyroid was attempting to release as the cancer took over.   The reason the test results may have never revealed that my thyroid hormone was swinging erratically was simply because I was tested at a time that it was normal.   

I was training mostly consistently again and I completed six more marathons, until another bizarre turn: I ran myself into a femoral neck stress fracture that ended up taking nearly 3 years to heal. 

There was another unique diagnosis that set me back during this period, because some of the imaging revealed that I had recovered from the stress fracture, but I had a benign bone tumor called an osteoid osteoma. At this point I wasn't even surprised to receive another unusual diagnosis, so  it wasn't until the pain continued and I had a repeat MRI that it was confirmed that the stress factor had never healed and there was never an asked you at osteoma to begin with. Unfortunately, my experience with repeatedly receiving bizarre news of my symptoms meant that I had accepted the diagnosis quickly and should have pushed for more exams before I returned to running cycling and swimming regularly.    But I had learned to manage a lot of the other symptoms of my chronic illnesses and at this point my thyroid was very stable. So I was able to manage it all. 

I decided that maybe running wasn't for me and  I switched from triathlon to bike racing, finding a new chapter of my life and a vitality and strength. I never knew I was capable of. Typical life events transpired. My mom and several of my pets died, albeit all of them, rather tragically and mostly right in front of me.  But For the next 5 or 6 years my diagnoses were normal, if not uneventful. My environmental allergies worsened, my eyesight changed erratically, my migraines and asthma plagued me on and off, and I discovered I had a severe vitamin D and b12 deficiency, the latter of which resulted in injecting myself weekly for the better part of a decade. A lump was discovered in my left breast, which also ended up being benign. .   But I felt like I was finally able to start living the life I wanted to live and be the person that I truly was. It was like I was myself again for the first time in 15 years. I  became a state cycling champion and started to train for national level competitions. It seemed like I was once again going to defy the odds.

Now I've found myself back in a similarly difficult place this last year. I had struggled after the pandemic with my thyroid hormone and the general disruption that the pandemic caused all of our lives, but I kept pushing through. Then a string of upper respiratory infections in the middle part of 2022, combined with a few urinary tract infections, triggered my asthma and I ended up having to limit and almost stop my physical activity. The rigorous schedule of traveling and intense training and bicycle racing contributed in small part to my overall fatigue and immune weakness, But I wouldn't have known that because at this point I was in a well cycle again and things felt like I was just tired because I was training a lot while working somewhere between 50 and 70 hours per week.   

I gradually lost all of my fitness and developed a severe set of gastroenterological symptoms, including even worse nausea, fatigue, bloating, constipation and pain. I was initially diagnosed with a small intestine bacteria overgrowth, suspected to be the culprit for my severe gastroenterological symptoms as well as my fatigue and some of my malabsorption, but I could continue to struggle with nausea and fatigue and dizziness after the treatment for the bacterial overgrowth, and follow up tests revealed nothing conclusive.  So I'm once again in a cycle of waiting and hoping and trying to be myself.  Check ups for my recurrent serious issues happen so frequently that I sometimes forget which doctor's appointments I'm at or how many doctors I even see a shell of the person I used to be.   

The brightest spot in this decade so far: I married the love of my life.  

I'm eternally grateful I somehow managed to find him among all the chaos, and thankfully he's willing to come pick me up when I can only make it an hour and a half into what would normally be a two or three hour bike ride.  And, although I know that this period is hopefully hopefully temporary - and that everything I've experienced in over 40 years indicates that I'm going to have another few great years anytime now, I'd be lying to you if I told you that I didn't hate the pattern of waiting for things to get better and then worse and better and then worse.  It also makes me feel isolated, ostracized, alienated, and oddly guilty that I feel like all I talk about is how I'm feeling these days.    There's always a small part of my brain that knows every minute i have feeling vital on alive is likely to be rescinded and replaced with confusion, fatigue and illness.  

Somehow, in periods like this, despite all, I've learned over the last 40+ years, when I'm plunged into a new and uncharted sea of symptoms and tests and diagnoses, once again forced to redefine my life completely, it always feels like experiencing the same heartbreak and frustration and hopelessness all over again.  It took me an entire year to cope with the fact that my identity has changed from one of the most competitive females cyclists in my state to a "coffee rider" who on some days is doing my best just to make it to an easy swim or yoga.  And, for the most part, I'm unfailingly positive, but Some days I just don't have any ability to pretend that things are great.  Once ,during a particularly difficult bike ride that for years had been my normal pace, speed, and distance, I was dropped from the pack and trailed far behind until or typical stop at a local gas station . one of my cycling friends approached me to say hello but  discovered me quietly crying and hoping the tears would be disguised by the drops of sweat running down my face. 

I've always wanted to be an inspiration, a shining beacon of hope for myself and others. I'd like to demonstrate that you can be chronically and permanently ill and still live a successful ,fulfilling and rich life. But I'm human and it's difficult to have to constantly readjust my expectations about what I can and can't achieve on a daily or even hourly basis.

I don't know in these times if I'm even a very brave person at all. If I was braver, maybe things would be different . Maybe I would be pushing myself harder to maintain what used to be a typical  schedule. Maybe I would be doing everything in life that I wanted to do anyway. Maybe I wouldn't feel such hopelessness and despair. Maybe I wouldn't be crying in the parking lot because I can't hang on to a 27-mph bike ride. maybe I would be able to tell the difference between the myriad of symptoms. maybe I wouldn't be experiencing a period of months where all I seem to be able to talk about is how I've been feeling, because people haven't seen me between weeks and months at a the time, and that seems to be all I can say that summarizes what's transpired since my last meeting with them.

I go charging into this next decade of my life like a wounded warrior fighting a nameless and faceless enemy,  exhausted from battle and completely. Unsure what lies ahead.  

I would tell you that it is nearly impossible for me to live a normal life, but to be honest with you,  I've never known a normal life. I only know relatively brief episodes of normalcy and lucidity among the darkness, chaos, and fragility.  But what I also know is that I cling to those moments of lucidity, normalcy, wellness, clarity, peace with every fiber of my being. No matter how difficult things seem physically, I somehow always harbor at least a minuscule kernel of  faith that one day the " cycle" will end, and a normal period will be 10 or 15 years while the abnormal periods are months at best. So far this has never happened, but I maintain hope.  And I hope to maintain that hope, because even when bravery fails me, the hope is all I have.  

The Original MAJ (1945-2019)

This has long been a blog about a mania for insisting that everything is good.  

The Original MAJ (1945-2019)
c. 1964
Of course, I haven't blogged in lit'rally YEARS.  I've spent all my time posting pics on Insta and enjoying my racing and training (after I stopped opining about it all day long,  I achieved a small amount of success. Who knew.)  

But this week we lost the matriarch of my family, The Original MAJ.

A lot of people think that my social media moniker refers to me.  But it's always been my personal tribute to my mom (my initialsake, The Original MAJ).

So, about this "mania" crap. Voltaire’s famous satire Candide chronicles the adventures of a paranoid pessimist, Candide, and a persistent Pollyanna, Pangloss. Candide is constantly thwarting Pangloss and his sunny views; his trademark expression is: optimism is a mania for insisting everything is good when we're wretched.  

The Original MAJ was a Pangloss. She battled two different types of cancer, for 7 years straight.  She was once given 6 months to live; she lived more than 3 years after that prognosis.  But, up until her last few weeks on earth, she clung fiercely to her faith and insisted that this was the "best of all possible worlds," and that "God's got it under control."

(Side note: I respect whatever religion/power you do or don't believe in; Mom was a German Lutheran who clung to unwavering faith in her God and her religion.  Whether that is for you or not, no worries.)

You know my story by now, but if you don't, Cliff's notes: about 10 years ago, through a series of events both in and out of my control, my life and my health spiraled downward. Everything from divorce to illness to homelessness to financial ruin to cancer - basically, everyone's worst nightmares - happened to me . . . . all at once. I suddenly found myself broke, sick, struggling, and incapable of maintaining any of the elements that once made my life so amazing and adventurous and positive. I became petty and sad and tired.

I became a Candide.  And all I wanted in life was to be a Pangloss again.

Literary geniuses: I understand that Candide was a satire, intended to mock the Pollyannas of Voltaire's day.  But I do not mean anything about this satirically: my mom was the most positive person that the Lord (or whomever) placed on this earth.

My mom NEVER lost that optimism.  She never stopped believing that everyone had good in them. She never stopped believing that God would call her home at EXACTLY the right time.

The day she passed, I'd been sitting at my desk staring aimlessly at my lap, alternating between crying and feeling relieved that Mom was no longer in pain.  Out of nowhere, I remembered Mom telling me: "in times of need, just open your Bible with that need on your heart, and you'll open it to exactly the right verse." 

So that day I decided to humor her: I went to the bookshelf and extracted the family Bible, which is from the 1940s and King James version (Mom's favorite). 

After a few moments of fumbling, the crumbly tome fell open to reveal a tattered ribbon, barely still attached, nestled between the pages of The Gospel of St. Luke.  My eyes traveled to the bottom of the page, Luke 20:36, where I read: Neither can they die any more: for they are equal unto the angels; and are the children of God, being the children of the resurrection.

I left it, sitting on my living room table, open to that page, for the next 4 days.

I don't know when (or if) I'll write again, but I came back to update this blog because I own the URL, and always will (in Mom's memory).  And I laughed when I read my "origin story."  Because now, with Mom gone, the origin story of this blog has become the mission of my life.

Exactly as it was the mission of hers.

To that end, the ultimate, absolute, final goal is to take every experience, every feeling and make something constructive and positive of it - no matter how bleak, bitter, or dark it may seem.

So, here's to embracing that mania for insisting everything is good.

Here's to The Original MAJ.