Guest Blogger: Naomi Stewart "The Advantage of a Wheelchair"

 A Series of Unfortunate Events

In medicine we are taught to think about Occam's Razor, a philosophical problem solving concept that attempts to search for an explanation with the fewest possible elements.  “The simplest explanation is usually the best one.” Which is fabulous when it works, and is most often the best approach in science.  BUT, sometimes there isn’t a single, tidy answer and that is clearly what has happened in Naomi’s case this last month.  It has taken about 10 days to fully piece each bit of the unraveling back together.  

In mid September she was sick, along with her boyfriend for about 5 days.  They had fevers, cough, body aches and fatigue (he told me that it felt like Covid for him, but we aren’t 100% certain about that being the virus then).  He already had mono in the early summer, and so he couldn’t have been sick with mono again.  Both recovered, and about 8 days later on September 30th she started to feel a bit off balance and woozy.  She was developing inner ear inflammation from the virus the week before (super common in young adults and teens after Covid and other viruses)..  She read her own poetry in a chamber orchestra performance that night, and had to ask for a stool because she was so unsteady.  She didn’t feel great afterwards and headed to her dorm room and started a hot bath, which usually makes her feel better.  

September 30th, the night of her performance and fall

What we didn’t realize until Thursday this week as memories began to come back to her more and more, was that she got into her tub, slipped, came down hard onto her tailbone, and her head hit the back of her tub (a heavy porcelain tub which is very low). She’s not sure if she was knocked out, but she clearly got a concussion and tweaked her neck, pelvis and body a ton. That night, the last night of September, she developed insomnia, which was severe, likely caused by concussion and neck and back pain.  She couldn’t ever get comfortable because every time she moved the room started spinning from the inner ear inflammation.  Concussion also worsens inner ear dysfunction.  

The week of October 1st through the 7th she developed worsening migraines (the worst she has ever had), vertigo, neck and back pain, and was not sleeping more than 1-2 hour stretches at a time (maybe only about 4-5 interrupted hours each day).  She couldn’t do any yoga or her normal activity to help her aches and pains from EDS because of the vertigo.  Accumulating sleep deprivation led to more and more anxiety, confusion and fatigue.  Sometime around the 7th she started to develop horrible sweats and hot flashes, chills, body shaking, left upper abdominal pain because Mono/epstein barr virus was then activating and her lymph nodes and spleen were swelling a bit.   So on top of Covid induced inner ear vertigo, worsened by concussion, body pain from joints that were jarred significantly, as well as accumulating sleep deprivation from concussion/body pain induced insomnia, she got Mono.  Additionally she was becoming more and more sound and light sensitive  because of her concussion and likely migraines.  (She was becoming more like Spiderman sensitive, which is only now starting to lessen a bit).  She was also starting to become emotionally labile and couldn’t figure out why she was so easily crying or irritated. This worsened through the next week.

October 7th-15th all of the above continued, but her mental status greatly declined and she was behaving more erratically, was more confused, severely anxious and afraid because she couldn’t figure out what was wrong with her, and every horrible medical memory she has bubbled up to the surface.  We were in New Mexico and by the 10th could tell that our Naomi was not functioning and something was profoundly wrong.  When I flew in on the 11th I was witnessing a very anxious, redirectable, restless, sleepless Naomi, with flight of thoughts, profound sensitivity and irritability to just about everything, with a desperate need for everything to be organized around her.  She was having continuous hot and cold spells, and would occasionally sleep, but really only for 15 minutes to an hour or so, and then wake up.  If I didn’t know her so well, and how she thinks, it would have seemed that she was psychotic, but all of her thought trains had a clear and real origin, she was not hallucinating, and she was terrified.  In mania or psychosis, people are not often afraid, or easily redirectable consistently.  

On the 12th I had figured out that she had suddenly stopped some of her migraine prevention meds, and I had witnessed her trying to sort through her usual medications (which are not many, and not taken often) trying to figure out how to either sleep or feel better or something.  I had taken over meds and was hoping that things would clear up with that.  At this point I did not know about any of the events or symptoms before the 7th because she wasn’t able to tell me everything (likely from concussion memory loss and sleep deprivation).  She was able to tell me that she was afraid and I could see things were not okay.  She continued to want to talk about all the days and the “timeline” and was working so hard to try and put that together.

By the 15th she was getting more and more confused, and fatigued.  I had thought her meds would have been helping by that time.  I reached out to her neurologist here at home and with the timeline of illness/meds/headaches/confusion (but not knowing about the fall or preceding vertigo) he suggested we get her to a hospital and evaluated for viral induced encephalitis, which can lead to headache and profound mental status changes about 2 weeks after a viral illness.  I called Kit and rather than going to Hennepin County hospital in a city far away from support, we booked two tickets home to Billings that night and went to St. Vincent’s.  

Even feeling horribly, she was so happy to see colors and art in the MSP airport on the way to Billings.

She had a lumbar puncture to sample fluid from around her brain, MRI, CT of her head, and an EEG (electrical test of the brain waves).  Her blood work was clearly positive for active mono infection.  Thankfully all of the initial brain testing lab work and imaging was normal.  In viral induced or autoimmune encephalitis some of the tests can be normal, but most times at least one test is abnormal.  Her exam showed altered mental status, balance difficulties, hand tremors, left sided worsened vertigo, memory jumbling, myoclonic jerks while awake (like the jerks you get when you are falling asleep), profound light and sound sensitivity (hearing whispering that was around her even with earplugs in, all colors more vibrant than ever, etc), significant difficulty focusing her eyes, as well as rapid alternation between dilated and constricted pupils.  She also had and still has lymph node swelling, spleen enlargement and pain, neck muscle spasms, and restricted ability to move her head up and down or side to side due to muscle spasm, along with horrible tailbone pain.  Every time tylenol or ibuprofen wore off she would have rigors/shaking chills, then hot flashes and sweats.  

Because I was still worried about inflammation of the brain tissue we discussed intravenous immunoglobulin (basically antibodies to soak up an misbehaving immune activity) to treat possible brain inflammation while we waited on autoantibodies and mono testing in the fluid from around her brain, the CSF, to return as those had to be sent to Mayo.  Added bonus is that IVIG also helps fight mono, which she was actively fighting. There isn’t a lot of danger to IVIG, so we started that on Wednesday, in addition to a medication to help her sleep. 

Once she was medicated to sleep she was finally able to start putting memories together and kept wanting to go back to her timeline and sort out what was going on and all that had happened.  She began to tell us more and more about every conversation she had been having from October 7-15, and what led her to reach out to people. I am so thankful that she has beautiful people in her life who love her dearly.  She told me that when she felt so bad physically in 2017-2019 she never felt like she could reach for anyone.  She was trapped and felt so isolated in her own world of pain.  This year as she has been writing about that time and working with a therapist she has been building relationships with people and deepening her relationships and trust in us, her family. She told me she never wanted her past traumatic events to come out of the dark someday and derail her from living fully. So while she has felt like death since October 1st, she has been able to reach out for help that she wanted and knew was available.  She just couldn’t get all of what was going on communicated clearly to those around her due to all that was going on.    

On Thursday when we finally got the last bits of “The Timeline” including her vertigo leading to the major fall and concussion, the rest of the story finally fit together.  Now that we know what all we are actually dealing with we can begin to get her put back together.  

Finaly putting the puzzle together

 In a nutshell, and directly against old Occam, but in a series of unfortunate events; she had Covid, which induced vertigo.  Because of vertigo she fell in her tub and got a pretty profound concussion and jacked her hypermobile body all about, which led to pain and worsened vertigo along with insomnia.  Sleep deprivation, insomnia, vertigo and concussion began to snowball into an avalanche of worsening confusion and anxiety.  She couldn’t do any of the normal body alignment work she usually does due to vertigo, so her pain was also preventing her from sleeping. In the meantime Mono hit her, which worsened her need for sleep, that was not possible due to all of the above.  With a deep bank of horrible memories she began to have more and more fear that she would never feel alive again, and without sleep she had endless hours to think about everything.  Her concussion made her like Spiderman with “Spidey-senses” but super wobbly, and I would add irritable, and slightly intoxicated like.  

Her neurologist, hospitalist, physical therapist and I were able to assign each symptom and exam finding to vertigo, sleep deprivation, concussion, major fall, or mono, plus a bit of medication jumbling.  And just as an aside, if you have never read about sleep deprivation psychosis, it is fascinating and horrible, and I now understand how sleep deprivation is used as a torture tool.  

So her treatment plan is simple and a bit complex.  God is her healer and He will be faithful.  Then there is rest.  Physical therapy and bodywork.  Nutrition. Hydration.  Medication management for symptoms.  Time.  Since October 8th she has continued to return to the theme that her family would anchor her along with Christ in the center though these waves of horrible.  So she is now home, in her familiar surroundings.  Sleeping in her parents bedroom where we recovered once before, together.  She is loving on her emotional support dog, Lou.  She played piano for an hour this morning, which is how she recovered from her first concussion in 2017.  She has weathered major storms before, and she will again.  She’s porcelain titanium.  And she’s never met Occam, and he wouldn’t be able to use his philosophical algorithm on her.  

We Stewarts like a plan, and a chart or two.

Thank you for your prayers and beautiful acts of service which have blessed us..  We have needed them.  She has needed them.  We will continue to need them as she recovers.

Naomi has always seen emotions and people in colors.  At times some colors have felt wrong or bad, but as she has drawn and created artwork she has told me that all of the colors and emotions anchored through Christ are beautiful and don't need to be feared.