We are just about halfway through 2024 and I feel like it’s been a pretty full year! I expect life's ups and downs, but what a roller coaster few months!
It started off with the buzz and excitement of planning my wedding. I loved the exchanges with all of my friends and family about the details of what to wear, about colors, and just the sheer anticipation of how the day would go.
It was fun to reconnect with people I don’t see enough because they live in other cities and share about their trip to join us and just anticipate a long overdue time together.
Then, of course, it was the actual wedding day!
It was honestly quite a blur. It was magical, but it went so quickly! There were thousands of smiles and love in the eyes of those who were happy for my husband and I and the family we have united. The elation of my beautiful granddaughter/flower girl as she twirled in her beautiful dress and spread joy across the room with her contagious love for the whole experience. The hugs! SO many hugs!
And as the day ended there was this touch of sadness for not having enough time to adequately catch up with people I don’t see regularly. How I thought there would be time to sit with each one for a few minutes is still a bit beyond me. The gratitude for their presence was much higher than the sadness, but I’m sure it’s the gratitude for their love that made me a bit sad I couldn’t share more time with them.
So, in roller coaster terms, this was that first uptick on the ride and that amazing rush of flying downhill!
But the ride took a sharp right that jolted me…
Two weeks after the wedding, we saw Dune 2 in an IMAX theater. It was three hours of flashing, crashing explosions and honestly, a great way to say goodbye to IMAX movies.
So, before I share what happened after the movie, let me preface it with some medical history.
In 2001, I was under an extreme amount of stress as a 24/7 single mother with four jobs, two children under 11, and a pretty serious caffeine habit. I was sleeping less than five hours every night and just for good measure, I had two volunteer gigs.
On one hand, I thought I was this powerhouse woman who was rockin’ it. On the other hand, I was literally killing myself.
One morning, after a few weeks of not feeling great, I couldn’t get out of bed. I had very little use of my motor skills. I couldn’t get proper footing, couldn’t drive, couldn’t hold a coffee mug, and worst of all I had a severe stutter and couldn’t speak well.
I was sure that I’d had a stroke or a sudden onset of a disease. I called in sick and went to see a general doctor. I ended up in an emergency room.
Between the doctor’s office and the ER, there were at least seven different tests run. They tested for stroke, heart attack, blood pressure issues, and everything else they could think of. All of which were negative. They literally could not find anything physically wrong.
As I lay there in the ER bed, literally unable to speak at all, a nurse came to talk to me. She was telling me the results were all normal and as I was thinking to myself, “Lady, you’re crazy, I can’t move! Something is really wrong!” she got in my face and seemed angry.
“Honey, this I stress!”
I was beyond upset at this moment. If I could I would have told her off with some very strong expletives… But as I write this today, because hindsight is 20/20, that nurse holds nothing but a place of pure gratitude.
Her words haunted me. In my soul, I truly knew what she saw and that she was right. I had no idea how to change any of it, but I certainly knew it had to change.
I had great benefits through my job at the time, so I was granted short-term disability and was able to rest physically. Mentally and emotionally, this was terrifying. I’ve experienced a great deal of powerlessness in my life and this period of time is up there in the top three major life awakenings via powerlessness.
After three weeks of no work, no volunteering, family helping with my girls, and a lot of sleep, my body healed and my motor skills recovered.
The final diagnosis by a neurologist was A-typical migraines. I was told very specifically to focus on managing my stress.
I could go into all the stress-management tools I’ve learned and practice here, but that’s another blog/book.
Over the years, I had many episodes of lost motor skills/migraines. I had found many ways to manage stress and knew when an “episode/migraine” was coming. None of the episodes lasted more than a few hours with my intention to heal and manage life better.
In 2021, I was diagnosed more accurately with Functional Neurological Disorder. This is a condition that was not named by official medical standards until 2013. The name alone really made more sense and I began to understand what was happening with each episode as there is a plethora of information about what it is and how to treat it online. It’s not deadly, it rarely progresses and with some intention, it can be fully healed.
However, the symptoms can shift, which is what happened two weeks after the wedding.
An hour after we left the theater, we were waiting for a table at a restaurant. I felt sudden and extreme nausea and I fainted. I hit my head on the wall and then the cement floor as I fell.
They called 911, and as the paramedics helped me to get my bearings and check my vitals, again, all was normal. So, I felt that I had had an episode of FND and chose not to go to the hospital, but just to get home and rest, as that is typically the cure.
However, because I’ve never lost consciousness and because I hit my head twice, I did call my neurologist to request an urgent appointment. She requested an updated MRI and I asked her if we could also check on my cervical spine as my neck had been very tight since the fall and well, I was going to be in the MRI machine anyway.
I’ve had severe whiplash three times in my history, in 1990, 1995, and 2006, but hadn’t had a cervical spine MRI since the last one. So, I was pleased that we could check this too when she agreed to add this to the brain MRI.
Within 20 minutes of the completion of my MRI, I had four calls from my doctor and her office that I needed to go directly to an emergency room.
In my very short stay at the ER, I was told that it wasn’t urgent, but that I did need to get in with a spinal doctor very soon.
So, while I was completely focused on the FND episode, a new issue presented itself. I was now diagnosed with severe spinal stenosis and bulging discs at C4-5 and C5-6 and surgery is likely, but not urgent. If you’re not familiar with spinal stenosis, it basically means that the bulging discs are applying pressure to my spinal cord and the spinal fluid is getting cut off.
Talk about a hard right…
So, here I am coming from one of the happiest times in my life to this new stress, fear, and bewilderment. I have a million questions about both of these conditions and have to patiently walk the process of waiting for appointment availability, honest conversations, serious considerations about surgery, and many other thoughts spiritually about free will and perhaps life choices that have led me to this point.
Again, another book in its entirety.
But now the coaster is coming into a long flow to the left and the breeze feels nice…
I waited to write this blog until I really felt I had enough facts and was grounded in what it might mean to come back to the landing station of the ride.
My meeting with the spinal surgeon was the final piece to best understand this ride (so far) and land the words to express it.
The spinal surgeon that I was referred to by the first spinal doctor (who is not a surgeon) comes highly recommended and is an amazingly well-spoken and sharp young man (to me). He made it very clear that I am a candidate for surgery and that we could schedule it for this month.
However, he also said some things that surprised me coming from a surgeon, as my impression of Western Medicine hasn’t been very high in years past. He said that this condition has likely been here for a few months if not years, and that I am one of the many people my age, 56, who have this type of condition and function quite well. He said that I don’t have any pressing symptoms that warrant an emergency, but that should it come to that, I would know. He suggested that should there be no active symptoms, we could choose to revisit an MRI in 6-12 months and determine if there is any pressing need for the procedure.
My husband and I asked all the questions about what warrants an emergency, what to look out for, and what is the procedure and recovery about. We left there feeling fully armed with the information to choose the next steps…
So, as I write this today, this particular round on the roller coaster is coming to a full stop and I’m stepping out of the car. As I step on the platform and catch my breath, I’m relieved the ride is over and yet smiling because some moments were really amazing!
I have chosen not to have surgery anytime soon. I have chosen, per the impressive young surgeon’s suggestion, to keep focusing on my physical health, to get stronger, and leaner, and to stay positive. I am ever hopeful that no symptoms arise and that the MRI in 6-12 months has no changes.
I am well aware of what the symptoms are that may cause me to get on the ride again. I know that if lack of balance, clumsiness, and a few other awful symptoms show up, to get on that surgical calendar. I’m not afraid of the surgery, but now I know that I may never need it. I know that hundreds of people have the same degree of stenosis as I do, yet they function just fine and don’t even know they have it.
This fact alone has been the most revealing (and relieving) information of this whole physical ordeal.
FND has long been disputed as a controversial diagnosis. It has been discussed, researched, validated, and invalidated by many experts, studies, and patients. Is it all in my head? Maybe. Maybe not. I know the episodes are real and they are spooky.
Spinal stenosis has powerful proof in the imagery of X-rays and MRI scans that are difficult to look at but leave zero question about the way the human body can degenerate with age and injury.
Both, allow me to choose my thoughts, my actions, and my intentions from an Inner World (capital I, capital W) perspective.
From the platform of this roller coaster, I’m heading off into my day. For now, the ride is over and for now, there’s no intention to get back on. Should I find myself in a car and hear that ticking on the incline again, I’ll know that soon that means I’ll have my arms up in the air shouting “Whoooo!” as it descends with a thrill. I’ll know there could be a hard right or a nice flow to the left and that eventually, the landing station will come again.
My intention for sharing all of this is to say that no matter what twists and turns that life throws at us, joy, groundedness, and trust will return. Life, with all of its scary moments, tough times, and stress, will not stop, but how we manage that and what we focus on matters.
I choose to focus on what’s right in the world. It’s my way. I get scared. I get frustrated. Yet, I always return to my foundation of gratitude.
Today, I could not be more grateful for my new marriage and the future my husband and I have planned for our old age. I could not be more grateful that I am pain-free, stable-footed, and clear-minded. There’s plenty of shadow and light to see, but the light always catches my eye.
Thanks again for reading. I always love the emails and notes those of you who read my blogs send. I hope I’ve given you something to relate to and something to support you as you ride your own roller coaster.
Here’s to those fun views on the loops ahead!
Paula~
