My life with MS is measured by time spent in an MRI tube
Scans becoming the norm shows how adaptation is a big part of chronic illness
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By now, I’ve spent at least 70 hours inside an MRI machine. That’s three days of my life spent lying perfectly still while magnetic resonance imaging (MRI) searched my brain, spine, and joints for answers related to my multiple sclerosis (MS).
At 16, the experience felt terrifying. I’m not claustrophobic, but being in such a confined space, with your head in a coil (think a plastic cage around your face), alongside the pounding jackhammer sounds, the contrast dye, and the fear of the results, can feel overwhelming.
Twenty years later, the process has become oddly routine. After approximately 17 brain and cervical scans, 11 thoracic and two lumbar spine scans, along with somewhere around 15 orthopedic scans to assess avascular necrosis (AVN), I’ve become very used to being inside an MRI machine.
At this point, I know how to prepare for an MRI. And once the process has started, I know approximately how long the sequences take. I measure them in music. I know how to stay perfectly still even when my nose itches or my leg cramps. And instead of letting my mind spiral, it’s almost as if I’m able to dissociate from time itself while lying motionless inside the machine that’s taking pictures of my brain, neck, and spine.
The extraordinary becomes ordinary
I think a strange part about living with chronic illness is that the extraordinary becomes ordinary maintenance. We become fluent in things most people never think twice about. We learn medical terminology that we perhaps never wanted to know. We memorize medication names, lab values, and infusion schedules, and have a Rolodex of specialists’ phone numbers. And over time, it seems life starts to organize itself around appointments, scans, follow-ups, and comparisons.
I imagine that people who are well measure time in vacations, birthdays, anniversaries, job milestones, school years, or relationships. For me, I can mentally organize entire chapters of my life by MRI results that dictate the need for treatments and procedures. I can measure over half of my life in scans.
MRI scans helped confirm my diagnosis of relapsing-remitting multiple sclerosis. Some scans highlighted disease progression and relapse. Others helped me exhale when I saw the world stable.
After relapse, I’m tracking disease activity again
For nearly a decade before my autologous hematopoietic stem cell transplant (aHSCT), my reports included phrases like “multiple hyperintensities identified,” “multiple demyelinating lesions,” or “new activity noted.” Not a single MRI suggested my disease process was stable. Then, for almost a decade after aHSCT, my scans consistently read “stable appearance” and “no enhancing lesions.”
Now, after last year’s relapse, I’m back to tracking disease activity again.
After dozens of MRIs, there is a mental cataloging that happens when you review results. Was that lesion there before? Did they mention that area last time? Is “unchanged” truly unchanged or just unchanged enough? Did that lesion grow? Is there silent progression? Is there truly more damage, or is more noted because the magnification of the MRI has improved?
Tracking MRIs has also shown me that we are remarkably adaptable. Diagnosis, new lesions, disease activity, and even bone death from AVN were all things that were initially terrifying, but have now become familiar. My fear has eased into a day-to-day routine, survival has become logistics, and my life continues to progress and even grow around the very things I once believed could stop it entirely.
These days, MRIs feel like simply another part of living with MS. It’s just another appointment, another set of images, and another hour spent lying perfectly still while machines search for changes inside my nervous system.
But during my last set of images, between the pounding sequences and the reminders not to move, I remembered how strange this process really is. And I was reminded just how much of life with chronic illness becomes adaptation. And I recognize how life keeps unfolding in the space between scans anyway.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Lisa Bowser
Thank you for your article. I recently got a total right hip replacement after falling and breaking my hip where the femur meets the ball of the hip. It was a bad break, and it definitely took my mind off of my MS for quite a while. I am still recovering so it is my focus right now, but with the warmer weather starting up again, I am reminded that I indeed still have MS. I already have my next MRI scheduled for October. They say my new double-jointed titanium hip should be just find in the MRI machine. I still think my balance issues led to the fall, but I can't be positive about that. So I walk with a cane now, just to be safe. My orthopedic surgeon said not to fall again so as not to dislocate the new hip. My main problems with MS is my balance and my eyes and of course the debilitating exhaustion. Stay blessed and continue to be a blessing through your writing.