some things never change.

Understandable, as some things were never intended for change. Some people might feel stifled or threatened by the very idea of change, as it can be uncomfortable. unpredictable. unfamiliar.

Sometimes, if we’re lucky enough to pay attention, we are able to witness change with mindfulness and nurture understanding. Unveil new appreciation for what was. Unravel uncertainties.


Ever since my stem cells were returned to me, I’ve experienced so. many. changes. At least, as I focus intently on how my body moves post-HSCT – even if only for short bursts of time – like how muscles and tendons and nerves work with the bones to maneuver space and ground, I notice so. many. changes. We HSCT veterans call recovery a roller coaster, and it is quite the ride.

Same coaster (my body), yet on day +80 my ride has been very different than yesterday’s ride. Not too many variables change on the daily; eat the same breakfast; drink the same coffee, water, and berry with MCT oil and hemp protein smoothie snack; take the same antibiotics, vitamins, and herbs; inhabit the same space; sleep the same’ish number of hours.

Yet every day, I’m realizing differences (dare I say, slight improvements?) in function or balance. Like arm movement, grip strength or gait, strength in my back, or feeling my left hamstring for the first time in three years. Slight, but so randomly frequent, the shifts are noticeable. And tough to attend when otherwise occupied. The changes I have noted occurring (surely, so much of the healing is invisible) either last for short periods of time (excruciating pain in my rotator cuff eased after a week), or become the new modus operandi (standing from a seated position without a boost from my arms, walking without swinging my leg, or raising my left knee to take a stair or step over obstacle cones*).

Sometimes, the change appears unwelcome – hot flashes – ringing in the ears – very grey’ish brown hair – amenhorrea – phantom pains from past flares. Sometimes it seems as though my body pushed rewind on a VHS tape; trying to develop an immune system and promote healing the disease slowly unfurling the way it initially set into my body. First the shocking pains in my neck and back, then the peripheral neuropathy in my legs, then the left arm lameness… the imaginings of this healing are almost as vivid as the dream after I received my stem cells. Maybe I’m overthinking, and maybe I’m blinded in my routine, but this healing process is infinitely more interesting than observing than a VHS tape rewinding. The inflammation that was cut out by five consecutive days of chemo (the credits); repairing layers of myelin, slowly rebuilding each and every lesion, which improves how the signals travel from my brain (the film)… I’m not sure what to expect when we get closer to the two-year anticipated end-of-the-window for anticipated healing (the ads).

Sometimes change just needs to be embraced. Even though Dr. Burt does not promise healing – only that HSCT should halt progression of the disease – I hope the changes I’m noticing are not imagined. Regardless of how challenging or uncomfortable, some change needs to be held tight – like my childhood teddy bear that comforted me through moves across Ohio, falls off my bike, being the new kid in school, and scary nights alone in my room – so far, I want to fiercely embrace the changes that HSCT brings and not let go for a long, long time.

Nourishment this week for my brain = reading + MCT oils + rest + yoga+ avocados + steaks + knitting + new podcasts + ideas for a book + developing my business
and body = yoga + stair practice + toe tapping + crouched-gait heel-toe walking + fascia release + electric blanket + wool socks + toe separators
and soul  = music + yoga + sunshine + hugs

Cheers to possibility in the new year!

be well. be patient. be kind.

*weakened muscles, especially the hip flexor, is a common MS symptom. Of course, it is a snowflake disease and every individual experiences the disease differently, as this “MS 101” blogger so brilliantly explains. Thank you for sharing your experience, @Athena’sShield.

2 Comments Add yours

  1. Shannon O'Neal says:

    Love this. Thanks again for sharing your journey.


    1. Shannon O'Neal says:

      All the best in this new year (!) to you and yours. Be well!


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