One of the themes of this past year has been to clumsily integrate my “new normal”, which is a phrase I kind of have a love/hate relationship with. What exactly is “normal” and why does it forever feel elusive to dwell there? Well, with MS what is “normal” or “doable” changes, frequently.
I have known this past year that things within my body were shifting, My MS was deciding to be a more unruly passenger, demanding to be moved into first class. Many people speak of “addressing the elephant in the room”, to describe situations and problems that have been ignored or overlooked. Life with MS tends to feel a lot like “addressing the elephant that lives within.” My experience with said elephant has been that it is best to befriend it and feed it delicious fruits. Getting angry is okay, yet staying angry with such a large creature only made it ravenous and want to trample things. Trapping or containing the elephant was impossible, and not heeding her distress calls would not bode well. So I feel like over the years we learn to move together, we learn to ride out the hard and treacherous days, and we give each other plenty of time at the cool waters to replenish.
As I have recently been told that my MS has progressed, I feel the ache to share my story even stronger. It makes sense to me now that one of the book ideas I was marinating was a memoir. One that follows my journey with what it means to live with such an unpredictable great beast. Now I find myself gathering up all the many notes and journal pages I kept over many years.
I have lived with symptoms for over 40 years, yet I was only properly diagnosed 8 years ago. I have many tales within, true stories of how challenging and disruptive, alongside humbling and healing, my journey has felt. Today I came across my notes that spoke of what the day I was told I had Multiple Sclerosis felt like.
I picked up the phone even though I did not recognize the number, something I seldom ever do. I picked up the phone, and before the hello even left my mouth I knew that something awful was about to happen. I felt myself collapse inside.
"Hello, may I speak to Tracy Brooks please, it's Dr. Miller calling."
My heart sank, my thoughts scattered like tiny sugar ants, I fumbled to try to close my bedroom door because my kiddos were in the other room happily eating French toast, oblivious to the inner chaos their mama was trying to hold close.
My body somehow turned to warm jello, and the floor was riddled with matchbox cars,so only managed to shut it half way.
I felt myself shake, realizing that this call was about to reveal what deep down inside I already knew. Dr. Miller said something about "urgency and that my regular doctor was out of town and he would surely want to tell me what the fuck was going on himself when he returned next week." Maybe that's not exactly what she said but my thoughts were already making plans for what to do next, and a sliver of me was also defiantly happy, finally getting to realize I had been right all along. I wasn't happy to have MS, I was in part, quite terrified. Yet there was a sense of deep relief that there was finally an answer to the decades of shit me and my body had been through. So in the four and a half minutes this phone call took I somehow anxiously embarked on every emotion that I had tried for so long to keep at bay.
I'm a need answers type of gal, always "willing and ready to do whatever it takes" and can handle the worst crap imaginable if I only know what it is. Don't sugarcoat my shit please, I like it straight, no chaser. So now I finally had some answers, and could work with this. I had spent too long dancing in the dark with all the unknowns my body kept creating, now I finally had the clues and would solve the mystery! If only I had a glimmer of knowing back then when that call came, that this uninvited friend, MS would throw me overboard into the sea of my deepest fears and unknowings.
This journey with myself has often felt quite terrifying. It seems we all must make friends with uncertainty, we all must move through the heart wrenching pangs of grief, of facing our own impermanence. For those of us with chronic illness, it can be a clumsy climb, a never-ending cycle of trying to be with ourselves when our bodies aren’t acting “as they should.”
“The next time you lose heart and you can’t bear to experience what you’re feeling, you might recall this instruction: change the way you see it and lean in. Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering—yours, mine, and that of all living beings. ”
― Pema Chödrön
I have been leaning in, staying present to what is going on within my body, what is happening around me, while trying my best to hold space for others. The challenge for me is always to not grasp, to not hold on too tightly, to anything or anyone. To accept that I can’t always fix things, but I can be present. So I keep trying to welcome what is, without getting sucked into the treadmill of worry or let the despair consume me.
Some of the things that have been easing the prickly places for me has been spending time with my sweet grand babies, my silly pups, and working in the garden. These are the places where I move without overthinking, where I find it easy to just be in the moment, where I feel my heart brim with such deep gratitude.
I wonder, what are the ways you nourish your heart and care for your body when days are difficult? I’d love to know.
I am truly grateful for your presence.
Peace on your path & gently onward,
Tracy
Oh Tracy, I hear and feel your words. Since I have had long covid, I too, have days where I don't know how to get through to the end of the day. Sometimes the fatigue is overwhelming and I have gotten to the point where I do not know what "normal" is. Some days I rail against it all and become short tempered and pissed as hell. Other days, I embrace it all and find a way to move through with grace. My greatest pick me up is to walk outside to my hugging treat and stand with my 3rd eye, and heart and solar plexus chakra against the tree. I give it love and gratitude while soaking in its strength and beauty.
Life seems to be a crap shoot these days. I send you light, love and much grace stay the course because your light and wisdom is needed in the world. Hugs, Brenda
The elephant within- a fitting description for me as well. I have Essential Tremor which I have written about a few times. I wish I could say I handle it well, but that's only half the time. I love trees, but I've never actually hugged one, just try to listen to them. I will start hugging.