learning how to make a new home with my body.
I have sat down to write this newsletter over twenty times. Each time I sat down to write I searched within to find the right words to say. The right words to describe how I have been feeling for the past 8/9 months. And so here we are today, in this moment, finding the right words to share.
If you follow me on Instagram, you will have seen that these past 8 months have been exciting, magical, soft, endearing. I have had many highs, and special moments where a genuine smile has been brought to my face. I have lived in some beautiful moments and for that I am truly grateful. But this past year has been filled with some not so beautiful moments that have required me to move through, dig deep and in my darkest of moments question why.
This year has taught me new ways to make friends with my body and find new ways of creating a new home in my body. I have learned to meet myself with acceptance, compassion, love and I’d be lying to you all if I said that it has been easy. This body of mine, my body has taught me this year the many different ways in which I need to be present with and for my body.
As a yoga and mindfulness guide, I know the ways in which being present for our bodies allows us to develop a different relationship with our bodies. My different practices have taught me that our bodies hold onto so much. Our bodies tell us to slow down, to pause, to rest, to breathe, to move, to be still. Our bodies do so much holding space for us every single day. Our bodies tell us so much, and sometimes if we don’t pay attention we may miss its subtle hints, and its gentle reminders.
Late last year I slowly began losing vision in my left eye. At first I thought it was stress - I had recently lost my brother and was overwhelmed with his sudden death- so obviously the moment would pass I assumed. Instead it gradually progressed to the point that I lost complete vision in my left eye. Suddenly, I was faced with a not some comfortable understanding I might not ever see again. The prospect of me going blind made me scared as I went from appointment to appointment not getting the answers to why my sight was no longer there. My eyes looked normal but I could not see. Eventually I ended up being referred to an optic neurologist who informed me that he thought I had Multiple Sclerosis. My immediate first reaction was “Black people don’t get MS,” and that there was a mistake. He prescribed me a month long round of steroids to help restore my vision- 25 pills every day for 30 days. After a round of blood tests to rule out any other possibilities and an MRI, it was confirmed that I indeed had Multiple Sclerosis.
For those of you who don’t know MS is when your body’s immune system attacks your central nervous system. This causes inflammation that damages the protective myelin sheath that normally covers the nerve fibers in the brain, spinal cord, and optic nerve, as well as the nerve fibers.
I found out that I had MS on Valentine’s Day. I call that moment “the ultimate moment of learning the biggest lesson of self love.” My phone rang, and my doctor's voice quivered on the phone as she told me. I was shocked, confused. I saw her in October after getting a mammogram and I had a clean bill of health so this was news for the both of us. She said, “Rebeckah I can see the lesions” and everything that she said after that was a blur. I remember sitting on my bedroom floor and crying. I sat there for hours crying- because it was in this very moment I knew that my life would change forever. I sent voice notes to my friends telling them how scared I was not knowing what I would do. All my fears flashed through my mind, what about my kids, what do I do next? What is happening to my body? And why me?
The reality is I fell into a deep depression for a moment. My friends were worried, my kids had no clue what was up with mom and I just lied in bed processing and questioning -what next? I researched and took a crash course in MS finding everything and anything that could help me understand what was going on with my body.
One morning I woke up and was like “girl you got a choice in this” and it was in this moment that I made the decision that I was going to make friends with my body and learn to love my body and show up with and for it in different ways.
Late February, was referred to a neurologist who specializes in MS and unfortunately, our first meeting didn’t go well as he dismissed me as not “presenting” as someone who had MS he looked at me and told me that his typical patients were weak and not as strong as me and in his opinion he needed to reevaluate whether or not I had MS. I told him that I felt my lifestyle choices, my work, my approach to holistic living were the reasons why maybe my MS didn’t present the way it did. The reality for me was that here I was a Black woman navigating medical racism and that saddened me.
While waiting for my second round of MRI’s to “prove” that I had MS, I ended up having another relapse in May. This time I lost feeling in my legs from my belly button down. My legs became so inflamed and so swollen I could barely walk and when I did I had pins and needles. I ended up going back to the same neurologist who dismissed me letting him know that clearly my body is telling me something. I was placed on another round of steroids and slowly my mobility in my legs came back.
I ended up leaving to go to Jamaica right after my mobility in my legs was restored. I took that trip mainly because I felt I needed an escape and reset of sorts and I just needed a moment to just allow my body to pause. Through the moments that had led up to that moment I hadn't given myself the opportunity nor the space to just pause and be in a space of being with my body. I revisited this idea of loving my body and meeting my body for where it was and is at. Acceptance of my body, meeting my body with grace and compassion are necessary for me as I continue to live with this disease.
I also had to sit in an understanding that I have had MS for a long time. Living through moments where I might have ignored the signs until the very moments where my body was like “nah boo… you need to pay attention because I need you to.” Being present for my body in the ways in which it needed me to be.
Another important thing that I had to come to terms with was the fact that at present moment, there is no cure for MS. As someone who works in wellness where we throw around words like “healing” as a part of our journeys; understanding that this isn’t something that I can heal from has been very enlightening and I have had to make space for how this lands for me. Instead, I have changed my language to living with, I am someone living with MS. And as I continue on this journey I rest in a soft space of knowing that healing, fixing my MS is coming to terms and loving myself and my body for where it is at and where it will be. I am giving myself permission to expand in this understanding. Some days it feels empowering, other days it feels scary and I’m learning to live with the uncertainty of it all.
So here I am, softening into new understandings of showing up and loving myself.
So here I am listening to what my body says and needs.
So here I am learning to make space for the uncertainty of the unknown.
So here I am cultivating a practice of being.
So here I am relaxing into the spaciousness of it all.
Here I am learning how to make a new home with my body.
Right now making a new home for my body looks like:
Saying this mantra on a daily basis: ‘i meet my body with the grace and compassion it deserves and needs’”
Moving my body- even on those days where the pain is so immense and I feel like I don’t have it in me.
Being honest with myself and others about my bandwidth and capacity.
Resting- cuz let me tell you MS fatigue is a REAL THING
Speaking kind words to my body, and slowing down the comparison between what my body can and can not do.
Crying in the shower because holding space for me looks like processing the grief that comes along with this.
Being my own soft landing, sharing in moments and giving myself permission to ENJOY life for what it is and can be.
Leaning on family and friends and community when I need to because I know that I can’t do it- bye bye superwoman syndrome.
Finding supportive ways to nourish my nervous system in healthy ways that benefit my wellbeing.
Making a home for my body looks like me softening into those places where I can feel the rise and fall of it all…just like breathing, one breath at a time.
Now for the reason why I’m sharing this with you all. I’m not sending this to solicit pity or sadness for me- because I genuinely am thriving in a place of joy. Nor am I sending this to get unsolicited medical advice- note that I’m good and I am working with some amazing and supportive folks. I’m sharing this with you all to bring awareness to an alarming statistic that as someone who has dedicated her life’s passion to making wellness more accessible and inclusive, it is important, I feel, for me as a Black woman to highlight the fact that recent studies have shown that the experiences and burden of MS in the Black community have been significantly underecognized. Telling my story is about adding to the conversation and amplifying the work needed to be done to create better equity in health when it comes to accessing the resources and supports to support our health and wellness.
So here I am building a home in my body. This journey continues and I will continue to share here because I want to show folks that holding space, being our own soft landings, building a home within are not only forms of self care but important for our self preservation. This is one of the hardest things I've ever done - but with grace and compassion I am meeting myself exactly where I need to be.