Unpacking the Unpredictability

I’m a woman who has lived most of her life with the false belief that I have an enormous amount of control over myself, and to a lesser extent, others in my family/inner circle.

This narrow/limited way of thinking and existing completely blew up in my face, or more accurately, my spinal cord and brain, when I was 46 years old. I was rudely introduced to Multiple Sclerosis. And all of that locus of perceived control began to unravel at a rather significant pace.

The “What Ifs” ruminated ever so loudly as I navigated painfully and clumsily through the aftermath of this Fuckening. And they still flare up from time to time, especially when I am annoyingly reminded that my body will punish me with symptomatic flares if I use too much energy at a time. Adapting to the energy conservation mode of living is a constant learning experience and I am not really a fan. However, living with the immediate consequences of over doing it is the biggest pain in the ass as well. Just love when my whole left side is weak and heavy and other parts of my body are completely numb and feel dead and pulsating with pricks of pain. Very fun.

And now – Enter the Fuckening of COVID-we are all existing in this physical and mental space of What Iffing and not knowing and trying to control outcomes and having to live with all sorts of uncomfortable unpredictable realities. I’m fortunate I have been practicing this shift in perspective that can offer more peaceful moments – this acceptance of all the hard pills to swallow ( both literally and figuratively).

It has taken me a week to process my neurologist’s decision to forgo my next Ocrevus infusion coming up in May. Ocrevus is a disease modifying treatment for MS- it wipes out all of your lymphocytes and is supposed to be helpful in slowing disease progression. Not a cure. Just a buying of time. But the risk of extra/bad/terrifying complications upon contracting COVID while being immunosuppressed is too great. So it’s the conundrum of Fuckenings.

At least I have some experience in this area….but it has made me think of all the Conundrums we are currently experiencing. So many unknowns, changes, absorption of disturbing news, polarizing and divisive information overload that is typically not helpful in any way shape or form. So many inhalations and exhalations are needed as we all learn to survive in this reality. In the present moment of whichever conundrum we are facing.

So as we enter into whatever day or week this is, let’s all keep coming back to breathing in peace and patience and compassion while we exhale fear.

We can accept that we are afraid (of whatever it is we cannot control) and simultaneously allow ourselves to keep coming back to the present moment we are actually living in. We can look for solutions instead of blaming ourselves and/or others. We can get creative in how we unpack the unpredictable nature of living.

May we all allow ourselves to practice these things in a way that we can notice the small shifts inside that can become beacons of light and guidance we can call upon.


I miss you. Nine years ago today, as you lay dying, we had our last conversation. Even though you had basically been unconscious and uncommunicative with morphine for those last few days, I placed my head next to yours on your hospital bed and I grabbed your hand and I whispered to you these words: I am strong because of you. It’s okay for you to go now. You don’t have to hold on any longer. You have taught me how to love and how to be a mother and even though I am crying and heartbroken, I will be the best mother I can possibly be to your beloved grandchildren that you adore.

And then I felt your hand nudge mine. A gentle yet firm nudge that let me know you heard me. And I just kept saying I love you. I am strong. You can let go. Over and over.

Those last moments with you have become embedded into the very core of my soul. Just like the abundance of moments we shared for 38 years together as mother and daughter and the dearest of friends.

My grief for you has become a part of me. It can be expansive – filling every part of me and then it can flatten down into a smaller part- like a big balloon that is filled with air and then deflates and takes up less space but is still a balloon.

I hope you know how much I have leaned on you these last couple of years. I have a feeling that you do know. Your love and laughter and peacefulness continues to be the soothing balm it always was and I can feel your presence guiding me throughout my most challenging days. A part of me is glad that you don’t have to see me with MS. And other parts of me so wish that you were here. Not a day goes by that I don’t reflect on the power of your influence and the compassion you effortlessly poured into me and our family.

And guess what? I love you. And I am still strong. And O and J love you and have become these amazing people. I know you already know this. And that you are smiling. And laughing in that boisterous way that is uniquely yours.

The balloon is really full at this time and I need to have a cleansing cry and look at old pictures now. I’m already wearing one of your comfy shirts.

Let’s ask What instead of Why

Ok y’all. Just a bit embarrassed to live in SC at the moment. Since our governor has not issued a stay the fuck at home order- let’s take some personal responsibility and do it ourselves. We actually can use our own critical thinking skills and listening to health care experts who understand SCIENCE to practice staying at home and physically distancing our own selves. Washing our hands, cleaning doorknobs and surfaces frequently, using Clorox wipes immediately upon inserting a debit/credit card into any type of machine at the gas station, pharmacy, grocery store, whatever. This is not rocket science. This is common sense and taking some extra steps when you do have to go out for necessary things and/or to work. And please do not touch anyone else’s screen to sign something. I have been practicing that for years – even before MS happened because- GERMS.

We are all experiencing an unprecedented shift in our systems and within our families and ourselves. Be kind and mindful about how you engage with others and within yourselves. Please stop comparing this to the flu. In no possible way is that helpful at this moment. And can we please stop polarizing the economic concerns against public health? This is an example of the power of the AND word because it is not a one or the other issue- it is a both issue. And we are all trying to figure it out and we will not all agree- solutions are found when we can see all sides of something- they are typically not found when we are rigid in our thinking and refuse to consider alternatives. One thing I believe we can all agree on at this moment is that there exists such a thing as science. This is a priority currently because science informs how we can survive this Fuckery we are all experiencing. Be solution focused- ask what instead of why.

What can I do to manage my anxiety about this?

What can I do to help do my part?

What can I do to help other people?

What are some effective strategies I need to put in place to manage this situation?

What can I get curious about instead of being judgmental about?

What am I feeling about this?

What? What? What? Insert your own questions that are meaningful to you.

One of the beautiful things about asking what instead of why is that you can practice it at home away from other people. It can create a sense of empowerment instead of helplessness. Let’s empower ourselves to flatten the curve for those that are on the front lines working their asses off. Let’s empower ourselves to take some personal responsibility here.

May we all stay the fuck home for now.

May we all get more comfortable asking What.

May we all practice perspective shifting and understanding science and doing the best we can in this particular moment in time. And May we all send out compassion upon compassion for all of us.