March 2022

 Finding Myself Through The Pain

So, it happened again last night. I’m on the dance floor when all of a sudden my body goes weak, I get disoriented and incoherent, I can’t hold my head up, my right side starts to tremor and I need to find my way back to my seat at the bar. Sometimes I can do it by holding onto things and sometimes I need help. Last night I needed help. A lot. In fact, it happened three times and I was kind of a mess. I was just so tired. It’s part of my disease, it looks bad and it is, and it’s also something I know will pass. Eventually. Last night, however, it all hit me a little harder and left me feeling very exposed and vulnerable. I can’t help but feel deep empathy for those who deal with similar experiences so I think it’s important to give this a voice. For anyone dealing with chronic pain or illness, or anyone wanting to learn from it, this is for you. 

The thing is, I showed up last night feeling so good and full of energy. I had had a hard day with my body but I felt confident I had gotten through it. So I was unprepared when everything went to shit. I usually know what to do and how to handle this, but I was left reeling. I felt like I had been plunged into an abyss. I’ve been navigating this illness for 20 years, and parts of it are still unpredictable. What works one time doesn’t work the next time. What triggers it one time doesn’t trigger it the next time. 

The one constant, is my friends and the people who show up for me whenever this happens. I feel the most incredible blanket of unconditional love and it is all given without an ounce of pity, only compassion. The questions, the concern, the offers of warmth, water and respite are very healing for me. I realized that last night, in my embarrassment I was probably abrupt with some people and for that I am sorry. Not my finest moment. I’ve done this a million times and it doesn’t always get easier. Please believe that your kindness does not go unnoticed or unappreciated, and understand that sometimes I don’t know how to accept the help because my body is not doing anything recognizable. There are times I simply do not know where to put all of this. It’s a lot. It’s overwhelming. All of this intensity is being thrown at me at once. I’ve learned to honor my limitations and take help and that there is no shame in that, and sometimes in the moment, I feel shame anyway. Please know it’s not personal. 

I’ve learned so much about myself, and yet, I still lose my way. I have a very intense 2 weeks of work ahead of me and I need to be emotionally and physically strong for what’s ahead. And I’m not. I’m frustrated. I’m exhausted. I’m weak. And when I got home last night I realized that I was also angry and I don’t get that way very often. I never say why me but I do say ‘what the fuck’ an awful lot! I took a look at my anger, let it talk to me and gave it space to teach me. I’m redirecting that energy into feeling strong again.

And I want to give permission to anyone dealing with this to feel everything. For the people who carry the burden of chronic illness and don’t often know what to do with the depletion of constantly lugging around the pain and the deluge of feelings that pack such an emotional punch, I want to tell you that it’s okay to not be okay. I want to remind you again that you have a right to be angry, exhausted and confused by this. This shit is hard. Those feelings are valid.

It’s okay for you to feel. Anything and everything. So go ahead, be angry, frustrated and confused. Just don’t unpack and live there. Process it, listen to it, honor it and release it and focus your energy on the other truth in your life which is this…

There is beauty everywhere. It looks different for each of us but it exists. I don’t think anyone would look at my life and not acknowledge that it’s beautiful and filled with love, laughter and sparkling magic! I’m freaking fortunate. I’m not diminishing what I’m going through by any means, I’m saying perspective really does make a difference. It has the power to shift the weight of the burden I carry. This sucks. It’s dark and it’s ugly. It could be so much better, and it could also be so much worse. I always have that. If you can’t find something, then you reach out to me. I’m really good at finding beauty and silver linings and I won’t let you be alone with this. 

I know what comes next for me after one of these flares…3 days of unexplained, intense body pain, and a piercing headache that never leaves me alone. A little reminder that I’m not really well, like I need one. So, today is hard. And it’s healing. It sparks my resilience. It connects me to how much I’m loved. Today I will spend time focusing on self care. I will recenter, reground and reconnect with me. I will love myself through this experience, both the physical and the emotional, with tenderness and kindness. I will show myself grace. 

And I will remember this…

Sometimes it’s really easy to resent this illness and everything I continue to lose to it. I’m also glad I have this and not something else. Mostly though, I have a great deal of respect for the things I’ve gained because of it. The insight, the strength. In some ways I feel like one of the lucky ones because my body feels so much, so intensely. It’s constantly giving me clues and signals as to what it needs and I am profoundly amazed at how it keeps showing up for me after everything we’ve been through. It keeps taking hits and yet I’m still standing. That is so humbling to me. It’s taken me to another plane where every moment has become more precious and every little seemingly insignificant thing around me holds wonder. When I am there, in that space of clarity, it transcends the pain and the difficulty. And it brings me back to serenity and gratitude.

The Goddess Behind The Hoopla

I respect that as a white woman I don’t get a place at the table about black issues, because they’re not mine. I will sit back, listen and learn. I am open-minded and always interested in gaining knowledge about things I don’t understand or may inadvertently contribute negatively to. In this one day, I have gained great insight into the emotions swirling through the black community. While there are many things I still don’t understand about last night, I have come to see how personal this is for a lot of people. Having said that, I feel compelled to speak about the violence because it is a humanity issue. Especially when it is broadcast on public television for the world to see. I have conversations with men and women everyday who deal with trauma from violence. It does not discriminate and it is not selective. This incident is very nuanced and I don’t pretend to understand all the ramifications for the people involved, and I think it’s also fair to assume that many people from every walk of life have been affected by this. My opinion is not a judgment, it is an open door for constructive and thought-provoking conversation. It is also an urging to proceed with caution before we put our stamp of approval on any behavior.

Violence and the casual acceptance of it is an epidemic in this country and one that I have had personal experience with. I’ve been on the receiving end of violence more times than I would like to count and it was because I am female. Violence has become a very socially tolerated means of expression and I have a big problem with that. A problem that belongs to all of us. I believe that anything we accept without question seeps into every aspect of who we are and how we live. I also have mixed feelings about being unflinchingly against violence because I have seen that sometimes, when you are facing a situation of being continually bullied, violated or berated, that violence and fighting back is the only thing that speaks to that person. There are many people who have lived with unthinkable dehumanization and have seen no path to justice but through violence. I have no room to judge any of that. I have found ways to stand up to people and defend myself without losing my integrity to violence, but trust me when I say I have been in situations that have made that extremely difficult. Obviously, sometimes circumstances arise that challenge our values. For these reasons, I am encouraged by the collective conversation happening right now, because there’s much to be learned if we’re willing to listen.

To be clear, I believe that the bullying by Chris Rock against Jada that preceded Will Smith’s reaction was in itself violent and dangerous, and for many people more triggering than the physical outburst that came next. I will always make space for people who feel triggered. No matter what. And those people don’t need permission for their feelings. Everyone deserves a safe space to process. And just because this happened in the world of pop culture does not mean it is less real or human. There is an entire population of people that look to pop culture for their example and their heroes, whether we like it or not. Most of us idolize people that we don’t really know, that we respect and feel a sense of reverence for, whether it’s a musician or an athlete or an actor. When they display their flaws and humanness, we begin to examine ourselves more deeply. 

The biggest issue I have with the altercation that took place at the Oscars is that now the actual important issue at hand is being overshadowed by a distraction. Social media is flooded today with memes that take the focus entirely from the reason this incident took place, which is the inappropriate insult that was levied against someone in a vulnerable position. The autoimmune illness, alopecia, that Jada Pinkett Smith deals with every second of her life is serious and heartbreaking. We cannot begin to grasp her courage. It is also something I can speak to since I wear a chronic autoimmune illness like a second skin. I have been on the receiving end of great compassion and multiple judgments, many of which are well intended, yet misplaced and misinformed. Instead of talking about the importance of educating ourselves on how to respectfully treat people with chronic illness, we are once again making this all about the men, the egos, even Will and Jada’s open marriage, and completely missing the point. I believe that how Will chooses to defend his wife or her honor is between them. I have no idea how it made her feel, but I am learning how it made many other black women feel. In my opinion, his angry grandstanding only served to take the focus from the important issue of her health, and yet the lack of accountability we hold people to is exhausting and his reaction is understandable. Chris’s words were vicious and deeply hurtful, and I’m shocked that no one saw this coming given who he is. I am at the same time, disappointed that Will, this articulate man who has an incredible grasp of the human language didn’t choose to use his words. There is so much power in well-placed, perfectly timed words, and a few minutes sharing his first hand account of living with his wife’s illness could have been so much more influential, and quite possibly a very humbling moment for Chris. Imagine hearing a heartfelt testament to his wife’s strength from that podium where literally millions of eyes and ears were on him. He could have opened the door for this important conversation. I have a great deal of respect for Will Smith and his strong presence, and that, in my opinion, would have been an act of love. Speaking of love, I also felt it was a dangerous precedent to lay the blame of his actions on “love” making him do crazy things. Love or a woman is not responsible for this. That is a narrative we need to change. His actions were his, rooted in anger and he should own that. Period. He can own his response with pride and courage if he felt like it was the right thing to do. 

I believe that bullying and mocking someone who is vulnerable and struggling is an insidious, malicious form of violence. The more we ignore the mistreatment of others, the more we condone it. I believe that volatile physical responses that trigger millions of people who have experienced violence deserves a second look. We cannot continue to ignore triggers from an epidemic that we’ve allowed to happen, and then wonder why our society is so mentally unstable. Everything that requires change begins with us. We must look at our apathy toward deplorable behavior disguised as comedy. We must look at our celebrity worship and how easy it is to forget that they are human beings, too. Perhaps Will’s solid and well-placed slap was an awakening of sorts for all of us. Maybe we learned there are lines you can cross that you shouldn’t, there are rules of decency even in entertainment and that somewhere deep inside, we all believe in something. 

I can detest the violent outburst and the bullying that provoked it, because they are not mutually exclusive. I can lean in and listen to the cries from all the people who were deeply affected by this. And I can certainly hope that we choose to do better as a society to be more mindful and caring when it comes to those who deal with difficult circumstances we really know nothing about. The fact is, there is a woman who is currently in the limelight for neither her skill, intelligence, bravery or talents, but simply an altercation and a disease she didn’t choose, that few people understand. As humans, we can all look inward and do better.

Your Arrival

Someday will come. I promise. 

Someday you won’t care anymore where they’re at or what they’re doing. You won’t see their picture and feel a twinge of what if…I’d never let him say hello. You won’t hear their name and feel the hot sting of fear. You won’t wonder who they’re with and what lies they’re telling about you or themselves, even in the dark of the night when their guilt is eating them alive and no one else can hear them. You won’t care what their version of the truth is. You won’t be hurt if they gave your song away to her because you’ve already taken that back. You’ve taken everything back. Your power, your memories, your places, your freedom. You’ll feel light and breezy, and at peace and you’ll know that’s because someday is here and you don’t have to worry anymore about watching your back, guarding your words, walking on eggshells or trying to figure out if you’re being gaslighted or not. You won’t have to anticipate their moods or wonder why they feel a need to emotionally manipulate you. You won’t be more protective of their heart and wounds than your own, because you’ll understand now it was futile. You’ll realize that every time you felt like something was off when you were together, you were right. You weren’t crazy and, yes, you were in an unhealthy emotional and physical place with a person who wasn’t safe, and you’ll be so glad you chose not to abandon yourself, even though the way or the why wasn’t clear and going forward alone was scary. 

You’ll arrive. To a stronger, healthier, more evolved version of you. 

Because what you did with the time after every hope and dream fell apart was work on the pieces of you that broke or got buried beneath the rubble and confusion of the insidious toxicity. You were hurting, yet wise enough to realize there was a great deal of knowledge to be carried forward and you wanted that, so you chose to feel everything, unravel every layer and put each remnant where it belonged, all the beauty, the sadness and the pain. You didn’t distract yourself and ignore the deep, piercing ache, instead you leaned into its heat, absorbed every nuance and learned from the discomfort. You let yourself cry, walk through the misty moments of remembering and you finally breathed. The kind of restorative inhale and exhale you could never take when you were together. You gained perspective, felt the softening of your heart return, slowly began to refuel the light of self-esteem that was dimmed in the struggle and you found your way to trusting yourself again. You could finally hear that once familiar faint whisper, the voice of your Knowing, above everything else. And you carried it all with grace and gratitude.

Because you are a warrior. You invite the lessons. Your resilience is mighty and forged from the sharp and shattered pieces that people tried to destroy you with. In fact, they reveled in it, and oh, how they underestimated you. 

You choose triumph. You are indestructible. You will ever rise. You will always rebuild. And each time you do, you will be a new and more powerful force to be reckoned with, possessing a shining brilliance that cannot be overshadowed or cast out by someone else’s darkness. 

Your clarity will set you free.