Episode 34: Visiting with Sally K. Carter of Champaign, IL, and her story, “My Strength To Let Go”

                                    
SSPP ep 34 SALLY K. CARTER “MY STRENGTH TO LET GO”

Sally K. Carter shared her personal journey with M.S. in her story, “My Strength to Let Go.”  Kerry and Jenette check in with Sally about her powerful performance in the live show in February 2020, and how she overcomes her diagnosis each and every day.  

ANNOUNCER: Raising women’s voices. One story at a time. 

Welcome to The She Said Project Podcast. 

(music)

JENETTE JURCZYK: What’s up, She Said sisters? If you can hear the sound of my voice, you are listening to The She Said Project Podcast. Thanks so much for joining us. I am one of your hosts, Jenette Jurczyk, National Director of The She Said Project. 

KERRY ROSSOW: And I’m Kerry Rossow, Founder and SHEnaniganinator.

JENETTE: Always with the shenanigans!

KERRY: I can’t wait to tell you who our guest is today because she is Queen Shenanigan Maker, Instigator, Encourager of all, Superwoman. Sorry, I’m going ahead of myself, but I’m just so excited that she’s here. 

JENETTE: I couldn’t agree more, Kerry. 2020 was a rough year for everybody, but we are so fortunate that we were able to present a live performance back in February of 2020 before the world went upside down and pandemic nation hit—and one of the women who stood on that stage that night was the one and only, Sally K Carter. And she is here with us in the studio right now! Hello, Queen Carter—Queen Sally. 

SALLY K. CARTER: Hello, my She Said sisters! Hello, thanks for having me. 

JENETTE: It’s been quite a year.

SALLY:  It has been quite a year. But a great year nonetheless.

KERRY: Well, I love that about you, Sally, that even when the world is on fire, you know, that old Mr. Rogers saying, “Look for the helpers?” That’s you, even when the world is on fire, you are always finding those silver linings, and even as we’ll hear in your story, even when you’re having your own struggles, you are someone that we all look for. And so, when we’re looking for the helpers, you are always front-and-center. 

SALLY: Awww, thank you for that. I appreciate that. But, you know, it takes people like you to be around to remind me that there are reasons to smile. There are reasons to engage in shenanigans and find a reason to laugh and celebrate all parts of life: the good, bad, and the ugly, and find a way, not to throw it all away, but find ways to learn from it and continue to live life together. That’s my life, that’s my story and I’m sticking to it. [laugh]

JENETTE: And that’s exactly what we strive to do everyday at She Said, particularly with our live shows—creating that safe space for women to be vulnerable and share stories of life: the good, the bad and the ugly, the struggles and the triumphs. And I can’t wait to take a listen to your performance from that night because you shared so much about a personal struggle that until that night had been private and quiet and you boldly shared what you were going through so that other women can say, “Oh my God, I understand and I think I know what that’s like,” and “Oh my God, I’m not alone.” 

So let’s go ahead and listen to your performance and then we can take a moment to reflect. So, to our friends who are listening, I am so excited for you to be here right now. This is a powerful moment cuz you’re going to hear some really special, powerful words from Sally K. Carter, live on stage in That’s What She Said, Champaign. Illinois, from February 2020, with her story, “My Strength To Let Go.”

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SALLY: (recorded February, 2020) (3:32) Girl, let me tell you what happened! [laughter]

It was mid-November, 2014. Like most, I was preparing for the craziness of the holidays. My Thanksgiving feast had to be perfect—and my house? Even more. Yep, I was one of those—Christmas trees and decorations on every floor in every room. That’s normal, right? But that particular year… That’s normal! I don’t know what’s wrong with you! [laughs] But that particular year something about me was off. In fact I had been feeling this way for quite some time, but I couldn’t stop to think about that. There was way too much to do if I was going to pull off the perfect holiday traditions that I’d become known for. So, I began to go over my to-do list: Prepare Thanksgiving dinner—I thought, I’ll make a small meal this year. Homemade dressing and duck, southern style macaroni and cheese, collard greens with smoked turkey legs, fresh green beans, cornbread, lima beans with sauteed tomatoes and herb, sweet potatoes (ooh! gotta have sweet potatoes!) Banana pudding, peach cobbler and my famous caramel cake. I’ll have Mama help me with this one. She can make the potato salad. [laughter] Decorate the house, make the front door wreaths, etc, etc, etc. 

The list wouldn’t stop growing!

Instead of letting some things go, I found myself throwing spontaneous adult temper tantrums. You know? I would say things like, ‘Why am I the only one who cares about things around here?’ ‘I should just say forget it.’ And then there’s the all-time classic: ‘I’m not doing this next year.’ [laughter]

But deep down, I think I wanted the strength to let it all go: the worry, the expectations, the responsibilities. I wanted someone to hear that my tantrum really meant something is wrong with me. 

One of the downsides of having a larger-than-life personality is often times the loudest voice gets ignored. It’s difficult to be saying that someone who needs help when you’re the one that everyone comes to in their time of need. I found that when I screamed, I became known as ‘angry.’ My cries for help automatically, we’re just tuned out. And that just added to the pain and the feelings of frustration, rejection, confusion, and loneliness. All of which came crashing down on me and I suddenly found myself on the floor in my closet curled up in the fetal position—bawling, for no apparent reason. 

Can you believe it? I actually started to scold myself. Are you doing this for attention? Is something really wrong with you? No one else noticed it, so it must be all in your head. The muffled cries must have escaped my chest as I bear hugged myself tightly. 

Outside the bedroom door. I could hear, “Is Mom, okay?” “What’s wrong now?” “What did we do to make her mad?” “Let’s just give her a moment to herself.” [laughter]

But I didn’t want a moment to myself, I needed to be embraced. I needed to understand what was happening to me, but I didn’t know how to say the two little words that could make it all better: HELP ME.  Instead, I did what I had watched my mother and other Christian mamas alike do for years: I prayed, quoted a couple of scriptures and gave myself a strong pep talk. “Girl, you’re better than this!” “Get off that floor!” I got up. But I didn’t just keep it moving as I normally would. 

I called the doctor. It was all a blur. But I remember a pleasant voice on the other end of the phone asking how she may help me. While sobbing, I cried, “I need to see somebody. I don’t know what for, but something is wrong with me. My emotions are all out of whack and my brain is sabotaging me. Who can I see? A psychiatrist? A shrink? I don’t know… Anybody? I just need to see somebody. I’m not okay. 

“Wait, what do you mean you can’t fit me in for 3 months?! You need to understand something. Black people don’t go to the doctor, we pray! So, if I’m on this phone begging you to see someone. This, honey, is a 9-1-1 situation.” [applause]

They squeezed me in. Six weeks later. Fine. I’ll wait this out. I just had to keep breathing until my first appointment. [deep exhale]

I ended up speaking with the head of the psychology department. He was a gift from God because he was a person of faith and he could treat me holistically. He spoke my language. After a  few months into therapy, I still did not have a diagnosis for what was wrong with me, but a few things happened. Number one, I learned so much about my own issues and insecurities. I didn’t know I had those! [laughter] I’m just saying. [laughter] Number two, I learned how to listen to my body as well as my spirit. And number 3, which is so important. I learned tools on how to take care of Sally K. Carter for the first time. [applause] When the time came to figure out what was going on with me, I was prepared. I had the strength physically, mentally and spiritually, to handle what all would come. 

That following summer I expanded my work to Chicago. It was fun, exciting and a really big deal. I was going back to my hometown to serve the very community that was the foundation to who I had become. Living in two cities was challenging as I tried to maintain my responsibilities as a wife, a mother, a daughter, a sister and a friend. 

Understandably, life became more stressful and crazier than ever before. I found myself thinking more often, something is wrong with me. Something’s not right. New symptoms started to appear. I began to experience a level of tired that I could not just shake off. My twenty minute catnaps turned into two hour, lines-in-your-face, drool dripping down your arm, deep sleep. My body was turning on me with electric shock from the base of my neck that would travel down to my fingertips. It would happen when I tilted my head a certain way or if water splashed on my neck during showers. I figured out how to get through my days without bending my head and I chose to take baths [laugh] until I had time to see a doctor. I had to get through this busy summer and it seemed simple enough just to avoid these issues until I had time to deal with it all. I found a way to hold on and keep going. I survived summer 2015. But barely. 

I returned home mid-August and my body literally collapsed. All the symptoms converged at once—the electric shock, crippling muscle spasms, fatigue. And the heartbreak of realizing that my family was suffering from my ambition of wearing a big S on my chest. 

I fell to the floor, but this time I could not get up. I asked my husband to take me to the doctor—convenient care though, cuz I was not about to pay $250 emergency room co-pay! [laughter & applause] Y’all got to keep it real … and keep my money too. [laughter]

X-rays were taken of my spine but nothing was found. They said it was more than likely just a case of arthritis. Hmmm, I’m no doctor, but after almost a year of these intense symptoms, I knew that it was something more. I insisted that they look again. Months of therapy had prepared me for this moment. Though my mind, body and heart were broken, my spirit was strong. I was able to push away all fear and become my own healthcare advocate. Because of my persistence, I was sent for more tests and they did indeed find something. I knew it was bad when I heard the doctor say, “uh-oh.” 

Well, you have my attention now, doc. What is it? 

We discovered what had been attacking me all those months: multiple sclerosis, more commonly known as MS. Well what do you know? It wasn’t all in my head after all! At least, now we knew what we were dealing with. 

The neurologist explained that MS showed up differently in every patient. Further tests and scans confirmed seven MS lesions in my brain and three in my spine. I was truly a walking miracle. The diagnosis was scary.. yet a relief at the same time. The nurse started going through my prognosis and it didn’t look good. I was told to prepare for a life on disability. Wait, what? 

At that moment, my faith took over. And I looked her square in the eye and I said, ‘Oh no—that is not my story. God will get the glory out of this!’ [cheering & applause]

She looked up from her clipboard and simply said, “Okay.” [laughter]

Not the big movie moment I was subconsciously expecting. I must have thought the doors would open up and a gospel choir would come dancing through and waving they hands and suddenly I’d be healed! That’s how it happened on TV shows like Touched by an Angel! 

Either way—this was my moment. And I could hold on to the prognosis that I was given and prepare for a life on disability or I could allow MS to become my strength to let go. 

I chose the latter. 

I chose to let go of the perfect holiday decorations, the perfectly clean house, the picture perfect family. And, for once in my life, that stupid S on my chest. I let it all go. [applause] The moment MS became my strength to let go, I can hear these words ever so clearly in my spirit, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:9)

Whew! It was a real moment, y’all. [laughter]

It took a year of treatment, which included daily steroids, oral medications, moments where I needed assistance to bathe. To walk in physical therapy. I had to figure out how to live my new normal. And that new normal went at a much slower speed than I was used to. So much of my journey was about letting go of control. I wanted to be in control of every detail of this situation but I couldn’t. I had already surrendered my control card [laugh] and there was no turning back. 

For most, MS is a life-threatening neurological disease with unpredictable twists and turns. For me, MS is my strength. 

I’m reminded by my oldest daughter’s first tattoo that reads: My mother, my strength. Aw, nothing—what a way to not get yelled at for coming home from college with your first tattoo! Really, Jaz? [applause & laughter]

My son and baby girl still believe mommy has all the answers. I am reminded by my sister’s declaration over me that I am healed and I am whole. [applause] I am reminded by the many times my mother prayed for God’s favor for her and her three girls and each time He answered. I am reminded of the comfort of my husband’s arms—when he would hold me during the scariest moments and promise me that there would be more to my story—that it would not end like this. And I am reminded of the voice that lives on the inside of me that says that I can do all things through Christ, who lives on the inside of me. 

Life is a journey that will have you laughing at noon and pulling your eyebrows out at 12:05pm.  While we may not be able to control the total outcomes, we can most certainly manage the way we see ourselves during the process. 

Today, I live a vibrant, healthy life. 

I don’t live with MS. I live with my strength to let go and live life freely.

[applause, cheers]

###

KERRY: SALLY! I love you so much! Okay, I got two things that I remembered that always hit me is one, I loved your opening because there was no ‘Let me just beat around the bush here,’ it was exactly what all women’s conversations start with—you know, we don’t mess around, you just, “girl let me tell you what happened”—That’s it. [laughing] That is it. 

And the other thing I have to ask about, I mean I’ve been through some stuff, and never once have I been like, ‘You know what? I want to pull my eyebrows out.” What? Is that a family saying? What is it? 

SALLY: You know, it’s a figure of speech— you know, I don’t need a diagnosis, so don’t worry, listeners out there. [laughing] I’m sure there’s a medical term [laughing] but it’s no different than biting your nails or pulling your lashes. I don’t know where that came from, Kerry… it just came out. [laughing]

KERRY: It makes me laugh every time I hear it! 

SALLY: Pulling your baby hair. 

KERRY: Yes, even though I’ve never done it, the feeling was immediate. Like the first time I heard you say that—

SALLY: It’s the feeling.

KERRY: I totally get it, I see where this is going, but it was the whole new… [laughing]

JENETTE: Let’s all do it together. Let’s all do it together. We’re recording. Here we go—Oh my God, that’s an image. [laughing] But this laughter..

SALLY: You know, that’s totally a meme!

JENETTE: Right? With your voiceover—“Pulling your eyebrows out at 6:05!” [laughing]

But the laughter is so important. Because you just went through this huge process, you know—this cathartic moment of sharing, you know, this personal diagnosis and your health issues. But then you found a way to laugh about it and about life in general and that is so healthy and so important and you give other people permission to laugh along with you.

SALLY: I think regardless of where we are in life, or where we are in time, the reality is, we are always in that state of hysteria, frustration and then happy, joy… I mean it does not matter, it’s inevitable… and so life is just this roller coaster. And so we can choose to stay on the roller coaster and go around, around, different around or go on the roller coaster and when it stops, get off. Get off, you know, and take a breath and laugh and go wooo and laugh about how scary that was. You know, just like when you are at an amusement park, you choose which rides to get on even though, you know, it’s going to be scary and all the things, but then you get off. And so I kind of view life that way. No, I cannot control which roller coasters of life I will get on all the time. However, there are moments in life when I’m on the roller coaster of life, when I can say, this is my moment to get off of the angry ride, the frustrating ride, the sad ride and there’s a moment of hope, laughter and joy and I snatch it and I hold onto it for as long as I can because I do not know when the next scary roller coaster is going to be before me. 

KERRY: Oh Sally, I can always count on you for these nuggets and it always makes sense— the thing I love, the one of like five million things I love about you, is how honest and what you see is what you get. You can always, you know, I never feel like you’re judging all of my shortcomings. You make sense. Like I can totally get roller coasters—get it. You know, when it doesn’t serve you or it’s harming you or making you want to vomit—get off the coaster. That makes sense to me. Like, okay, I get it. I get it. I just need you to be with me all the time. We can just make arrangements—I just take you everywhere with me..and like, “Get off of the roller coaster, Rossow.”

SALLY: ‘Get off of the roller coaster!’

JENETTE: Little Sally Dolls that sit on your shoulder and whisper in your ear. [laughing]

KERRY: Right! Yes!

SALLY: The Sally Doll! [laughs] ‘Girl, let me tell you what happened!’ [laughing]

JENETTE: Indeed. Sally, I have a question for you.

SALLY: Yes?

JENETTE: One of the things you talked about in your story was how seeing a therapist before getting your medical diagnosis and all these things that led up to the final result, had prepared you. Do you feel like going through your battle with MS has prepared you for other things in life, and in the world, I don’t know, like a pandemic? Like 2020? Did your personal experience give you some insight on how to deal with the roller coasters that were coming? 

SALLY: Absolutely. I am grateful for my MS diagnosis. And notice, I don’t say I live with MS. I think words are very powerful and so what I own with my words becomes a part of everything that I do. But I am not naive to the fact that I was diagnosed with multiple sclerosis and there are real side effects to that. And one of the things that I learned was how to listen to my body. When my body is saying enough is enough—for my body is saying, I need to rest, we need to eat more vegetables. You know, your body has a way of communicating, and going through this pandemic, when there were moments when I could have easily held on or stayed on the roller coaster of despair and fear, my body began to respond—tingling in my fingers, different things that is associated with MS and stress, regardless of any diagnosis. Stress is the number one diagnosis that affects us all. And so, when I began to experience some of those side effects that were associated to my MS diagnosis, I knew to stop. I knew to rest, I knew to go to my inner source. I need to pray. I need to read positive books. I knew to watch funny movies, funny TV shows. I knew not to continue to consume news that would make me feel afraid and so it’s things like that that I learned from 2014 from my original MS diagnosis and living with that diagnosis.

JENETTE: I think that’s a powerful message for everyone, especially in this time of worldwide, global crisis: to stop and to listen and to be aware of what you and your body and your soul and your spirit need right now. 

SALLY: Yes, and for me, you know, it may be different for others. For me, personally, wanting to always make people happy. You know, hearing that I am someone else’s light and joy, to be honest, I take responsibility for that. I don’t take that lightly. For me, it’s important that people are happy. It’s important that people feel joy. And so if I cannot be that, I am aware that my presence brings that for people. And so for that reason, because I’m aware of my responsibilities, it is important for me to stay away and rest, it is important for me to go within so that when I come back out to the world, I can be the joy and the light, and it has to be sincere for me. It can’t be that I’m giving you a fake smile because you’ll feel that and that’s why, Kerry, you can say whenever I’m around you, it’s authentic. But my MS diagnosis, it taught me to be responsible and cherish my responsibility on this Earth so I don’t take my smile for granted. 

JENETTE: Kerry’s offering the virtual hugs—virtual hugs for all! Oh my God.

SALLY: I’m taking it!

JENETTE: As if your story wasn’t powerful enough but to hear even more words from your heart about, you know, how we can all take our responsibilities more seriously and take care of ourselves so that when we show up, we show up authentically. I am going to go and play back this recording and write these things down and frame them and hang them all over my house and give them as, you know, gifts on coffee mugs because these are powerful, powerful words and thank you. 

SALLY: I want to say—I’m going to ask permission, please, of people—on behalf of people like myself, to allow us while we are allowing ourselves and giving ourselves permission, will you please do the same? Will you please support when you don’t see us in public? When we are not so visible—can you pray for us? Can you smile in our place? Can you give what we’ve given until we resurface? Because when we are away, we are preparing so that when we come back out, we can be the sunshine, and be the light, and be the hope. But sometimes we have to go away so that we can prepare to do that. So I’m asking, will you support us in that and be our strength and help us so that we can be strong together and then welcome us when we come back because we are a ball of sunshine and we want to be that for the world! We need it!

KERRY: Amen.

SALLY: Amen! [laughs]

JENETTE: We absolutely do need it. Everyone needs that person in their lives that is that ray of sunshine and you have been that for so many people and you continue to do that in your community, in your world. So thank you.

 

I think on that incredible note, we’ve presented our listeners with a challenge today and we’re going to let them go and think about that and how they can respect, you know, the people in their lives that need to recharge, respect themselves to recharge and take some of the incredible words from Sally, your own personal Sally Doll on your shoulder, and go live that life of joy. 

We hope you got something really amazing out of this discussion and each episode that we come together and share women’s stories. And we thank you so much for joining us today here on The She Said Project Podcast.

(music)

ANNOUNCER: Thank you for listening to The She Said Project Podcast in partnership with Illinois Public Media. All materials contained in the podcast for the exclusive property of The She Said Project and That’s What She Said, LLC. For more information on our live shows go to http://shesaidproject.com

This podcast was made possible with support from Carle and Health Alliance and presented by Sterling Wealth Management, empowering women to live their best lives.