MymudpieS

The order came from nowhere. It was like an air raid siren, emanating from the parade announcer’s metallic microphone, stopping the Oblong Halloween parade dead in its tracks.

“Will the owl and the pussycat please leave the parade!” There was no inflection in his voice denoting a request. It was a demand. My mother had dressed us up as an owl and a pussycat and placed us in a little red wagon with rusty wheels. Apparently, the screech of the wheels was emitting a frequency that could have jammed the airwaves in WW II and more importantly, drown out the MC’s voice. So after a few harsh words from our mother, defending her children’s right to be included, we quietly exited the celebration with our wings and our tail tucked in submission and defeat.

And when our town’s teenage pregnancy rate was skyrocketing and the only thing to do on a Saturday night was to drink beer on the outskirts of town, our mother created a teen center. She rented out an old storefront on south Range, installed black lights and benches for the faint at heart when it came to dancing, booked bands from all over Illinois and Indiana and charged a dollar a person for admission. REO Speed Wagon was one of the bands, before they made it big. They had dinner at our house. I was in awe of the long hair and the rocker vibes that they brought to our kitchen table. It was AWESOME !

And when our Girl Scout group wanted to learn to camp and survive in the wilderness, our mother was the ring leader. She hauled all of our goofy, giddy skinny butts to Red Hill State Park for a weekend of learning to pitch a tent, dig a commode and navigate our way through nature. As we sat around the campfire telling scary stories, the moon light lit up our innocent little faces. You could see the happiness from within. This was one of many experiences that shaped who I was to become. It reinforced my notion that I could do anything I set my mind to do. It reinforced my notion that I was part of a clan. I was connected and supported. It reinforced my notion that despite all of those vast stars out there in the midwestern sky and all of the galaxies staring down at me that night as I lay in my little warm sleeping bag, I was important. Somehow, instead of feeling diminished by the big, expansive night skies, I felt embraced.

And when our town park and pond were overtaken by moss and slow decay, our mother decided to start a beautification project. It was a labor of love from the entire town but as mayor, she saw the importance of infusing new life into this tiny park where families brought their children to play, their parents to picnic and their grandchildren to fish. It needed to be done. Just as we needed to be the owl and the pussycat or we needed to learn to camp or we needed to experience live rock-n-roll music in a town that went with the sunset. With my father as her silent financier and support, she JUST DID IT!

So I have learned from an early age, that instead of complaining or wishing or dreaming about what you want out of life, you JUST DO IT. You build a supportive safety net of family and/or friends around you that give your wings their flight and then, you envision. Despite the fact that we really have little to no control over life, we can control what we give and how we receive. We can leave this world better than when we entered. And it’s all encapsulated in our daily “stuff”…the smile we offer, the hug we melt into, the kind words we offer to a total stranger. That’s what keeps the world spinning.

So I’m thankful for the small town in which I grew up. Although it felt stifling and restrictive the closer I got to leaving for college, in hindsight, it gave me freedom. The safety and predictability it gave me allowed me to dream. I’m thankful for all of my awesome teachers and wise adults that gently kept me within boundaries, so I could continue on my journey. But most importantly, I want to thank my fearless mother and my dear dedicated father for all that they gave to me.

I still feel like the owl and the pussycat sitting proudly in my little red wagon. But this time, my wheels are oiled and I’m ready to rumble!

It was 3 pm. The air was humid and hot and Main street was blistering in the midwestern sun. We were sweaty and tired  from the long Oblong Elementary trek to our favorite watering hole, Ma Burton’s soda and candy shoppe on east Main. We were small and frail, beaten down from a day of learning and behaving. Driven by thirst and a desire to “ break the rules”, and oh yes…CANDY…It was High Noon at the OK Corral. ( Imagine : rawhide whip crack and some weird cowboy whistling in the background ) Are you with me?

As the saloon’s old screen door slowly squeaked opened, allowing the afternoon light rays to reveal the dust filled aire siluoetting our tiny, desperate bodies…we knew we had arrived. Trembling with excitement and fear, with no ammo to fall back on, only our tiny backpacks full of dreaded homework and uneaten lunches, we entered this musty, ancient, archival place that was straight out of Raiders of the Lost Arc. Once a vibrant pharmacy run by Ma Burton’s late husband, it was now this embalmed place. It was frozen in time and filled with old pencils, mildewed wallpaper rolls from the ‘20s, bug spray, turpentine and the best cherry phosphates west of the Wabash River . Ma Burton had a disdain for children, especially the ones that twirled on her soda stools. We weren’t allowed to spin, so.. game on Holmes…that’s just what we did! She would turn her back and off we twirled. Sometimes getting two full rotations in before being ousted from the bar.

We always got our loot first…We drank our cold cherry phosphates like the true cowgirls we were. Slurping every last drop through our red and white striped paper straws. Then we turned our eyes to the gold. Barrels full of Candy dots, Mallo Cups, Sugar Daddys, Neccos, Cat tails, Licorice… Our fat little cheeks quivered in anticipation. We couldn’t touch the candy, only point, as her old frail hands slowly placed our sucrose into pristine brown paper bags. It was pure torture waiting for her to get the loot in the bag and hand it over. If we would have had bandanas and pistols, the whole job would have gone down a lot faster. But we were only 8 yrs old or so, so we had no choice. We were at her mercy.

So, we got our candy, we got our phosphates, we twirled and we were ousted. Thrown to the street tasting dust in our mouths. It was always worth the risk and we were in this together. We had each other’s back. We took the risk together and reveled in the glorious sugar high as we walked the rest of the way home from school. The candy was gone within a block. The sting of getting caught as the “twirler” faded as fast as the high noon heat.  But the friendship and memories have lasted forever.

I’ve often wondered why this was such an indelible memory for me. I always thought it was the candy, the phosphates, or the thrill of getting caught. But now, as I age and I reflect back on that time, I realize it was so much more. It was about the friendship, the bonds I’ve carried with me my entire life. The knowing that I am never alone along this trek through life. The things that have strengthened me and given me a foundation that has allowed me to endure my MS, my failures, my losses, and all that life has thrown at me, have been my enduring friendships, past and present. And as I’ve ridden my trusty horse down this wild trail, I have collected more precious friends to add to my posse, my most prized possessions.

No gunfights, no drama, just “sweet” memories of me and my brave partners in crime at the OK Corral. Happy Trails to you…until we meet again…

Oh no ! It couldn’t be? I found myself in some sort of horror sci-fi movie at the tender age of five. I stood frozen watching my  sacred source of liquid comfort fly through the air in slo-mo, like something out of the Matrix. It had landed in the corn fields, between stalks ten feet high. My bottle had been banned from the village by my older sister. I was going to start kindergarten and she had deemed it time that I no longer needed such an infantile crutch.

In retrospect, I’m thankful now that she spared me the ridicule and sheer terror I would have faced boarding that school bus with a bottle of milk in my hand. She obviously had a level of wisdom I had yet to develop. At the time, I felt like a desperate addict wondering how I was going to get my next fix!

This was a defining moment in my life as I stood at the great abyss, that massive field with hundreds of rows of terra cotta warriors staring me down. I pondered my next move.  Do I risk my life, go into battle and perhaps never return? Do I risk being maimed for life by a land mine or being decapitated by some wild agricultural creature that had yet to be discovered by the scientific community?

Or do I adapt and become a new and improved version of FatRat.   A stronger, wiser version, free of her “crack-cocaine-in-a-bottle” addiction. I  had no AA, no support group to stop this addiction. “ Hi, my name is FatRat and I’m a Milk-A- Holic.” This was cold turkey, old fashioned detox, sweat it out, face your demons girlie…move on.

And so I adapted. I became more resilient. I learned that I could live bottle free. And a funny thing happened on the way to the forum…I liked “me” better! I felt more resilient, more liberated. My sister knew what she had to do to help me advance to the next phase of my life. Thank you my dear sister. Without this act of kindness, tough love, self preservation or whatever you want to call it, I wouldn’t be the strong woman I am today.

At the time, I felt as if my world had caved in on me. I felt I had no inner strength. For five long years, I had been under the assumption that my “life source” sprang from an 8 oz plastic bottle. But low and behold, I came to realize that my “life source” was from within. It was there all of the time. I just needed to impetus to tap into into it.

And so it goes, with MS or any other crazy chronic disease or bump in the road…we adapt, we forge on and we find our inner strength. Its our essence. It is that inner being that allows us to wake up each morning and be thankful for another sunrise, a bird’s chirp, a smile, the hug of a loved one , a warm cup of coffee. And so it goes…One day at a time.

I remember the hydraulic swoosh of the big yellow bus door opening..the large black rubberized-steps staring me in the face…the soulless gaze of the bus driver staring down at me…the walk of shame down the isle, slowed by the shackles around my little ankles…there was no turning back. I was on my way to prison and no one heard my screams. Wrongly accused with no representation!

Kindergarten was hell. Ok, I know it wasn’t the state pen but it was a close second. I had to wear clothes and leave my animals to fend for themselves. I had to abide by rules and eat prison mush. I had to listen to the Warden tell me how to color within the lines…Oh no, this ain’t gonna fly. I had to find my escape route to get back to my life on the farm with fresh air and nothing but time. My time !

Then one day, Wilma joined the chain gang. And in one glorious, nauseating instant,  I had found my ticket to freedom…vomitus. Who knew 6 yr olds could have body odor. Who knew that body odor induced vomitus? Who knew that vomitus produced a Warden-to-Mother phone call and an automatic “get out of school free card”? Without the need for a shank, it was as easy as 1-2-3.   1) Hug Wilma in the cloakroom  2) Vomit  3) Hasta la vista baby !

I almost flunked kindergarten. My Angel of Mercy, the artist formerly known as Mommy, convinced the prison board that I should just be allowed to continue onto first grade despite missing 65% or so of kindergarten attendance. Now that’s a defense lawyer if I ever did see one !  So when I found out that I was returning to prison after “ time served”,  I informed my legal counsel…”You may be able to force me to go to first grade but I’m never going to college “.

Funny, how what looked like one thing , ended up being another. That prison bus liberated me. The educational system I so despised was my ticket to freedom. It allowed me the freedom to become a doctor and realize my dream of helping and healing. It was a life sentence of sorts, but a good one.

And so it goes with my MS. What looked like a death sentence to me at initial diagnosis,  a large looming bus ready to take me away, was actually just a paradigm shift in my life. Yes, I had no choice but to climb on board. . And yes, I resisted every step of the way with denial and anger and “why me”.

But now that I am on board, I realize I am not alone. I realize that it’s gonna be bumpy and out of my control. But this ride has created a new template for my life.  One that includes the need to reprioritize, to live more in the moment, to slow down and look around. There is no EXIT sign in sight but  that’s OK.  I don’t need Wilma, or a shank, or vomitus…I just need to enjoy the ride, do my best and be joyous…Who knew?

1965…I was MIGHTY! MIGHTY MOUSE riding my tricycle like a bat out of hell around our little sidewalk in front of our farmhouse in Illinois. It was muggy and hot but the cool thing was that I was in charge of my life. I had a mission. I was the tour guide for all of my imaginary friends behind me. They were lined up and ready to roll. Maybe it was like being the leader of Hell’s Angels? I drove like a maniac, peddling as fast as my fat little legs could cycle. “ Keep up with me, everyone!” We don’t have time to stop. We have a deadline, people! As it turns out,  imaginary friends are the best! They love you no matter what. You can yell at them. You can totally control them…and they just obey. They are there when you need them. They don’t ask for anything in return. I had energy, I had groupies. I had my tricycle and I had speed. Let’s roll!

Then along came the ants…Damn ants. They were always in my way. I had to weave in and out in order to avoid killing an ant. I couldn’t kill a living thing so as you can imagine, they slowed us down.  I would get off of my tricycle and yell at them. They were holding up Hell’s Angels, the Macy’s Day Parade, the Presidential motorcade…come on…quit getting in my way. Of course, everyone knew the unspoken truth about what happens if you kill one ant. They have an underground network of communication telling thousands of other ants about the murder. Yes, you guessed it, the first form of social media, Facebook for Ants. With one click I was not only unfriended by millions of other ants, I was America’s Most Wanted. All Hell would break loose. So, I really had no choice but to slow down and take a detour.

And that’s what I am doing now . I’m slowing down and taking a detour. That’s what MS demands of you. You have to slow down. You have to rest. You have no choice. There is only so much energy in your tank and then you are on empty. Its such a bizarre disease in that sense. For the first time in your life, you have to allocate your energy. You have to out source. You can no longer give all that is needed because there is no more to give. It’s a deflating feeling. It feels like failure at first. But then you realize, its not failure. It’s MS.

Before I had MS, I had boundless energy.  And even when I had no more energy, I could somehow conjure up  more. In training as a resident, I had to be up for 36 hrs straight. As a young mother, I was on 24/7. As a physician, I had to be available 100% mentally and physically. And I could! Even when my body said “NO”, I said “Yes”.

Until MS slowed me down. It was the ant in my path. It was causing me to take a major detour. It was forcing me to slow down.

And that’s OK. I allocate my time and energy. I reboot. I live in the moment. I savor the slower pace on my tricycle.  I’m still Mighty Mouse, taking a detour.

 

Ok, we left off with mud and creating and all that jazz. I still salivate at the smell of wet earth. Its my Pavlovian response. When I was a little girl, probably 4 yrs old maybe 5,  I was so excited when it rained because I knew this was the essential ingredient to make my mud pies. I would wake up early and go out to my bakery ( a tiny spot behind the front bushes of our farm house in Illinois). My first patrons were always with me, Pete, my big English sheepdog and Mama Kitty, my elegant Siamese cat with crossed eyes and PMS. They would patiently wait as I concocted my masterpieces. They never ate them though, just a sniff and off they ran. But I felt validated in some quirky way, that my creations had passed the sniff test and they were ready for the oven…the early morning sunshine. So, as those heat up, let  me tell you about MS…

So, when I heard the words, ” You have MS”, I felt paralyzed. All time stood still. I could hear my heart beat pounding in my head. I had known for several months that I probably had multiple sclerosis. I had been a pediatrician for over 25 yrs at that point, so as a physician, I silently knew. I was in total denial ever since I started having severe, excruciating night time leg spasms and imploding type pain in my big toes, about 4 yrs ago. Once my fingers started going numb, I knew I needed a brain scan. That was how I was diagnosed, with classic Dawson’s fingers in my periventricular regions( classic radiologic demyelinating spots) and more demyelinating lesions in my spine. So that was my fork in the road. My river of life that I had so erroneously thought was all mapped out and my row boat that I thought I had total control over, just took a sharp turn. I had lost my paddles, my rudder and my compass at that moment.

So I have had to create a new mud pie over the last few years. The ingredients included early retirement from my job as a pediatrician (my life long passion and identity), living in the moment  ,slowing down and putting myself first ( what a selfish concept!).

So the “re-creation of me” began. Loving myself and listening to what my body needed on a daily basis became my graham cracker crust. Then there was a big old layer of gratitude, for my husband, my sons, my friends, my family and my co-workers. The next layer required me to find an essential ingredient that I didn’t even know I had in my pantry…vulnerability. Being able to tell everyone ( self included), that I was not and am not Superwoman. Realizing I am not the only cook in the kitchen. “ I need you all” was my battle cry. And to my amazement, everyone rallied and gave me what I needed. They gave me what I asked for… the essential ” ingredient” of true compassion that I didn’t even know I needed. So, I am really excited to taste this new mud pie and share it with those that helped me bake it. Its going to be gritty and real. Some days tasty, some days not.

I know I said MS sucks. And it does. It sucks that I had to give up my life long passion. It sucks that my foot is numb and I have to take Gabapentin at night to over ride the thousands of little ” bee stings” I have all over my body. It sucks that now I really am a “dumb blonde”, losing my ability to word find and converse freely at night because my brain has decided it’s had enough. But, that’s all part of this pie. Its my journey now. I have a new river to navigate. I’m learning to allow the ebb and flow of the new river I’ve found myself on to be my source of energy. I’ve found a new set of paddles . And with my dear husband and sons and family and friends as my ballasts, I’ve realized…I’m going to be OK, whatever that looks like. I plan on steering my boat as best I can, every day.

So, as I lay my new mud pie out in the warm morning rays to bake and solidify, I sit in gratitude and grace for all that I have. And I know that no matter what life brings my way, I’m going to be ok because of all of the love and support I have from my fellow pastry chefs. Bon appetit !

This is my first official blog post! Cant believe it. Where do I begin? Oh yes, with mud…

I was diagnosed 4 years ago with Multiple Sclerosis. Since the day I heard the doctor utter those words, my life has changed. So I want this blog to be about my journey since I was diagnosed but in essence, I want it to be about the “ before and after” me since being diagnosed. The “M” and the “S” are capitalized to signify Multiple Sclerosis but the title MymudpieS is about my desire, since I was a little girl, to create. And you guessed it, the first thing I remember creating was my mud pie. This mud pie was made from wet earth, rocks, sand and the occasional insect that was unintentionally added for protein. So, its not the coffee ice cream with fudge topping type. Sorry. I took you from salivation to nausea in one sentence. I thought this would be a good blog name because there can be so many metaphors for a mud pie…layers and flavors and glorious imperfections. Creating something great out of something not-so-great.

So that’s what I’m going to blog about in my weekly posts. My life with MS, my daily creations, my funny thoughts, my sad feelings, my imperfections, my “flavor” of the day. Oh and yes, I have an editor named Amber. She rules my world from her soft bed at my feet. She’s my trusty border collie and my bestie.

Thanks for finding me on the big World Wide Web!  Next post…MS sucks!