Elle’s Cliff’s notes – for your edification, enjoyment and the things I don’t always have the guts to say, literally

22. I am lucky to be friends with a certain “Jen,” “Brad,” “Angelina” and stare at a framed note from Michael Stipe above my desk daily. I am even more proud to be friends with people with whom I went to Germany with Frau Alberding or sat next to in one of my Honors classes. I willingly take teasing about the crush I had on a student teacher in Honors U.S. History. I deserve it.

21. I have a B.A. in German, a MURP in Urban Design, a MA in Student Affairs Administration for Higher Education and the start of a Ph.D in Higher Ed Administration. I am a Hanover Panther, a Ball State Cardinal, and a Michigan State Spartan. I recruited for BSU in southern Indiana and Cincinnati – I spent three years as a certified “road whore.”  Oh the things that go on after college fairs……

20. I am married to Kent – that makes me The House of Payne – Duchess of Kent. We met online. I thought I’d die before that happened. I look young and often score the kid price at the movies when I feel well enough to go. Then he feels like some kind of DSM-IV diagnosis taking a little girl with a wedding ring to the movies. Bless your heart, honey . . . .

19. I worked in a funeral home which I did not find creepy at all. It’s the only thing we all have in common. My desk name plate read: “Ellen Payne Osborn 1975 – . The best things come in small packages.” I know most of you are slightly skeeved out right now.

Before my last mother of a surgery, I had my own Will made. My Advanced Directives, Living Will are done – my husband and parents know that I have begun the process in which I give my body to the Indiana School of Medicine first, want a green burial second, and cremation last. That skeeved me out.

18. I sleep with my ipod playing books in German, Italian and Swedish. I like to think I learn by osmosis, even if a word that I know is a bloody rare occasion. I have to get back across the pond before this shell of mine gives out. I kid you not, I have to.

17.My favorite TV shows are Bones, Criminal Minds, NCIS, Dexter, Six Feet Under, Glee, & True Blood. Strike that: Reverse that. Seeley Booth, Derek Morgan & Spencer Reid, Leroy Jethro Gibbs, Dexter Morgan, Nate Fisher, some kids who sing really well, and Eric Northman are my favorites….hey, I’m being honest. We still try to figure if I am “Bonesier” or “Boothier?” Big point of contention around here.

16. Big secret? (Not anymore!) I never minded watching Dr. Who with Kent. David Tennent was dreamy.

15. I love red gerbera daisies and black baccara roses.

14. Another way to my heart? Haribo Gummi Bears and Mike & Ikes. I spit out the green & yellow ones…discretely.

13. I would be happy to die in Sephora or Barnes and Noble. I am 1000% girly-girl who loves to stare at a good book through my mascarared lashes and glossy lips. I made that word up.

12. I have books, VOLUMES, friggin’ TOMES of sketches and journals. I have been told that I am not a half bad abstract painter. I don’t care – it brings me joy.

11. I am 5 foot 1 and 1/4 inches; brown eyed, fair skinned, and have brunette hair that now kisses my shoulder blades. I have seven tattoos and on Friday am adding another. Hey baby! If the body is a temple, why not paint the walls?

10. I love a good pair of FM heels, but sans two pairs of Manolos, those were eradicated from my wardrobe when I was diagnosed with Multiple Sclerosis which has kindly:

9. Stolen much of my eye-sight, especially the ability to see color vividly. I am technically considered deaf in my right ear. The upcoming lesson on self-catheterization is one I am just JONESING to attend.

8. I fall multiple times a day.

7. And let me tell you how much seizures rock…

6. I have not been able to drive in almost five years. I am stuck in a house in Pendleton ALONE EVERY FREAKING DAY. I’d do ANYTHING to talk to a friend once in awhile.

5. Despite NOT being diabetic, but a I am a champion vomiter (gastroparesis) I never thought I’d be the 11th person to get a gastric pacemaker and must test my blood glucose four times a day. Don’t worry, most doctors don’t know what it is either….

4. My docs get wicked excited to hear that I ate a bowl of Moosetracks ice creams.

3. I have a Port-A-Cath, a feeding tube to my jejunum (bet that was the first time you used that word in 2010, huh?), and a tube to decompress my stomach. My bikini days are SO over…

2. I also have an ileostomy. That’s right. No colon, sewed up tail-pipe. I wear an “appliance” through which nutrients are deposited. I am comforted by the fact that almost everyone tells me their grandparent or elderly oboe teacher has one. A crap bag is a good look under many outfits and makes buying jeans a real p.i.t.a. Still, if you’ve got it, flaunt it – if you are gutless but gutsy, flaunt it anyway.

1. My team of physicians and surgeons are mavericks (suck it, Sarah Palin!) who go the extra distance for me. I consider them to be family. Speaking of family, I am blessed with a great one: I appreciate the hours they sit in waiting rooms, the spasms they attempt to remove, the tears they soak up on their shoulders, and the laughs they give me every chance they can. Kent took the “in sickness and health” part of our vows VERY seriously.

The bottom line: A lot of people have it worse off than I do. I am grateful for the health I do have. With love I wish to remind people that one appointment can change EVERYTHING you have, the lifestyle you lead, and the things that $2300, the cost of ONE OF MY PRESCRIPTIONS, can buy. I tried to add some humor to this, but not much of it is funny at all…..

If you read all of this you are either: stark raving nuts, a stalker, or a dear friend. I could use some of those that consider themselves in the last category right now.

Happy New Year!

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A good reminder for any day. . .

Never pass up an opportunity to just shut up.

Today is one of those days when this serves as a good reminder. Much love, xoxox ellie

More coming tomorrow – I promise its a good one. A little bit comes from the heart each day, is collected, edited and is almost ready to be shared.

The love we find in the strangest of places

…like an army helmet.

This was a letter I wrote to a dear friend who, on May 28, gradated from this life to the next. A helmet added to my dad’s collection of WWII memorabilia brought with it a picture of a handsome young soldier. With this transaction between my father and this soldier, at that point a late octogenarian, came a series of letters telling stories from the beaches of Normandy, the foxholes in Germany, the Christmas spent in Italy. . .a life I cannot imagine but without him and others like him, I would not know the life I know today. I felt a connection to this kind man protected by this helmet through these detailed accounts of history that arrived in plain envelopes on wide ruled paper.

For reasons I do not know, I felt compelled to write Mr. Aaron Parks myself – to thank him for taking the time to share his life with us and to share with him a bit of my own. Soon the mail brought letters addressed to me, carefully written on wide ruled paper, and a unique and irreplaceable friendship began. I became his “other daughter” and, in kind, he became an invaluable member of my own family. I was too ill this spring to visit him in the final stretch of a 90+ year adventure, but I had one more story of my own to tell and with gratitude and love for the entire Parks family – my late, great Aaron and his sweet and beautiful wife Maxine, I share it with you:

My dear Aaron,

If I was a little stronger I would be at your side so you could tell me the history of all of the gadgets that I don’t know because I didn’t get a Purdue Education (I hope I’ve made that deficiency up to you by marrying a Purdue graduate).What I would tell you would be about seeing the picture of a handsome young soldier that accompanied a letter and helmet that has become a part of my father’s “office museum.” I read the letters and the stories and in my soul knew that there was a friendship to be had between that handsome young soldier (now with loads of life experience and more stories to tell) and a younger Indiana girl who had a hunger for those stories and a love for that mature soldier and his family, especially the sweet Maxine.

I’ve always considered you an honorary part of my heart and my family – and I do not say it lightly when I tell you that I love you. When I met you six years ago – this month, May – at a blacksmithing demonstration, it was a dream come true to see the letters on lined paper come to life. I have kept every letter from you I’ve ever received in a box. Next to my chair is the lovely ottoman that you caned for me…but on my bedside table is a beautiful flower out of a nail or railroad tie (see? I didn’t go to Purdue, I don’t know these things) mounted in a wooden base that you made for me. It is dedicated from AP to EP. It is one of the first things I see every day and on days I don’t feel well, I look at it all the time. See? You bring be flowers every day! (Now, pass that hint to Kent for me….)

We could sit and talk all day and never run out of stories to tell – we’d always need more time. But the most important story I have to tell you is a love story and it goes something like this:

Aaron, a helmet that kept you safe during an uncertain and dynamic time in your life – and our nation’s history -a difficult time that shaped and created a free country as I know it – is the most cherished piece of metal in the world. All of the amazing things that aligned to form one of the most unique and wonderful friendships between you and I make me certain that God exists…and if we can find each other the round-about way we did in this life….we can find each other in the next. So you keep an eye out for me and save some stories because I’ll be looking for you.

For the piece of metal that kept my beloved Aaron safe, I am grateful. I said that we had a wonderful friendship – but you and Maxine are my family. I love you SO much. So, so much. My blacksmithed flower will always be the first thing I see. Thank you for bringing me flowers every day. Your other daughter loves you and your Sweet Maxine.

Pretty good story, eh?

You are surrounded by those that love you most. I am with you in spirit, as I always and forever will be.

With love from your “other daughter,”

Ellen

I haven’t forgotten you. . .

Recently my friend Tiffany asked me what the biggest challenges or hurdles in life came when complicated by a chronic illness. I spoke of the frustrations in not being able to set concrete plans; I told her about how hard it was not to have a REAL driver’s license in my purse – a “state ID” isn’t the same. It will get you in a bar or on a plane but not in a car for a trip to the store when you’ve forgotten an ingredient for dinner or just to experience the beauty of an Indiana spring or fall with the windows down and the music up. I told her that I could easily go an entire day with a 6:34 utterance of “I love you, honey.Be careful; have a good day” and not speak another WORD to a human being until Kent comes in around 5:17 PM – “who’s my goo’puppa dog? You’re a goo’girl, yes you are” to my dachshund” or asking Pipsqueak to quit walking on my laptop when I am trying to update my Facebook status, though treasured conversations with my furry girls, just aren’t the same.

The hardest aspect with which I must deal is loneliness. Sometimes that just means wanting to see a friend, feel the embrace of a hug, share a libation and a natter. Other days it means having someone to get me some 7UP when I literally cannot walk to the kitchen after an hour of “shouting groceries” (my favorite new euphemism for vomiting). Even knowing a neighbor or a person is near in case I just need to know SOMEONE is near would be nice, but these days it seems too much to ask.

I had a wonderful day yesterday visiting with two DEAR friends and celebrating my beloved “Special K’s” 36th birthday but today I feel a bit more reticent. I’m not up to taking Facebook quizzes riddled with bad grammar but illuminating results. I’m having a day when I just need a hug – honest , plain and simple.

Forgive me for not being a shiny, happy person today. Today that is a mask I cannot wear.

I am working on a blog entry that could be the most vital, honest and critically important pieces I’ve ever written in my 34 years. I hope it will spark questions, dialogue and discovery. I’ll let you know when it is done. Today I hope you will forgive me for my reticence. Tomorrow is another day. . . and we’ll see what it holds, okay?

I send you much love. . .ellie

“To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.” ~Clara Ortega

“Secret Plans and Clever Tricks”: The Special Language of Siblings

I earned the nickname “Motor Mouth” at about the same second I learned how to put syllables together to form words. Once I started talking, I never stopped. English and German, which would ultimately be my college major, were always my favorite courses in school. I’ve always enjoyed writing, learning new languages and have always taken my “verbally prolific” teasing in stride – it does describe me very well and illuminates one facet of my personality that, though quirky, I don’t mind.

There is another language that I speak fluently, but have never put it on a resume or highlighted it as a skill in an interview. Though many people have the same skill, the number of unique and distinct dialects are in direct proportion to the number of people who speak it – it’s not of Germanic origin; it’s not considered a Romance language – it’s a special communication I’ve been mastering since I was 27 months old, when my brother was born. It’s the special language that only siblings share.

On the last day of August 1977, I had to share the spotlight in the Payne household with a dynamo with “dancing eyes,” as my mother always said, when my brother Andrew Payne was born. Life as I knew it would never be the same.

When I speak of the “special language of siblings,” it’s not simply a vocabulary or genetic Morse code; it’s more than just a series of common experiences, tragedies and triumphs that conjure up lengthy reminiscences and fond “remember when’s?” It’s not even the role that I had for the first six or seven years of Andrew’s life as “translator” to all adults until the grueling hours he logged with a speech therapist morphed his lengthy lisps, improper plosives, and indistinguishable intonation into a fine orator without dippy dipthongs. Even our parents would shoot a questioning glance my way when my little brother would question “Can I these if Tshcottie wanths to pwray riffthles?” I’d roll my eyes and say “He wants to see if he can go across the street to see if Scottie wants to go and play with their G.I. Joe rifles?” Come on – that’s like asking if the sky is blue? See, big sisters are good for something!

As the years went on, only Andrew could understand the total mutual disappointment we felt after creating THE WORLD’S LARGEST SNOW OTTER after a huge snowfall rearranged our afternoon activities from diagramming sentences to making snow angels. We even called the paper to REPORT the building of the LARGEST snow OTTER EVER (now, I would venture to guess, the only snow otter ever). We waited and waited and waited, and no version of small town paparazzi deluged our driveway to marvel at our hard work. Only a brother can understand that.

Only a brother like Andrew could go with me to the investigative lengths that we did to buy our parent’s Christmas presents. To this day, this operation is called “Secret Plans and Clever Tricks.” We would save our money, sneak into our parents bathroom when no one was looking at take copious observations about what kind of toothpaste they used, the knock-off cologne we could afford, the colors of sweaters mom had that needed earrings….so we could purchase all of these gifts at the only place we were really allowed to walk or ride our bikes. The PEOPLE’S DRUGSTORE. I still thank my mom for being so gracious in telling us how much everyone admired her DRUG STORE EARRINGS in sea foam green that we had FOUND to exactly match a new sweater. Every year, we got the right toothpaste, knock off cologne, probably even some stale Cadbury eggs knowing that Dad loved those, too…..and I’m sure a shelf life of 9 or 10 months was reasonable. Even when we moved up in the world and got them matching sweatshirts that said “MOM” and “DAD” (though, I admit, “Mom” did look more like “Man” because we thought script was classier), our parents never complained. This year, in organizing secret plans and clever tricks, we got them Tivo. It’s not exactly the same, though, as the magical gifts of AquaFresh of our youth.

My little brother has grown up to be a fine young man and one of my best friends. He stands several heads taller than I am now, but will always be my LITTLE brother – the kid who would start talking to neighbors out for an evening stroll and follow them around the perimeter of our corner lot…as they walked further and further away, his voice would rise in volume and intensity “I’M NOT ALLOWED TO CROSS THE STREET BUT I CAN KEEP TALKING TO YOU, OKAY?” I see a grown man in a police officer’s uniform who will celebrate his 32nd birthday this year, but that is the little voice I hear. I remember baking biscuits which magically morphed into hockey pucks in the oven and him dialing 911 fearing I had burnt my hand clear off when I said “OW!” as a tiny bit of exposed flesh touched the baking sheet. I remember thinking we were the next greatest contributors to Alexander Graham Bell’s gift to communication when we attempted to “talk” secretly through our heating “grates” in the floor. I never thought I’d see the day when he couldn’t give a toast at my wedding through his happy tears.

Though my parents may think the bicycle they’d lovingly picked out for me one birthday. the Christmas kitten they’d selected to fill the void of a furry friend who had crossed the Rainbow Bridge or the Coca-Cola rugby and Cabbage Patch Kid for which they’d searched for days and waited in endless lines were all in contention for the greatest gifts they’d ever provided, with great appreciation, I’d have to disagree. My greatest gift is a young man who I am proud to call my brother. His humor delights me. His support encourages me in my darkest times; his strong arms are there to catch me in the most literal sense. He knows when to help me focus and is wise to sense when distraction is the best way in which he can help me make it through the day. When  the telephone rings and the familiar voice of my beloved brother asks politely to speak with “Shit for Brains,” I know my day will be better than it was just moments before. His tears are mine and I’d like to think that I play a small role in some of his triumphs. We share the same warped senses of humor, acerbic wit and undying loyalty to one another. I cannot thank my parents enough for my brother. My heart beats in synrchronicity with his – and until mine stops, it always will.

The language of siblings is not a “Germanic” language like I studied in college, but it has shaped my life more than any education could. It is not a “Romance” language, but one created out of love. We don’t see each other as often as we’d like, but always make time for “secret plans and clever tricks.” And now that he IS allowed to cross the street, we don’t have to yell quite as loud.

I love you, little brother. Our giant snow otter truly was front page material for the paper; our bicycle trips to the Village Pantry are among some of my greatest journeys; And NEVER let anyone even TRY to “one up” your tennis racquette guitar solo with OR without the rat nose. There was never a doubt that you’d be my “best person” at my wedding…and I even spared you a hideous dress with a bow on the butt. That’s what good sisters do. xoxo

Kent, Andrew and Daddy - my three Muskateers

Clowning around

"Beat It" never sounded so good on a tennis racquette

“Mirror, Mirror on the wall – who is the fairest of them all?”

Putting the "eskimo" in an eskimo kiss

The answer, in one word? Me.

Many of you remember me as the little girl who would carefully adjust her beach towel, don sunglasses bigger than her face and settle down on the chaise lounge chairs of the Catalina to devour a Nancy Drew or Agatha Christie for hours and hours. By this time each summer I would have magically changed races. I fully admit to spending most of the summer of 1993 at the sand volleyball court in a bikini without ever THINKING about anything with an SPF. I’d just graduated from high school! No more SAT’s, ACT’s, GPA’s – forget the SPF’s, bring on the MEN from (three letter university of your choice). Hair bleached blonde by the sun’s penetrating rays, I fully admit to looking alot like Debbie Gibson (bad pop singer from the  80’s) and loving every minute of it. Sorority formal? Bronze me up at A Place to Tan. Friends’ ski boats, houseboats, condos in the Keys, I relished the months when my spirits would lighten up and my complexion would settle into a deeper shade. Let’s all sing it together! “The sun is a mass of incandescent gas *A gigantic nuclear furnace*Where hydrogen is built into helium*At a temperature of millions of degrees!”

Did I mention that I hate summer these days?

Yep, I should give a lecture about responsible UVA/UVB protection, sunscreen, polarized lenses – but you know that by now. I sit here in late July thinking about the rest of my fellow sunbunnies and how miserable they will be six months from now when cabin fever has them going nuts. That’s how I am feeling right now. When wardrobe styles morph from South Beach glamour to Inuit couture, I’ll finally get to enjoy going outdoors – even if it is to the mailbox.

I could give you a long lecture about how sun and heat causes pseudoexacerbations and GINORMOUS flares of Relapsing/Remitting Multiple Sclerosis and medicines make me burn to a crisp when that never would have occurred to me a decade ago – but I won’t. Point is, you know it.

But I just came to the realization this morning that sun karma must be in my favor. I may be teased by my brother as he pretends to be blinded by my complexion, insisting that I leave him paralyzed by my pallor but a quick look at a TV schedule or trip to the cinema reveals just how much of a trend setter I really am: Vampire Chic.

I’ve let my hair return to the brunette beauty with which I was born. I feel better avoiding the sun & have adjusted my activities, makeup and wardrobe. I’m as fair as they come. Twilight? My favorite time of day. Black Dagger Brotherhood? Bring it on. True Blood? Love it. Send me the script. I promise you won’t need much makeup for me to fit right in,

…unfortunately, I guarantee I’m the only vamper fast asleep by 10 PM.

“If I got rid of my demons, I’d lose my angels.” – Tennessee Williams

A friend once described me as “An Angel with an Edge.”

She probably described me with the greatest deal of accuracy than anyone has had the ability to do so.

I would tell you that I have remained, at the core, the same person I’ve always been. I can tell you that context changes so many things – I’m probably edgier yet more compassionate, sarcastic yet more tolerant, understanding of the deepest feelings of loss yet more appreciative of the things I hold dear. I’ve seen hard working soldiers fighting in the trenches of a bureaucratic warfare. I’ve been anguished by decisions that affect my daily life  made by people who “call the shots”  against whom I’d wager a wild guess have never given themselves the multiple shots that I do each week. I’ve witnessed the discrimination of one plant that could provide relief for so many with my conditions that I guarantee would only serve as a “gateway” to a more normal life for me. I’m spending a lot of time swimming in a “donut hole” – and truth be told, I don’t even really like donuts. That’s okay – I eat largely through a tube. It exits through a bag. My bikini days are SO over. Contextually, I used to think success was measured by an office with a door and a Volvo (I’m either 50% a failure or a success, depending on how you look at it – I got the door). My grading scale is adjusted a little differently these days: getting dressed? B+ Applying eyeliner? I’m practically a Rhodes scholar.

An inspiration? I don’t think so. I’m just too stubborn to die when my vital signs indicate I’m headed in that direction. Whatever direction I am headed, I’ve learned a few things along the way. There are many things that need fixing for those who live a life like mine SO THAT FEWER can experience a life like mine – and just get on to the “living” part. Perhaps those things must exist so we can can appreciate when the light shines on a time with new causes of concern and new reasons to rejoice. Maybe it’s all a part of progress – I haven’t worried about the plague or slept in an iron lung lately. I know there are truly good people in this world and people who have MADE DECISIONS that make them evil and ugly. There are many shades of grey in between, however – as I type, I am snuggled in the warmth of my favorite sweatshirt -heather grey. Grey can be beautiful – again, it’s all apart of context. I believe in the integral nature of a person, a philosophy, a science, a psychology. We are parts of a patchwork quilt that  makes up the fabric of our lives. The things that hinder me make my quilt so colorful – and it allows me to tell a story. Each square – good or bad – comes with it’s own cornucopia of “remember whens?” and promises of tales yet to be told.

Health is a vehicle that can, with a little proper maintenance, take you where you want to go. With poor choice or drawing of the fabled “shortest straw,” I’d tell you” WHEN IT’S GONE, YOU’LL MISS IT” : driving, working, deciding on whether you want to have children..and the little stuff like meeting a friend for dinner (eating in general!), driving back to the store when you forget something, making plans, KEEPING plans, sleeping through the night. I’ve learned that some nights I just don’t get to listen to the rhythmic cadence of my husband’s breath in sleep; I watch the clock, listening for the “squeak squeak squeak” of the nurse’s Crocs as she journeys to my room from the Pixus that holds the juice that I will watch flow from syringe to tubing to the port in my chest to every part of me – the parts that remain, anyway – that kept me falling awake in the beginning. It won’t last long;  it’s hardly a panacea. A child’s aspirin for a shark attack, perhaps. Does it suck sometimes? Quite frankly, yes it does. I do not rememeber a time when I have awakened without pain for which I have run out of adjectives, superlatives and expletives alike.  If I was that betting person, I’m sure those who never find the solace of sleep as they listen to bombs falling like rain would willingly trade me places.

I am not simply “Dr.X’s patient,” or “Multiple Sclerosis, gastroparesis, Crohn’s, Room 2204.” I am not merely a chart nor an entity protected by HIPPA. I am a student of many subjects and of life in general; I am a wife to a WONDERFUL man, a daughter, a sister, a granddaughter, a friend,  an artist, a pet wrangler, a patient, a writer, an advocate, a painter, a barista….and from whatever era in life you know me, you know that brevity is not my strong point.

…and though a few months ago they tried to admit me (at 34) to a pediatric ER and I got in on a child’s admission to a movie, here’s hoping this little angel never loses her edge.

Willkommen! Bienvenue! Welcome!

All Ellen, All the time. The girl you know, the guts you covet, the myelin you envy. . .old friends, new friends, I’m just glad you’re here.

I may have my challenges, but life is pretty sweet. I'm glad you're here!