#ProjectPositive, September 22nd. Flawed.

September 21, 2014December 30, 2014 raphaela99Leave a comment

Oh dear! I have plenty of these! Some can be blessings and have kept me glued together, such as my stubbornness. On the other hand, I can be a huge pain in the butt! I wont yield once I have made my mind up. It’s fun having my daughter reflect it back onto me!

I have been engineered to be a solitary creature. If I am dealing with a problem, grief, pain or depression, I will not seek out other people. Years of isolation can do that to a lady. I remember at one of the hospitals I was in, right before I was taken at fifteen, I looked wistfully on visitor’s day at the friends and family assembled. Bernadette, a hardened old boiler, saw me looking at the visitor’s. She took my hand and said, “never expect people to be there for you, honey. Be your best friend, and you will be happy.” I took her words to heart and shut down. I pretended it didn’t hurt when I was in the spinal unit for all those months, and I would see other patient’s with their visitor’s. I got used to sorting things out by myself. It collides with my stubbornness, making life pretty hard at times! I don’t want to bother people; I want to look like I know what the hell I am doing, even though I don’t. I can’t drive far, as my right leg seizes up, and the pain in my right arm and spine becomes unbearable after a while, so I do accept lifts sometimes. When I have reached out, I have chosen some dodgy characters. They have either gossiped about me behind my back, hurt me, or left me. It made me afraid to ever let myself be vulnerable again. I have to allow myself to be vulnerable, so I can teach my child that its okay to reach out. I heard her say to her friend the other day, “I know you are soft, and that’s okay, ’cause I have a soft heart too.” The young are so wise! I am not alone now. I just need to know my heart is in safe hands, and relay the information caught in my throat.

I loathe phones. I received hundreds of death threats, and developed a real phobia about them. I don’t like the feeling that most of the time you don’t know whom is on the other end. The unknown doesn’t do much for me. I much prefer texting and emails. That is where my comfort is. For a whimsical character, I don’t go much for the unscheduled and unpredictable. I am always ten minutes early to everything, and have my calendar filled a month or so in advance. I really need to chill out! Yes, chill out. I do need to chill. To allow myself more silliness, more free time, more relaxation. I need to speak out more, using my actual voice, and not hide myself, nor carry my burdens alone. It is time to let go. Flaws are fantastic for reminding you how far you have come, and what needs to be rescinded.

#ProjectPositive, September 20th. Love Myself.

September 19, 2014December 30, 2014 raphaela99Leave a comment

It’s rather interesting when a lady who has had eating disorders-and been abused in every way possible-becomes a mother. I had to have strategies in place for when this child came into the world. From a very young age, she was watching me. She adored me, and wanted to be just like mummy; say and do the things I did. Hmmm… I had to make it worth this kid’s while! After having her, I was hopping on the scales quite a bit. They had to go. I judged my weight on how my clothes fitted me, not on numbers. We go on nature walks, and work out our bones. Exercise and weight loss is never mentioned. We don’t comment on other people’s weight, nor our own. I found the terminology I used would have a direct impact on her. I jokingly remarked after finishing off a dessert, that I would get a pudgy tummy. The next thing I knew, she had a pincer grip on her stomach, evaluating if she was getting the same. Such responsibility lay on my shoulders. She asks why I wear makeup, and once again, I have to give a thoughtful response. “It’s not because mummy feels like she’s not good enough without it sweetheart,” I say. “I wear it because I love colour, and I see my face as a canvas.” Intent is everything. I affirm my worth in the mirror, and now she does the same. When you have a reinforced sense of self, society will find it hard to puncture you.

I can be a fashion disaster, and well, a disaster on many fronts. I love that about me too! I know that I am trying my best in every aspect of my life. What more can I expect? My purple hair is fading out, and I am going back to my natural colour. I felt a bit daggy regarding the tone of my hair, when a lady shrieked, “I love your hair! Who did it?” I smiled and relayed an $8 tube from the chemist. It’s all about perception isn’t it? I love the parts of me that get angry and self-destructive. I love the “flaws” in my body that make it unique. I have to convey this every single day so that by the time she is a teenager, my daughter will have it ingrained. If she wants to wear heels, dye her hair, put makeup on, I will always ask why. If it is to please herself, good. If it is to feel good enough for this world, I will whisper in her ear, “it’s unnecessary. You have already surpassed good enough.” As have you.

#ProjectPositive, September 19th. Acheivements.

September 18, 2014 raphaela991 Comment

Achievements… Mine are not borne from the usual list. My goals were markedly different, and I celebrated achieving each and every one. I still get a thrill coursing through me at the thought of them.

Taking a bath. Do you know how it feels to finally be able to take a bath after four months in a spinal bed? Six months in a body cast? Once the temperature is just right, the feeling of sinking in, and having your body cleansed is pure bliss. I try to recollect it whenever I bathe. I want to feel grateful for such a simple pleasure.

Eating and drinking. Nasogastric tubes aren’t fun, nor is being tube fed. Being able to enjoy the pleasures of a good meal, and be able to enjoy a cool drink, that is an achievement.

Going to the letterbox. This is a definite achievement. There were years when I was paralysed by fear, and the thought of collecting the mail from the top of the driveway was unthinkable.

Taking a bus by myself to the IVF clinic. Doing IVF changed my world. I hadn’t ventured out by myself for years. I suddenly found myself requiring daily treatment at 7am in the morning. I didn’t drive at the time, so needed to walk thirty minutes to the bus stop. The longing for a child was stronger than my agoraphobia. Heart racing, I set off. I enjoyed the bus trip, and the feeling of independence. I didn’t tell the staff what had been achieved that day. It set in motion my return to a world I had effectively cut off from.

Walking. It took four months of twice-daily physio sessions whilst I was in the hospital to take a few steps. It took two years in a metal body brace, 24 hours a day. It took walking frames and physio sessions, daily for three years. Swimming sessions each morning, daily. It was bloody hard work. It hurt, a lot. When I wasn’t at physio, I was on an exercise bike, walking or using special pedals the physio gave me. Walking didn’t just happen. I am proud of that.

Having my book published. The majority of Lived to Tell was written when I was much younger, as it was happening. When that girl got the chance to see it in print, it was incredible! Keep a hold of your passions. You will find a way to see them through to fruition.

Being alive and functional. Once again, bloody hard work! Once I had decided I was worth the effort, I soared. There were times when the cheer squad was just me. That’s okay, I can be loud. I often forgot I actually had a body, which required food, water and to be cared for. I lived in my head, the body just an extraneous matter. I have had to learn to check in with myself regularly. “Been at the desk too long, Raph, time to stretch your legs.” Life is such a hard, ridiculous and profoundly beautiful thing. If you can’t see the beauty, things need to change. You need the right mix of people, plans to look forward to, and beautiful things to admire and absorb. Paintings, nature, books, movies, music. Surround yourself with that which brings you joy. You are worth so much! I could talk about my awards, but I won’t. The above is enough, more than enough. I am alive, and happy. It’s enough.

#Project Positive, September 18th. Surrounded by…

September 17, 2014December 30, 2014 raphaela99Leave a comment

My miracle IVF child, meeting my IVF doctor. Remarkably, they both had on furry vests!

I am surrounded by hope. When I got one follicle (most women doing IVF get at least six), my doctor didn’t say one negative thing. She knew the odds of this follicle containing an egg were minimal, but she also knew it was the best response I had received. I love this picture of her with my daughter, and I love that she tells the story of the lady with one follicle to give other’s hope.

I am surrounded by friends, strong and true. The sort of friends you can say anything to, and be assured your heart is safe. The sort of friends who are consistent in every way, and you can be ridiculously silly with. I have met them through every phase of my life. Some in ICU, internet IVF support groups, school, parties. Love them all.

I am surrounded by birds. I call out “birdie bedtime,” each evening, and tuck them in. Highly intelligent creatures, birds. I envy their ability to fly. Would have come in handy in my life!

I am surrounded by grace. Grace saved my life via blood transfusions. Grace saved my life on that cold winter’s night, as depicted on my body cast.

I am surrounded by love. Not the kind that is romantic in nature, with grand overtures. The kind that is eternal, ephemeral and takes you away from all the nonsense. This kind of love.

#ProjectPositive, September 17th. Good Vibes.

September 16, 2014December 30, 2014 raphaela99Leave a comment

Good vibes is having hundreds of fairies in the room, trying to break the world record!

Good vibes can be found in the most extraordinary places, and in the most unexpected ones. You have to be on the lookout for these wondrous moments. The morning after the fall, I was wheeled along to the Catscan machine, and screamed in pain as I was lifted by six people into it. Exhausted, I was laying on my trolley in the reception area, waiting to be taken back, when an older lady came up to me. She smiled and stroked my cheek. “You have beautiful skin, darling,” she said. When I looked in the mirror held up to my face later that day, I only saw a severely bruised face, cut lip, cracked head, and dry, matted blood throughout my hair. The lady had good vibes, and saw me, beyond all the detritus. That’s what these folks do, they spread their good vibes around, like warmed butter. They cut through pain, sorrow, and horrendous times. It’s a gift. They flit in and flit out, much like a hummingbird, searching for nectar.

Last Valentine's Day, my beautiful friend invited my daughter and I for dinner. — Last Valentine’s Day, my beautiful friend invited my daughter and I for dinner.

Each hospital trip, they have found me. I will never forget coming out of my coma at thirteen, being taken back to my ward after weeks in ICU. The kids who had witnessed the doctors trying to resuscitate me, had decorated the walls with artwork. We sometimes feel impotent when tragedy strikes a person. We may not have the money to send large floral displays or gifts. We feel like we may be intruding. I can assure you, it’s the little things that mean so much. The card received in the letterbox. The meal cooked with love whilst I have been recuperating. The kind messages on Facebook. The reassurance that you have people in your life who love you and shall be there.

A wall of good vibes at Yoko Ono's exhibition, MCA. — A wall of good vibes at Yoko Ono’s exhibition, MCA.

I try to get over feeling self-conscious when a stranger obviously requires good vibes. Whether it be a smile, a compliment or assistance with directions, it can make such a difference in someone’s day. I have read of occasions where it has saved lives. Sure, I come across the odd sourpuss who looks me up and down and refuses to smile. That’s okay. Who knows what is going on in their life, nor the ripple effect my greeting may have on them throughout the day? Some of the best results happen behind the scenes. Good vibes are everywhere. In the art installation in the park, in the flower stubbornly growing in a crack in the pavement. Everywhere, man!

My friend, sending good vibes to a Gorilla. — My friend, sending good vibes to a gorilla.

A brave pirate with my feisty daughter. More good vibes!

#ProjectPositive, September 16th. Happiest, part two.

September 15, 2014December 30, 2014 raphaela993 Comments

What makes me happiest?

Cupcakes. Friends.

Whimsy and fun!

Good times.

Seeing this chick restored and with self-love.

#ProjectPositive, September 16th. Happiest, part one.

September 15, 2014December 30, 2014 raphaela99Leave a comment

My daughter's self-portrait. — My daughter’s self-portrait.

What makes me happiest?

Seeing the joy on my daughter’s face as she completes an art work, and the beaming smile when I put them in frames to display in our home.

Hanging out with artists, like the late Harold ‘Kangaroo’ Thornton. I met him at the NSW Art Gallery when I was seventeen, and a friendship formed. I love artists! Unencumbered artists.

Nature. Isn’t she astounding?

Creative people, like Pretty Picnics, a friend of mine, who creates ‘happenings,” such as this Picnic in the Park.

#ProjectPositive,September 15th. The Biggest Thing I’ve Overcome.

September 15, 2014December 30, 2014 raphaela994 Comments

The biggest thing I have overcome is…

I don’t have a personal favourite. Each time I overcame trauma, it was humbling, surprising and wondrous!

Child abuse. Being told that you are a slut, being labelled as stupid and being hyper-vigilant. A pleasant occasion, with cordial conversation and laughter makes such a child tense up. You sadly know it is a harbinger, ringing in screaming and fighting. As a result, I grew up extremely aware of my surroundings. I can tell you who is standing in the next paddock after a quick sweep of an area. Sensitive to noise and environments. There were times I wanted to die. Times when I felt I would never recover, nor feel whole. I went back to each place of trauma, wrote about them, took pictures. I was in fact saying that I was here, and I survived. Throughout this period, I learnt a lot about myself and why I respond the way I do to situations. Don’t like loud knocking at your door, nor talking on the phone? There is a reason for that and its a perfectly normal response when given your history. Need time alone to process and unwind after a social function? Again, perfectly reasonable. When I started to understand why I am the way I am, with my little “things,” I began to heal.

Being told I was stupid. I lost so much time at school in primary and high school, due to being drugged or being in hospital. I was told I was stupid and wouldn’t amount to anything in Year Seven. When you are told often enough, you tend to start believing it. They were wrong. A kid who isn’t clever couldn’t have survived the years that followed. I left school at fourteen, when I was put in the clinic, and was extremely nervous when I was signed up to Distance Education by my surgeon when I was fifteen years of age. I was in my rotor bed when the first pack of lessons arrived. To my astonishment, not only did I enjoy it, but I was also good at it. The teachers were encouraging, and I knew I had been lied to about my intelligence and ability to learn. I am so grateful that I had the opportunity to find out. Don’t believe them when they label you, please don’t absorb it!

Eating disorders. I had no control over anything in my life. I couldn’t make sense of schoolwork, as I had lost so much time. Where to find a modicum of control? I would alternate between bulimia and anorexia. I thought if there was little left of me, I could disappear. It was harsh and brutal. Walking for hours with an empty belly. Swallowing vomiting tinctures designed for victims of poisoning. Being happy when getting my stomach pumped as I would lose a kilo or two. It was savage and hard. Learning to love and appreciate this body took years. It was hard to look at food in a normal manner again. This is why I don’t hop on scales now, and make myself eat regularly.

Endometriosis. This one brought me to my knees. After having survived such darkness, I wanted a baby with all my heart. It was the carrot I clung to. Since age eleven, the pelvic pain had been agonizing. A proper diagnosis got left behind in the pressing need to stay alive. I was only officially diagnosed in my twenties. Hospitalized regularly, I was always placed in the maternity ward, a cruel and unusual way to be treated. The years of drug treatments and surgeries were tough. IVF was beyond hard. I went to ground, shutting off completely. That it eventually worked, was astounding to me. I had wanted more children, and nearly lost my life in the attempt. I grieved for quite some time, before finding peace.

Surviving it all! I am still amazed by the dawn of each new day. Amazed that I am here to see it. To have survived is extraordinary. I have my medical notes, and at times, the prognosis was grim. Here I am, an intelligent woman in her thirties, who smiles more than she frowns. Who plans for the future, and has left the pain behind. There was no magic secret I uncovered. It had to do with giving myself a break, understanding myself on a deep level, and kindness. With self-love and kindness, the healing begins. You define who you are, not them. xxx

#ProjectPositive. September 14th. My Best Physical Feature.

September 13, 2014December 30, 2014 raphaela991 Comment

My best physical feature would funnily enough, be my backbone. I was young and invincible when it was shattered. Man it hurt! I learnt I have more backbone than I gave myself credit for. Laying on the ground that night, I was still thinking of ways to get away from him. Violent men are cowards, and he ended up running away, after dragging me across the ground and hearing some of my bone’s snap. I learnt I would need a huge operation, and I remarked that I simply wouldn’t allow it. The surgeon looked at me incredulously. I was pumped full of morphine which I believe gave me more bravado. Having to lay still for months terrified me. I couldn’t wait to run. Run from this nightmare. It was too risky to move me, so I had to stay in my rotor bed during the surgery. They could flip me over with safety inside this wondrous vessel. It strangely arrived the morning of my fall, and hadn’t even been unpacked. The staff had to watch an instructional video before I was placed on it. I wasn’t a Catholic, but the one who was with me before and after surgery was dear old Father Spencer. He had a soporific voice which soothed me. I wish I had recorded his voice for posterity. I had a dear Scottish lady, named Veronica in the bed next to me. After a few months of catheterization, she hollered with great excitement, in her thick Scottish brogue, to the men in the next room along, “the lassie took a piss by herself!”

By seventeen, my spine was so caved in that I couldn’t breathe properly, nor digest food. I needed more surgery to save my life. They went through the front, somebody holding my heart in their hand. They carved up my ribs to “prop” up the scaffolding. Flipped over, they installed the hardware. Body casts followed, as did a big recovery once I was out of ICU.

My caved-in spine, before the life-saving surgery.

Falling over and breaking my back (again), in three places five years ago, that blew. My little girl and I performed a clumsy dance throughout my recovery. I gave her “koala bear cuddles,” her weight distributed evenly, thus saving me pain. She was a champion. This back has been bludgeoned, collapsed in on itself and had all manner of egoists and healers in there, doing their thing. It is a short spine, inflexible (stubborn), like its owner. You should see me try and do yoga! Its adorable! I pray my knees never go, as I use them and my hips to move and get down (and up). My daughter loves my spine, and is intrigued by its scars, which we have named. Harry is named after an eccentric artist I knew, and he winds his way from my stomach to the centre of my spine. Louie is the scar where they did work on my lung. Marilyn is the scar on my hip bone, and the wide scar along my back is Raphie. Defiant Raphie. My backbone has been reinforced, so woe betide any villain who approaches! Woe betide indeed!

#ProjectPositive, September 13th. You can always count on me.

September 12, 2014December 30, 2014 raphaela991 Comment

You can always count on me for…

Love. That indefatigable quality. I will tell you that I love you and I have to warn, I am a hugger! I am a listener, and believe me, I hear everything that you say, including that which is unspoken.

Being Raphie in my blog. All of the Raphie-ness I possess comes tumbling out in this blog. I often find that the words get stuck in my mouth to explain how I am feeling, or what is happening in my life. Somehow it seems diminished when spoken. Here, I am unutterably me!

Irreverence, bringing levity to situations. A bit of cheekiness never hurt anyone!

My daughter has inherited this cheekiness. She put a box of fire-engine red hair dye up to my head, and stepped away to visualize how it may look. “Don’t do it mum! You would look like a hot mess!” she hollered, much to the amusement of other shoppers.

Commitment. Not in the scary sense of the word. You can count on me to keep my word. I will go to great lengths to see a commitment through. There are times when I have to back out of something, and believe me, nothing grieves me more.

The unexpected. I lead a jam-packed, life. I want to witness, taste and experience it all, and my daughter has inherited this tendency. Nothing like near-death experiences to emphasise that time is not to be wasted! We look at each other sometimes, and wonder how the calendar got so full! There have been four events, back-to-back in the one day. We have slowed down somewhat, and plan home days too. She and I are interested in art, museums, music, theatre, nature and the pure joy of being alive. I can recommend embracing spontaneity. Some of our best days have happened like this. We caught the double-decker bus, The Sydney Explorer, on a whim, and spent hours riding through Sydney and Bondi. It was one of the best days ever!

Understanding. I think there needs to be more of it. Sometimes we just can’t do all that we want, and that includes attending every event, and seeing all the dear ones we would like to. We need to be understanding. I would rather someone tell me that they are snowed under, than to try and battle through and exhaust themselves.

This list also belongs to many of the people in my life, bless them! No wonder we get along!