Eight years ago, I discovered endometriosis had robbed me of the ability to conceive naturally. When one hears the dreaded words, “you will need IVF,” one reels. They rattle on about syringes and doses, and side-effects, and you freak out some more. I went searching for my tribe and came across an IVF support group on Yahoo (those were the days), and found no topic off-limits. Nina, the moderator, was the guru of IVF. If you wanted to know anything, you asked this chick. A veteran, as were many others. They had battle scars, but they weren’t done fighting. I shared that the doctor mumbled so much at appointments that it rendered him incoherent, and I would have to beg the secretary to come in to translate. We laughed about the “wand monkeys,” and the hideous internal ultrasounds, and how big our bazooka’s got on the drugs. We laughed at having to take an esky everywhere we went, and regaled each other with stories of having to explain why we were snorting and shooting up in public toilets. They became my advocates, and my battles with beastly staff were theirs too. “I would have blown a gasket at the rude bitch! Demand your money back love, and charge them 10% interest if it’s late like Brenda did. Build up those little arms so you can sock her,” wrote Shell. I typed back, “My plan is to make millions, invest in the fertility industry, and send free drugs to everyone.” I had three disastrous cycles in a row, and the girls urged me to swap clinics. “Don’t give up!” they begged. We left the first clinic, and they were with me all the way. Finally, I was able to go to egg pickup. My girls, not demure in the least, had this reaction, “I don’t believe it Raph, you are finally having a trigger shot! Holy Shit! Sending you the stickiest, bestest, growingest, great-fertilizingest thoughts I can.” We all wondered what it would be like to simply pee on a stick to confirm a bit of horizontal folk dancing had worked. I got advice on what level I should spin the drugs to, in order to get the best follicular action. I felt rather naughty, upping it from what the experts advised, but it felt so right. I got one follicle, but it was a good one, housing an egg that became my daughter. I am still in touch with my mad mates. Emails with titles like ‘We found the sperm!’ after surgical extraction were commonplace. They wanted me to write a children’s book about the amazing travelling sperm, after I shared the adventures my husband’s three sperm went on after we swapped clinics. He strapped the large canister into the front seat, stopping off at his building site, on the way to the new place. If you are going through IVF, find yourself a support group, and you will have best friends for life.
Category: raphaela
Lived to Tell
My book, Lived to Tell.
I have loved the stars too fondly…
I have loved the stars too fondly…
This is exquisite.
Originally posted on Cristian Mihai:
Though my soul may set in darkness,
it will rise in perfect light.
I have loved the stars too fondly
to be fearful of the night. – Sarah WilliamsWords are our most important discovery. Forget about fire, forget about all the places we’ve been to, and all the places we’ll reach. Words allow us to see farther than any telescope.…
Share this:
Songs.
I am reflecting on three songs that were significant in my life. Only three?! Songs have nourished my soul, sustained my broken heart and have kept me alive. The first would have to be Live To Tell by Madonna. I first heard this song when I was on the brink of adolescence. “Hope I live to tell the secret I have learned, ’til then, it will burn inside of me.’ It certainly did, and I did live to tell, which is why I named my book after this song. At the time, it was a whisper of hope, that I may survive. At my book launch, some dear friends presented me with a music box which plays Lived to Tell. True Colours by Cyndi Lauper has to be included. I love this song’s imagery. I have always been a colourful character, and felt out of place in the world. I had no idea where I belonged. This song provided me with comfort, and allowed me to believe in the power of my wild imagery and dreams. Precious Little Angel by Annie Lennox is my third choice. I listened to this song for over a decade, and it sums up why I was determined to have the little girl I kept seeing in my dreams. When I was without hope in my infertility, I leant on this song. When I went into labour, and was in the car on the way to hospital, what song should play as the radio came on? This one.
Share this:
Day Two. A Room With a View (or just a view)
If I had the power to get somewhere, where would I go right now? Considering that I just had my vacuum cleaner catch fire, and am immersed in the drudgery of running a household tonight, I would say New York. I would go in a heartbeat. I feel immense love and connection to a place I have never been. I can smell the aromas from the food stalls on the streets, hear the sirens and horns beeping in Times Square. The ads flashing across the neon signage. I would catch an off-Broadway show, thrilled to be supporting writers and actors in their aspirations. I wouldn’t do the touristy ride through Central Park with a horse and carriage. I would walk through, delighting in the squirrels scurrying in the trees. I would meet my kind, my soul group. The artists, poets and dreamers. I would know them and they me. I would have to travel with my daughter. This is her tribe too. We would skip through Central Park, amidst the fairy lights, and I would hail a cab and go directly to Greenwich Village. My child would show samples of her art to a friendly crowd gathered in a bustling café, and we would listen to a singer with guitar accompaniment. The Village would be welcoming, and the smell of pizza slices and garlic would fill the air. We would retire to the brownstone flat we had rented, and be amazed that the city is still as alive at 2am as it was at noon. Windows sealed, the noise is dulled, and we prepare for sleep. Who can sleep! We are in New York! So much to see and do. We wander the compact flat, and go to the linoleum table in the little kitchen, the hue of butter. We write down ideas, drawings, and lists of places we want to go when we wake. I feel safe here. The block of apartments has a fellow downstairs, and the natives are friendly. There is nothing to fear here, not even vacuums which explode.
Share this:
Patron Saint of?
I am attempting to do a post a day, on subjects the wonderful folk at The Daily Post think up. Today’s is a cracker. In 300 years, if I was to be named the patron saint of something, what would I like it to be? I didn’t even need to ponder. I would unequivocally choose compassion. Compassion encompasses so many other virtues. I don’t believe we can summon the courage necessary to stand up for ourselves and others without first having compassion. Compassion inspires warm regard, to believe that we are worth fighting for, as are other people. To be courageous without compassion is dangerous. We can come across as fired-up and obstinate. Compassion is closely related to empathy. We can’t love without having a compassionate heart, nor can we form meaningful relationships, or communicate wisely without it. Yes, if I am to be Patron Saint of anything, I would like it to be compassion.
Share this:
Winter.
Winter, it’s here again. Yesterday heralded the changing seasons, brutally and abruptly. The sky was grey, and morning and dusk were shrouded in a fog. The rain poured down, and the wind was icy. No easing into this season. The green and vibrancy of the garden receded and everything appears to be withering in preparation for death. Before I was abducted all those years ago, when my home was a mouldy old icebox of a room, I recall climbing under the grey blanket, pulling it up to my chin, and hugging my knees to keep warm. I remember the cold. The sort that gets into your marrow. I was so cold in the months leading up to the lightning strike. When I woke on the ground, I was shaking from being utterly exposed. I have never liked winter, and as a child would get as close as I could to our gas heater. I remember the delicious comfort when I was wrapped in foil by the paramedics to entice heat into my broken body. Since my fall, I have dreaded winter. Not only for the abysmal memories, but for the ramping up of my physical pain. Spinal arthritis doesn’t take too kindly to frosty mornings.
The anniversary is coming up, and strangely, I will rejoice. Rejoice that I am here, and my book was published. After this watershed, I will celebrate my daughter’s birthday. She was born in winter. The only event of beauty throughout my life’s winter’s. Her birth has replaced the scarred, knarred horrors. She was born at the tail end of winter, and heralded the arrival of spring, of birds nesting and flowers in bloom. I will go for walks in a coat and hat, make soup and celebrate the best of this season. Time brings healing. I know that winter won’t trumpet the end of my life, as I once feared. I wish I could reach through time and space and tell that young girl.
Share this:
My Spine, Part 2.
When I broke my spine again, I had a small child to look after. I should have been on bed rest, followed by bracing and possibly in a plaster jacket as well. When driving, I would psyche myself to go through a roundabout, as the pain would make me scream when I turned the wheel. Once a week my daughter would go to occasional care, and I would crawl back into bed. ABC kids was a godsend in the months that followed. I had to take heavy-duty painkillers, and relied on buses to ferry us about as driving was out for the most part. My daughter and I danced in a coordinated manner, and she would help me in so many ways. It made our bond stronger, and she reflected the enormous pride she felt in assisting me. I could either sink or swim, and my child kept me buoyant. Pneumonia followed, as I couldn’t breathe from the base of my lungs. Home Care sent a dear soul to clean up my house once a week. I looked out the front window, and saw an elderly lady struggling up the three steps to the front door. She would groan, trying to vacuum and wince when she mopped. We ended up having cups of tea on her visits, she regaling me with stories of days gone by. I couldn’t put her to work!
My local neurosurgeon says that he cant operate for pain relief, as it simply wouldn’t help. When structurally I am unable to walk, or breathe, then we will go in. He encouraged me on my last visit, telling me I am doing a good job. I have to keep moving, and exercise every day. Whether it be a walk, swim or visit to the gym, it helps. I feel connected to a body I spend quite a bit of time attempting to escape. I do weights, and work out on the cross trainer, as it doesn’t provoke agony afterward. A scientist friend put me onto Zen Spray by Martin and Pleasance after I broke my back again. I find it helpful, and it can be used on fracture sites. I have a lumbar brace, which holds me together and provides some comfort. I use a walking stick, as without it, I fall over, particularly when tired. I have learnt not to compare my days with others. Anything accomplished, whether it be sitting at my desk, or pegging up washing, is a triumph. I take medication to help with the pain at night so I can catch a few hours sleep, and if I have a busy day coming up, I have to plan for it. That means resting before and after, just laying flat, and pain killers. I have a TENS machine, which I use frequently, and wintergreen oil helps soothe the arthritis.
I will be trialling new hormones to compensate the bone loss in the next few months, and seeing my neurosurgeon at St Vincent’s. I feel blessed. When I suffered the breaks through the thoracic region, my right arm couldn’t be lifted high, and I suffered constant tingling. It is somewhat better, enough that I can write and grip things. Positive self-talk is a must for the mornings I crawl to the bathroom. “You can do this!” I insist. When I am out and the pain ramps up, I work out how much longer I have to be upright before I can rest. Funnily, it helps. “Almost there!”
One wrong move, or carrying too much weight, and I can feel (and hear), the scaffolding go. I have come home from grocery shopping in agony, which nothing tempers. Relaxation music and meditative cds are a blessing as I try to escape the pain at night. Bowen therapy has also been a help when the pain isn’t acute. It is worth trying to maintain your mobility and limit the daily pain. I know what it is like to feel helpless, to have pain drag you down. I know what it is like to feel isolated, removed from the wonderful things going on outside you. Be kind to yourself, surrender when you need to, and do something that shall help you feel good. It is a mental battle, living with pain. Be your best advocate.
Share this:
My Spine.
Since my back was broken in the fall at fifteen years of age, I have had almost twenty years of intense pain. Operations, grafts, casts, hardware, braces, physio…I have endured pain that I never would have imagined. I lead a ridiculously full life in spite of it all. At fifteen, I had a hip graft and Harstshill rectangle wired in. The next year, the hardware was taken out as it had slipped out of place. At seventeen, I had operations to save my life, as my spine had collapsed, crushing my stomach, heart and lungs. At twenty, I had surgery to remove the rods screwed alongside my spine. Nobody knew how I would cope or be able to hold myself up without them.
Throughout the next year, my spine was weaker, and as my oestrogen levels dropped-the result of medication I was taking for endometriosis- my bones weakened. I slipped over when my daughter was two, and heard a frightful snap in my back. The pain was so intense, I could hardly breathe. With no-one else around, I had to pick myself up, and take the stroller back to my car. I drove home, knowing that I had broken my spine. I certainly had, from T10-T12. For those who have injured their backs, the following will make sense to you. In my MRI report, it stated, “At C5/6 there is arthrosis bilaterally, contributing to foraminal narrowing on the right (foramina are channels where nerve roots exit the spinal cord). At C6/7 posterior broad based disc osteophyte (bone spur), protrusion is seen. In the thoracic spine, there is anterior wedging of T7 vertebral body with approximately 30% loss of height anteriorly. Subchondral bruise related to the left T6 costovertebral junction, being degenerate in nature. In the lumbar spine, posterior step deformity of L2 relative to L1 remains. Disc dessication (dried up discs), are present at L5/S1. At L4/5, there is a degree of facet arthropathy of the large ligament in back. L3/4 there is again arthropathy associated with scar tissue related to previous laminectomy, involving much of the upper lumbar spine. At L2/3 the facet arthropathy indents the posterior aspect of thecal sac (the membrane surrounding the spinal cord).”
The report above was tabled almost five years ago. Things have gotten worse. Being in early menopause has made the pain more intense and my bones more fragile. An attempted murder half a lifetime ago, and I deal with the aftermath daily. I can handle the pain, but what hurts is not being able to go horse riding with my daughter, nor skating, nor cycling. If I fell over, the damage would be catastrophic. How do I cope, and what have I learnt? I will tell you in my next blog piece.
Share this:
Nina and my Magnanimous Gift.
My bolshy mate Nina had foot surgery last year. She was desperate to get out, after being housebound for weeks. Knowing she couldn’t walk and was on crutches-her foot needing elevating- I decided to gift her tickets to Les Mis on Boxing Day, when we would be amongst the first to see it in Sydney. Nothing was too good for my friend, so I got the best tickets to the Premiere theatre. Envisioning recliner chairs, and ease of mobility, we ventured out. The first hurdle was navigating her enormous foot and crutches up the narrow escalator of the shopping centre. Phew! We were then informed that the “special” cinema was down three flights of stairs, no lift at all. Bloody hell! We were laughing and she thanked me profusely for my “special gift.” I was making her earn Les Mis. She was sweating and breathless from the effort when we completed the task. Snacks in hand, we sat down, only to have the loudest American on earth squeeze in next to us. We had no recliners, and she had to prop up her crutches to keep her foot elevated. The American needed the lavatory right before it started, so she had to reposition herself yet again. He came back and again she had to move. Right when Fantine sings “I Dreamed a Dream,” the American’s food came. “Bloody hell!” she cursed as the usher made his way past. His orders of wine and other beverages then arrived, followed by dessert. It was a long three hours. Nina cried and I offered her tissues. She pondered how much food and beverage a bloke required during a movie. She psyched herself up for the ridiculous walk to the toilets. Nina is a hero of mine. She was an anchor during the horrid year of IVF cycles. 
Her daughter and mine will be friends for life, much like Nina and I.
RAPHAELA ANGELOU 