Graeme Murphy’s Swan Lake inspired me with hope for progress……

Emily and I attended Graeme Murphy’s Swan Lake at the Capitol Theater, Sydney. I never saw the tickets as Emily booked our outing so I arrived into my seat expecting to see the traditional interpretation. I was instantly aware of the design change and delightfully intrigued as the dancers told this new version of a classic.

I am completely in awe of ballet dancers ability, their posture, poise, strength and agility. They communicate a dialogue using only their streamlined bodies and elegant limbs. I adore the dances and lovers pas de deux but for me Swan Lake centers on the swan and cygnet performances.

Emily and I were transfixed, the cast were graceful, honed, no movement was exaggerated unnecessarily. I wilted with exhaustion as I watched their bodies so unified, so skilled with their pointe work and so articulate in their pose. The entire performance was perfect to my eye, each dancer held me spell-bound and at the end I was joyfully overwhelmed by the entire experience. It was spectacular.

As we waited for our taxi home I reflected on the dancers agility, balance, grace and strength and this thought inspired me to hope for progress in SCI recovery as our bodies are incredible, versatile and adaptive. The ballet dancers heightened my appreciation of our human form and our capacity to conquer physical challenges.

I watch Emily in awe everyday as she shows me how adaptive she has become. She displays balance and poise in a body that doesn’t respond to her will. She shows grace in her acceptance of her situation and strength to persevere towards her goals of higher education, social inclusion, sports and travel. The dancers and Emily have much in common considering their determination and inventive adaptation to their physical demands.

The ballet dancers reinforced my hopes that medical scientists will overcome the mystery of the spinal cord as we are complex physical creatures with strong wills to progress, succeed and evolve. Human nature was displayed to me by the dancers; they showed dedication, perseverance, determination and imaginative artistry.  These exact same human traits are also required in the quest to overcome SCI and develop treatments. I have faith in the technicians, scientists and doctors who contemplate the complex puzzling combinations of DNA, stem cells, drug and epidural stimulation treatments searching for a remedy.

I returned home buoyed up by the ballet dancers performance with hope in my heart. Medical successes are not performed on a stage but there is an enormous audience watching and ready to applaud and embrace all the therapeutic gains in the SCI arena.

 

 

 

Emily and I are on the telly – 5th March 2015 -Channel Ten News at 5.20pm promoting the Strength 2 Strength program for carers

The Strength 2 Strength program is specifically designed for family members of people with spinal cord injury:

I remember in May 2012 I was invited to this relatives meeting at Royal Rehab, Ryde where we were asked to; relax, share our story and discuss resilience, discuss being actively in charge and discuss the source of our strength. I admit that my heartfelt reaction was to; take a double shot espresso, bottle of vino, pack of fags (I don’t smoke) and wail throughout the two-hour session. A friend gave me sound advice when I told her of my plan –  “Absolutely all of the above”

Being the compliant person I am I turned up for the Strength to Strength session to find that the group initially was ME! The  Social Worker would have probably cancelled if she had any prior knowledge of my ability to analysis and talk!  We established that a group can officially be any number over one, so we were official.

The Social Worker asked if I would like to follow the program which incorporated a relaxation tape for twenty mins and an assessment and discussion of my strengths. I felt terrible as I could have saved her the bother of struggling with the 1970 cassette recorder. The ‘Mission Impossible‘ tape whirled into action in an asthmatic fashion and the gentleman’s soft voice asked the assembled group (me) to deep breath and relax. Within a nano second I was peacefully oblivious to the relaxation instructions as I was fast asleep. I only had to be asked to sit down to accomplish total relaxation let alone the superfluous instruction to close my eyes. Spinal cord injury rehabilitation as a carer is exhausting.

After rudely waking me from my relaxed state I was set the task of picking my strengths from a pack of cards so that we could discuss. I shuffled the large stack and focused on each word. I looked at the first card ‘sensitive’ I paused to consider and decided “yes” I probably am. Then I picked up the next card ‘caring‘ and thought “yes” I’ll pick that as well. Again and again I picked up the cards; co-operative, resourceful, creative, loving, supportive, independent, forgiving, open, honest, organized, thoughtful, communicative, very communicative! Within a short space of time I’d collected nearly every card into a large pile of glowing, strong attributes while the social worker looked at me, thinking “just as well no one else had come along to share the pack of word cards.”

The Social Worker looked at the array of cards now in front of me as my identified strengths and with just the slightest tilt of her head and merest hint of an eyebrow raise she said “It is very positive to see how many strengths you see in yourself!!”

She asked why I had discarded the words in the smaller pile of cards. The discarded cards included the words happy, positive and peaceful. These words evaded me, I had to explain that through honesty with myself and others I can communicate and achieve practical outcomes, I can fill in forms, get quotes for house modifications, care, love and support Emily but peace? I strive to find peace in our current situation. I need to accept Emily’s disability fully, to accept her functional loss, I have to release the guilt I have if I am not continually present at her side, I have to reset multi level life buttons so that I can be at peace while Emily develops independently. I am aware of my personality traits and I see my goals but understanding the path does not ease the exhausting journey. I am dragging my heavy heart; my heart is not as accomplished as my head in addressing this new post February 2012 world that we find ourselves in. My heart still bleeds whatever my head thinks or comprehends.

The Strength 2 Strength program was five weekly sessions. My group did increase and incorporated  a variety of carers, we shared and listened to each other. Far from being burdened with other peoples grief I regained a sense of perspective. Everyone was struggling to cope and care within individually traumatic events. I realised that I needn’t be stoic, my peers had strategies and experiences that empowered the group. So a contemporary support network developed, nurtured by a professional Social Worker within is structured program.

By session three our group confidentially revealed our new-born strengths; anything good or positive that had come out through our experiences. I realised I still had Emily, she was alive, I could cope and I was managing, it was also easier as a group to problem solve issues than individually. Talking was therapeutic, we encouraged each-other; re-emphasized the importance of being ourselves, taking time for ourselves, recharging our batteries as our family members were dependent on us being healthy and fit; mentally and physically.

The program set out:

1. To provide information on ways of managing the range of feelings, changes and challenges after a family member sustains a spinal cord injury.
2. To provide information on services and supports that you can access now and in the future.
3. To provide an opportunity to meet with others who are in a similar situation and share your story and experiences.
4. To assist you to build upon your exciting strengths and resilience.

At our final meeting it was obvious the group had forged a bond, a bond that continues and unites us still and into our futures.

As for Emily’s psychological healing  – while at Royal Rehab, Ryde there was a resident psychologist scheduled into her weekly routine, Spinal Cord Injuries Australia (SCIA) have a sympathetic peer support group that visits. It can’t be overemphasized that psychological support is imperative.

We have been home now for just over two years I hope my strength and resilience shower Emily with energy that facilitate her independence outside the four walls of the house and back into life. Strength 2 Strength was a great foundation program for our growth towards our new normal, our new future.

Life rushes in as coping with SCI becomes manageable

Recently I was rear ended in my car! I was minding my own business, slowing behind a vehicle that was indicating to turn right when that screech of braking wheels makes your shoulders rise in anticipation of the thump, a glance in the rear view mirror confirmed a Masda was in my truck.

The unperturbed car ahead of me turned right and I pulled to the left to exchange insurance details with the Masda driver. No-one was injured so really a little bent metal wasn’t going to upset me. The at-fault driver was a nice man, he apologized, shook my hand and then he had to get on with calling a tow truck as his car had its nose broken, the bonnet resembled the beak of an eagle; hooked.

I returned home to phone through my insurance claim; the car was booked into a body workshop for a quote within 24 hours, a very smooth operation and I feel stress free regarding the unfortunate incident. I don’t relish the body work being done as I’ll have to drop the car, catch the bus home and be grounded till the job’s done. It takes up so much time but as I mentioned it’s a well rehearsed procedure from the insurance people.

After that eventful morning I put the kettle on and fetched the dog who was in the garden. She ran up the stairs and popped herself to bed. Emily pointed out that the dog was limping. I called Beastie to walk around the kitchen table and sure enough she was displaying a reticence to put her right hind paw to the floor. I lifted her leg to examine her pads, there on her ‘palm’ was a large wound. It looked like an oyster shell cut from rocks at the beach. The dog let me poke and stroke her so that I felt sure this was her only injury. The cut wasn’t bleeding so I patted her and she went back to her task of lying down.

After dinner I called the dog to sit with us to watch TV . I touched Beastie’s left hip and she yelped. A high pitch yelp. I lifted her on to the bed to examine her more thoroughly. I could only detect the cut paw pad but I couldn’t settle as I hate that the dog is unwell, yelping and not putting her leg to the floor. Her hind leg is being held like a ballerina,  the paw is pointing in ballet position two, poised to dance lightly on her toes.

I feel certain that the Beast will be fine in the morning, she is eight years old and behaves like a puppy. She is very boisterous so always at risk of injury, she isn’t a decorous dog! I suddenly realised that I was churningly anxious about Beastie and just vaguely annoyed about the car.

I mention the car crash and Beastie’s injury for a reason as it confirms that after the acute trauma of SCI, life returns and here I am some three years later with everyday issues that have to be addressed; a poorly dog, a smashed car, searching for a holiday, On-Trend clothes shopping, seeking ingredients for recipes and early morning cycling – all contributing to my everyday. Be assured life returns after SCI.

 

 All better now!

Emily’s second hand surgery has been easier, let’s hope it’s as successful!

I have to publish this post before I forget how we have managed with Emily’s cast. The operation to address tenodesis was on December 9th with the original bulky white cast being replaced by a lightweight purple cast the following week. We were on the bus into town minutes after the vividly coloured, ‘punching fist’ cast had dried, well, it was the week before Christmas and a girl has to shop!

This is the second Christmas that Emily has been in a cast because surgery and rehabilitation can be scheduled during the long university summer break. It isn’t the best season to be wrapped up to the elbow as the heat does induce additional finger spasms with some neuropathic pain but these discomforts are short-lived.

This second surgery has been less arduous and draining because we had realistic expectation following our experience of deltoid to tricep tendon transfer in 2013/14. The cast has been easily accommodated in the shower with the help of a bin liner and sellotape. It didn’t dent our Christmas cheer or quash our New Year’s celebrations.It hasn’t impacted on our activities because we scaled down our diaries or is our nonchalance towards this purple fist cast because we accept Emily’s post operative immobility as we anticipate her future functional gain?

Emily has endured the needles, examinations and prodding that surgery involves. She has merrily eaten turkey, bubble ‘n’ squeak and sausages with her single left hand. She has lifted and balanced a chilled glass of water, wine or champagne with masterful expertise over the holiday period so it poses the question “Why has this surgery been so much easier?”

This surgery has been easier because there was less fear, this second procedure was relatively straightforward and many surgical and rehabilitation aspects are repeat experiences. With a known entity comes placidity and patience. Recovery is welcomed with restraint and tranquility, nothing can be rushed or hurried, best to accept the inconvenience as a speed hump and slow down.

When a repeat experience leads to a positive functional outcome we are more likely to be consensual, compliant and co-operative as we acknowledge an anticipated goal. When  surgery is an accepted  part of the journey to increased ability there is minimal criticism because we value the consequences so highly. Basically I am less able to critic this event because it is already becoming our Christmas norm, a reality that isn’t feared, it isn’t as impactual as we’ve adapted, calmly anticipating its value to Emily’s dexterity and capability. If I don’t mention details now I will forget as I recall less and less minutia as I accept our circumstances, year on year.

Emily has coped admirably and held her cast aloft like a leader rallying her troops forward, encouraging us to follow her into Woolworth’s, onto the bus or up Spofforth Street to grab a sandwich and a latte!

We visit the hand clinic tomorrow. These visits are unceremonious, amenable and relaxed yet the surgeon’s skill is so evident, Emily gains through this specialist dedication and proficiency. There is one facet of medicine that will always prevail, our thanks to the nurses, doctors, surgeons and physiotherapists, we are very grateful and I would never forget to mention that.

Progress this year shows Emily blossom into post trauma independence and I celebrate !

Today is the anniversary of my 1st blog. I thought it fitting to reflect on the year; Emily’s progress, the subtle changes that experience has delivered to Emily and me, the evolution of our separate short and long-term goals.

Emily has progressed enormously as when catastrophe strikes the individual has to psychologically address their physical change, accept their trauma, devise coping strategies and reassess their short and long-term goals. It’s the individuals journey through their own mental and physical injury towards healing.

I had my own journey overcoming parallel issues to Emily but as her carer, her mother. I could assist her in the recovery process but only she could write the agenda, she set the goals, I expedited her aspirations, I eased her hike to health by sharing the administrative burden.

My part in my daughter’s recovery was always transient, I had to subtly withdraw because her life’s course is her own, her ability to have a full, productive, active life is inherently personal and driven solely by Emily. The greatest dis-service to a person with a disability is quashing their independence. I revel in Emily’s growing confidence, her  post trauma personal development, her objective growth. Her emotional and psychological resilience addressing change; change in her appearance, her relationships, her social life and her altered ambitions.

I have distanced myself gradually because we are not living a shared life. I have my own inclinations which I have to pursuit. I was delighted to spend twelve days in Barcelona recently, leaving Emily alone. I left for Europe secure in the knowledge that Emily was competent, assertive and informed in all aspects of her need. The dynamics of our relationship have always centered on nurturing Emily towards physical, emotional and social independence – my time away consolidated Emily’s adaptation, independence and well-being.

I celebrate this past year as Emily has managed her stressful transition from rehabilitation to home, from patient to student, from reliant to independence. She has shown mature insight as she set achievable goals,  she has mastered new skills within safe environments, she manages care delivery and student demands gently which engenders strong working relationships.

I have gained enormously witnessing Emily’s graceful, educated yet assertive approach to life so it is a delight to report on her ability, her strength of character, she shows good humor and love everyday – no ounce of dissatisfaction, anger or belligerence.

Traumatic injury is heartbreaking but with time, care and resources individuals and families can recover. The recent breakthrough in cell transplantation and the success of epidural stimulation treatments engenders great hope for the future. Although research and development fosters hope we must take care to live now.  That is my message one year on; that Emily is living, she’s back at University, she’s on the bus, she’s back up at the bar ordering a cocktail, she’s travelled in Australia and Asia and she’s independent.

 

One year on I can proudly report that Emily teaches me everyday caring!

Twelve months on Beastie is the singular unchanged being. She remains active, hungry and completely devoted !