We are pushing #City2Surf – to raise awareness and funds for community support……

I collected our team bibs for City2Surf2015 and started to get excited, less than 48 hours!!

We had our last training session on Wednesday which went well except very breezy which meant Emily and Cobie both felt cold. We had a group discussion about layering up for Sunday. I can assure you all now that there will be no shedding of clothes when these two race! Keeping warm is an issue as a wheelchair user.

 

Emily is fortunate to own I/O Merino garments, light weight layers that help conquer the cold. The altitude full length tights are the ultimate underwear. These thermals are lightweight making them perfect for layering and the mid rise fit with an elasticated waist band ensures that they will never slip down. The altitude lightweight long sleeve top is perfect for wearing on its own or when exercising as the fabric is breathable allowing moisture to be wicked away from the skin helping to keep Emily from feeling clammy. I mention this because Emily wouldn’t leave home without these imperative layers under her sports wear.

 

 

The team will be in royal blue ParaQuadNSW jerseys. We are starting in the Gold Charity wave at 8.20am. If you see us  – cheer!!

As members of ParaQuadNSW both Emily and Cobie have been awarded funds to continue their studies, a integral link to rehabilitating after a traumatic spinal cord injury.

 

 

Both Emily and Cobie will be pushing to Bondi using their Freewheel attachment. It allows them the confidence to tackle terrain without worrying that their front casters will eject them if they catch a divot on the course.

 

 

Our last training session was slightly soured as our coach was noticeably absent due to a grooming appointment.  Unfortunately Beastie can not compete on the day so we will have to manage without her barking instructions and infectious enthusiasm.

 

 

If you would like to sponsor Emily on this epic challenge to raise awareness and funds for ParaQuadNSW, an organisation that supports people with spinal cord injuries in their community,  please click here for details. Thank you x

ParaQuad.org.au   Click here

I/O Merino underwear layers    Click here

Freewheel from Able Rehabilitation Equipment   Click here 

See you there! Sunday 9th August 2015

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.

SCI isn’t a board game but in an analogy friendships help you roll forward.

Spinal cord injury (SCI) isn’t a game but in an analogy it would be the snakes and ladders board game played in my childhood. Considering SCI there can be more snakes to slip and slide down than helpful ladders when manoeuvring towards a goal. The best ladder for us has been establishing some mentors. Our mentors are experienced carers and wheelchair users, they shed light on some complexities and the shortcuts that help life roll a little more smoothly. Mentoring is another word for friendship with a practical aspect to conversations, someone to bounce an idea off, someone to ask, someone to confide in or share in a joke.

Emily connected with other SCI patients in Royal North Shore Hospital, it’s the regional spinal unit for NSW, Australia.  These early friendships witnessed the maelstrom of feelings which occur with an acute event. We were all challenged with our catastrophic situations and conflicted as we each addressed the instability of traumatic disability so these friends saw anger, disbelief, raw struggle and tears. But even in this storm of learning, conflicted thoughts and sadness there was support and care, there was enormous empathy.

Within my own acute experience I had a limited ability to share initially as my own burden was too great but there was an affinity, a kinship that didn’t need to  be explored or explained. There was kindness and understanding yet still we were individuals within the unit, still on our own paths trying to cope as separate and distinct from the others. I still held the hope that Emily would recover. I thought we may have the ability to leave the group so there is a subtle disassociation because, at first, no one wants to accept they are members of the paralysed club or the elite quadriplegic group.

Only in Ryde did the process change because understanding, realisation and acceptance comes. Only at this point did I have a capacity to share and befriend individuals so we became a group. Having accepted that we were members of the SCI group, the group revealed its strengths. The group held different and diverse personalities that at any time could aid and support each other, some individuals had answers to questions that benefitted us all. Working within a group we all achieved more than we could separately, or maybe we got to a goal quicker with less slippery snake mistakes involved. Being in a sharing, caring supportive group is a practical ladder to success.

The group morphs positively as each individual grows in knowledge and experience. As confidence grows the group is more friendship that problem solving but at any moment there is always someone a phone call away for help and advise.

There are professionals in Royal North Shore Hospital and Royal Rehab, Ryde who play an important part in the learning and acceptance journey but it’s the friendship group that chit-chat, swap ideas and travel recommendations, it’s the friendship group that offer support weeks, months and years after rehabilitation discharge.

Paraquad and SCIA are excellent resources to join. Their websites offer a wealth of information and advise. SpinalCure and SpinalNetwork are important sites to support, read, to stay informed and connected.

As with the holistic big picture of life; SCI is all about a balance. Each of us needs the support infrastructure of family, friends, mentors, support organisations and networks to compliment our knowledge and learning. SCI and carer health is a fine balance and with more ladders it is easier to move forward.

Relaxation tips for Carers (the irony of that statement) but have a look:

Relaxation can be the last thing we think about during our busy day but crucially important for us all. Without a moment to remember ourselves within the daily routine we can loose perspective. Relaxation readjusts my psyche so that I am calmer and surprisingly more energised.

The list below also surprised me, it’s worth reading because we all know we should include some aspect of mindfulness or relaxation into our schedules.

• Take a massage – see a physiotherapist for a stress triangle massage – that’s a head, neck and shoulder massage
• Karaoke – Swedish researchers found that group singing helps promote a calm and regular breathing pattern that’s good for health
• Manicures are therapeutic!
• Hang out with close friends – addressing the same difficult scenario with someone in the same boat helps both parties cope better with stress according to a study from USC Marshall School of Business in the US
• Board games are an antidote
• Workout – play sport with buddies to forget any worries
• Yoga stretches relax the body and mind

All sounds good and there’s something in the list for everyone – just find time in the day and schedule friends for activities. Please don’t schedule me for karaoke or scrabble but I’m up for a massage, manicure and some yoga.

I plan my cycling early so that I am up and out, returning before anyone misses me.  If exercise is a time challenge then an early morning walk with Beastie (below) can energize me for the day ahead.

The message is don’t neglect relaxation or exercise as you need to care for yourself to be a carer to others.

 

Carers – accept help as the gift is in the giving.

I can’t remember the circumstances but I remember my great friend in Ohio telling me “The gift is in the giving.” I reflect on this whatever I receive, whether a present or a delicious salad.  I appreciate the care and effort involved in getting the gift to me, as I consider the giving – I enjoy everything I receive.

When Emily was in hospital soon after her spinal cord injury (SCI) I was asked to coffee by a friend. I nearly cancelled due to lack of time, anxiety and overwhelming stress in that acute phase of our traumatic journey. Luckily I didn’t rescind on the arrangement and I duly arrived panting with thirst as I had had no time for refreshment and it was 3 pm; time for tea! My friend put the kettle on and introduced me to her friend “Hello”. I couldn’t possibly have known how impactual this meeting was to be, my friend’s friend quickly established herself as an obvious mentor. She had experienced SCI in her family and whatever I mentioned she understood from her heart.

I told, what I thought was, my unique story yet time and time again my new mentor nodded “yes, we experienced this too, yes, we thought that too”  I didn’t need to explain my fears as they were already understood. During this meeting we were discussing coping methods and strategies. I remarked that everyone wanted to help but while Emily’s care was provided in hospital I didn’t envisage anything that needed supplementation. My mentor leaned into me and looked me in the eye ” You need all the help you can get, say yes to everything”  I was aghast and asked “Won’t I exhaust my friendships?”  My mentor looked directly at me again ” You’re in crisis, you need your friends now.”

I recall this meeting because I felt embarrassed to accept help, I felt I would drain my friendship group as they tired of me and any exacting requests. BUT I took my mentors advise and let another friend organize a food roster, each weekday a meal was popped into an esky by the front door. It was either eaten that evening as I returned from an exhausting day at hospital / rehabilitation or I took it to Emily the next day as a superior meal to the hospital menu. After 10 months in rehab these friendship food gifts saved us, they fed us but not just nutritionally, they fed our optimism, they fed our hope and resilience and made long days bearable. These gifts constituted true comfort food, made and delivered with love.

Finally Emily was discharged home and without the travel to and from rehab, without the chair clinic appointments, home assessments, renovations and equipment evaluation sessions I could actually get to Woolworth’s. I actually managed to cook. The food deliveries slowed to Monday, Wednesday and Friday until I got myself into a routine. Slowly our lives returned to normal, a new normal. Food choice, preparation and dishing up dinner on time is natural within a family so it was a happy moment when we realised we were self-sufficient again in regard to family meals.  Our return to normalcy was delightfully therapeutic on one level and devastating on another, therapeutic as we were home, devastating as life had changed so dramatically. I tried to thank my friends but “thank you ” never seemed enough because it was more than a meal, it was tangible support, tangible food parcels of care.

Since Emily’s accident we have received many delicious meals and care gifts so when a friend recently needed assistants to help with a difficult, time-consuming chore I happily volunteered. It may be viewed that I have enough to do but I think helping my friend was a priority. I can’t always be relied on as I do have a structured schedule with little flexibility as a carer but if I can aid others then I will. Having received help – I now understand and fully appreciate the gift of people’s time and energy. Life is a circle and I respect what others did for me when I was in need so as soon as I am aware of an opportunity to give back, I endeavor to commit to assist.

I could never encapsulate the gratitude I would like to extend to my friendship group regarding the care displayed to our family.   I would encourage anyone in crisis to accept aid, without reticence or embarrassment. I am writing this not because I hope my front door esky fills with salads but because I was so happy to help my friend that I truly, truly understand that the gift is in the giving.

 

I dislike deep dark holes, I’m top side with the kettle on!

“I dislike deep dark holes”  sounds random but let me explain. There have been instances when issues drop into my lap, problems which I don’t have any answers to. Being a good listener maybe all that is required, yet I can be subtlety drawn towards the dark,  swirling maelstrom, that spirals out of control to a deep hole that traps us at the bottom where we can get stuck trying to figure out how to address the issue. I prefer not to participate in any mental surfing that ruminates on problems in a brooding fashion. I prefer to stay firmly above ground in the sunlight and have a ladder or rope ready for any hole dwelling, mulling, contemplative individuals. I can put the kettle on and call with words of encouragement, I can listen for as long as it takes but I resist the temptation to fall into the whirlpool of circling thoughts and issues. This theory works both ways as when I feel rotten and can’t see the wood for the trees I talk to my family and friends and there is always someone with a verbal, not literal, ladder to help me out of my hole.

Sometimes issues can be resolved by simply remembering: the past cannot be changed, and doesn’t change the more anyone talks about it, so best to accept it as it is. The future is unknown so no point mulling endlessly about what could happen in a million different imagined scenarios. The key is to be in the present, address just what is in front of you today. I have for some time now been practising living here and now, being responsive rather than reactive. I endeavour to drop any bias that entrenches or prejudices my interpretation. My aim is to see life just as it is. If I observe life with this attitude life is usually simple and accommodating.

Emily’s spinal cord injury has lead to some deep  thoughts revolving around the unanswerable “WHY?”. It is best not to get drawn into that debate because it just simply is. There is no answer to “WHY?” “IF ONLY” “WHAT IF” . If I do try to process these questions I’ll just end up with an ulcer. However many times I revisit the past the outcome never alters. I can not anticipate the future as too many variables and unknowns so the best place to be is here, right now, enjoying the day in front of me. It would be a shame to miss today as missing today means I’m missing the point.

If I find myself in a deep musing hole I pop my head over the rim and look around as answers are rarely to be found in rumination pits. Answers may never come to me but living in reflective depression asking tough soul searching questions of life is no way to spend my time so I chose to stare each day in the face and make the most of it. The best approach for me is to accept I’ll make mistakes but if I care and hold on to my core values with integrity, if I always treat others as I would have them treat me, then maybe clarity will come to all my questions and enlightenment will show me a clear path forward, no dark melancholy holes involved.

 

Budgie Bolt for Bonnie to Raise Awareness and Funds for Youngcare

Bonnie often pops in to see Emily as they are great friends, we know her car as a 6 metre surf ski is perched on the roof rack. She is a welcome visitor and appreciates our warm home-baked cookies with English Breakfast tea!

Imagine our heartfelt connection as Bonnie undertakes the 6km Budgie Bolt on Friday 28th March. “The GIO Youngcare Budgie Bolt is a daring race (in barely-there budgies) which aims to increase community awareness about the lack of choice in care and housing options available for young Aussies with high care needs.”

Youngcare “was established in 2005 following the inspirational story of one woman’s battle to find relevant and dignified care. Currently more than 7,500 young Australians (under the age of 65) with full-time care needs are living in aged care simply because there are few alternatives (National Disability Agreement 2010). There are also 700,000 more young Australians being cared for at home by family and friends, often with limited support (Australian Institute of Health & Welfare 2007).

All young people deserve to live young lives. Youngcare is committed to raising awareness of the issue across the nation so that we can drive change and create real choices for young Australians and their families.

No matter how uncomfortable our Budgie Bolters feel, it’s not as uncomfortable as being a young person in aged care.”

For more information please visit www.youngcare.com.au    http://www.budgiebolt.com.au

See The Mosman Daily article – Budgie Bolt for Bonnie, Raising Awareness and Funds for Youngcare

We will be at the 4pm start / finish in Tumbalong Park, Darling Harbour to boost Bonnie on her way. We will have a cookie in our picnic for her!

Gear Up Girl raises funds for TAD’s Disability Services

Sunday morning saw me race to Sydney Bridge –  I achieved an Olympic time for this short distance as I had set my alarm incorrectly…….. I was astonished when my waiting friends rang to enquire as to my whereabouts? “I’m at home” instantly awake and realizing I shouldn’t be in my PJs’ but in lycra! The quickest dress and largest leap on to my prepared bike got me to our prearranged start and we were off.

Gear up girl is Bicycle NSW’s female only cycle, it encourages all ability cyclist to get on their bikes. My group started from Sydney Bridge because rail track works closed the train station at Burwood so we made a decision to meet the ride at its intersection on the Princes Highway in TempeWe had a seamless ride, after my late arrival,  enjoying the waterfront cycleway around Botany Bay , across the Taren Point Bridge then on the cycleway over the wetlands beside Woolooware Bay to Crunulla. Our gang opted to elongate our ride an extra 20km to Kurnell , out along Captain Cook Drive, through Botany Bay National Park.

Bicycle NSW says “The gear up girl challenge is ALL about being active, feeling good about yourself and making a difference by leading an environmentally friendly lifestyle” Bicycle NSW is proud to support TAD Disability Services as the gear up girl charity for 2014.

TAD Disability Services is the only charity in NSW which designs and builds custom equipment to enable people with disabilities to lead more independent lives. At TAD ” We believe that every individual has the right to equal opportunities and affordable equipment”

My girlfriends and I had a wonderful day, here’s what they said:

” Gorgeous fun-filled friend fueled fab day”,

” We rode, we talked, we had coffee, we smiled”,

“Loved it”,

” Thanks for getting us geared up once again”,

” What a great day, great company, glorious weather and great coffee on the beach.“

This event is well organised and I have to  stress how vitally important TAD’s assistance is to people with disabilities. The TAD’s workforce includes retired engineers who volunteer their skills.  The TAD team provides assessments free of charge and subsidizes the cost of Freedom Wheels Bikes to families who often face overwhelming financial hurdles.

Well done Bicycle NSW, well done girlfriends – we fund-raised for TAD’s to make a difference, to deliver adapted, custom-built pieces of equipment to facilitate a disabled person’s freedom!

For more information about TAD Disability Services please visit their  website or call 1300 663 243.   For more information on Gear Up Girl visit  www.gearupgirl.com.au

Lavinia is going to Sochi !

Emily’s friend Lavinia Chrystal has been selected to compete at the 2014 Sochi Winter Olympics. Lavinia will represent Australia in the Slalom and Giant Slalom. The competition commences February 7th – see the Olympic schedule here

See the Paralympic Schedule here  7 – 16th March 2014

Well done is an understatement for Lavinia’s Olympic journey, she has persevered, she has cross trained diligently, she held herself steady through injury, she kept focused, she endured long periods of separation from family and friends – all done with humor, grace and determination to make her athletic dream come true.

What a joyous picture of Emily Bamford and Lavinia @laviniachrystal  as they celebrate their selection. The World will watch while these girls speed down bone shaking slopes – I know there will be butterflies in our stomachs as we will all be there with them!

Best of luck to the entire Australian Olympic and Paralympic Team.

My original post about Lavinia – see here 

Is The Grass Greener Somewhere Else?

I think on occasions it is human nature to think the grass maybe greener somewhere else. The truth is that life is as good as you make it , wherever and whatever that may be. 

New year is a good example of thinking the grass is greener somewhere else, as I’m under the impression that everyone has a wild and exciting time, the night of the year, yet when I reflect with friends on past New Year’s Eve celebrations they are often disappointing, tiring and the event ends being lackluster . The best nights, as we continued our discussion on this topic, were intimate suppers, a glass of champagne and home to bed soon after midnight…. well maybe a little dancing but often the best nights had less expectation  than New Year’s Eve glorified anticipation.

Carers can often feel excluded and isolated yet they can be enjoying the most profoundly intimate relationship of their lives which others miss out on. Sometimes ill-health and adversity brings out the best in families, friends and communities. I have witnessed the happiest of times within my environment because family and friends realise what matters in life. What I am trying to say is that as soon as I stop thinking about what everyone else is doing and concentrate on what is in-front of me I see the joy sitting in my lap.

Christmas is special for many reasons but the highlight for me is seeing family and friends together. It is a joyful time and food plays a small part although this year I over ordered on ham so there were complaints about eating ham for over a week, food may play a small part compared to people but our ham did dominate at every meal. We moved on from common complaint about the abundance of ham to an orchestrated debate on recipes for left over ham and in desperation to be rid of the ham we contemplated the pros and cons of ham curry!  I still like to think that It was being together that made the event, even if we only talked about the never-ending supply of ham. Ham united us in our quest to be rid of it  and I have also found that disability brings family and friends together  – united in their quest to persevere.

As Christmas and the ham recede into the past for another year I thought about how much I am grateful for, yes – there is life after an injury – it’s just a different normal. I read an article today and agreed with the sentiment “it’s not the disability that makes people feel disabled — it’s the environment”  Read more. Our family  has been fortunate to live in Australia, a country that addresses issues for people with disabilities. Australia has Medicare, and there are systems in place that ensure basic care provision. I am grateful to our local council for relaying concrete pavements over grass verges and providing road to pathway ramps, I am grateful that Universities have departments that address people with disabilities and their requirements within the institutions. I am grateful that public transport is required to be accessible to all. I am grateful that people with disabilities are considered, they are equal members of society and it is a real crime if their living environment is the single factor that discriminates or excludes them from living completely normally. I am fully aware that some people with disabilities in other countries could view Australia as being a greener pasture.

Australia ratified the UN Convention on Rights for Persons with Disabilities in 2009, some countries have still to commit to these basic principles:

The principles of the present Convention:

1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
2. Non-discrimination;
3. Full and effective participation and inclusion in society;
4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
5. Equality of opportunity;
6. Accessibility;
7. Equality between men and women;
8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

The grass is greener, politically speaking, in countries that have committed and ratified to this UN Convention. There is an enormous amount to be done Worldwide for people with disabilities, advocacy is part of life if you are living with a disability.

As for us as individuals thinking the grass may be greener somewhere else…..I think that it is a delusion and a destructive delusion, everyone needs strong family and friends that positively reinforce the simple pleasures in life. There is no doubt that love and caring are the key to living well. If you love and you care – you are in the right place, no grass is greener.