Quick and delicious meals are imperative but how do I plan as a busy mother/carer? Wherever you are in the world when the clock hits 4pm there is a collective intake of breath, eyes roll skyward, as everyone considers “What’s for dinner?” Continue reading
The Strength 2 Strength program for carers is specifically designed for family members of people with spinal cord injury:
Taking care of ourselves is imperative and when healthy choices are incorporated into our everyday routines then well-being blooms.
Emily attends therapy sessions at Walk On in Lidcombe, aquatic-physiotherapy whenever possible and scheduled time in her standing frame amongst other exercises. These activities constitute an important aspect of her health and fitness routine. As her carer I must prioritize my health with similar vigor as being unfit would compromise my ability to give care. Essentially we all need to be robust with added vigor to meet the challenges of our active everyday roles. Continue reading
I only managed 5 hours sleep last night for various reasons so when the alarm woke me at 6 am, when I looked at the temperature on my iphone, when I did the toe test and it ricocheted back under the doona – everything was telling me stay in bed. But I hastily dressed, slurped tea, fixed my light to my handlebars and opened the garage door.
It crossed my mind to text my cycle buddy that I had had a disturbed night which led me to prioritize sleeping rather than riding. No doubt she would have text-ed back politely. No doubt that staying in bed for another hour would have been warm and snug, but no doubt cycling into the crisp darkness, illuminated only by my lamp’s small circle of light, was the right thing to do.
After a jolly “Hello” for such an early hour we decided on a route and pressed on into the deserted streets and lane-ways. There is something quite unique about being up and out before the world wakes up. Dawn gradually shed its light on our route and our surroundings. The new day showed itself as a clear blue unsullied sky with the weak sunshine of winter bringing little warmth with its rays. We cycled the perimeter of our local bays and coves, each peninsular has a slope to the water’s edge and a hill back, we tackled our route with zeal as hot coffee beckoned.
As we settled into the cafe booth with our hands cupped around our warming drinks the effort of our early morning exertion was rewarded by our lively chatter. When I get back home I will still have all the washing, I will still have a meal to cook, the car to wash but I’ll be energized by my activity, I’ll be nurtured by my friendships and I’ll be less introspective. I’ll feel healthy and I’ve positively reinforced that I ‘m not an isolated carer but a socially included and engaged friend.
Experiences outside of the home reinforce my sense of self, reinforce my identity, reinforces that Emily and I live together but are individuals. Commitments outside the home assist me in delineating my carer boundaries. I am separate from Emily, we each have different interests and friendship groups. We each bring something lively to the other by interacting separately. Our relationship would suffer without space, freedom and separateness.
There are pro and cons to road biking but one advantage is it’s an early morning sport and I can be home before the dog has opened an eyelid or stretched her hind legs, before the morning routine is scheduled. I have the perfect opportunity to maintain myself without any detrimental effects on the household. I am not suggesting that every carer takes up cycling but I do advocate that carers take some time in their day to do whatever tickles their fancy. I know Emily and I cope better if we have both been out and about and engaged socially. It’s worth getting out of bed………
I witnessed Emily’s traumatic spinal cord injury as her mother. It was more cruel than I can express, my inner sustaining flame that nurtured my positive psyche was extinguished initially and an empty sad black hole replaced it. My black hole consumed all the daylight, consumed all my worldly understanding , all my thoughts were strained, as I witnessed Emily’s loss and grief, witnessed her gently accept that she was paralyzed, immobile, quadriplegic by an oblique sports fall.
Two years from her accident I question why is change and acceptance so hard?
I have been helped by reading the Sydney University – counselling and psychological service information sheets. One pamphlet instructed me to think about change as a process with stages:
- The situation. Observation of the place I am at and that I want to change.
- Get motivated. Scribe my goals; maintain my diet and exercise, maintain my positive nature, stop struggling to accept our new normal.
- Action – make my goals happen. By hard work I practice mindfulness, realizing the past is over, the future is not written so the present is where I should be.
- Maintenance – live. A real case of walk the walk don’t just talk the talk. I practice what I aspire to be. When I become mindful I realise that the way to accept change is to enjoy today.
- Relapse recycle. There are days when I re-evaluate our new normal post SCI in our family and wonder about life’s meaning and worth. Then I bring myself back to my goals and get on with enjoying today.
I still battle with the question “why” but due to its unanswerable nature it has to be acknowledged but placed carefully to one side, discarded in favour of better questions. Where am I in the stages of change? There is no right or wrong. It is just about being realistic about where I’m at.
Emily has returned to post-graduate studies, she travels to Sydney University on the bus. Emily continues as a volunteer at Taronga Zoo using community transport. She displays her resilience everyday. My ultimate aim is to live not constantly aware that life changed on 1st Feb 2012.
On my clamber towards acceptance of my new life, my path will alter but my journey is not toward goals that are clever or complex. One goal is simple – living post SCI, accepting the ever evolving changes, coping and moving on with a strong sense of worth, purpose and a smile! A big smile.
I thought I was normal but this week I found out I am not. I undertook an impromptu shopping mall health scan in-between the salad and diary aisle. Apparently my left leg is shorter than my right leg, my right shoulder higher than my left, I have some spinal scoliosis that a banana would be proud to display. I returned home to disclose these details to my family while I unpacked our groceries. It is a wonder that I manage in my crooked skeleton? But manage I do and I actually feel very well contrary to reports dwelling on my short left leg.
The more I learn of the human body the more it amazes me. Human differences are infinitesimal; the range of eye, skin and hair colour. We are a wide range of short to tall, thin to fat, hairy to bald, healthy to not so healthy individuals. We live transient lives shifting in-between fitness and flu, losing hair and gaining weight, getting our teeth filled, our hair cut and our spectacles re-viewed. We are constantly altering and aging.
The fact is we are all individual, we suffer with short left legs, grumbling appendix and irritable bowels, we have cold sores and heat stroke. We have tennis elbow, gardeners knee, cauliflower ears and dogs breath. In days gone-by I would have been totally unaware that I was unfortunately walking around with a short left leg! When I consider the range and variations of normal within the human race it amazes me that people still stare at wheelchairs? I am definitely more odd than Emily but the wheelchair still draws a crowd.
“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.
What started off as a post about carer support groups and resources unearthed a slightly unwieldy amount of local, state and national information. There is more to carer support than I knew…..
As a carer I naturally worry, there are many issues that need my attention and I can even imagine I’m indispensable. How can I readjust my thoughts so that I am calm, focused on the important stuff and open to spontaneous worry-free adventures.