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Archive for the ‘Reflections’ Category

 

“Be confident with the the guardianship you have over your own life”

A few nights ago, when I got out of bed to go to the bathroom, my right leg wouldn’t take my weight. It kept collapsing underneath me. For some reason the quad had suddenly, very suddenly, no warning, gone on vacation.

This wasn’t the first time. It happened about six months ago too. Except then it was much, much worse. My right knee went into withdrawal reflex every time I tried to put my foot on the ground. That time I had to go into hospital for a few days because I needed 24/7 care. Nobody could understand what had happened or could predict what might happen next. I worked hard at staying calm and balancing the fear of permanent immobility with strategies for enjoying the things I’d still be able to do, as well as doing everything I could to restore function to my right leg.

While ACC helped me prepare for the physical changes by getting me equipment I would need to live independently, I quietly and determinedly set about identifying any stretches or movement that reduced the withdrawal reflex. Slowly but surely I worked on straightening my leg while I was sitting or lying on the hospital bed. Then I worked on keeping my leg straight while I tried to stand on it, even if only for a few seconds. Over a couple of days I went from standing on my leg for a few seconds while taking most of my weight on a walking frame, to walking fifty metres using crutches. I stretched my calf muscles, hamstrings, adductors, hip flexors, any muscle group that might be triggering the withdrawal reflex, any muscle group that might be weakening my quad.

Over the last six months I have devoted hours every day to stretches, strengthening exercises and reclaiming the walking stamina and endurance I had previously. I am determined to walk and maintain my mobility but I also have to acknowledge that my mobility could be compromised at any unpredictable moment. I sought counselling to help me manage this. I was offered a gem “Be confident with the guardianship you have over your own life”

Again and again, I return to this mantra. But do I really have the emotional fortitude to do this on my own? I know that on a practical level, there are things that others can do for me or with me. Like it or not, emotionally I’m on my own. This is my emotional journey. It’s difficult for others to understand the fear I have of losing whatever mobility I have gained. The difference between having to use a wheelchair and choosing to use a wheelchair is infinite.

Perhaps the greatest help others can offer is to understand how my physical decline impacts on my ability to get around outside my own home. Knowing that I can unexpectedly and without warning lose my mobility makes staying with or visiting other people really challenging Few people I know have toilets that are accessible to wheelchairs, or have entrances without steps, or beds that I can transfer from into a wheelchair, assuming I have the wheelchair with me (if I lose my mobility while I’m using crutches, I can crawl, that’s it. I need someone to lift me onto the toilet, the bed …) So I need to have a strategy in place to deal with this, and people around me who understand the complexities of personal cares – toileting especially.

However, I’m not completely on my own. Initially I thought that I had to provide all the answers for logistical issues. I’ve learned that I can raise an issue or a risk, discuss it with others and work together. I don’t have to solve on my own all the problems that come with a sudden loss of mobility.

Maintaining social networks becomes more difficult with physical barriers, time spent preventing contractures and pressure sores, and managing pain and spasm from reduced movement, and fatigue. It can be hard maintaining friendships and relationships. I’m not withdrawing, I’m struggling, so others will have to carry more of the work required to keep friendships going. Understand that I’ll be more reactive, rather than proactive.

Quality of life can be reduced. One of my greatest pleasures is independently wheeling down to the local beach then walking down the ramp and onto the sand. The beach is not accessible by wheelchair. I’m still working on that, but for now, I take every opportunity to get outside. I may seem unwilling to join in activities, understand that I am prioritising the things that make my heart sing, especially the things that I may not be able to do with less mobility.

So what happened when my mobility was again threatened?

It was a distressing and frightening experience.

But having beaten it once, and having learnt from that experience I patiently went to work. I had everything to gain and nothing to lose if I spent the rest of the night getting movement back.

It took about an hour and a half of progressive stretching to reach a point where I could stand on my right leg. I used a walking frame to take most of my weight then gradually increased the pressure on my right leg. I asked my husband to massage the quad, trying to stimulate the nerves to that crucial muscle. I sat from time to time so I could recruit my quad in a seated position then again tried to stimulate it in standing. I stretched my long calf muscle, another trick I’ve learned is when I stretch that muscle the quad will try to work. I did some squats to work the quad. Then I walked barefoot round the house using the walking frame. As my quad became more reliable I switched to crutches. Then I put on my shoes to walk with the Odstock.

By far the hardest thing to do though, was to go back to bed – if I slept would my leg again fail me when I woke? Eventually I reasoned that I couldn’t stand for the rest of my life, doh! At some point you just have to surrender to common sense.

Same logic when it came to getting out of bed… I wanted to stay in there in case there was a repeat of what happened at midnight. Stupid right? Just as I’m not going to spend the rest of my life standing, I’m not going to spend the rest of my life in bed.

So I tell myself, be happy, don’t worry; I can’t stop the physical decline, I can’t predict it, but I have guardianship over my own life.

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Futureproofing – Part 1
I began writing these posts for my children. I wanted to share with them the things that we weren’t likely to talk about over dinner, or at family gatherings or just hanging out. I wanted to tell them how special they are to me, how essential to who I am, how they have shaped my life and to thank them for letting me into their lives as they grow and change.

So much has happened in the five years that I started writing. Weddings and grandchildren; better management of my pain and continued improvements in my walking and gait; shifting to a home near a beach in preparation for my husband’s looming retirement. But most of all, I have discovered a growing determination to look time squarely in the eye and to fight its ravages – I will not go gently “into that good night”.*

Futureproofing has been on my mind for a couple of years as I get older. Where to retire and when to relocate? How to support family, and how to ensure never to become a burden in any way to family? How to maintain my upper body strength and minimise muscle and joint disintegration? How to keep improving my walking gait? What does quality of life mean to me? What will make my heart sing?To sum up, how to live a full and satisfying and even exciting life?

“Old age should burn and rave at close of day;
Rage, rage against the dying of the light.” – Dylan Thomas*

First thing to tackle has been to find a place where I can take my stand. No more coping with Wellington’s cold winters. I didn’t think I could manage one more. The decision to move was difficult. We have a son and daughter law with two little ones in Wellington, a daughter and son in law with a toddler and another one on the way, and a son and daughter in law in Auckland.

What was important in deciding where to live? It had to have warm summers, be near a beach, be accessible to family, a place to tempt grandchildren, a place to welcome and draw people to, a place to retire to. And, we realised, a place that my husband could work from until he retired. I wasn’t worried about proximity to medical services. My instincts tell me not to make it a problem. It’s on my radar, but barely.

Our kids were right to advise us not to decide to live somewhere because it was close to one or other of them – the world is mobile and our kids may not stay in one place. We have moved our kids backwards and forwards between cities as work dictated.

So here we are on the Hibiscus Coast. Where people come on holiday. Thirty minutes from the CBD (don’t drive in peak hour traffic) yet a world away in culture and stress… And house prices. We up-sized, got a better quality house, more land and we are 600 metres from a fabulous and mostly empty beach. For pretty much the same price as the home we left in Wellington.

Oh, how I love this beach! In summer I wheel down in my wheelchair with my crutches clipped on twice a day. At low tide so I can walk the length of the beach. That’s my rehab and therapy. At other times I wheel down then walk into the surf and just stand there as the waves sweep over my thighs and higher. My heart sings! The locals have come to know that when they see my wheelchair at the top of the boat ramp I am somewhere on the beach.

The locals, my neighbours, are all here for the same reason we are. They love the beach. All summer long people wander along the roads that lead down to the beach wearing only their swimming togs with a beach towel slung over their neck, or round their waist. Some carry a body board or surf board or paddle board. My husband is not alone in pulling his kayak on its trolley along the 600 metres to the beach. People of all ages and all unselfconscious. Oldies with their wrinkled saggy bodies, teenage boys with rippling abs, girls in bikinis, men with their bellies hanging over their board shorts, walking in groups or singly. Greetings and waves to friends and neighbours. It’s wonderful. Acceptance all round.

It’s like going back in time. We know our neighbours. I call them if I need something while my husband is away. They ask me for favours. I have good friends here.

My daughter and son in law come here in the weekend to recharge. We play with our grand daughter. She loves it here too. Our neighbour lets us use her swimming pool. Our grand daughter goes down the road to the play area either sitting on my lap in the wheelchair or pushing herself on her trike, speeding down the slope.

When our son’s family stays with us everyone piles in too, bodies in every room.

As I write this I can hear the ocean, my friend’s dog barking, some birds singing. I can see the palm fronds rippling in the slightest of breezes, huge hibiscus blossoms, tropical greenery. I can feel the tiny edge to the temperature that tells me that Autumn is coming.

This place is everything I wanted as I contemplate a future to look forward to.

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Life is short. We’re only here once. You never know what’s around the corner. Life is for living. Make the most of every day. The universe conspires in your favour, look for the signs. When ine door closes, another opens.

So many cliches. Yet right now, the universe is conspiring in my favour and I am taking what seems an obvious, if outrageous, action.

I have spent a good part of this year worrying about surgery. Waiting months to know the outcome of earlier surgery – was it successful? Then as that resolved itself satisfactorily, I faced the uncertain prospect of surgery on my wrists. Very minor surgery for which my spinal cord injury turns into a major exercise in managing aftercare.  Plus, I have to be fully recovered for my son’s wedding, plus I want to be of some use when my first grandchild is born inNovember.

The uncertainty of the timing of this

surgery, was driving me nuts so I took control. I took control. I asked the surgeon if there might be a four week window that would allow me and my husband to go to Europe! He agreed this was reasonable. I had control over my life again.

I am no longer focussing on surgery and trying to second guess how it will impact on the things I want to do. Instead I am working on an itinerary that will take us to Prague, then Tuscany, and Istanbul. My husband and I asked ourselves, which are the places we would regret not seeing. There’s a long list, but these came up top.

I’ve already missed the wedding of a young friend because I’ve been waiting for issues around surgery to resolve themselves. But things don’t resolve themselves. We resolve them.

It’s been a hectic week or two.

Carpe diem. We leave in less than ten days!

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After writing the post about the link between managing spasm and improving walking, I continued thinking about how important it is to never, never give up. No matter the obstacles, challenges, frustrations, fears never give up. I had this image in my head of enormous blocks that are seemingly unsurmountable …

Never, Never Give Up

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I was inspired and uplifted when I heard someone special to me say (I paraphrase) how wonderful it is for someone to see you as you really are, yet love you anyway.

I have been looking for some way of expressing this:

I had arrived at this after experimenting with:

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My mantra “determination, persistence and commitment” would be just words if it weren’t for The Dictator. The Dictator shouts and yells, he snarls and barks, he pushes and shoves, he cracks the whip. The Dictator gets me to the gym every day, he makes me go where I’m scared to go, he makes me stretch and exercise when I’d rather go to bed or watch TV. The Dictator calls me names and relentlessly keeps me moving forward. The Dictator denies temptation, keeps the troops in line, roots out subversion and keeps me on the straight and narrow. Yet The Dictator is not abusive and does not swear or curse. The Dictator says “DO IT” and I do.

What happens if the Dictator crumbles? If the voice cracks or is lost? Then the troops slow down, lose direction, become confused. Life becomes harder, the world darker.

That’s when I need inspiration from outside. Someone to listen is best, or maybe following the faint memory of routine brings me into contact with someone and I rediscover my self.

The world can be hostile when your mobility is impaired. Simple things can seem impossible. Anxiety and panic can immobilise you. Negative thoughts can creep in and overwhelm the optimistic, confident self.

I need some means of rediscovering the inner voice, the voice that gives the orders, pulls the troops back into line. I listen for an echo or a whisper “Do it”, or fake the orders until they become real, and the Dictator returns. I need the voice that says “DO IT”. I need The Dictator within.

That’s why routine is so important, particularly going to the gym. There, not only do I experience all the benefits of exercise and socialising, but that’s where The Dictator’s voice is loudest. Exercises that take me to the edge of what I can safely do, that test and recruit physical weaknesses, and that make my brain work out harder than my body, need the voice that says “DO IT”. It’s a challenging environment but it’s also a safe and happy place. That’s often where I’ll find My Dictator.

The Dictator

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My gallery of original artwork is now continually updated as a page. This page can be found as a tab at the very top of the page above the banner, along with “About Me” and “about Spinal Cord Injuries” (since February 2012). It’s much more iinteresting than either of these. Please check it out.

Here is my artwork posted til then:

Welcome to my gallery of original artwork, calligrams. The word calligram means “beautiful writing”, probably because the letters and words are arranged into an image. It is sometimes called concrete poetry. I prefer to describe it as visual poetry. From most recent:

Calligram – The Beginning of Love

Calligram – Reach For THe Sky

Calligram – Music Breaks My Heart

Calligram – Music Sets Fire To Your Soul

Calligram – Music Sets My Heart On Fire

Calligram – Life Is A Gift

I Am What I Think And Do

Calligram – Just Another Dream

Just Another Dream

Calligram – I Dream Therefore I Am:

I Am What I Think And Do

Calligram – Lost in the music:

Calligram – One more for Valentine’s Day:

Valentine’s Rose

Calligrams – For Valentine Day:

Heart On Fire

For Valentine Day

What Is Love

Calligram – The Sweet Sleep – Anastheasia

Sweet Sleep – Anastheasia

Calligram – Adversity, Forging Steel In Great Heat

A Christmas Calligram

Calligram – Blood Diamond

Calligram – Blow Your Own Trumpet

Calligram – Bubbles

Calligram – Let Your Heart Sing

Calligram – Reach High, Dream Deep

Calligrams – Destiny
The next two are meant to be viewed together as one work:

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