Feeds:
Posts
Comments

Posts Tagged ‘Inspiration’

 

“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.

Advertisements

Read Full Post »

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!

Read Full Post »

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

Read Full Post »

My daughter was married on Saturday. 

Some highlights:

* As we waited for my daughter and her father, my husband, to arrive I was surrounded by our family. Next to me were our sons, and behind me were my daughter-in-law (wise, warm, an essential part of my life for so many reasons) and my future daughter-in-law (with a radiant smile that embraces and spreads joy). How blessed to have such a family. They make me complete.  In this moment I know my cup brims over.

* The man about to marry my daughter watched her slowly walk toward him and as he smiled it seemed as if, for him, this was his entire world. He took her hands in his, looked into her eyes, and was moved to tears. In this moment I loved him more.

* As they exchanged their vows the sun came out and it was as if the universe smiled.

* The mother of my new son-in-law gave a wonderful speech. She was funny, witty, and, best of all, her words embraced her daughter-in-law.

* In mid sentence my son-in-law said “my wife”, chuckled, paused and smiled as he again said “my wife”. 

* The first dance together as husband and wife was spectacular. It was a mix of romance, drama, fun and action, and moved easily into everyone joining them on the dance floor. Even me! Young and old rocked on together. Everyone stayed on the dance floor for hours.

* An atmosphere of happiness and joy pervaded the ceremony and celebration. It was tangible and touched everyone. The high spirits, emotions and energy of this couple lifted me up and made a magical celebration for everyone. They dismissed every potential stress, and their calm and focus on what was truly important soothed me, and I laughed and shared their joy.

But the moment I most remember is at home, minutes before we left. I stepped into the living room and saw my daughter,  a bride. In that moment, every memory I have of my daughter flashed before me and merged into this vision of beauty. I saw the baby lying asleep on my chest as we lay on the couch in the afternoon sun. I saw the toddler jumping off the stairs into a bean bag. I saw the little girl who wriggled into a space beside me to be as close as possible as I lay immobilised in a tilt bed in the spinal unit. I felt the arms of the little girl who placed them around my neck as she sat as close as possible as we wheeled on the prone trolley months later. I saw the little girl who never saw the wheelchair I sat in, only seeing her mother whose lap she wanted to sit in. I saw the ballerina, beautifully serene and beaming as she waited to dance as a unicorn. I saw the little girl who looked after her crippled mother and elderly grandmother when we flew to Melbourne – lifting luggage the size of own little body off the carousel, and making us cups of tea in bed. I saw the little girl arriving at Wellington international airport having flown alone from Sydney. I saw the girl who rode horses ten times her size. I saw the tomboy who climbed trees and was fearless. I saw the public speaker, confident in every situation. I saw the athlete who ran, cycled, swam. I saw the young woman who has seen so much of the world, determined, overcoming challenges. I saw the young woman who took me on road trips to Mt Maunganui. I saw my brave, loving, kind, strong daughter. I saw my best friend. I saw a goddess standing before me. I saw my wonderful daughter on the happiest day of her life … and I burst into tears, my heart so full love for her, and joy that she loves and is loved.

I saw my friend and daughter who had included me in her wedding preparations. Who the evening before had included me, with her bridesmaids, in drinking cosmos, eating pizza, and watching Moulin Rouge, laughing and reminiscing. My generous daughter who opened our home to her friends and family on the morning of her wedding, to share her happiness this day. Her happiness was infectious and as we all scrambled to get ready at the last minute, we laughed as we found ourselves  sharing space, three or four people in every room.

As we waited for the bride, I watched the groom and thought of my son who two years before had stood waiting for his bride. I remembered his nervousness. I remembered the smile and joy as he watched her come toward him. I remembered the happiness that she reawakened in him when they found each other. I turned to my future daughter-in-law and she smiled at me, reassuring me. Sisters, brothers, wives, husbands, friends and more. I, and my grown up children, are truly fortunate to know love and be part of loving, caring, growing families.

“There is no greater happiness than to love and to be loved in return”

Read Full Post »

As my daughter’s wedding approaches, and I see the care with which she and her fiancé choose their music, I am reminded how music is directly connected to our emotions.

Music can stir men to battle, soothe a baby to sleep, arouse passion, unite us in patriotism, make us dance, make us happy, make us sad, recall mamories, send people into trances, help us focus, stimulate dreams, motivate, send us to another time or place, build images … It seems there is nothing that music cannot do. It invades our souls, plays with our emotions, weaving through our lives leaving marks, and marking milestones.

I have also been exploring images for music. I’ve loved every moment of it. Here are some of the results:

Music, happy pieces of heart

Music Sets My Heart On Fire

Music Sets Fire To My Soul

Music Is A Whirlwind of Emotions

And a calligram I have published before, but is relevant in this context:

Lost In The Music

Read Full Post »

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes” – Marcel Proust

This post is dedicated to my daughter who “got” Proust before she was twenty. I couldn’t get much further than the first sentence of “Swann’s Way” the first of seven volumes of “In Search Of Lost Time” (although, in my defence, the sentence was three pages long.)

I didn’t manage to read Proust’s novel(s) in English, let alone French, but with the help of my daughter I am better able than otherwise to enjoy and appreciate his (and her) reflections. As some wit remarked “they would rather visit demented relatives than read Proust”. I understand the sentiment and I am very lucky to have had some of his themes explained to me and discussed in contexts I understand.

Although memory, especially involuntary memory, is the main theme of Proust’s work, it is the idea that if we understand our life experiences and know how they affect us and change us, and we can use those changes to transform ourselves, that has me punching the air saying “yes!”

Now, I didn’t explain that very well, so I was really pleased to find this quote from Proust, “The real voyage of discovery consists not in seeking new landscapes, but in having new eyes”.

I can apply that to so many of my experiences, from the traumatic to the seemingly trivial. And i think I can see how Proust spoke to my daughter. She was four when I damaged my spinal cord, and she adapted her life around whatever I could offer her. (As did my sons, and they too would probably “get” Proust if they ever decided to read his work.)

Some of my real voyages of discovery:

One of the most important lessons I have ever learned was after I lost my mobility – don’t let the things you can’t do stop you from doing the things you can do.

When my twin sons were babies I learnt that housework doesn’t matter. It will always be there, but your babies will grow up. (Or I needed to sleep more than I needed to vacuum.)

I learned that if I walked at the same pace as my toddlers we could all see the caterpillar in the grass.

Teenagers are extraordinarily receptive to exploring all sorts of ideas, from politics to ethics to science … They like to share their discoveries, and I learned to listen.

I learned that dreams come true, but my dream of walking has required determination, persistence and commitment. And creative thinking, by me or by others.

I have lots of art projects on the go all the time. I have learned that this is a good thing because something I read or hear or see adds to my experience and even the most subtle change can enlighten or inspire me to bring something more or different to what I am working on.

Writing focuses and clarifies my thinking, and often helps me look at issues from new perspectives.

I find myself wondering more and more how many opportunities I miss to learn about myself and others. This is not a bad thing. My mind is opening.

By expressing myself in art, no matter how skilled I am, I am translating to another medium an aspect of who I am and what I see. Art makes it easier to have new eyes.

I’ve also learned that those few words defining a real voyage of discovery have provoked me to think carefully about what “having new eyes” really means.

The Real Voyage of Discovery

Read Full Post »

I was looking at our living room this morning and my heart sank. I’ve been having a lot of fun messing around with art and drawing apps for my iPad, as well as designing some wedding stationary for my daughter and her fiancee, and I’ve been scattering bits of paper and “stuff” all over the floor. And the room intended for all this wonderful creative work is even messier. What to do? Where to start?

One step at a time.

It’s easy to feel overwhelmed by the enormity of a task, or unsure where to start. Sometimes the whole picture seems too big to know where to begin to look. Sometimes it seems easier just not to start.

“A journey of a thousand miles begins with one step” – Lao-Tzu

Nearly nineteen years ago I began a journey that literally began with one step. I was about to be discharged from the Spinal Injuries Unit in a wheelchair, unable to even stand. I had a little movement in my right leg but not enough to use functionally. I was unable to even pull myself to standing. Yet one afternoon in the gym, challenged by the other patients, I did just that. The physios didn’t think it possible, but said if I could stand they would place me between the parallel bars with a callipur on my left leg and help me walk. And I did. I pulled myself to standing for a few seconds before collapsing. True to their word, the physios put my left leg in a full length callipur and placed me beteween the bars. The callipur kept my left leg rigid, my arms took the rest of my weight and I lifted my right leg to take my very first step.

Some say that Lao-Tzu’s words are best translated as beginning your journey with the ground under your feet. That’s pretty much what I did, and still do. I focus on the step that I am taking now. I’m not thinking about whether I’m improving or whether I’ll be able to throw one or both crutches away. I’m thinking about the best possible quality of step that I can take now.

Action begins this very moment. Procrastination is the enemy. Pick up the messy papers and sort into folders. Do the exercises and stretches that keep me mobile. Go to the gym and focus on my body alignment. Enjoy creating the current artwork. And live in each moment that is part of every journey.

Read Full Post »

Older Posts »