Independent Spirit — Trapped.

In my mind, I am a fully-functioning, normal, independent and oh-so-sexy, confident woman.

The sad truth is that: I’m not.  I’m not.  I’m not.

The agonizing reality is that I have a beautiful, free, soaring, independent spirit which is cruelly trapped and confined inside of a pathetically, needy, dependent body. *Scream*

A vicious punch-in-the-face moment this week, confirmed it, once again.

I woke up to the quiet murmurings of my care assistants in the room next door.  It was still pitch dark.  But, it’s midwinter and even my usual 6 AM get-up-time is still dark, and cold.  Somehow I just sensed that it was still too early. 

The radio was on. 

Sometime during the long night I had asked my care assistant to put it on because I couldn’t sleep.  The enforced silence of the dark night, for hours on end, is not only physically uncomfortable when you cannot move a muscle but, psychologically, sometimes it is close to intolerable.  Often, I just need a distraction from my ridiculously overactive mind.  Believe me, the pleasures of mental agility are much over-stated by those not exclusively dependent upon them.  The radio can act as a perfect diversion from my soul-destroying-negative thoughts in the dead of the night.

I must have fallen asleep again, thankfully.

I craned my neck and my digital-alarm-clock-radio confirmed that there was still an hour to go before my care assistants were expected to get me up. 

I was immediately annoyed and irritated that they had woken me up because now I would have to lie there and wait for them.  That sixty minutes can be excruciating.  It’s not like you lose the desire to stretch, yawn, throw your legs over the side of the bed, sit, stretch some more, rub your eyes and then get up.  It’s just that when the urge comes over you there is nothing – nothing – that you can do.

So, I lay focusing on the radio, listening to my care assistants getting themselves ready, fighting my frustration of not being able to get up into my wheelchair and waited.  Waited.  Waited.

At last, the door opened.  I breathed a deep sigh of relief as I heard my care assistants coming into my room.

If the prospect of being transferred into a wheelchair lifts one’s spirit, it has to say something about the loneliness and gloom of the night’s journey.

I turned my head to greet my care assistants.  I immediately noticed that one of the ladies was not in uniform but rather in the same smart clothes she had arrived in the day before.  Oh no!

What’s wrong?  I asked her anxiously.

She knelt down next to my bed to explain. 

Her nanny, who was allegedly taking care of her nine-month-old baby, had called earlier to say that she must meet her at the police station at 7 AM and take her baby.  She needed to leave immediately.

I begged: Oh my God, please don’t do this to me.  Please.  Please.  Please.

I desperately pleaded some more:  How am I going to get up?  I need to get onto the commode for my bowel routine and shower.  Then, I need to get onto my wheelchair.  There is no way only one lady will manage to do all that, on her own, especially with the severe spasms my body is experiencing at present.

She said: I know.  And I’m sorry.  I really am.  But, I have to go.

And she left.

Feeling mortified, I broke down, crying hysterically.

I was angry.  Not at her.  Okay, yes, I was mad at her – dammit!

Although, deep down, I understood. 

If it had been my baby, I would have done exactly the same thing.  No doubt.

I was still enraged but, more so, by my entire dismal situation.

I don’t know when last I felt such despair – so vulnerable, weak and helpless.  I cannot put down on this page my exact thoughts, for fear of hurting the ones I care about most.

I had this overwhelming need to tell someone, to share my pain, my dilemma.  I asked my remaining care assistant to help me call Roy.  I cried as I related the story to him.  I could hear his concern as he tried to comfort me.  I knew that there was nothing he could really do but, I was just grateful to have had his ear at that ridiculously early hour.

Immediately after the call I was overcome with guilt.  Why had I burdened him with this, knowing that he was so far away and that he would be worried about me?

I ran through my long list of friends in my mind.  Who could I call to come and help?

Everybody has a family, a husband or partner, children, work, responsibilities.  I know that any of them would drop everything and come at a moment’s notice but, I just couldn’t call.  Something – pride, dignity, guilt, self-doubt – I don’t know – prevented me from reaching out in my time of need.

Helplessness is humiliating.  Even, in a passing crisis.  Imagine or recall some occasion when you have fallen down or required assistance from strangers or even family or friends.  How embarrassing!  Right?

So, I just lay there and sobbed.  And sobbed.  And sobbed.

The tears, stinging my cheeks and flooding my ears seemed to have no end, causing me to wonder if my brain had perhaps melted and the fluids were escaping through my eyes.

I felt so abandoned.  Just imagine not being able to get up in the morning, go to the loo or take a shower.

Like Tony Judt once said:  Being paralysed from the neck down is like being confined to a cold, unforgiving iron suit.  I’m motionless like a modern-day mummy, alone in my corporeal prison feeling like nobody really understands.

Eventually, I pulled myself together, knowing that I have faced this challenge before, and far worse, and I coped.  You can do it again, Tracy.

Living alone and basically being at the mercy of care assistants whose first priority cannot really be me, is often daunting but I wouldn’t have it any other way, unless, of course, a drop-dead-gorgeous man with sexy legs came to my rescue.

Anyway, I put my mind, what was left of it after the melting episode, into proactive mode and made one phone call to my Dad.  Speak of humiliating!

He was here within 45 minutes to just help my care assistant to lift me.  I was got up, dressed, hair and makeup done.  The bits in-between are incommunicable.

I put on my brave face and started making some phone calls.  By lunchtime I had a new care assistant.  I’m not sure if she’s the right person as she is a little overwhelmed at present but, at least, I have two pairs of hands today.  If she runs away, that’s another day’s problem.

One day at a time.  That’s the only way I know how to deal with this.

About Tracy Todd

Although I need a wheelchair to get around, it is most certainly NOT what defines my essence as a woman. I am also a mother, teacher, wannabe writer and an inspirational speaker with a positive outlook on life.
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38 Responses to Independent Spirit — Trapped.

  1. Flutter says:

    Hi Tracy, you are an inspiration to me every single day. As usual you tackle lifes obstacles with humilty, grace, intelligence and strenght! Power to you lady! You rock!

  2. Hi Tracy,

    Sorry to be so late getting here, but I couldn’t leave without telling you once again how inspiring you are to me and what a gifted writer you are. Your story – although so personal – feels universal in the way that you tell it.

    I hope things are working out well with your new care assistant and that you are feeling well today.

  3. Andy Smith says:

    Hello Tracy,

    Firstly, you continue to be an inspiration to me and I look forward to seeing you when I do go somewhere near your area.

    I know exactly how you feel as I experience the same frustration as you do many times — so much so that when it happens now I’ll try and calm my mind and when I am at peace I will then concentrate on what all my alternatives are.

    In February of this year I decided to go for a stroll in a little nature reserve all by myself in my electric wheelchair. I have always been more daring and adventurous thing I should probably be but that is just how I am and so going up a little hill I hit a bump which dislodged my cool drink bottle from its resting place which upset my centre of gravity and I flipped over backwards hitting my head on the gravel and came to rest next to my chair. I screamed until I could no longer scream but nobody heard me. I then listened as intently as I could to hear if there were any hikers anywhere in the area but heard nothing except the distant barking of a dog. Fortunately I was under a tree and not exposed to the harsh sun and also my hat ended up between my head and the gravel once I had come to rest which provided a small bit of a cushion.

    What was I to do? I lay for about two hours watching the ants starting to eat me in the hopes that I would hear somebody along the trail that I had taken. I wondered how long it would take before I was missed at home. Eventually I realised that I had better do something and found that I could just move my arm up a bit enough to move my hat and I then pushed with all my might to lift and turn my head back up the hill to see if I could see where my cellphone had landed. I could just see it and stretched on as far as I could but I was about 1 1/2 inches short of being able to touch it. (I have some shoulder movement and some biceps C5) I then used both arms to push on the gravel and then to push with one arm and pull with the other hand — I moved a millimetre closer to my phone. I kept doing this for about 20 minutes until eventually I could get a finger around the strap for my phone. I then pulled the strap towards me until I realised it was caught on my wheelchair which was above me on the hill so I brought the strap to my teeth and using both hands and my head pulled as hard as I could. The chair tumbled closer towards me but at least the phone was free. The wheelchair landed on its control and so both motors were going flat out 1 inch from my head.

    I had set up my phone so that it was easy to dial one emergency number without me having to look at the phone. The person got through to a difficulty in hearing me above the noise of the wheelchair but eventually got the message for him to get hold of my boys who knew where I was. 15 minutes later my eldest son came and picked me up. I had lost half the movement in my left arm and panicked. They took me to the hospital and performed an MRI and told me that with some cortezone the swelling on my nerves will subside and I should recover. After two days in hospital I was released with about 85% of my functionality back again and was told that the rest should come back within six weeks. About 90% came back.

    When I was just lying there for 2 1/2 hours are pretty much knew how you feel.

    At the end of May I was fishing with a friend and after three or four hours decided to try and cast as far as I could and in doing so managed to slip somehow and I tumbled out of my wheelchair into the cold dam. Just as my head went under the water I could see that my fall had been noticed and so while I lay in the water I just had to concentrate on being patient knowing that someone would soon come and help me — which they did. We all had a good laugh about it but while I was in the water like a helpless blob I pretty much knew how you feel.

    Being a man I don’t cry very much (except when my dad died and then I cried for a day) so I cannot comment on the therapeutic benefits of crying but for some reason myself and even more yourself have been called to bear this burden of helplessness a lot more then the rest of the world. When that happens I realise that there is nothing I can do and I have to wait until help comes.

    I have fallen out of my wheelchair far too many times and it has probably caused my condition to worsen over the years so I am trying to be more careful!

    Even fully able-bodied people are sometimes rendered helpless but not as often as what you are. Example the tragic situation when a man is held at gunpoint while his wife is being raped — you are not alone in this world of helplessness.

    What you do have is a beautiful mind and you can use that mind to give yourself peace and to relax and think about all possible solutions given the circumstances. You do have the most beautiful eyes (only judging by photographs I have seen) with which you can concentrate on all the beautiful things in the world.

    I am sorry about your condition as much as I am about my own but there’s nothing we can do about it. The situation will happen again but know that it is not only you. It happens to others as well.

    I have very much more to talk about that thing is that I have taken up enough of your time and I hope that you can get something out of my story.

    Look me up if you are ever in Pretoria before I get down to Nelspruit or whatever it is called now.

    Andy Smith
    C5 Quad

    PS: by the way, I do think that it would be a good idea if you use some sort of mechanisation in terms of a hoist so that one person can get you in and out of bed.

    • Tracy Todd says:

      Hi Andy – Wow. Thank you for sharing your story. I could literally feel every word you wrote. Scary stuff.
      You really gave me a new perspective on helplessness with your brilliant example of the man being held at gunpoint whilst his wife is being raped. Thank YOU. So true, I am NOT alone.
      I look forward to meeting you in person.

  4. J Dinsdale says:

    Dearest Tracy,

    I am so sorry that I haven’t been near a computer and thus be able to read your post earlier. I know that there would be nothing physical I could do to alleviate your distress, but knowing that someone, somewhere shares those emotions can help somewhat. The frustration, anger and desperation are well known to me and I understand the feelings you are experiencing.

    Reading the replies above, I can see that you are well loved by a lot of people. That love, even if they are faceless strangers, can help lift your spirits and I hope they did. By your responses they must have helped a little.

    I did like the way Mikey put a lot of thought into his comment and offered the advice he did. It is unfortunate that, even for me, they present problems in themselves. I cannot use a hoist and I have the use of my arms; the pain would just cause additional spasms and I would be jerking around like a toddler in one of those suspended things they play in!

    You know that you are a very special person to me. You are my hero, my aspiration and my mentor. I cannot imaging how hard it can be for you and I completely understand that, although the body is not able, the mind keeps willing and sometimes cannot accept the disability. However, the disability cannot take away who you are, especially with a will as strong as yours. I know that sometimes the will falters and stalls, but your inner strength is one of the many parts of your beauty and reignites that indomitable will of yours.

    The feeling you put into your words inspires more than a few people. Tracy, you have a wonderful gift and the manner in which you share your grief only inspires us more. Stay strong, stay positive and stay the same (personality) and hopefully, in the not too distant future medicine will be able to rid you of your ‘iron suit’ and it will be replaced by something more fitting for such a beautiful and sensual woman.

    • Tracy Todd says:

      J — Thank you for your kind words. I do know that you truly understand the feelings I am experiencing on a daily basis.
      I always feel overwhelmed by the wonderful responses I get to my blog posts and yes, it most certainly always lifts my spirits.
      I do agree that things like hoists often present more problems. I have tried some alternative options and they became more of a struggle. But, Mikey definitely made me think more deeply about my situation and I need a dependable backup plan – fast.
      I also feel a deep connection with you. Perhaps it’s also knowing what you have been through in your own life. Your blog posts always have a profound effect on me. I pray that medicine will eventually be able to free both of us, sooner than later.
      Stay strong.

  5. J Dinsdale says:

    Dearest Tracy,

    I am so sorry that I haven’t been near a computer and thus be able to read your post earlier. I know that there would be nothing physical I could do to alleviate your distress, but knowing that someone, somewhere shares those emotions can help somewhat. The frustration, anger and desperation are well known to me and I understand the feelings you are experiencing.

    Reading the replies above, I can see that you are well loved by a lot of people. That love, even if they are faceless strangers, can help lift your spirits and I hope they did. By your responses they must have helped a little.

    I did like the way Mikey put a lot of thought into his comment and offered the advice he did. It is unfortunate that, even for me, they present problems in themselves. I cannot use a hoist and I have the use of my arms; the pain would just cause additional spasms and I would be jerking around like a toddler in one of those suspended things they play in!

    You know that you are a very special person to me. You are my hero, my aspiration and my mentor. I cannot imaging how hard it can be for you and I completely understand that, although the body is not able, the mind keeps willing and sometimes cannot accept the disability. However, the disability cannot take away who you are, especially with a will as strong as yours. I know that sometimes the will falters and stalls, but your inner strength is one of the many parts of your beauty and reignites that indomitable will of yours.

    The feeling you put into your words inspires more than a few people. Tracy, you have a wonderful gift and the manner in which you share your grief only inspires us more. Stay strong, stay positive and stay the same (personality) and hopefully, in the not too distant future medicine will be able to rid you of your ‘iron suit’ will be replaced by something more fitting for such a beautiful and sensual woman.

  6. I decided to step away and think carefully before responding to this, Tracy. One thing I can’t escape from is the difference between the way men and women tend (it’s not always true, but often) to respond to crises. You wrote and offered this so we could read and share your feelings. I (being male) immediately wanted to help “fix” your problem, as opposed to empathizing with your feelings. That’s why it’s all right to call Dad. It’s probably his first gut response also. It makes him feel manly, fulfilled and purposeful to be called upon in this way, as it would me or most men, if we were near enough to come.

    Yes, I do understand your terror and frustration, as best an active-trunked person could. Really, I do. I DO! All your feelings, including the anger you didn’t express, are completely valid But – still a man, so here goes. Please, forgive me:

    1,) You know this can happen. You need to have back-up plans in place – alternate caregivers, neighbors, Dad, etc.
    2.) You need some inexpensive, low-tech items to aid your carers, such as –
    A. A slide board. Looks like a surfboard with handles all around. They come with straps, foot stops, and you can use pillows behind the neck and knees if there are curvature issues. The carer uses the sheet beneath you to pull one half, then the other of your body onto the board. It’s designed to immobilize and transport unconscious persons safely, and only one transporter is needed.
    B. Some sort of gurney, just a massage-table sized cot on wheels, adjustable in height. Carer pulls slide board onto it once you are secure. You can be sponge-bathed and have hair washed while supine on the table. One side of gurney can be lowered sufficiently to complete toilet routine.
    C. Shower Chair. These are lightweight plastic, on wheels, with toilet seat. Single carer pivots you upright with your legs hanging over at the edge of the bed using lift belt, then placing one of their legs between yours and hugging you close under your arms, carer does a lift/pivot to place you in chair where entire toilet and shower routine can be completed.
    D. Lift Belt. Adjustable strap attached to carer’s waist, brought around whatever part of you needs lifting. You can use more than one at a time.

    I’m not a big guy. (5’6″/150lbs.) I always did lifts and transfers alone (unless the client was combative), and 8-12 of my people were unable to assist, similar to your status except that they also couldn’t communicate by words. With anyone weighing up to 175 lbs, the method was C + D. I used A + B on bigger and taller people. I take it your carers are younger than I was. If they are using proper technique and equipment, one should be enough.

    Your feelings are what they are, Tracy, but feelings aren’t facts. You are able to be as alluring and commanding in person as you have been on paper. It isn’t based on movement, and it transcends flesh. Cleopatra would have considered bathing herself to be a moral outrage, and her servants got no pay at all. Perhaps you need to access more of your “inner princess”, and allow yourself to believe you DESERVE body-servants. You are nice to them and you pay them, so you are already morally way ahead of most throughout history who’ve had them.

    • Tracy Todd says:

      Michael – I cannot agree with you more. Men and women do approach crises in completely different manners but, we all manage to get through to the other side somehow in our own unique way.
      I love the practical manner in which most men attack a problem. I think women have much to learn in this regard. (I think this topic could open a huge conversation and perhaps one of us, or both, should explore it on our respective blogs and get the conversation going. What do you think?)
      My Dad is my hero, and I know that as much as I need him, he needs me too.

      Thank you for all your practical advice. Some of it I have tried and some of it not yet and perhaps it is time to revisit these simple techniques. I will not go into a long explanation here about all the complications I experience surrounding all these suggestions. Just know, that I am deeply grateful to you, for taking the time to write me. Your comments always challenge me but, more importantly, inspire, motivate and encourage me. And for that, I am truly grateful.
      As for my care assistants, yes, I think I do deserve them but, to be honest, I’m not always nice to them and I definitely feel that I should pay them far more – if only I could find the money from somewhere.
      In the meantime, one day at a time.
      Thank you for your love, care and support from across the ocean. I feel you. Love you

  7. Ronna says:

    Whether you scream or whisper, Tracy, it is beautiful, worthy, tender, strong, and most of all…true. And whether you tell of hope or despair, your truth inspires and changes me. Thank you for telling it; for living it – even in immeasurably, incomprehensibly painful ways.

    I’m grateful.

    • Tracy Todd says:

      Ronna – this open-throated scream was inspired by your words on your blog. You can never imagine how much you teach me and how much influence you have in my life. Thank YOU for always telling the truth. I am grateful.

  8. jacqui says:

    Dear Tracy I feel for you, the loneliness, desperation, the feeling of helplessness, if you ever need help pls call me Im more than willing-be strong we admire you for not only your courage but also your vulnerabilty. Stay strong xx

    • Tracy Todd says:

      Jacqui – I really appreciate your willingness. It means more to me than words can say. You already play a huge role in my life without you even being aware of it. Thank YOU.

  9. Terry says:

    Oh Tracy. If you could hear the things I have been moaning about over the past couple of days – I am ashamed. Once again your writing has had a dramatic effect on me as it does to everyone else. Thank you.

    • Tracy Todd says:

      Terry — don’t beat yourself up too much. It’s human nature to complain. Sometimes I think that is what we are best at. But, I think it’s good, to be stopped in our tracks from time to time and just be reminded to count our blessings. Love you

  10. Darling Tracy, there are no words to describe your determination and bravery – unless, like you, and they are in your position, there is nobody that can feel your frustrations like you do. – NOBODY!!! I, too, lie awake most nights and know how frustrating that is, but I can move and you can’t. Just keep you beautiful smile (behind the tears if necessary) and don’t ever give up for all you have done thus far will be meaningless if you do. God Bless my angel. Aunty Dolores.xxoxx

  11. dougal says:

    * S i g h * ………..platitudes are completely worthless at times like this. All I can say is that you are an amazingly courageous woman with a massive heart and incredible spirit ….. you inspire me every time I think about you.
    D

    • Tracy Todd says:

      Dougal – platitudes in life, in general, are worthless because each of us has a unique, and different, reality to deal with each and every day. But, by sharing our stories, like you and I, we can only hope to connect to the very heart of our readers and hopefully offer some sort of inspiration through the words on the page. Each of us can make a small difference. Remember, we are all interdependent beings despite the fact that we insist on trying to constantly be independent. 🙂

  12. Jane Littlewood says:

    So so sorry Tracy, I cannot begin to imagine how hard it must be but my heart aches for you. You are an amazing, strong person with a brilliant mind and sense of humour – wish things were different for you. Hang in there, hopefully there will be good days soon. Thinking of you – Jane

    • Tracy Todd says:

      Thank you for your kind words, Jane.
      That’s the beauty of life, isn’t it, that good days always come around again? That’s what keeps me going. 🙂

  13. Hi Tracy
    My son had a similar experience a few days ago with a new carer and it was terrifying for him – the helplessness can be overwhelming. As a father and being more than 10 hours away from him at the time, I experienced only a fraction of what you and he endure every day – your perseverance and spirit is a blessing and a lesson to us all.
    All my love, Pete

    • Tracy Todd says:

      Pete – have heard all about your son from your wife, Mandy. I know and understand how difficult the journey as a quadriplegic really is, but, with the love, care and support of family members like you, your son will shine and continue to make you proud. I know that you are far away, at present, and that you feel helpless when he really needs you but, never underestimate the power of the love and the support you are able to offer him. Besides, the greatest gift that you are giving him is his “independence” by forcing him to cope with all these daily challenges. And he can. And he will.
      Thank you for being such a great Dad. The world needs many more men like you.
      Take care. Stay strong. Be positive.

  14. Jo Bernier says:

    Tracy, I found your blog several months ago.. and never posted before. I am a 56 year old women single/ divorced with no children… at this point of my life I work full time and am active but not as much as I should be.. I live in San Diego near the beach.. I say these things just to sort of introduce myself… I look after my Mother who is 85 every weekend as I have sisters who do the errands etc…She is very active and walks 2 miles everyday .. I don’t know why I chose tonight to write to you… I guess I want you to know I feel connected to you in a way that I find I can not be silent … I also feel silly to say… you are not alone when I am here so far away… I love your writing and fid you so articulate and thoughtful… anyhow… I am here thinking of you… joanne

    • Tracy Todd says:

      Hi Jo — I’m very glad to “meet” you. Thank you for taking the time to read my blog and for making the effort to leave me such a thoughtful, kind comment. I really do appreciate it. Thanks for thinking of me and sending your love across the ocean – I feel it! 🙂

  15. souldipper says:

    Tracy, after having managed a retirement residence for seniors and knowing the foul situations that can arise with staffing, my heart physically aches after reading this. I literally had a pain in my chest! It is almost impossible to hear about a vulnerable human being experiencing abandonment. It is unacceptable, in this Canadian’s not-so-humble opinion.

    I hope you can arrange to have an “emergency” person close by – some one who would be willing to show up for any future emergency until other caregivers can arrive. And I would keep that strategy under my hat in case workers felt the arrangement was for their convenience.

    Times like this, I know I was born too soon – they haven’t invented teleporting yet!!

    • Tracy Todd says:

      Souldipper – thanks for feeling my pain and anguish. That means more to me than anything.
      As for the teleporting, hang tight, with the way technology is going, anything is possible. You are already on my teleporting list. 😉
      PS the emergency person is a good idea and one that has worked well for me in the past. But, circumstances change and financially things are really tough. To be honest, I don’t think that I pay my care assistants enough and it eats at me every single day of my life. Their worth to me is immeasurable. I just know that if I could afford to pay them a lot more, I would have more piece of mind and hopefully they would think twice before giving up on me.

      • souldipper says:

        Tracy, I don’t know if this is helpful or not. It’s about management…something that I enjoyed for about 40 years. This is nagging to be shared. If it’s useful to you, good.

        In management courses that we studied in business, we looked at the best ways of compensating employees. We learned that a pay raise lifts the spirit of an employee, but only for a limited period of time. It wears off fairly quickly.

        A negative employee will be negative regardless of what you pay or give them.

        The factors that fulfill and keep an employee (one who is sincere, honest and willing) are those with give them a sense of having a share in their job. Give them a chance to feel they have purpose and can exercise mastery in executing that job. In other words, ask their opinion, get their input and ideas and have the patience to explain why they can or cannot be incorporated. The educational benefits are grand, but even more, the employee feels respected and valued.

        Good employees can usually see whether or not an employer is able to pay well. If there appears to be a gap between the generosity of the employer and what seems to be flippantly purchased or spent, the employee feels undervalued.

        While caregivers ought to be paid better than professional athletes, because of the heart-work that is involved, the fact is they are not. A person going into the field is well aware of this. Plus a lot of unskilled people head for this role.

        With that comes some baggage from which the employer needs protection.

        Because of this, there is a rule in the care-giving world that I was engaged in: There is to be no exchange (outside of pay) of material goods or possessions either way. Even at Christmas time, our staff was not to give or receive gifts. It creates an entitlement attitude that upsets the balance. The policy exists in hopes of deterring any thoughts of manipulating a person who is vulnerable and dependent.

        This policy was very difficult to maintain due to the love that builds between client and care-giver, but if the relationship turns a bit sour, it is a god-send. It is a signed agreement and protects the client/employer.

        It takes more time and effort to work with empowered employees, but the long-term gains are worth it. An empowered employee will do cartwheels around one who is not. While empowering employees, however, I found it took some care to maintain the balance of discretionary responsibility. i.e. – if the employee thinks it’s okay to make decisions outside of delegated areas, that needs to be cleared up right away.

        If any of this is helpful, Tracy, that is good. This is my strong suit in care-giving – sharing insights that may help to lift the confidence of the spirit and soul.

  16. Deborah says:

    Hi, Tracy

    It is so hard to imagine what things must be like for you, but your writing zings off the page, if you see what I mean, and so we readers can understand a little more and gain a little more insight with each post that you write. I agree with Danette about your beautiful smile (the most beautiful smiles, like yours, being a combination of inner and outer beauty).

  17. Danette says:

    Tracy, this was so hard to read. I think about you often, your courage and sense of humor always come to mind. Not anything else. I know about helplessness, I recently had surgery and had care assistants for everything. It was so hard as I am a private person and the humilation and having to depend on people was harder than any pain I could experience. Many times I wanted to smack those helpers but then who would help me move or use the bathroom?
    You continue to awe me and inspire despite what life hurls at you. One step and then another (even mind steps count) gets you where you’re going. You’ve arrived at so many places already and so many people are so proud of your spirit. Smile, for yours is a beautiful one. Wish I could have helped you, it would have been my honor.

    Danette

    • Tracy Todd says:

      Danette – your comment made me giggle. There are many times that I have wanted to smack my helpers out of sheer frustration. It’s incredibly difficult to have to explain exactly what I want and how want it done 24/7. Patience is not something that comes naturally to me but I have had to learn it. I spend a lot of time biting my lip.

      Thank you for your lovely kind words. I appreciate it!

  18. Bill Rogers says:

    Fully-functioning? No.
    Normal? Who is?
    Independent? Not many of us are entirely independent.
    Oh-so-sexy? I think so.
    Confident? Most of the time, possibly more so than many.
    Woman? 100%

    Chin up, Tracy, despite your personal challenges you’re still way ahead of the mean. Hugs & strongs.

  19. Sue says:

    You probably won’t like me for saying this, but I can’t help thinking of the QASA homes I have visited, and the remarkable people who live there. Some of them have spirits as strong and free as yours, and I think there is some benefit to living communally – e.g. you would never have to deal with this very difficult situation that you had with private care assistants. In the QASA homes there are always assistants but I do believe one has to wait one’s turn in the morning and evening, which can’t be fun. The homes also have to generate their own income as far as possible (which I think is great). The ones I visited only accepted certain people for residency. From what I could gather they basically screen out those who have succumbed to depression, in addition to being paralysed. So you can understand the calibre of people who live there… I found it very inspiring to meet them.

    I just think that living in a private situation must leave you feeling seriously isolated and possibly more abnormal than you actually are. Modern medicine is a real mixed blessing, isn’t it? A hundered years ago, would you have been able to live as you do? But how wonderful that you can, today! Your destiny is a very challening one, but I am sure your soul must have accepted the challenge a very long time ago. You’re an incredibly special person Tracy.

    • Tracy Todd says:

      Hi Sue – I have also visited, and been instrumental in helping a few quadriplegics getting accepted into Quadriplegic Independent Living Homes so, I know many of the amazing people living in these abodes.
      Living on my own was my choice after my divorce and is one that I do not regret, not even after last week’s challenge. I am so fortunate to have the love, care and support of my family, friends and entire community. There are a multitude of people I could call in any crisis and I know that I could count on them but, once again, I chose not to. As I said in my blog post: Helplessness is humiliating. I know that most people would struggle to understand that because society automatically views me as helpless but, I do not. (I think that I will have to write a blog post about this).
      I thank God for modern medicine and technology every single day, for without it I would surely have no life at all or probably be dead. I thank God for the past 13 years, to spend with my family and be with my son, despite being paralyzed from the neck down.

  20. Bill Watson says:

    If you called I would have come – but a trip from the American heartland is more than 45 minutes from your dad’s house. I cannot begin to imagine your situation or plight. I wish I were drop dead gorgeous with magnificent sexy legs and more than a few years younger – the temptation would be more than I could handle. With love – Bill

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