Willothewisp

Author Archive

Dear Visitor,

Our main web site at www.willothewisp.org has been shut down in order to allow us to put in a new content management system database and refresh the site design to Web2.0+ standards complete with RSS functionality. We hope to have things back up and running with a basic service by tomorrow evening, the rest of the site will be built out over the next week.
In the meantime this blog site will be running as normal.

Love from us all at Willothewisp.org

No one, least of all the medical profession (there is an oxymoron if ever I heard one) should be in any doubt that head injuries cause changes in mood and behaviour, this much is known and well documented, so why is the medical profession in such denial that neurological surgery also causes depression ? Surgery is little more than (hopefully) carefully controlled violence to a victim patient, so why do they refuse to make the connection? I have this theory that Doctors have fallen so totally in love with their own glamour that they no longer associate anything they do with any negative connotation.

Following my head injury last year, caused by a thoughtless British tourist here in Maastricht, our family doctor (Tyjardia) and I took steps to head off post-traumatic depression from the actual injury. I believe at that time we were successful, but later when I had the surgery to remove the blood clot from my brain we could not employ the same techniques because they could have caused problems with my blood clotting (Pt) times during surgery. After the surgery we could not employ the full force of methods for similar reasons, but I think we managed enough to just about hold a major depressive event back, for a while.

About ten weeks ago I started to feel it, like that moment in the garden when the last hot summer day is done and you smell the change in the air. Something in me was definitely changing. I remembered all the lessons I had learnt ten years ago and brought all the little coping mechanisms into play, but I knew there was a big dark wolf out there somewhere, I could feel it pacing around looking for any little gap in my defences.

Then my Jasper died, my friend and confidant of eighteen years, the first face I saw in the morning and frequently the last at night, my quiet pillar of strength and reassurance. Instantly those coping mechanisms meant nothing any more, all blown away as his heart stopped beating. The crashing sounds I heard inside my head were those of the wolf smashing through the walls of my Id, and suddenly it was there, sharp fangs of despair barred. In the face of it I even willingly turned my head to allow it an easier bite into my throat, depression begets depression it seems. At that moment if it had come to merely take my life I would have let it do so willingly, and that is a terrifying thing to know about yourself. Such is the all consuming power of depression that I would have willingly left the love of my life, my children, my parents, all the things that should bind me so strongly to life because suddenly they meant so very little to me. Those who have never been deep in depression might think this selfish and self indulgent behaviour, but it is not, it is all consuming despair. You do not mean it to hurt others, you would be willing to let it only hurt you, but when that wolf strikes others are invariably traumatised by what they witness. In the face of depression there are no words, no deeds that can magically turn off the mental destruction you are wreaking on yourself, there is no point in saying “Come on, for your children’s sake/ your wife’s sake/etc” because this is all about the inside of your head, not the external world and when all is said and done you cannot live for the external until you are able to live for the internal.

There is a double injustice to head injury/surgery induced depression as we do not just become depressed. We become irritable, sometimes even aggressive, we have to endure panic attacks so powerful it can induces asthma and heart attacks. As we try to deal with all these emotional and cognitive changes and struggle to control our feelings, frustration is often the result. The frustration becomes so strong that I felt like I was “losing my mind.” My language skills have taken a dive and my self confidence too as a result. I used to be so fluent and fluid when signing but suddenly I was finding myself desperately trying to remember how to say what was in my head, unable to coordinate my hands and confusing the hell out of my deaf son. If talking and signing which previously has been effortless for me had become like walking through ankle deep mud then writing was now like wading through thigh deep mud and still is (It has taken me EIGHT hours so far to write this short piece).

Last week, frustrated and angry with myself I decided to try rebooting my operating system, also known as modified narcolepsy. For three days and nights I slept a deep, herb induced sleep and woke feeling a little better. Not ready to  return fully to the world but at least able to sit and write a little, play with the children, tend to the dogs and spend some intimate time with Nina. I think it is going to be like last time, feeling my way forward by small degrees until one day I find myself back in the daylight world. I miss my friends, I miss also my online friends but – and this seems like a terrible thing to say – I do not have the will to speak to them. I conserve my energies for Nina and the children and hope that in a little while something in the balance of chemicals in my brain will tip back to the optimum and once again my internal sunrise will lift the gloom.

Until then I do my best to cope living within my dark universe, drawing what light I can from my external universe. I am exceptionally lucky in that dimension and I wish I could show those who provide the light there just how much they mean to me.

From behind the black wolf; Judith van der Roos

Jumbled thoughts………

Ever Thine, Ever Mine

This morning I was sitting on the floor in our library playing with Mariaske and picking out books at random when I happened upon this passage in a biography of Beethoven. It is a letter written by Beethoven to his love, his soul mate the one love he’ll always love. He states that no one’s heart will be truer to hers other than his own, that only he will love her always and forever. He regrets being so far from her but mere distance doesn’t keep his thoughts away, in those he is always with her. He only feels happy, only complete when with her and in her arms, his soul only belongs there. Writing to her means that he is that much closer to her. He talks about one day being with her solely when their mutual love with be complete. When he asks her to be calm is he trying to calm her or himself I wonder. She is his love, she is his very life, and he asks her to never misjudge…never believe false tales and rumors…of the one man who loves her so unconditionally. He is ever hers as she is ever his…they are ever one.

“ Good morning, on July 7

Though still in bed, my thoughts go out to you, my Immortal Beloved, now and then joyfully, then sadly, waiting to learn whether or not fate will hear us – I can live only wholly with you or not at all – Yes, I am resolved to wander so long away from you until I can fly to your arms and say that I am really at home with you, and can send my soul enwrapped in you into the land of spirits – Yes, unhappily it must be so – You will be the more contained since you know my fidelity to you. No one else can ever possess my heart – never – never – Oh God, why must one be parted from one whom one so loves. And yet my life in V is now a wretched life – Your love makes me at once the happiest and the unhappiest of men – At my age I need a steady, quiet life – can that be so in our connection? My angel, I have just been told that the mailcoach goes every day – therefore I must close at once so that you may receive the letter at once – Be calm, only by a calm consideration of our existence can we achieve our purpose to live together – Be calm – love me – today – yesterday – what tearful longings for you – you – you – my life – my all – farewell. Oh continue to love me – never misjudge the most faithful heart of your beloved.

ever thine
ever mine
ever ours”

They were separated by distance and duty, isolated and alone but their love and devotion would prevail

I cried.

I cried because ………………………..I felt sorry for myself. Self pity is so distasteful so it is not very nice to let it show, but it is worse when one really had no right or reason to feel it. Blind as well as deaf this year I have felt, at times very isolated and alone, and I also feel very guilty about that, because through it all I have had so much attention lavished on me and it is churlish of me to be so self indulgent.

Self doubt is a terrible thing, a rather pathetic and pitiful thing too, but right now I am riddled with it. I hate it, and I hate myself also. I know that I am loved as wonderfully as Beethoven loved his “Immortal Beloved”, if not more so and yet I feel unworthy of that love and unsure what I bring to our partnership at this time. I know bring all the negative things, deafness, blindness, baroness and burden, but just what do I bring that is positive?

All I have done this year is live in fear of the darkness, I have not been brave, I just clung onto what little sanity I could find as though it were the last straw in the ocean that I was drowning in. If you only knew just how frightened I have been, if you only knew how many times I came close to actually wetting myself in fright, how I have wanted to dive into our big linen cupboard and hide from the world

- - – - I am ashamed at myself.

I have survived this year through the help and very, very good grace of those around me, all of them, because each one has given me something of my life back this year……

Nina, My Beethoven; “Look for the good in all things” my mother always says, and in this horrid year Nina has in so many ways blossomed. Last weekend watching her as we readied ourselves for our trip to my Parents for Sinterklaas, I watched as she herded, cajoled, blackmailed and manipulated us all into readiness, she is now the mistress of our family, the ring master. I could feel the strength flowing off her and renewing me from one moment to the next. She has spent the weekend moving between my rather extended family members doing the diplomatic tricks that allow our sometimes rather disparate genetic pool to function as well as it does, deftly stepping between family frictions to smooth and calm. Despite having more and more responsibilities piled onto her as my abilities declined she has absorbed them and just kept going, all the while still working and doing her important job.

Maybe here is the other side to the bad karma I had been experiencing and if that is the case then it has not been such a bad year after all. I always knew she was a person of unique strength and passion, but now perhaps everyone else has had the chance to see it as well.

Author: Judith.

 

Sex, summer and sensuality

 

As I meander through my paradise I think of Primavera, that beautiful painting by Botticelli of spring. Venus, precious and beautiful Venus is standing in the centre of the picture, set slightly back from the other figures. The Charites, also called Three Graces, are elegantly dancing a rondel. The garden of Venus, goddess of love, is guarded on the left by Mercury. The myrtle plant that surrounds her is a plant that represents sexual desire, marriage, and child bearing. From the right, Zephyrus, the god of the winds, is forcefully pushing his way in, in pursuit of the nearly naked nymph Chloris clad only in a diaphanous gown. Chloris gave her name to chloriphil, the substance that gives all plants their green colour. Next to her walks Flora, the goddess of spring, who is scattering flowers. Flora tells how she was once the nymph Chloris herself, and breathes out flowers as she does so. Aroused to a terrible fiery passion by her beauty, Zephyr, the god of the wind, follows Chloris and forcefully takes her as his wife, raping her. Regretting his violence, he transforms her into Flora. He makes his gift of contrition to her a beautiful garden in which eternal spring reigns. The painting actually depicts the two separate moments in the narrative, the erotic pursuit of Chloris by Zephyr and her subsequent transformation into Flora. She is beautiful with a rich flower garland on her head and delicate spring blooms erupting from her dress, arms full of flowers. Chloris/Flora, nymph, lover, mother, giver of life, force of nature. I would love to be Flora.

One summer when I was in my very early teens I was in my grandmother’s sprawling garden. As we wondered arm in arm down her rose tunnel her lovely, lyrical, aging voice spoke a verse I had never heard before…..

“Spring-time and Venus come, And Venus’ boy, the winged harbinger, steps on before, And hard on Zephyr’s foot-prints Mother Flora, Sprinkling the ways before them, filleth all, With colours and with odours excellent.”

She lent down to me and told me that some of her best times with lovers had been in gardens. My Oma was famous for the long string of male and female lovers she had had in her life. Amidst stories of some of her lovers I found I was seduced by her garden, it was the first time but not the last, I have been a prolific lover of gardens ever since. In my time I have flitted from one garden to the next enjoying every brief liaison, and in some I have even indulged my own passions and lusts and given myself over freely to the botanical and the human delights with equal abandon.

But this night I was wondering through my garden as I often do on summer nights, naked. I had shrugged my nightshirt off my shoulders as I left the hardness of wooden deck and stepped onto the cool grass. As my feet touched down on the soft, cool carpet of grass the first caress of the garden came and touched my feet, tickling little teases of grass between my toes, cool and soothing. Away from the house lights I was now blind but it did not matter, I know my garden so well I do not need my now failing eye sight, I fancied I could almost navigate by smell alone. Turn left, ah yes, there is the clematis along the Roman wall, turn right the first burst of early Honeysuckle by the first border. I turn right to walk alongside the big stone and flint wall and my guide dog Sissi though will not let me be out alone and walks past me brushing my leg just enough to tell me; “I am here, I am watching, call if you need me” as she wanders off to take her own pleasure in the garden’s scents. Imagine if I had a dog’s nose, how wondrous my garden would seem then. I could smell every tiny little bud, every mote of soil. I wondered if she could smell ladybirds, do caterpillars have a smell ? Does she see the smells of my garden as a haze of intermixing colours in the air? One thing was certain, she must be able to smell the wild garlic I sow in the borders to keep pests at bay.

The air of the night wrapped itself about my naked body pushing away the fog of the warm indoors and breathing freshness over every part of me with a kiss as sexy as any lovers kiss. Just as with a lover’s kiss this one also swelled my breasts and firmed my nipples sending an electric tickle down into my belly. As I walked by memory I marvelled at how well I could move about despite not being able to see. Under foot I could tell where I was on the grass paths by the feel under my feet and by reaching out I could feel by the plants location where I was placed. Fox gloves came to my hands, their tall bell like structures filling my hands so I had to be alongside the wall. I love to feel for the separate little fox bells in my fingers and feel their delicate little structure.

Then I turned towards the long wildflower grass and stepped lightly into the patch and enjoyed the caressing of thigh high grasses and wild flowers. As I pushed through the light sea of grasses as the lush smell of them washed about me, and all over my thighs delicate thin fingers tested and teased their way up. I bent forward and pushed my hands down into the gently rolling surf of grass and meadow flowers, the little strands and stalks between my fingers, crisp tight heads of grasses popping past me. The swaying heads played against my breasts, naughty little fingers reaching up to tickle and tease until I felt the familiar warmth of milk starting to let down inside them. It feels like grass and meadow flowers are growing out of my legs, as though I am becoming Flora, how wonderful would that be, to breath out sapphire cornflower heads and golden Marigolds, sowing my garden afresh with each exhalation

Then Sissi has circled back to me and pushed her muzzle into my right hand, the message for me to look about and pay attention. I looked.

I cannot see detail in such darkness any more but I can see shapes and coming towards me siloetted against the light from the house was a very familiar shape indeed. My very own Chloris clad in a diaphanous gown of fine white linen. I could make out the roll of her hips, that gentle swaying saunter she has that exudes sensuous sexuality. Wading through the floral surf she reached out and put her hands onto my hips and pulled us together. I smiled to myself as I realised her scent was “Flowers’ a vivid mix of Jasmine, sweet pea and rose. I reached under the edge of her nightshirt and traced her nakedness underneath with my fingers, from the smoothness of her thighs, across the curves of her waist and across the flatness of her belly. Exactly a year before that same belly had been great with child, from womb to home our baby now slept soundly while we reconnected with each other and with the nature in our garden.

I un-did the buttons on her shirt and pushed it off her shoulders. As it dropped to form a white pool amid the darkness of the grass about her feet I stepped back . Chloris naked before me. She took my arm and we walked the night time paths of our garden past Amethyst, Summer Sorbet, Wisteria and Akebia. Come sunrise the amazing dance of life in the garden would continue. The reproductive structures of the flowers and plants form pistils. The stigma at the top of the pistil would go back to catching pollen so that sperm from the pollen will travel down this tube to the ovules. The ovules, or eggs, in the ovary are then fertilized, in short, sex.

Gardens are definitely sex made manifest, wonderful fertility and pulsing with life. So one night this summer take your lover out into a garden, walk naked together and really feel the magical dance that goes on all around you. Close your eyes and let it soak through your senses to warm and arouse you and then…………………….celebrate life !

Author: Judith.

Last week I experienced terror, paralyzing, heart squeezing terror for the first time in my life. I was so frightened I became rooted and frozen and as panic gripped me I could feel my heart rate leap from it’s normal 70beats a minute to 200, then carry on climbing to nearly 300. The arteries in my neck swelled and I was struggling to keep breathing as my hands and feet tingled and I rapidly lost all sensation in them. My guide dog Sissi had more sense than I did as she pulled me over to a seat, where relieved I slumped down. For an hour I struggled to pull my mind together and for most of it I failed. I was finally able to make my hands move and pull my PDA and message Nina for help.

I have a new respect for all those people out there who have to endure panic attacks, if I had to endure that on a regular basis I would seriously consider killing myself because I do not know how I could live with them.

So how did I come to this state of affairs?

A couple of months ago while out in Maastricht shopping with my little boy he was tripped and fell over. While I bent down to help him a young English tourist, offended that her path was obstructed, came up behind me and pushed me into the cornerstone of a building cutting my forehead open and knocking me out (she then went on to stand on my son’s hand breaking his finger). I missed the resulting drama as the young woman was detained by passers by and paramedics were called to attend to my son and I. I woke a few hours later in hospital and I think I witnessed Nina’s own moment of terror wash away as I came to.

While I spent a couple of days in hospital under observation it appeared that I had escaped with just a few stitches and concussion, but they were not able to perform a brain scan on me due to the metal plates that were used to replace sections of bone in my skull from a previous injury some years before,. Then two weeks ago I found I was having trouble focusing while reading and Nina had noticed me getting uncharacteristically clumsy late in the evenings so I was packed off to the opticians. The optician spent a lot of time on my eye test and as the time wore on she seemed increasingly confused, something was definitely amiss. By the time I got back home my doctor, Tyjardia, was waiting for me to tell me I was off to see her neurologist friend ASAP the very next day. More tests at the hospital revealed some serious issues . The neurologist was a nice fellow and very thorough in his clinical examination of me. As he delivered his findings (verbally because I was not able to bring the page in front of me into focus enough to read it) it came as a big shock to realize that my ability to see in low light and darkness had all but gone. As Tyjardia signed the results to me it felt like someone was pouring ice water ran down my spine.

Tyjardia and my neurologist arranged for treatment therapies to first of all arrest any further damage and then reverse, hopefully, the damage that has already been done. So twice a week I am travelling to Amsterdam for hyperbaric oxygen therapy. For those of you not familiar with HBOT it is basically a pressurized chamber into which they pump oxygen and which the pressure then forces deep into the tissues of the body. This then aids the body in expelling cellular and metabolic waste and repairing damage. The hospital I attend has an eight person chamber which I can find myself sharing with people who have various conditions, like multiple sclerosis, motor neuron disease, diabetic ulcers, spinal and brain damage, macular degeneration, all manner of conditions. Last Thursday I found myself in there with a middle aged gentlemen who was obviously partially sighted and rather claustrophobic. As the nurse with us was busy with a lady who was not at all well I kept the gentlemen company. Between his near blindness and my deafness we spent so much time trying to communicate that I was able to take his mind off the confines of the chamber. In the end we did work out how to communicate and that was the point at which my the germ of my terror was born.

Joop, that was his name, had been a managing director of a publishing company in Zwolle, then one day on his way home he had a little accident, and I really do mean a little accident. He tripped over his own feet and fell. The blow to his head was minor, it did not even leave a bruise. A few days later he woke with a terrible headache and blurred vision, his doctor sent him for a scan but a problem with the hospital scanner delayed his scan for a day and by the time they discovered a small, slow intracranial bleed he was already going blind. What threw my mind into a spiral of panic was the fact that his eyesight had continued to deteriorate ever since and the parallels with mine were enough to set up a train of thought in my mind that started off down the tracks at a slow chug before rapidly building up speed towards it’s destination of Panicsville. Then we were out of the chamber and I kept my appointment with the neurologist to get the results of my tests from two days previously. The news was not great, my low light/night vision was in an even worse state that previously thought, and securing my eye sight was going to be a little more “protracted” than had been estimated. Then he delivered the coup-de-cras, my driving license would have to be suspended in view of the poor state of my eyes, because as of that moment I was able to be registered as partially sighted. My day had started off badly and was continuing it’s downward plunge, in fact I now felt I was in free fall. In fact I do not drive much, most of my daily routine is done on foot or bicycle, but when you have a disability anything that gives you independence and self reliance takes on a special meaning so it’s loss was a significant blow.

It had been a long day, it was getting late and by the time the tram from the hospital neared the station at Duivendrecht it was starting to get dark. Sissi and I had just stepped off the tram when

W H A M ! I walked straight into a sign post, face first. I simply had not seen it and marched straight into it. Stunned by the blow I staggered about for a few moments before heading into the station while Sissi fretted about me. I then almost fell flat on my face when I failed to see a step that I should have seen. Finally within the brightly lit station concourse I was able to function better but my head was still ringing from my careless idiocy. I went to purchase my ticket at the machine. I stood at the machine and looked at the screen, immediately panic swept up through me. I felt my face flush, my hands shook and the world suddenly seemed to be a very different place, a very, very scary place. The screens on the machines are large, easily 40cm across, the words on them big and bold, the colors are primary and high contrast yet I could scarcely believe that all I could see was a blur of blue and yellow, the normally big letters were unreadable, letters that were normally six centimeters large were now a blurr. Horrified that I could not even see this my heart was now racing away and I was fighting for breath. I value my independence, I have never let my deafness or the limitations my hips impose upon me take any thing away from my life, but now I could not even read the big screen of the ticket machine. If I could not do that how long before I could not do anything for myself !

I felt Sissi tugging at her harness as she tried to draw me over to a seat. My jelly like legs were slow to respond but in the end I made to the bench. All around me the world was spinning, inside my chest a vice was squeezing my frantically fluttering heart. I was convinced my heart was going to implode with the strain and in that moment all I could think of was not seeing our children. I would not see Mariaske take her first steps, I would not see the children go to high school, or graduate university. I would not see Nina’s face when she looked on our first grandchild. I would go through their lives deaf and blind to them all, worse I would be a burden in their lives.

I was terrified, rigid with it

For an hour I sat unable to move. In the end Sissi’s effort to attract my attention worked as she gently gnawed on my wrist. Slowly the acute panic started to melt away a little, enough to allow me, with violently shaking hands, to struggle through my bag to find my PDA. I asked the lady in the next seat to help me, telling her I was deaf and a little blind. I asked her to help me send a message. She got up and for a moment I thought she was going to help, but she just walked off. I asked the next person to sit to help. The young dark skinned man was wonderful and I am ashamed to say I cannot recall his name. A note pad appeared in front of me and he simple wrote “How?” on it large enough for me to see. I asked him to send a message on my PDA and send it to the contact list labeled “Help”. Technically good with electronics as the young tend to be he entered my message “Paniek aanval. Duivendrecht. Hulp, Judith” and hit send to all.

A few minutes later there was a gentle vibrating in my hands. I was able to just about read the message with the screen as big as it would go “Hulp komt spoedig. Wacht. Nina XXXXXX”. Over the next few minutes message after message came in as everyone on my help list responded. I waited and the young man waited with me even though I am sure he had a train to catch, he even brought me a hot chocolate. After some twenty minutes Sissi came to attention and I looked to see what had gotten her interest. Coming towards us across the concourse was the unmistakable and very dignified form of Jan Kuipers, my Grandmother’s ever so devoted driver. I could not see his face but I could never mistake him for anyone else.

Grandmother was in residence at the house on the Singelgracht so Nina had asked her if she could help and she had dispatched Jan to rescue me. I don’t think I have ever been so happy to “see” anyone in my life. The young man who had waited with me had missed his train, but as he had been so kind as to help me Jan said he would take him to his destination after dropping me at Singelgracht. I spend some time with Oma and she assured the family I was safe and well and once I had recovered and Jan had returned I was taken to Amsterdam Centraal and put onto the train home. Nina met me at Maastricht and we took a slow walk home though the midnight streets. I do not think I had ever felt like such a failure, a simple trip to Amsterdam had resulted in the family having to be mobilized to rescue me because I had lost control of myself and panicked. Now I was clinging onto Nina for dear life as I walked because all I could see of those very familiar streets around me were points of light and vague outlines. I felt utterly useless.

I can only imagine just how corrosive constant panic attacks are to those who suffer them most days of their lives. I think I have always understood the effect that they have on people in the wider sense but until now I have never realized just how far they reach into your being, your feelings of self-worth and eat away at you. I am extremely fortunate in having a family who are thoughtful, compassionate and empathic, but goodness knows what life is like for those people who cannot draw on those closest to them to help with their panic attacks.

My eyesight will improve with time I am told. Though it may never be what it once was I will probably see our children grow up and I will see my love’s shinning face in my life for many years to come. Until it does improve I know I am going to be worrying.

Author: Judith