Willothewisp

Posts Tagged ‘Hilke’

“And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.”

From the moment Judith went into hospital Nicky (8) and Hilke (9) were constantly on at me not to let her have any surgery until they were there when she was woken up afterwards. I have to confess that perhaps I did not pay as much attention at first as I should, wrapped up as I was in my own worries about Judith, but the increasingly difficult behaviour of my kids eventually forced me to take notice. So while I set about trapping six of the neighbourhood cats they had set to roaming the house and cleaning the whipped cream off the kitchen floor, units, walls and ceiling I spoke with the kids while trying not to scream at them. Having spent the last eleven years living at close quarters with first one then two hearing impaired people I am a little surprised that it has given me both an insight and at the same time left me somewhat insensitive to them and their world, but sometimes the rush of life can blind any of us.

After Judith’s last experience of waking from surgery the children had later asked their mother what made it so horrid and frightening for her. They were confused as they had been told by all the adults around them that their mother would be fine, that she was in “good hands” and yet they had seen what they had seen and were therefore confused. Eventually they asked her and Judith had told them that she hated it so much because the first thing she felt as she started to wake was that she was falling, plunging down at great speed and without any control. This was not just a physical feeling, but she felt like she was falling in her heart as well. It is a legacy of the destruction wrought to her hearing and balance centres twelve years ago of course. When that hammer smashed into her skull it destroyed a great deal.

When we go through a change in the state of consciousness our sense of hearing is the last thing to go and the first thing to come back as we go and so it provides some sort of anchor to our senses but, just what do you experience when that sense is as well totally gone, and layered on top is compromised vision ?

The answer it appears is that you feel like you are falling, falling a very long way. I am rather ashamed that it took my children to highlight this and demand to be with their mother as she woke so that maybe they could in some metaphorical way catch her. I spoke with Nonke, the child psychologist of our little group and she thought that given Nicky’s extreme sensitivity to Judith’s problem following the encounter with the English tourist that it would be a good idea to do just as they were asking. So then we contacted the nurses and doctors looking after her and “wake-up day” was carefully planned for when the children could be there.

Thirty hours after the surgery she was unhooked from ICU and taken to the neurology ward where she was brought up from the induced coma with Hilke and Nicholas either side of her clinging onto a hand each. Movies and TV always get it so wrong in their portrayals of waking from a coma. The heroine, hair and make up all perfect, flutter their eyelids and gracefully wake up. It is all very clean, very lady like and utterly false. Back in the real world there were naso-gastric tubes, central-lines, breathing tubes, drains and pressure sensors springing from her partially shaved head like some StarTrek cyborg. Waking up can be anything but pretty and dignified as the person chokes, coughs or vomits, sometimes waking up only to go straight into shock. No it is definitely not as shown on TV.

We had prepared the kids carefully to focus just on their mother not on what else went on around them. Then the agent to reverse the effects of the muscle relaxants was injected into the central IV line. As she started to wake and fight the ET tube it was swiftly removed. Normally at this point the patient would be talked to, told where they are and what is happening and about to happen in order to reduce the waking distress, but of course when you are deaf you have to be left to wake into confusion, disorientation and panic. Nicky was signing onto the palm of her hand and it did appear to work to some degree. Hilke was caressing her face and neck in the same way we had caressed and tickled all our children to calm and reassure them all their lives, it made me smile inside to see it. Considering that on previous occasions I have seen Judith wake fighting and screaming and kick a doctor so hard he became a patient himself this was a peaceful waking by comparison.

Then she was there, Judith was back. She was groggy, sore and not firing on all cylinders but she was definitely back, the rest would come over the next few hours and days but I was happy and relieved that the big hurdle had been cleared.

Then it happened – my heart was pierced.

I watched as Nicky signed to his mother that he and Hilke had been there, to stop her “Falling”. I saw the look of recognition cross her drawn face as then in slow and painful movements Judith replied in sign;

“Don’t worry [precious ones]. You are MY wings, and when you have wings you cannot fall”.

My heart felt like it was bleeding as the message of this little exchange swept over me. From my eight year olds seeing what I had not, to the realisation that for all Judith’s apparent inner strength she was in fact so totally reliant on the infallible and imperfect people around her, to my total pride in the empathy shown by the children. This was the beauty of the small moment born of love that I had just witnessed. The rewards of parenting really do come from those unexpected small moments of revelation – and for me at that moment it was almost too much bear.

It was not until late that evening back at the house on the Singelgracht that I cried. I had been recounting the day’s events to Nonke, Tyjardia and my sister in law Carol when Tyjardia got up and dropped her iPod into the HiFi dock. As the music played I listened, LISTENED – a privilege that I still have. As I absorbed the words of the song I dissolved into tears as I remembered my day and seeing Judith’s wings in action, helping prevent her falling. I often try and imagine the fears that life would hold for me if I were deaf and my sight inefficient. I could manage a day, maybe two, but a week, a month, a year, ten years ? I believe I would be looking for my wings very quickly indeed as fears and terror slowly tried to squeeze the life out of my life. I could understand her fear of falling now and her words to the children.

So, my thanks to the wonderful English folk singer Kate Rusby for expressing what I am sure Judith would express if she were able to still enjoy music, as well as my thanks to my little bundles of character and contradiction commonly referred to as my children. Between you all you gave a perfect moment of happiness and pain, yin and yang.

Falling by Kate Rusby (1.9mb download)

You heard me shout hear me shout when no one’s about,
You find me where I can’t be seen.
I feel the air flowing for life’s in full swing,
So tell me why I cannot breathe.

And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.

Time moves on and time won’t be long,
In time I will fear not the day.
I’m endlessly knowing that you’ll never know
What I might want you to say.

And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.ings I’d be gone.

My back it aches, my body it breaks;
To grow my own wings I have tried.
And painless I came no aim must remain,
Alone and adrift on the tide

But here I’m still falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.

And here I’m still falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings

I hope Mevrouw Rusby will excuse my providing this track (albeit in much reduced quality). I urge you my dear readers to visit her web site, purchase (as I have done) her albums and help in some small way to promote her lovely talent

Kate Rusby on Amazon:
Amazon.de
Amazon.co.uk

Author: Nina

Nina and I had been out to collect Hilke from her physical therapy appointment. Hilke has spina bifida and every few weeks we have a physical therapist work with her to help her develop her walking and attend to any movement problems she has. It is a pretty tough couple of hours for her but productive so afterwards we told her she would not have to go back to school but instead we would do what she wanted to do for the afternoon. Her wish was to go shopping for Carnival things.

This is the Catholic area of our country and so here in Limberg each year we have four wonderful days where reality takes a back seat and we dive into Carnival. The show starts for real on Carnival Sunday, when brass bands march through the city streets. Later, stages are set up for live music and DJs. Meanwhile, fancy dress parties take place in neighborhoods throughout the city, each with music and entertainment laid on. Maastricht’s many bars stay open all night through carnival, and the crowds enjoy singing and dancing in the streets, most of them wearing their ‘pekskes’ (carnival costumes). The festival begins with hoisting the celebratory flag atop the flagpole and the sounds of cannon fire, along with the “greengrocerwoman.” The greengrocer woman is a symbol of luck and good fortune. The cannon is fired in the centre of town on the Vrijthof Square. This is the start of three glorious days of non-stop partying. An impressive parade marches jubilantly through town with participants stopping to chat, or eat, or shop, and then rejoining the festive throng. People are everywhere, in the streets and in the pubs, enjoying life! It is an amazing site to see the crowds watching the parade, as well as those participating in the march.

Maastricht Carnival Page here.

Each year I make up some costumes on my sewing machine and we let the children accessorize their outfits with carnival tat that they find on sale around the town this time of year. It has become one of their favorite times of year and about the only occasion I allow a loosening up the reins of sensible spending of their pocket money, we even top up their modest allowances with some extra gifts. With carnival just eighteen days away Hilke knew just what she wanted to do and for the next few hours she dragged Nina, Mariaske, Joost and I around looking at the Carnival costumes and accessories for sale in the various stores. The added wrinkle is that as far as she is concerned, herself and her guide dog Jos are one and therefore BOTH require suitable attire for Carnival !

After two hours Joost let us know it was time for his feed so we went for refreshments in the Bijenkorf restaurant. The Bijenkorf has a big café on the top floor with a nice lounge sitting area and good baby facilities. They offer a good range of fresh fruits and vegetables and snacks prepared and cooked from raw ingredients right in front of you so I like it there. Being lunch time it was busy but we got a place at one end of the big long communal tables. Sitting opposite us were some young women of the over made up, over coiffure type. Nails were long and perfect, dyed haired precise, make re-applied repeatedly, reading material was the glossy female magazine type full of stories of “Celebes”. One had a very low cut blouse and was clearly showing off her assets. They may have been worth showing off if they were so clearly not her breasts but those found in a silicon factory. She had a bad boob job with the lines of the implants clearly visible under her skin, the silly girl had gone for implants that were cheap and too big and the result was just plain silly, though she appeared unable to see it.

When I started to discreetly nurse Joost it did seem to attract a lot of attention from the young lady and after a few minutes she was leaning more on the table, almost pushing herself up and out – so to speak. It was a strange reaction and made me think that this woman was not entirely sure about the choices she had made about her body.

Hilke also noticed how the girl was watching. Hilke is a very bright little girl for a nine year old. She reads at the age of a sixteen year old and is very, very good observer of humanity. I suspect that growing up in a deaf household she has just got very adept at reading body language and mannerisms. She is also highly articulate and quick with her tongue, so when I saw her considering this woman so carefully I started to get uneasy…………………………………………………

Sitting next to me at the table Hilke went through some of her Carnival purchases with Nina while all the time keeping an eye on the busty young woman as she watched me nurse. Hilke was listing each one of her purchases and what she wanted to do with them when she suddenly paused. I knew instantly the moment had come, being a student of Hilke’s body language myself ! Speaking in what I was told later was a very strident voice she said;

“And look Mama” (“Mama” is Nina, I am “Moeder”) pointing to me breastfeeding “ REAL breasts here but over there………” pointing to the extensive bosom on display on the opposite side of the table “ CARNIVIAL BREASTS !” and then laughing very loudly at her own joke !

The whole restaurant stopped, everyone looked. The poor young woman was clearly horrified to have her pride and joy breasts mocked by a mere nine year old disabled girl and so she quickly moved to stuff her two puppies back down into her top and wrap her coat around her as she rather hurriedly departed.

We both looked to Hilke about to reprimand her for her somewhat brutal treatment of what must have been a rather unfortunately shallow young woman. She shrugged her shoulders and held up her hand palm open and said;

“Well they WERE like carnival breasts, No WAYYYYYYYY were they real !”.

Author: Judith.

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………

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.

 

 

This has been quite a year. It started with such promise in January but in February a crazy English tourist pushed Judith’s head into the cornerstone of a building, knocking her out and then as she proceeded to walk away she trod on my little boy breaking his fingers. It was an act of total callousness and utter disregard. Because of a head injury some years earlier Judith could not have a proper brain scan to check her for injury and it was only later as Judith’s vision started to develop problems and she had epileptic seizures that it was decided that the blow to her head had caused deeper injuries. While surgery was being planned she had a major seizure which necessitated an air lift to Amsterdam where she had emergency surgery. The offending blood clot was removed but the near total blindness that followed the last seizure remained. The neurosurgical team assured us that she would regain some or even most of her sight with a little time, but those months over the spring and summer were a long and painful wait. Judith never stopped trying to live and be what she loves being the most, a wife and mother, but it was a difficult time. I found I had teach myself not to watch over her all the time, but still I would. I spent ages looking out from the solar as she felt her way around her garden, tending to it just as she moved about the house still tending to all of us. Jobs that used to take her just minutes would take her an hour or two, but she never stopped trying. Our natural inclination was to take many of her duties away from her, but it was more important than ever for Judith to try and do the things she normally did, even when they resulted in failure. In these weeks she inflicted any number of accidents on herself. Cuts, burns and a great many bruises marked the trial and error progress that she made but always she pushed forward. I think at times like these it is often very easy to become focused on yourself, on your condition, but I don’t think she never lost perspective and her parenting beat meant that we never felt anything less than the centre of her attention.

In September the first ray of hope started to chip away at the blurred walls of her limited vision and slowly sight started returning. She was filled with excitement and happiness when she could once again see the children and days later was able to read as they signed to her. I cried my own eyes out that first night when we sat on our big bed and signed to each other once again, and I realised that I had my dearest friend back. Later as I stood in our bathroom washing I realized that I was being watched by her. She was sitting on our bed looking in on me and I cried again, happy that she was finding such joy in my nakedness. I had forgotten how beautifully reaffirming it was to have my lover appreciate me in all my glory.

Progress has been steady and now she can, with concentration, read a large text font, and walk in relative safety with an escort. Her vision is a very long way from being healed and we still have many concerns. It is clear that she has Quadrantanopsia – this is blindness in one quarter of the visual field. Like hemianopia in general, quadrantanopia is often homonymous; that is to say, low vision or blindness occurs in the same quadrant of each visual field. For example, Judith suffers lower (or inferior) homonymous quadrantanopia and is experiencing vision loss in the lower quadrant of the visual field of each eye. This is having two damaging effects, firstly she cannot see changes in the level of the pavement (sidewalk) under her feet and she cannot always detect people coming up to her. Sissi has had additional training to help her deal with the former problem and reduce the number of falls Judith takes. The second effect is that she does not see people approaching her until they suddenly appear right up close, it is an effect that she is finding very un nerving and it is this more than anything else that is eroding her self confidence. This steady loss of confidence has been behind her reluctance to go back to writing. Before the incident writing was a major outlet for her, a way of dealing with the limitations of total deafness, it is a vital outlet that has been choked off. I find myself missing her literary musings terribly. For now I try to comfort myself with the sight that she has regained and the pleasure she can once again take in our children.

In case you were wondering about the young English woman who caused all this pain she is still in prison and likely to remain there for a further eight months. She is still referring to the attack as “the accident”. She wrote a letter to us recently apologizing for the “accident”. I wrote back telling her I was not aware of any “accident” having taken place and that if she was in fact referring to her assault of my son and wife then she needed to acknowledge her responsibility for the attack before any parole hearing would consider her for release on license. If she is looking for forgiveness she will have to wait until Judith’s eye sight is 100% recovered and Nicky stops having nightmares of his mother dying before I even give thought to that one !

I should finish on a positive note and not a negative one.

It is a beautiful winter’s day here and this morning we are wrapped up in coats, hats and scarves and went for a long walk along the Maas in the first snow of the season. The bitter arctic wind sweeping down across Holland this weekend is wonderfully refreshing and this morning I watched as Judith did a “French Lieutenant’s Woman” impression on the cruise ship jetty out over the wide river while swepted by the snow and wind, her long black hair swirling about in the air, Mariaske wrapped up in her arms. Standing there on the bank retrieving kids gloves from a freezing puddle of water while the kids bickered over who dropped them in the first place as I froze my ass off I was struck by what a lovely sight they made. It has been horrid year but there are times when a beautiful sight can go some way to making the journey there worth the pain.

Author: Nina