May 2005

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From the Universal House of Justice

May 17, 2005 in Baha'i related, Ladan | 2 comments

On Friday I received a copy of this very beautiful letter sent to the National Spiritual Assembly of the Baha’is of the UK from the Department of the Secretariat of the Universal House of Justice, the international legislative authority of the Baha’i Faith based on Mount Carmel in Israel and in the vicinity of the Holy Shrines of Baha’u'llah, The Bab and ‘Abdu’l-Baha.

THE UNIVERSAL HOUSE OF JUSTICE
DEPARTMENT OF THE SECRETARIAT

10 May 2005

The National Spiritual Assembly of
the Bahá’ís of the United Kingdom

Dear Bahá’í Friends,

The Universal House of Justice received your email letter dated 5 May 2005. You are assured of its prayers in the Holy Shrines on behalf of Mrs. Ladan Herbert that Bahá’u’lláh may enfold her in His tender mercy and healing grace. Prayers will also be offered for the strength and well-being of her husband and family.

With loving Bahá’í greetings,Department of the Secretariat

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Latest on Ladan

May 17, 2005 in Diary, Ladan | No comments

It is now two weeks since the last operation that Ladan had. Doctors will tell you that families see things that others don’t see, sometimes they are things that the family pick up because they are there all the time or because the patient responds better to them, and sometimes it is because the family want to see something and so what they are witnessing is coloured by that desire. To avoid building up unjustified optimism I have tried to avoid reporting things that I am not certain, from a scientifically sound basis, have really happened. Where I have crossed this line in the past I have referred to things that Ladan “seemed” to do rather than did do. In order to give a fair picture of where we are now I feel the need to cross this line almost completely because to not do so could lead to unjustified pessimism about a lack of progress.

There is one very clear sign of improvement since May 3rd and that is in Ladan’s left eye, most people move their eyes upward when they sleep, Ladan’s left eye was not doing this, it is now. Other than that the signs are all infrequent and, what makes them harder to report as true events, they are short lived moments. Back in December successful attempts to communicate were infrequent but they would last several minutes, sometimes up to 15 minutes, so there was time to check that Ladan was understanding properly and giving appropriate responses before proceeding. When an encouraging sign lasts for less than a minute you can’t replicate it and you can’t therefore confirm it to be what it may appear to be. However, there have been a few of these short lived encouraging signs that did not appear to be there before, in some cases not for a few months and in some cases never before, and there have not really been any negative signs such as decreased awareness… a good sign of awareness that has always existed is that Ladan will often open her eyes when I say her name to her face, or will not flinch if I touch her face after telling her what I am about to do but will flinch if I touch it without announcing my intentions, or Ladan’s tendency, even if she is asleep, to show more eye movement when I am talking to her than when the room is silent… if these (and a few other) signs were to go, as they did on one occasion when a scan showed that she needed to go back to theatre, that would obviously indicate potential decline.

So, take the following with a small pinch of salt because I can’t promise you they happened, but they seemed to happen more than once in the last two weeks and they are being witnessed by those of us who have been by Ladan’s side for more than six months now so we obviously know what movement’s Ladan tends to make, such as moving her mouth around a bit before trying to swallow) that a less seasoned observer may mistake for any of these: Ladan has opened her mouth and opened it wider on request, her limbs -and most particularly her head – have been moved with increased range and control, Ladan has made mouth movements that appear to be attempts to speak, including making the shape for the word “No” in response to a question, and Ladan seems to be focussing on the people around her – or at least looking in the correct direction for them – increasingly when she seems awake.

The neurosurgical team have put in a request for another CT scan and everyone is hoping that it will show the new shunt has been working and Ladan’s ventricular system is either back down to size or on the way there.

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Ladan’s Room

May 17, 2005 in Ladan | No comments

(Apologies for the loss of images in this post, I hope to have them restored soon)

I’m sure people have often tried to imagine Ladan resting in her hospital bed as they think of her or pray for her, so I thought you may like to see some images from the room, I have deliberately left Ladan out of them as she may not like to see images of this period when she recovers. That said, Ladan always looks very beautiful, it is often difficult to imagine when we look at her that there is anything wrong as she can look so healthy. The photo of the bed was taken while Ladan was sitting in a chair which she does for a few hours most days.The wall in front of the bed is wall-papered and in the top left corner has a picture of ‘Abdu’l-Baha, an exemplary central figure of the Baha’i Faith, and then down and to the right of that a photo of Ladan’s martyred aunt Shirin Dalvand who was killed for her Baha’i beliefs in 1983 in Iran. Ladan only met her aunt Shirin a few times before they received the news of her execution but she holds those memories, and her love for her aunt, very close to her heart. Near the top of the remainder of that wall are all the cards that Ladan has been sent by friends and family, about two thirds of them are in the picture. The teddy bear is called Jamie, he was my replacement while Ladan was on ward 25 with severe stomach pains, something she could hold against her stomach, that was when I had to stick more closely to official visiting hours of 2pm – 8pm. There are a few photos of Ladan’s immediate family and then, behind the flowers, lots of cards that the children of Year 1 in Broadwater Down primary school made for Ladan. The green thing hanging on a clothing hook is a sling that is used to help Ladan get into a chair. There is also a framed piece of artwork by Arthur Easton which is part of the rooms furnishing (just out of the picture).

The photos on the window sill are a decorated ringstone symbol, another photo of ‘Abdu’l-Baha in a silver frame and decorated with rose petals, and a photo of her graduation. On the radiator there is a picture from our wedding, a photo of her Mum (the same one is on the wall) and a photo of the Shrine of Baha’u'llah in Bahji near Akka, Israel. Every room in the hospital has a wooden cabinet with shelves and a Gideon’s Bible, on top of this we currently have a simple CD player and here we keep the tapes and CDs that we play her as well as a collection of her own clothes that she wears… actually very few of them were her own clothes before she was admitted to hospital but many have been bought for her since they are suitable for the environment and they are nicer than the hospital gowns, though on occasion she is dressed in them still.

The main light in the room is a fluorescent strip light on the ceiling but there is also an awkward side light which is theoretically adjustable but has very few positions it can stay in without being held. There is also a TV/telephone system in the room provided by Patientline, this is very expensive. Ladan has often shown positive response to TV in as much as she has often been inclined to focus on it when it is on and follow it when it is moved from one position to the other.

The blue wardrobe contains some spare bedding and a few more of the personal washing things and massage oils that we have brought into the hospital. Ward 30 is on the top floor so the view out of the window is quite nice, especially on a clear day. Of course, some things do move around the room, such as the CD player and most particularly Jamie the teddy bear who is often by Ladan’s side or adopting a human-like pose somewhere on the bed, window sill, or table.

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The Long Healing Prayer Revised

May 13, 2005 in Baha'i related | No comments

In the Baha’i Faith we have the blessing of many prayers having been penned by the Prophet Founder of the Faith, Baha’u'llah and by His forerunner The Bab and His son ‘Abdu’l-Baha. Among these prayers are a few invested with a special power and potency, one of which is the Long Healing Prayer.

If you say the Long Healing Prayer quite often then it may interest you to know that the latest editions of Baha’i Prayers to be printed in the United States include a correction over most Baha’i prayer books in circulation, both printed and online.

In the uncorrected version of the prayer the refrain “Thou the Sufficing, Thou the Healing, Thou the Abiding, O Thou Abiding One!” appears 40 times, including once after “I call on Thee O Thou Who slayest the Lovers, O God of Grace to the wicked!”, near the end of the prayer. In the corrected version the refrain appears 39 times and its final repetition is in the verse “I call on Thee O Manifest yet Hidden, O Unseen yet Renowned, O Onlooker sought by all! Thou the Sufficing, Thou the Healing, Thou the Abiding, O Thou Abiding One!”

The corrected section of the prayer, therefore, looks like this:

“…

I call on Thee O Manifest yet Hidden, O Unseen yet Renowned, O Onlooker sought by all! Thou the Sufficing, Thou the Healing, Thou the Abiding, O Thou Abiding One!

I call on Thee O Thou Who slayest the Lovers, O God of Grace to the wicked!

O Sufficer, I call on Thee, O Sufficer!
O Healer, I call on Thee, O Healer!
O Abider, I call on Thee, O Abider!
Thou the Ever-Abiding, O Thou Abiding One!

Sanctified art Thou, O my God! …”

My thanks go to Terry J. Cassiday of the U.S. Baha’i Publishing Trust for confirming this for me.

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Ladan Update

May 10, 2005 in Diary, Ladan | 1 comment

Ladan on the Isle of Wight, August 2004During January and February Ladan was, to my eyes, making some kind of progress every day. It was slow and nothing compared to how things had been going before Christmas, but we were getting blinks in response to questions and her eyes seemed to be tracking text, Ladan seemed particularly focussed on the tv when it was on in front of her, but from around the end of February the signs of progress became less frequent and things started to tail off.

The enquiries into what happened at Christmas, which are still ongoing, prompted the suggestion that we change consultant from a neurosurgeon to a neurologist who would be more appropriate for Ladan now that it was believed the surgery was all over. The new consultant and the new ward were both pleasing to us. In order to better control Ladan’s underlying vasculitis she was placed on a toxic immuno-suppressant drug and in consultation with an expert in bleeds caused by vasculitis our consultant proposed that we use an even higher dose of the drug, and higher dose steroids, to ensure that any vasculitis was completely out of Ladan’s system. This proposal carried risks as it would completely wipe out Ladan’s immune system for several months, after much discussion among the family we decided this was a risk we had to take.

While this was being discussed Ladan was being tried out on normal air rather than slightly oxygenated air, during this she started to develop an irregular breathing pattern which worsened over time. It was my feeling that the sudden change in air was causing this but the doctors felt it more likely to be either deterioration or caused by sedative drugs. They reduced the sedative drugs and called in a breathing expert. On the breathing experts recommendation a CT scan was carried out, it was a long shot but a build up of cerebral spinal fluid in the head, usually relieved by a shunt, could be causing breathing difficulties to develop.

The CT scan was taken on 24th March but the results came through on the morning of Friday 25th, there was indeed a build up of pressure. I had been thinking that I was right about the oxygen because Ladan had been back on it for a week and her breathing had improved, but certainly this build up of pressure was likely to hinder Ladan and it needed to be sorted out. In the early hours of Saturday morning Ladan’s family sat around in the visitors room while her shunt was checked and, having been found to be blocked at both ends, replaced.

Every weekend thereafter, until the end of April, Ladan was back in theatre. The new shunts would either be found to be blocked or infected and therefore needed replacing with another shunt or sometimes with an external ventricular drain as a temporary measure while they treated infection. On the penultimate weekend of April Ladan had to go to theatre twice as the external drain they had inserted was found to be dislodged and causing a further build up of pressure. Finally on 3rd May, having finally spared us from late night weekend surgery (and it was always late night) her external drain was again replaced with a shunt and we are again waiting to see if this one is working for Ladan.. Ladan has faced brain surgery 8 times in less than 8 weeks, there is a little concern that even if the shunt is working Ladan’s head may not return to how it looked before February, but the coming days and weeks, if the shunt is working, will tell.

Any considerable build up of pressure in Ladan’s head, and any infection that she may have also had in her head, could in themselves reduce her conscious level, let alone provide a major hurdle to recovery. With all of this going on the plans to intensify Ladan’s immuno-suppressive therapy and other plans of moving her to a slow-stream rehabilitation centre have been put on hold.

During this difficult period Ladan has occasionally shown very encouraging signs, she has convincingly tracked with her eyes and on occasion seemed to obey commands, but these have been infrequent events. I am hoping that a successful resolution to all the shunt problems will put us back on the course we seemed to be on a couple of months ago, failing that hopes turn to the more vigorous immuno-suppressive therapy which is still on the horizon.

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Project Melody, Baha’i prayers set to music

May 9, 2005 in Baha'i related | 1 comment

Link: http://www.projectmelody.com

A Bahá’í Composer, Allen Tyrone Johnson, is sharing his music free of charge to “help individuals worldwide grow closer to God”.

Setting Baha’i prayers to music in their translated english form is a considerable challenge, some shorter prayers are very well known in a musical form such as:

“Is there any Remover of difficulties save God? Say:
Praised be God! He is God! All are His servants, and all abide by His bidding.”

and

“O God, guide me, protect me, illumine the lamp of my heart and make me a brilliant star. Thou art the Mighty and the Powerful.”

Doug Cameron did a particularly good job with the prayer:

“O God! Refresh and gladden my spirit. Purify my heart. Illumine my powers. I lay all my affairs in Thy hand. Thou art my Guide and my Refuge. I will no longer be sorrowful and grieved; I will be a happy and joyful being. O God! I will no longer be full of anxiety, nor will I let trouble harass me. I will not dwell on the unpleasant things of life.
O God! Thou art more friend to me than I am to myself. I dedicate myself to Thee, O Lord. ”

On the whole, however, longer prayers are difficult to set to music and Allen Tyrone Johnson has taken on the challenge with some much longer prayers, including the Long Healing Prayer. There is another version of the Long Healing Prayer set to music in which the last paragraph is spoken, in Allen Tyrone Johnson’s version the entire prayer is sung. The style of the singing is quite well removed from other prayers I have heard sung, sounding somewhere closer to a young Michael Jackson singing a ballad.

Of the six prayers available on the web site I listened to four of them and quite liked some of them, most particularly the marriage prayer. The Long Healing Prayer, which rarely takes more than ten to fifteen minutes to read, lasts for thirty five minutes which may be a little long to focus on as an individual prayer but would probably make for a meaningful meditation on the names and attributes that are called upon in the prayer, in fact Allen Tyrone Johnson went travelling with his rendition of this prayer calling it the “Long Healing Prayer Musical Devotional Experience.”

Setting prayers to music is a great service to offer the world, I will always remember “O God” Refresh and gladden my spirit…” thanks to Doug Cameron’s lively musical version of it. Making the fruits of these labours available free for everyone to download on the Internet ensures that almost anybody may have the chance to hear this music and benefit from it.

Thanks to the person who posted a comment elsewhere on my site to bring this to my attention.

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