Life ‘Through the Eyes’ of a Swakopmund MS Sufferer

Adam Hartman

7 June 2011

Hein Werrlein cannot live without support because of his advanced stage of multiple sclerosis (MS) yet he still managed to write a 46-page book – with his eyes.

Werrlein (55), a former farmer, was diagnosed with MS in 1995, and is now bound to a wheelchair, totally dependent on his wife, Sigrid, and nurse, Lucia. He cannot move, or even hold his head up. He cannot eat by himself; nor can he go the the toilet. Everything has to be done for him.

Yet, in a unequaled feat, the man wrote a book, ‘In retrospect to the future: Told with the eyes’, which was launched on World MS Day in Swakopmund recently.

For more than two years, the retrospect on his life and three stories were written while he was in a wheelchair; having to dictate every letter with the aid of an ‘alphabet table’, or write by means of an ‘eye-steered’ computer, with which Sigrid and Lucia assisted him.

“Now I am completely paralysed and can only move my eyes with difficulty, when I have rested. Nothing happens with me anymore without outside help…I communicate with [Sigrid and Lucia] only by using my eyes. It is a difficult language, which requires lots of patience. By means of an alphabet table I have to spell my every thought, wishes, comments and ideas to them. I can neither write nor speak anymore, because my tongue is also paralysed. I can hardly, or with huge effort and difficulty, express myself anymore or share my thoughts,” Werrlein writes in the preface to his book.

He explains MS as a neurological disease whereby the myelin layer around the nerves get attacked, for some unknown reason. Scars, which prevent information to be passed on from the central nervous system to the muscles, develop. A total paralysis of the muscles follows.

“Another name of this disease is ‘the disease with a thousand faces’. I have been hit by the serious kind,” he said.

According to John Mannheimer, Chairman of the MS Society of Namibia, there are about 100 known cases of MS in Namibia – “but the figure could be in the thousands”.

He said that Werrlein’s book was “well received” by the international MS community, and so it is already being translated from German (original language) into English.

Mannheimer also told The Namibian that this could very well be the first book written by an advanced MS sufferer with the eyes only.

“There are books on MS, and there are books written by MS sufferers too. But this is probably the first book in the world written, literally, through the eyes of a sufferer with advanced MS,” he said.

Minister of Health and Social Services, Dr Richard Kamwi, although absent from the book launch, wrote in his keynote address that he applauded Werrlein for his “guts and inspiration” in writing the book.

The book can be bought for N$75. All the money will be ploughed back into the MS Society, and used for the support of Namibian MS sufferers.

Mrs Werrlein also shared a message of how she deals with her husband’s condition.

She explained the initial stages as being ‘stuck in a cage’, but later, “with the help of Jesus”, she received the strength and wisdom to stand by her husband.

“It is interesting that neither the eye nor the laugh-muscles are affected, for which I am very grateful. Without my eyes it would have been impossible for this book to be ‘written’. In retrospect, it has been an arduous process to dictate the letters. Sometimes I only managed two sentences a day… At other times I could write paragraphs. This book is the result,” he said.

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