Life on a Vent: Page 3

• Abaya
• Mark and Susan
• Mark and Susan - daily routine
• Another Susan
• A little vent humor

• David's Story
• Maribeth's dad
• Speaking and smelling

• Henrik's Story

• Paula's dad
• David A.'s Story

[ed: This story was translated from the Danish version which is distributed by the Danish MDA.]

My name is Henrik Wendt Jensen. I am 45, married and the father of four children aged 22, 19, 12 and 9. From the age of 37 I have suffered from ALS, a neuromuscular disease. Today I am almost totally paralyzed and wholly dependent on the help of others and the assistance of technical devices such as computer communication and tube feeding. For the last two years I have had to use a ventilator during the night; during the day I am able to breathe with the occasional assistance of a breathing bag.

I live in a house with my wife and the youngest kids.

From the outset I have kept myself well-informed about the disease and its possible progression. I have therefore from the start been aware of the problems concerning treatment and the need for technical remedies that would occur along the way. This awareness also included the fact that at some point I would have to face breathing problems and the need of a ventilator. This information I had from ALS-groups in the US, where the attitude concerning information and treatment is open-minded.

The main task of patients' organizations is to bring about completely unprejudiced information about the disease and its treatment. The organizations can do this through a guidance-function directed against the individual ALS-person and a policy of breaking through the buttoned up attitude of the public health system. I have been met with good-will from doctors and the health care system, but I wonder how things would have looked had I not had and expressed my knowledge of and attitudes to the various problems?

A complete openness on the nature of this disease is a precondition if the surroundings are to deal with the ALS-person in a relaxed and natural manner.

There has been some debate on the justification of the use of ventilator and other life-prolonging devices. Is it a trap or a true help? Blessing or curse? An interference with nature? And what is it like to exist on the premises of some machine? A lot of intricate reflections and considerations.

Somehow it is strange that a matter of such a private and individual character has been made the topic of a public debate. The only public interest in the matter is - strictly speaking - the financial question and when it comes to it few people have the courage to deal with that question.

To the person directly involved, who alone can contemplate the problem, the question is quite different and far more simple. The key-question is not ventilator or not, but whether you find pleasure in life or not. If you have a zest for life in spite of your disabilities, then the ventilator is a minor detail which can never become decisive.

The ventilator is associated with intensive care units, transplantations and death criteria-discussions and this has cast a shadow of drama on it - quite out of step with its simple function as a technical aid for disabled people. Let us play down the drama and view the ventilator as a technical device on par with the electric wheelchair and computer communication.

To me the decision to accept respiratory assistance - when needed - was an easy one. Because I never for one moment doubted that my life was valuable. I have experienced myself as an active, important and accepted member of my family. They have fully supported my decision and have at no time discussed it or tried to influence it. Not only could the decision be mine alone - but it would have been impossible to discuss it with my family, had their attitude been doubting. Any suggestion of doubt concerning my decision would be a questioning of my life and that would inevitably mean an irreparable damage to our relationship. The same would be the case, had I been met with any expressions of doubt from friends or doctors. Any conflict between my life and the views of others would be immensely traumatic. It is possible to learn to accept your disabilities but you cannot learn to accept that others don't find your life worth while.

When you suffer from a progressing disease where the need of a ventilator occurs rather late, there is ample time to get to know and make up your mind about what life is like when you are handicapped. If you find that you have the zest for life, there is no reason why you should hesitate to use the ventilator. It is terribly unpractical but not a drama. One can - in a speculative mood - dream that one possessed an Aladdin's Lamp and could wish away one disability or handicap. In that train of thoughts I haven't yet wished away the ventilator!

Of course the constant presence of helpers is - besides being an indispensable support - also a burden, in particular on the family. But even without a ventilator we would be dependent on helpers.

The importance of facing the question and informing your relatives can be illustrated by the way in which I came to use the ventilator. My breathing gradually got weaker but nothing happened until one day I was faced with an obstacle that I couldn't cope with. There I was on the floor, blue in the face and completely unable to make any decision whatsoever. Fortunately I made it, but we ought to have been informed that this situation might arise. After this my breathing was OK at least for some time.

So I was put on a ventilator earlier than necessary and that turned out to be a blessing in the end because there is a tendency to ignore and delay the need for new remedies. They won't help you in the final end and while you have to use them they are a nuisance.

You are inevitably influenced by the people around you in these matters because you don't want to become a burden or become isolated because of the clumsiness or noise of the ventilator. The outcome might be that you choose not to use the ventilator and instead experience the unpleasantness of a strained breathing. If only the ventilator was smaller and less noisy

becomes the central issue. To me it is associated with three closely related aspects: a basic well-being, meaningful activities, and the partaking in a community as an equal partner. When you are seriously disabled each one of these aspects are affected. Previous values are lost and new ones will have to be defined through a shared effort in the family. A meaningful life is not a given thing but something that you create.

To be handicapped first and foremost results in a need for help. The right kind of help is vital for your well-being, which is a precondition for your inclination to do anything at all. What matters is being able to breathe, being free from pain, not being too tired, anxious or depressed.

To me the dependency on others is unpractical but it is not a mental strain. It will only become a burden if it is connected with impatience and aversion. Here a technical devise is often more uncomplicated that the human being. It never shows signs of impatience or annoyance.

But there has to be a limit to the extent of help - or it will invade your integrity and restrict your self-expression and suck the marrow out of life.

It is quite natural that others take over the physical activities that you no longer master yourself. But unfortunately this is not where it ends. The result of our slowness is often that others make decisions for us - decisions about time, money and everything else. In short deciding what we do and what we don't. The outcome of this process is that we are made passive. By these misguided attempts to be helpful the zest of life disappears because the power of action is a vital part of being alive. You don't help a person by taking away his or hers field of activity but by relieving him or her from the feeling of being useless. It is a misunderstanding that because someone is completely disabled he or she is also free from obligations.

When your handicap is so big that you give up working it is natural that you concentrate on the things you can do in relation to your family and friends. Here the tasks are manageable if the people involved are determined to demonstrate the patience required.

With a strongly restricted range of action you need to concentrate your activities to what is valuable and useful. In this respect my ideas, advise and decisions are as valuable as anybody's.

I used to be physically active as a sportsman and a do-it-yourself-man etc. Now all I can is to see, hear and think and my opportunities for self-realization are drastically reduced. What is left is the role of decisionmaker, guide, parent, critic and supporter. These function do not involve physical activity, they are all I master and thus make up my active life. The only real and lasting quality lies in doing something useful for others.

I am able to take care of the family economy, fill out the tax return, communicate with friends, social services and doctors. Write songs for family occasions and Christmas cards. Give advice concerning major purchases, school and the choice of studies. Discuss with my children and try to support them in their decisions - my great advantage being that I am there when they need me.

These activities solely depend on the ability to communicate. In this respect I am totally hinged on the technique of my computer. Without it I would be completely cut off from an active life. So in more that one respect I live on the mercy of technique. But in our present society who doesn't? We are all facing the challenge of learning how to live with modern technology. I don't feel like a robot because of it.

To be able to take part in the life of my family means that I fill out a role, that I am not merely a burden. And in the long run that is vital for your self respect. I also believe that it is useful.

My youngest son explained it like this: the problem in this family is that my father is helpless and so are the rest of us.

Luckily this has changed. There is much joy and quality in watching how the kids gradually become independent, how they learn how to mend their bicycle punctures, make the Christmas tree stand on its foot and fix a number of things often with the help of my notes and instructions.

Or to see my daughter having fun over teachers and schoolmates who believe her father to be incapable of hearing and understanding. At least she won't have problems in relation to handicapped people. Or the fact that they ask me if they can have a mineral water and usually go along with what I say.

I try, consciously to involve the children in helping me. I ask them to straighten my hands, move my legs etc. So that they can keep up the contact with me instead of being pushed away because of the professional help.

My tiny contact to the computer thus becomes the great contact with life but this is only possible because we have been careful and ambitious in our way of dealing with each other. If we were not, then the technique would be useless. What matters is the personal contribution. This has meant that my wife and I have been able to maintain our contact and discuss matters usually discussed by a married couple. This is quite simply the reason why our family has been preserved through this extreme situation. Here technique and ventilator are vital elements. They cannot guarantee the value of your life, but they can be valuable helpers in our pursuit of a full and meaningful life.

17. June 1989

[Back to top] [TPALS Home]