It’s humbling to be able to help without trying to, just by being
I am 70 years of age. Over the second half of a gratifyingly healthy life, I have felt comfortable viewing the body and mind as separate phenomena, though related. This means that bodily discomfort does not need to manifest additionally as mental grief. This is relevant to what follows.
At the end of 2017 I stumbled in the street for no apparent reason. A month later I lost balance and fell doing an exercise I had used for some 20 years. We initially wrote these incidents off as age related. It was only when Dupuytren’s syndrome showed in my hands that I took the package of symptoms to my GP. We know each other quite well in spite of my only having consulted him infrequently.
My GP sent me for neurological tests in Southampton and called me in for the results. He judged correctly that he could tell me – motor neurone ALS* – without my fainting on him. Here my body-mind awareness arose instinctively. The body is a creation of nature, birth and death are routine processes of nature, and none of this needs to disturb the underlying equanimity of the mind. “I” cannot control “my” body. It is not a question of “why me?” but instead “why not me?”.
This was in April 2018, since when I have seen my specialist consultant five times. He confirmed the diagnosis, commenting that my GP had been “brave” to tell me. He regarded mine as a relatively early diagnosis, he said some patients first come to him when the condition is much further advanced. I walked five miles in a desert in March 2018 and drove a (hire) car in June, but soon after that I started to use crutches. We managed a final enjoyable five week holiday in Asia in September 2018, without the adventure aspects we had indulged in – there is a natural end to everything. However much we have done, and may wish still to do, it is empowering to accept that now is enough, there does not need to be any more (especially if there cannot be!).
Crutches served to the end of 2018. A four wheel rollator has done the job since, but a wheelchair is waiting because the legs now seem to have reached the point where they cannot be trusted even on the single level of our apartment.
My wife and I decided to approach Dignitas as soon as we realised what is involved in the natural final stages of MN. My GP and consultant have both done nothing to discourage us from going to Dignitas, but they have understandably not offered direct encouragement either. I received my provisional green light in September 2019 and I have arranged the final journey before the end of the year. Dignitas themselves are very friendly, staff speak German, French and English, and it feels like an efficient and effective organisation.
We judged the final timing based on four physical factors all coming up to a point of significant change at about the same time soon: (1) breathing would need a ventilator, (2) difficulty swallowing would lead to feeding tubes, (3) fading voice would require a voicebox, and (4) difficulty coughing could leave fluid near the lungs. We have opted specifically not to wait for any of these changes. The trip to Switzerland needs wheelchair rather than rollator.
We regard ourselves as very fortunate to be able to afford Switzerland. We are aware that so many who would like to go simply don’t have the means. Certainly our own life insurance is not automatically invalidated by suicide in the form of assisted dying – MN cases are considered individually on their merits. Ours is one of the larger companies, so hopefully others will be as flexible. To speak early to insurers if in doubt may be key to some people’s ability to pay for Dignitas?
My application for Attendance Allowance seemed to receive fast track approval. We will have enjoyed this for eight months, but I probably could have applied earlier. This suitably acknowledges how much my dear wife does to support me, taking over each task as I become unable to do it myself. The application for local authority blue badge runs to over 40 pages, but for terminal illness reduces to just one page. Again delivery was virtually by return, when the notes warn of waiting ten weeks.
Completely independent of MN, Dupuytren’s syndrome has bent the fingers dramatically. However with the focus on MN there has been no incentive to sort that out. Surgery for Dupuytren’s might well have been painful to the body, whereas MN has not involved serious discomfort.”
*Amyotrophic lateral sclerosis
**Research by the Assisted Dying Coalition, of which My Death, My Decision is a founding member, estimates that at least one British person ends their life in Switzerland every week; and that over 1,500 UK citizens are members of one of the assisted dying organisations in that country.
The number of those who want to subscribe for such help would rise considerably, were it not for the fact that the cost of ending your life in Switzerland is around £10,000. Yet, to date, Parliament has not seen fit to pass a law allowing medical assistance to die, despite research by the National Centre for Social Research showing that close to 90% of the population favour assisted dying in some circumstances.