The patient's journey: multiple sclerosisBMJ 2005; 330 doi: https://doi.org/10.1136/bmj.330.7496.885 (Published 14 April 2005) Cite this as: BMJ 2005;330:885
Posted as supplied by author.
(Melville H.: Moby Dick)
Ingrid and I were at the point to start a new more pleasant life after my divorce. Plans for a common future were made. Diseases existed only in my job as clinical pathologist. "Health is me." (1)
Suddenly it started with tingling sensations and numbness at my toes and later on at my feet.
(Wilde O.: The picture of Dorian Gray)
After a magnetic resonance imaging scan my neurologist told me the diagnosis: multiple sclerosis. "Not me." I had the impression to talk with him about someone else. It seemed completely impossible that a disease could affect me. It would be only for a few days. I had no time for such silly troubles (2).
When Ingrid and one of her daughters, Cathy, visited me, I told them what should be wrong. It struck Ingrid like a lightning. She embraced me and broke out in tears. When also Cathy’s eyes filled with tears, I felt sorry about …?
(Mahler G.: Symphony No2, Resurrection)
After five days on corticosteroids I left the hospital completely recovered, as I had expected. Two weeks later, I had to manage a neuroscience meeting. Nobody realised my disease. "O all-piercing pain, from thee have I been wrested!" (3) I was back, my stressed life could go on again.
(Büchner G.: Woyzeck)
Another two weeks later I felt dizzy. Within a few hours I could only walk aided. I was admitted to the department of neurology of a friend and was set on corticosteroids again. My symptoms improved only slowly, so we made an attempt with plasmapheresis. My condition worsened dramatically. When I raised my head, I vomited immediately, and suddenly I could not swallow anymore. Now I realised to be ill and felt cheated (4) by life.
(Dostojewski FM.: Crime and punishment)
That time my doctor and friend asked me," shall I go for your sons once more?" I denied. This incident showed me how threatening my condition was. I did not want them to see me in this hopeless situation. Whom would they have to talk to afterwards? They have no sensible mother like Ingrid is.
For permanent observation I was transferred to the intensive care unit (ICU). It was Good Friday. What a blow. Me, the atheist, transferred to the ICU on Good Friday. What does it mean? Am I guilty (5)? … for what? No. I did not convert to religiousness. It would not have been of any help for me. After two days I left the ICU.
# 2: The illness, a patient’s story
(Korngold EW.: The dead city)
The crisis was not yet over. I could only lie in my bed too weak to wash myself. I felt like sinking in cloudy downs deeper and deeper. Ingrid and in turns her elder daughters Michi and Lisi became my all day carers. It seemed to me sheer impossible to stay alone. When Ingrid was not at my bed at 6 am I got angry. When she left in the evening, I made her complaints. I clung to her like a baby. I was afraid that I could vomit, aspirate and suffocate. I could die alone and she was not at my side.
For me the care I received seemed self- evident. My enormous egoism came out. These days I realised "the joy from above" (6) and today I can only try to express my deep and sincere gratitude for all I received.
(Bach JS: Goldberg Variations)
Though I knew most of my doctors personally, and the nurses and therapists gave their best, it was no real warm surrounding. One of the doctors, I had believed him/her to be more a scientist, astonished me. No matter what he/she did, I felt sheltered. Antineoplastic chemotherapy stopped my decline. Thus I regarded it as "my personal chemo". I had no remarkable side effects.
My friend is a very busy colleague. It is impressive to see his activities. When he arrives at night from a meeting, the first way is to look for his department. I suffered from sleeplessness, and instead of a sleeping-pill, I heard music. The murmur of Glenn Gould (7) while playing piano fits extraordinarily well. When asleep suddenly, "Hello, how are you, just came from … ." I hated these visits.
(Beckett S.: Waiting for Godot)
Bound to a wheel chair and unable to swallow I left the hospital for a rehabilitation unit. Lunch and dinner are the highlights of the social life there. All activities are planned while eating. I had a gastrostoma and didn’t go to the dining hall. I was an outcast. It is not necessary to hear from others that they have been worse, and that they have managed all and even more. I did not miss these contacts having enough to do with my own problems. My therapists trained the muscles of my pharynx, but without visible benefit. I felt like having failed and had to wait (8).
(Kraus K.: Die Fackel)
The impossibility to swallow was even worse than the wheel chair. With the wheel chair I could have gone to a concert or meeting. But I had to spit my saliva in a handkerchief every five to ten minutes making social events impossible.
So I had a lot of time to think about my future and all the other things that come up to your mind. I listened to music and started to swallow literature in a manic fashion (9).
# 3: The time after, a patient’s story
(Dostojewski FM.: From the house of the dead)
I relearned to walk. Still unable to swallow I returned to work. There was nearly no support but hostility. Maybe doctors knowing the sequels of a disease are more rigid than others. I had seen similar reactions before. Either you can fulfil your tasks or you have to leave. Doctors should never forget that we all are human beings and thus should be treated like human beings (10).
( di Lampedusa GT.: The Leopard)
I have learned that there are other priorities in one’s life worth to focus on. These things are different today (11). I have plans like before. I want to accumulate experiences and intellectual treasures. Thus I am reading, reading, reading. I have time for everybody and no "enemies" anymore. Today I try not to fight but to understand them.
(Joyce J.: Ulysses)
The ability to swallow came back: Nena had made "Polsterzipf" (typical Austrian dessert). "Only chew them to get the taste" I tried, and suddenly the piece was gone and down in my stomach. It was like Christmas.
Today my main problem is the fatigue. To others I seem to have lost my activity and impulsion. Never it will be as before. It hurts when Ingrid says, "Where is Marcus, whom I knew?" I feel crushed and defeated by life. But, when I was unable to swallow, I dreamed of eating "bollito" and drinking "chianti" at Nerbone’s once more. I have done it. Still I can do such silly things like going by train over night to Florence, strolling the day through the city, have some stops in bars for "espresso macchiato" or eating "bollito" and the next night going back (12).
(Gide A.: Les nourritures terrestes et les nouvelles nourritures)
Nobody can say, what the future brings? The malignant course is over, now it is time for a more moderate course. Though I suffer from side effects, I regularly have my immunomodulating therapy. It convinces me that a relapse will not come.
All journeys have an end. "God bless, mine has not ended yet." Neither my doctors or carers nor my family or I know how, where and when I will arrive. For me it is clear that I need to forget what is gone, but go for the future (13).
# 4: The wife’s story
Looking back I realise, it was Marcus who brought a positivistic attitude into my life. Nothing seemed to him impossible. When I was down, he showed me another, positive view. Unfortunately he has lost this capacity now.
Never before had I mentioned a girlfriend who had MS. Within three years, she ended in a wheel chair. Since then, for nearly 20 years, I had been afraid of getting MS too. When Marcus told me the diagnosis it hit me like a blow. Suddenly one of my closest relatives was affected.
I had no time for a work-up process, things went too fast. Only some weeks after the diagnosis Marcus was in a life threatening condition. I had no time for reflections and complaints about my fate. It was like a horror trip, an apocalypse. I was left alone and had to go through. I have repressed a lot of emotions and feelings of these days as a mode of self protection.
Marcus’ condition has stabilised, and things had to return to everyday life again. For me it took two years to realise and accept the diagnosis as much as I can accept it at all. I regard complete acceptance impossible or as a sign of desperation.
Our everyday life is complicated by the abrupt emotional lability of Marcus. You can not rely on the sunshine, a thunder might strike you every minute. Additionally Marcus forgets things, which are important to me. It is not his intellect, but his thinking is somewhat complicated.
Though Marcus does not depend on a wheel chair any more we are not as mobile as before. We still make short trips to Northern Italy. Every time I have to consider that he needs regular stops and gets tired very fast. Also his bidaily injections are a problem to me. I don’t want to see his exaggerated painful face while injecting. I feel the need to hide.
Every minute I am aware of a possible change to the worse. When Marcus does not call me at the usual time I am afraid. Sometimes I fear to be left alone once. Me and Marcus try to remark the beauties and pleasures of each moment. We don’t let things slide anymore. I know that also my life could be over in a minute and I try to enjoy my life more than before.
# 5: The child’s story
I was studying medicine when it all began. Marcus complained about paraesthesias in his legs. I remember this well because of the regular phone calls with my extremely worried mum. We wondered what it could be, but I never really considered MS.
Nobody could explain why Marcus had fallen ill at his age. He was already over forty years, which is rather old for MS. We had a vague idea of what lied ahead: a slowly progressive neurological disease that probably would end with Marcus needing a wheel chair. We tried to accept the disease. Being a strong family, we thought to handle it quite well. I remembered a friend of the family who had an absolutely horrible time, and thought it couldn’t be worse. I knew that MS could take a different course. I never expected the worst to hit us but that was exactly what it did.
In the beginning Marcus was quite stable. Due to him feeling unwell mum had to bring him to the hospital. A simple relapse? But suddenly, Marcus wasn’t able to swallow anymore. I knew the disease was attacking his brainstem, threatening the live-supporting parts. It was only then that I realised in what kind of situation we where in. I had read about coping-strategies, but nothing helped. Primarily it was not me, who needed help, but mum and Marcus. Looking back, we children were the ones who could help. In the evenings we talked endlessly about the daily happenings and about what was to come. I admired my mum, in her way she was strong. On the other hand I felt sorry for her, was there going to be a future with Marcus? Would he have a future?
Marcus could not do even simple activities such as washing himself. So during the following weeks mum and we kids took turns in caring for him at the hospital. It wasn’t only his not accepting others but us to help him, it was a kind of family-feeling that told us what to do. I had the impression that the family around him the whole day gave him confidence. On the other hand I often thought it might achieve him more self-confidence if he had more time on his own and if we had not done everything for him.
After about 6 weeks Marcus was able to encounter the next step: rehabilitation. That time he was more on his own. Apart from the fact that his therapies took a lot of his time we all needed to normalise our own life. We had to leave him on his own to give him a chance to relearn things. Looking back I believe it was the best for him.
Marcus’ disease has been stable since then, and today, he has "only" mild residuals. Though I know that the disease is never under real control, I am optimistic and hopeful.
Posted as supplied by author.
1 Melville H.: Moby Dick. Penguin Books Ltd., London 1994
2 Wilde O.: The picture of Dorian Gray. Penguin Books Ltd., London 2003
3 Mahler G.: Symphony No. 2 "Resurrection". Deutsche Grammophon 1977
4 Büchner G.: Woyzeck. Reclam, Ditzingen 1999
5 Dostojewski FM.: Crime and punishment. Penguin Books Ltd. London 1991
6 Korngold EW.: The dead city. The RCA Victory opera series 1975
7 Bach JS: Goldberg Variations, BWV 998. Sony Classical, The Glenn Gould Edition 1981
8 Beckett S.: Warten auf Godot, Waiting for Godot, En Attendant Godot. Suhrkampverlag, Frankfurt a. Main 1981
9 Kraus K.: Die Fackel 1-922. Verlag die Fackel, Vienna 1899-1936
10 Dostojewski FM.: From the house of the dead. Penguin Books Ltd., London 1985
11 di Lampedusa GT.: The Leopard, Harville Press, London 2004
12 Joyce J.: Ulysses. Oxford Paperbacks, Oxford 1998
13 Gide A.: Les nourritures terrestes et des nouvelles nouritures. Gallimard, Paris 1942
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