[klik hier voor Nederlands]

Besides investigating brain functioning, I have also experienced first-hand the possible consequences of neurological disease. My academic career was interrupted due to a severe brainstem infarction.
The infarction left me completely paralyzed from my nose to my toes and I was unable to breathe on my own, a condition known as locked-in syndrome. Against all medical prognoses and with hard work, I regained the ability to breathe, talk, eat, sit, use my hands, walk and work as a neuroscientist.
The interview below was published in national newspaper Trouw, section 'Life lessons', 8 December 2018.

Life lessons of neuroscientist Maartje de Jong

Following infarction of the brainstem neuroscientist Maartje de Jong (37) became locked inside her body. She could communicate only by blinking her eyes. Against all odds she recovered from this situation. "I felt I should not write off my body just yet."

Lesson 1: Tomorrow everything may be different
"Friday 30 January 2015 was a day like any other day. On Saturday 31 January 2015 I was at the Intensive Care Unit of the hospital dependent on a ventilator. At home my 10-months old baby girl. A couple of months later I would have defended my PhD thesis. That did not go through, evidently. Due to the brainstem infarction I was in a locked-in state, paralyzed from my nose to my toes. It was unclear what caused the infarction. I could only communicate by blinking my eyes. 'I am still smart', was the first thing I spelled out while someone pointed to letters on a lettercard. Because, although I could not move anymore, I wanted them to know I was still 100% the same mentally. Then I spelled 'prognosis'. 'Very bad', was the answer the doctor gave me. Chances that I would ever leave my bed again were very small."

Lesson 2: You are stronger then you think you are
"When someone touched my shin, I felt tingling sensations all across my leg. If no one touched me I felt nothing and I did not know where my body was. Compare it to being buried in the sand up to your eyes, with a straw in your mouth through which you can breathe. You cannot move, but if someone beats on the sand you feel the vibrations a little. 'Were you not in sheer panic?', people often ask me. No I was not. When something slips through your fingers, you panic. But when something is so omnipresent, you cannot do anything but surrender and try to make the best of it. There was an overwhelming grief. About so cruelly being ripped out of my daughter's life. About my husband and I not being able to be there for each other. At the same time I was amazed by my mental resilience. When something so devastating happens, you automatically go into survival mode. You are extremely alert. For me that meant: putting all my energy in recovery, however small that recovery would be."

Lesson 3: Practice, practice, practice
"'We have to wait three months', the doctors said. 'Then we will know if you can ever breathe independently again, move or talk.' I only listened to the first sentence and ignored the rest. I do not know why, but I felt that I should not write off my body just yet. From day one I practised intensively. I my head I told my arms and legs to move. At first nothing happened of course, but as a neuroscientist I knew that it could be important to keep activating the neural pathways in my brainstem. What applies to muscles, also applies to neurons: use it or lose it. After eight day I was suddenly able to wiggle my hips from left to right. I could also move my lips a little, so that my family could try to understand me by reading my lips. It was a euphoric feeling. Eventually, I spent three weeks at the Intensive Care Unit and six weeks in a rehabilitation centre before I could go home."

Lesson 4: Death is not scary
"The first day in hospital I was close to death. My husband was sitting next to me reading my university books to try to understand what was happening with me. For me, that memory is associated with a feeling of happiness. I felt intense love. No panic, no fight. 'I have lived a blessed life', resonated in my mind. It was calming to know I did not regret anything. At that moment I knew: dying is not scary."

Lesson 5: You cannot choose what happens to you, but you can choose what you do with it.
"I could not feel my muscles, but I did feel pain. Intense abdominal cramps, neuropathic pain due to lying completely still and excruciating pain where the tracheostoma was inserted in my windpipe. Despite the pain I refused pain killers during the first week. I wanted to breastfeed my daughter one more time. Some doctors did not understand. They thought I was putting myself through unnecessary and detrimental difficulty. It was painful, exhausting and frustrating when nurses tried to you the breast pump on me - I could not give them any guidance of course. But I persisted. This was my chance to still be a mother to my daughter."

Lesson 6: Do not underestimate what a child can understand
"One week after I was admitted to the Intensive Care Unit I saw my daughter again. I lay in bed motionless, with drips in my arms and the tube of the ventilator entering my neck. The only way I could greet her was by lifting my eyebrows. Despite all that she recognized me instantly. I will never forget her scream when she saw me. It contained relief and pain at the same time. The nurse put her on my chest so she could drink. The ultimate mixture of joy and sadness. When she left, I emotionally broke down for the first time since I got locked-in. Suddenly I could not bear all the pain anymore. I am sure my illness has changed my daughter. The secure basis in her life was swept away. As a consequence she is sometimes not as breezy and carefree as you would expect from a child. When I returned home she was constantly being thoughtful and considerate to me, however young she was. In the beginning it could take me 45 minutes to change her diaper and she would patiently lie still and look at me the whole time. It also took a year before she would fall asleep again while cuddling me. For example, when I would lie beside her she would stay awake, looking at me with big eyes. I do not know to what extent she is traumatized. Time will tell. Luckily she is doing very well now."

Lesson 7: Worrying is a luxury problem
"When I was at the Intensive Care Unit and the rehabilitation centre I seldom thought about the future. I simply could not spare the energy to think about all the nightmare scenario's. Every day, every hour, every minutes I was fighting to get stronger. This was my sole goal and all the rest I put aside. For that reason I wanted to have as little visitors as possible, apart from my husband and daughter. For every ounce of the little energy I had I carefully decided: What will I use it for? Practising was more important than seeking distraction or company, so that is what I focussed on. This extreme focus was my way to persevere."

Lesson 8: Powerlessness is worse than dependence
"I had suddenly changed from an independent woman into a patient depending on help with literally all daily activities. I just pulled a switch in my head and accepted that; there is no room for embarrassment when you are paralyzed. It was terrible to be depended on others to see my child. For weeks I could not hold her, cuddle her or kiss her. I remember one time she and my husband visited me in the rehabilitation centre. When my husband went to the bathroom she started crying. In my wheelchair I rolled to her cot and tried to lean over to comfort her. Then, like a rag doll, I glided from my wheelchair onto the cot, which collapsed. Thank god she was unharmed. While my husband comforted her, I was lifted back into my wheelchair by means of a patient lift. I have seldom felt so powerless."

Lesson 9: Being disabled makes you rush less
"Sometimes an illness can be an eye opener, a reason to change your life or finally choose for yourself. For me it was not like that; I did not change or become a better person. In that respect being ill is a useless experience. At best it confirmed that I was already on a good path. It is remarkable how much I recovered. I can walk again, cycle, take care of myself. And I do not suffer from any psychological problems related to my experiences. I am grateful for that. But still, I do have physical limitations I did not have before. There are a lot of movements that I cannot make. For example, playing with my kids on the playground, dancing - which used to be my favourite hobby - or walking larger distances. There is one advantage though: being disabled makes you rush less. Because I have to move slowly and with care, I cannot rush myself."

Lesson 10: You can give up later
"On Wednesday 7 October 2015, about eight months after I got locked-in, I defended my PhD thesis after all. It was the crowning of all the hard work that I could defend my thesis in person. That, without any help, I could walk forward and reach out my arm to receive my doctoral degree. Half a year before that, no one would have believed I would be able to achieve this. Personally, I always had hope. Or perhaps hope is not the right word; I just had not settled for any outcome yet. And this I still the way I think about it. I decided to keep practising intensively until I am forty years old. In the mean time I had a second child and I also work part-time again. I have many plans for the future, among which setting up my own line of research. I will not rest before I have the feeling I got the most out of life. I can always give up later."

Neuroscientist Maartje de Jong (born in Eindhoven, The Netherlands, 1981) is a researcher at the Spinoza Centre for Neuroimaging in Amsterdam, The Netherlands. She graduated in Biology and Neuroscience and received a PhD degree for her research about how the brain processes visual experiences. In January 2015 she suffered a braistem infarction, which initially left her in a 'locked-in' state. A long period of rehabilitation followed. De Jong is married. Her husband is attorney at law and liquidator in bankruptcies. Together they have two children of 4 and 1 years old.

Dutch text: Marte van Santen. Translation: Maartje C. de Jong. Photo's: Merlijn Doomernik.
Original publication: [PDF].