I never know how to react. How am I feeling? How can I describe the state I’m in to someone who’s never experienced it? To people who love me and genuinely care about how the hell I’m doing. But they can’t have the remotest idea what I’m going through. And I don’t want to scare them. I’m not a quitter either. Nor do I want to come across as someone who has laid down to the disease. All my life I’ve followed the advice of my dad, who I no longer have. It was simple. He who fears, s**t in the hall. I wasn’t scared. I wasn’t before. Now? Now I’m repeatedly looking for courage. Feelings like loss of confidence in myself, loss of faith that everything is as it should be, fear for my health, fear of what’s next for me, fear of what’s going to happen to me and how I’m going to manage going back to normal life. When that moment will come. And if ever.
Hair – It’ll grow fast and by Christmas you won’t know anything. And the hair scar will grow back. Until then, you can wear a wig. Or a headband. Lie. The truth is, my hair grows very slowly, after a month and a half I have an inch of growth, and not by the end of the year, but by next summer is a realistic time to be able to connect it to other lengths without anyone around noticing. I am taking a hair growth support product and an herbal shampoo completely chemical free. And I have a bald spot where the scar is. Not the hair, but the bald spot. And you can’t cover the scar with anything. It’s very sensitive to touch, let alone put anything on or through it. As a result, I’m not covering anything at all. On the contrary, I wear my hair pulled back in a ponytail on top of my head, so you can see both the scar and the shave.
Scar – Give yourself a pressure massage. Use calendula ointment. And don’t soak the scar for three weeks. The truth is, I started soaking it gently with cold water after 14 days, and very intensively. I didn’t use ointment. I didn’t use pressure massage at all. The scar was swollen, the whole place was very sensitive and with the added headache I refused to cause myself any more discomfort. On the contrary, I applied compresses of steamed burdock to the wounded skin. After a month and a half the swelling is gone, the cut has faded, but the skin in that spot is tight and very sensitive. I can’t sleep on my right side and the incision site stings and pulls when the weather changes. It is still very sore to the touch.
Physical fitness – You’re going to rehab. I’m not. For now, I’m just trying to get around on my own. Thanks to sports, I know my body physically pretty well. And my physical fitness has, to put it politely, gone into a huge tailspin. My whole body was stiff. Any movement meant tremendous exertion and muscular pain for me. I could hardly move my head at all. My movements were like slow motion from a movie. After a month and a half of intensive home training, although I am still slower and somehow delayed in my reactions, I regularly go for walks every day at about 4-5 km walking time, I can even bend with my head and you could say that I am currently at about 30% of my original state.
Head – It’s gonna hurt for a long time. You may have a high sensitivity to light, noise and weather changes. And you’ll be tired a lot and often. That’s right. Any change in the weather, especially rain, wind and storms, is torture for me. I dread words like warming, cooling, wind gusts and showers…..And the full moon is pure goodness to me now…. I’ve never suffered from weather sensitivity or had migraines before. Now my head is like a barometer. And when the condition kicks in, I get visual disturbances, nausea and dizziness in addition to major pain. My head hurts at any sign of exhaustion, fatigue or stress. I have a problem with places where there is a large concentration of people. Where there’s noise. Changing light or light abrupt. When I concentrate for more than an hour on anything. Any place where there is more excitement or activity that requires more thinking and concentration than my brain can process right now will give me headaches, nausea, dizziness and subsequently uncontrollable sleep. With weather changes, stress, pain or exertion, my body literally shuts down on its own without my input and I am able to sleep through most of the day.
I started looking for groups, organizations and foundations for people with brain injury. I need information so that I know that the conditions I am experiencing are common and okay. And most importantly….. that they will pass over time….. The extent of the physical injury will tell you. No one can determine the extent of a nerve injury. So far, we think we know 10% of the brain’s function. But as one top neurosurgeon rightly pointed out, even that 10% is a guess. Because we still have no idea what that 100% is. I do know that depressive and anxiety states that last for varying lengths of time are quite common with craniotomies and brain injuries. It’s not commonly talked about. Only in discussion groups of people who have had this experience. And that includes me. It is perfectly common and normal for people to have lost faith and confidence and everyone, including me, talks about a life reboot. Everybody’s values in life have been shuffled. Fear of crowds persists. Cognitive impairment is also quite common. As are varying degrees of loss or change in empathy and behavior patterns. I know all of this firsthand. And because these are conditions that you can’t control and can’t be warmed up, stirred up, or influenced by willpower, the loss of confidence in oneself is compounded by it. You are often in the role of a mere observer.
So how am I? I’m struggling. I’m still fighting. I want the person I was back. And I don’t know if that’s possible. Everyone tells me it’s very, very early to go back to normal. That recovery is a long haul. But no one can tell you how long that distance is.
I’ve set a daily walking schedule and a number of steps I have to meet. Carefully and very slowly, I started riding the exercise bike. I got a Huawei Watch, a smartwatch that can measure blood pressure, heart rate and brain oxygenation. And I check the values regularly. I joined discussion groups of people with the same disease. And I’ve newly scheduled cognitive training since November.
Probably the hardest part of the whole situation is to process the fact that this is not a one-time surgery, which is dangerous, painful and the recovery is very long, but after which everything is fine. This is a cerebral vascular disease. And one operation won’t make their walls any stronger. Thus, it is necessary to accept this disease and permanently adapt the lifestyle to it. And remain optimistic.
“Real optimism is not in the belief that everything will go well, but in the belief that not everything will go wrong.” Jean Dutourd
