A few weeks ago I woke up with a weird sensation in the face. I ignored that thinking it would disappear in a few minutes and moved forward with my day. Later that day someone told me that my right eye was not moving correctly and suggested (earnestly) to go to urgency. (Thank you!)
A facial paralysis may have many reasons, mine is in the the percentage of those without one (or at least the doctors have not yet found one). It may have been that it was to cold, stress, or something else. But it got me thinking.
I've been working almost non-stop for the last 20+ years, the last 10 years while having a family, managing projects and some other stuff. And my health and body, although not-in-an-awesome-state, were playing along, until a few weeks ago.
I also have a (step)daughter with a spastic Hemiparesss (it is no so easy to move half her body) since she was born. I have to say I have always tried to be comprehensive but it was almost impossible to try to be in her shoes, until now. And I have to say I also didn't realize that also until now.
I tried to take something positive out of this situation and I realized it enabled me to better understand my daughter. Yes, I needed to get sick in order to do that, but at least I'm not ignoring it anymore.
As a (step)father and father, we can try to understand our kids but we will never be really be in their shoes. They (as every other being) have different contexts, understandings and reactions, which makes it almost impossible to really "be" in their position. I may try to understand something from they point of view, but I now realize I lied to myself thinking I could step into their shoes. I take this paralysis as an example. It affected just half my face and that means that my right eye is not closing (I have to use a patch every night), my mouth is not responding properly (which means I have difficulty drinking water, eating, smiling and so on) and I have some issues breading through the right nostril as it does not move. I know it is not that bad as other cases, but it is a first for me and these are some things I realized which I didn't really perceived until now:
- It really affects your mood and self-confidence. Not being able to do the things you are used to, or having trouble eating or drinking affected me in more ways that I thought. My wife had to spell it for me to realize. And I can only guess how it feels for someone who know this will not go away (in my case it should last between 4 weeks and a year, but at least it has a due date).
- You want to say you still can, and do everything the normal way, but it doesn't make any sense. Just drinking water took many more minutes until I realized using a sorbet was easier, faster and more practical. I asked my daughter why did she not say that before, and she just shrug her shoulders. Since then, if we are in a hurry, I just give a sorbet along with the drink and I notice a small smile 🙂
- Eating big pieces of food is a nightmare, and just cutting something in a few pieces also does not help. Small and thin pieces are best and easier to chew if you have less control on one side of the face. For example, just cutting a sandwich in half (as I did until now) does not really help. But if I cut it in small thin slices I can eat easier without making a mess. This meas, when getting a bread at a coffee shop, to additionally ask for a knife (and maybe a fork).
- I also have a hard time speaking or pronouncing certain letters, and it affects me more than I thought it would knowing that I can't make myself understood (although to be honest I've never pronounced well enough for everyone to understand me, but in general it was possible). This also helped me to understand my daughter a little better because, although one wants to speak better, one cannot. I have always thought that everything depends on effort. If I can't do something I simply have to change the focus or try harder, but in this case the muscles just don't respond and you can't do anything about it.
- My daughter has several weekly therapies along with exercises that she has to do daily. Since she was forgetting periodically, we made lists for her to complete daily. Every time she doesn't complete it we have little arguments. Here again, I have always thought it was a discipline thing. If I have to do something, I do it. Now I realized that many times, even though I want to do the exercises that I now have to do daily, my mood plays against me. And the truth is that I never thought it would be like this. On the one hand I understand rationally that I must do the exercises to be able to recover the mobility of the face, and to be able to do things normally again. On the other hand I realized that the whole emotional part (which I have systematically ignored since I can remember) plays a major role in all this and I have never given it the importance it deserves, both in my case and in that of my daughter.
- How you feel while doing something to improve yourself is as or more important than the exercise itself (particularly because if you don't feel good you will often find an excuse not to do it).
- Not seeing improvements does not help your mood. Not knowing how your body should evolve with the exercises, not knowing what to expect, the lack of answers and doing the exercises every time without seeing apparent changes makes you desperate. And I rationally understand that there are compound advances in time, that progress is made step by step, that you have to be patient. But my emotional side does not go at the same speed and does not want to be patient and simply goes on strike and lets out bad emotions to make it even more difficult to move forward. In those moments it doesn't help to hear that yoga could help, or to hear all the good things. Hopefully a tight hug, an “I love you as you are and as you are now” and a “I'm with you as long as you want me to be with you”, that helps a lot more than a monologue about how life is like that and you have to move on, even though the monologue may make a lot more sense and say much more important things.
The safety of a circle of containment is extremely important. Knowing that others will be there for you when you need them is of great value. And that circle is not just for these situations and does not form instantly. It is a circle of people who "give you permission" to make mistakes by being there through thick and thin. Knowing that you can try things and not lose your loved ones is a good emotional anchor. And for that they must have proven to be there for you when you need them. And many times you don't realize it and you have to be reminded. Words are important and have power, as well as the actions that back them up. Words not backed up by actions are not consistent and make you question them. And the consequence of actions and words can be seen in difficult situations.
If I say I am there for you, it means I am there even if it means having problems later, getting less sleep or not doing things I wanted to do, because at that moment it is more important to you that I am there for you. It may not always be possible, but it should be true at least most of the time. If it's not, then it's just words that are hard to believe.
All in all, I think this situation as enabled me to grow a little more as a person, as a (step)father and as a partner.