Still heroes

I knew that being around Parkinsonian patients would be a new and somewhat distressing experience - I had no idea how I would handle it - but in part that was one of the reasons why I decided to go to the Parkinson’s Patient conference: to watch, to learn, to get in touch with reality. I don’t want to be a researcher that only researches for facts and publishable data, I want to have a reason for what I do, so I decided to try to dive into the reality of the people that live every day with the condition I am currently studying and researching treatment for.

Needless to say, it was heartbreaking to see this. To see the lack of expression in patients (the mask-like face is a symptom), the tremor, the slow speech, the freezing and difficulty in moving. But more than that, seeing the carers of the patients - many of which were hard, and probably they had to be so to survive in their situation. These are people - mostly spouses - whose lives were put on hold to live up to the promise ‘in sickness and in health’ ,that twenty years or so ago they walked down the aisle in glamorous garments to make. A life that would be marked by loss - even if not of life, but of freedom, of support, and of receiving love. People that have to find strength from the crumbs of what is left at the end of another day doing everything for someone else, strength to go on to the next day that will be equally draining, exhausting.

There was one couple in particular, however, that captured me; they laughed and smiled an awful lot together. Even though he had very, very impaired speech, she could still understand what he said and translate it to whoever was talking to him - jokes included. He laughed and made a point of doing on his own all he could. She smiled even talking about the hard things, and I saw the strength that no hollywood movie hero has ever displayed in any single blockbuster. A wonder woman, with kids, with a disabled husband, who still found strength for joy. It was heartbreaking but encouraging at the same time. I saw a hero.

That night, I came home having all the patients, the stories and the tears they shed talking running through my mind. People that have lost and are continually losing more everyday, either by symptom, or because people avoid them due to not knowing how to handle talking to someone in such condition. They not only lose health - they lose friends, family, careers. Very selfishly, the fear of someday being in such a condition, in either of the two positions - of the patient or the carer - was overwhelming as I prayed and thought about these souls I met.

The next day, I went to the Titanic Experience. A place that talks about the Titanic, from being built to the dreadful end. As I went in, I was assigned a passenger as was my boyfriend, and at the end we were to find out at the end if we would survive or not. As we walked in and saw the Heartbreak pier, where many families left the country, many people left all they knew to immigrate, and at the end sat in a replica of one of the life boats of the Titanic and watched a projection of the enormous ship, big enough for 4,000 people breaking and sinking - thinking of the 1,500 lives that were there, lost, frozen, drowned. In the end, my assigned passenger - who by coincidence was about my age, leaving her home country to make a life abroad - survived, was saved in one of the life boats. Jonathan’s passenger, also his exact age - which hit very close to home - was lost at sea. I thought about the passengers, the families, the loved ones.

Having all this frailty in mind made this week a somewhat disillusioning experience, but not in a bad way at all - literally, a freeing from illusion. I thought about the frailty of life here on earth, about how often we fool ourselves to think that we will not be the odd point in the statistics - the one with a diagnosis of Parkinson’s, Alzheimer, ALS. We will not be the ones on the sinking ship or crashing airplane. Those are places only for numbers - not for real people with real names, lives and dreams like you and me, right? Those are things for headlines, not for life changing (or ending) events for us, our family, friends or neighbours.

At the end of the day, as I saw my brazilian Valentine’s day timeline on Facebook - with extensive cute pictures of engagements, weddings, dinners and dates, promises of unending love, and even wedding invitations I could not help but quote in my mind the movie The princess bride upon the abundant overuse of the word Love: “You keep saying that word, but I do not think you know what it really means.”

I wonder if we were reminded that we are not untouchable, if our promises would be the same. If we didn’t feel young, healthy and filled with ambitious dreams, promises of “sickness and health, better or worse, in wealth or poverty” would still be the same. If we knew the darkness and ugliness of poverty, loss, pain, illness - if we knew what fate awaited us, would we still put our feet onto that ship sailing away from the last port of call?

Maybe we would, maybe that is one thing that is right about love - it is naïve enough to believe it can keep promises that otherwise would be unimaginable; or, perhaps more correctly, it is wise enough to know it can keep difficult promise regardless of feeling, but by choice.

Lastly, all these thoughts brought me to think of the one who is love. God.

It made me think of a verse that kept me going this week, “Be still and know that I am God”.

The original word “still” on the hebrew manuscripts for this text does not mean just stoping and taking a rest: It means allowing yourself to be weak, it means letting go completely and knowing you cannot do it. We need to know that he is God, and by knowing he is God, we are not trying to be God ourselves - we know that we are weak, that we are not untouchable. We know that our brains can stop, our ships can sink and that we cannot fix everything according to what we want - because we are just human. But that does not mean we stop, we through in the towel - it means we work, in spite of our weakness, knowing that there is One who truly is strong as we wish we were, wiser and more loving than we can even imagine.

Though we do not understand what He is doing many times - and most of the time have a very different opinion as to what He should do, it means the heavy burdens are no longer ours to bear, but his. We do what we can with what he have, trusting there is meaning in all the mess. And, in the end, even in our frailty, we can be a hero - even if silent, anonymous and that had no plaques, busts or even a name remembered - still, we are capable of extraordinary things. Through the strength that God gives us in true love, we can keep unkeepable promises, sacrifice our dreams to honour our loved one, or even sacrifice everything for a complete stranger and give them our spot on the last safety boat. Then, in his strong hands, even our weakness can be of extraordinary strength.






A note: I do fully understand these are just random thoughts, most likely excessively theoretical of someone very inexperienced to talk about most things here mentioned; I also understand that within 5, 10 or 20 years I will probably find most of this, at least naïve, if not plain stupid, but... well, you came into the blog (aka, graffitti with punctuation) at your own risk! Thanks for bearing with my thoughts thus far!