Day 19: What if...

I began this journey 19 days ago, just short of 3 weeks. I use the word journey instead of vacation or trip, because that is truly what this experience has been: a journey. Nothing less, nothing... well, definitely nothing less. I cannot say, “nothing more”, because could very easily be a lie when I re-evaluate at the end of my journey. Again, I’m actively avoiding the words vacation and trip because they don’t grasp the full meaning; they just don’t cut it. But I guess I could use some other appropriate synonyms like adventure and quest, in the interest of not being monotonous. A journey is significant because I am not only contributing to another culture and society, but I am also learning. I am not sitting on a beach sipping a cocktail with the bright sun shining on me (which, of course, would also be a great time and should be done by all). I’m being active in a place that I previously had no ties, connections, or responsibilities to.

19 days, out of 31 total. If someone had asked me back then, at the beginning, if I would ever enjoy the specific volunteer placement I was assigned to, I would not have been able to give an emphatic “yes”. Let me explain, because there are parts that I knew I would enjoy. Working in a hospice like Mother Teresa’s is a perfect fit for me. As morbid as it sounds, I am drawn to the idea of helping and being of comfort to those who are dying or will in the relatively near future reach their last earthly mile marker. Easing a person as their life comes to an end is difficult; it is not meant to be easy. But it is vital. Dying in pain, whether it be physical, emotional, mental, or spiritual seems inhumane. I believe peace comfort, and a freedom from pain should absolutely be in order in that circumstance. That is why I am so drawn to palliative care. It will never be the most glorious or uplifting of medical professions, but that (combined, of course, with geriatrics) calls my name with a booming voice that I cannot and will not ignore. I have seen death before, and I know I have a calling there.

So, at first glance, working at Mother Teresa’s Home seemed to originally be right up my alley. But 19 days ago, I learned I would be working on the children’s ward, working with severely disabled children who were near death or very soon would be. Now, those of you who know me realize that dealing with children (outside of my family) was never my forte. Give me an elderly person any day, and I’m in heaven. Therefore, I was disappointed to learn that I would be working with children. In a way, I know that attitude was selfish. But I knew that children were not necessarily a priority of mine. And working with disabled children just seemed cruel, for me and the kids. These kids, who are as innocent as can be in every possible way, are severely disabled. They will never have a normal life like most of us are used to. They have cerebral palsy, quadriplegia, autism, Down’s Syndrome, various forms of mental retardation. Their potential for opportunities in life were almost completely erased when they were conceived, and when they were born. They simple don’t deserve it. It is an unfair punishment that none of them perpetuated. And on top of all of this, they are dying, their lives cut way too short.

How was I going to do it? I thought it was impossible for me. I dreaded my first day, wondering if I would be able to handle it. But I did. I thought of each individual child, what could possibly be going through their minds, what my presence their could mean to them. And if you have been following my blog, then you know that I have more than just handled it. I have enjoyed every minute of my journey thus far. In two and a half weeks, I have fallen in love, unconditionally, with the children I work with. I look forward to working with them everyday. And when my working hours are over, I wish that I could stay longer just to be with them When I am away from them, I want to be with them, feeling guilty that I’m not there. With multiple disabilities and death somewhere on the horizon, these children are bundles of joy that have changed my life in ways that I never could have expected. In many ways, I wish I could trade places with them, to give them freedom from their conditions, to allow them to live a life of a “normal, healthy person”. They did not choose this, and I truly wish that I could do more.

Ask me that same question today that you asked me 19 days ago. And now I will give you an emphatic “yes!”

One tool that I have used to get me to this point in my journey is imagining “What if...” scenarios. They have certainly helped me to cope with the emotional roller coaster ride that this adventure has put me on. I would like to share some with you. Imagine yourself in each and how you would feel and react.

Imagine you are paralyzed. You cannot walk. You do not have control of your legs, maybe not even your arms and hands. You cannot perform daily tasks like cooking, feeding yourself, dressing, washing, going to the bathroom, brushing your teeth. You cannot play with other kids your age. You have to sit on the sidelines.

Imagine you are in a wheelchair. Imagine you are confined to the chair, and do not even have the ability to move around in it. Your hands are useless. They can’t find the wheels of the chair, and even if they did, they do not have the strength or coordination to move anywhere. You are trapped. You have to depend on someone else for your daily needs, in every possible aspect.

Imagine you can’t speak. You cannot use your voice to communicate verbally, which most other people use as their primary mode of communication. You try to speak, to cry, to laugh, in an attempt for some sort of contact. But it is futile. You want to speak, but your brain just isn’t cooperating.

Imagine you are blind. You cannot see anything except for the occasional flash of light in the morning when it is time to wake up. You do not know what your surroundings are, who is around you, because one of your most vital senses has failed you. You cannot see the beauty that this world has to offer. You cannot easily participate in your environment because you don’t know where you are, what is around you. You are a bystander while the rest of the world zooms by.

And for the finale, imagine all of the above scenarios as one. What would your life be like? What would your thoughts be? How would you react? How would you cope? How would your life be positive, even in a small way?

When I think of the sum of the scenarios, two words come to mind: helpless and hopeless. Saint Jude would have a field day. I’m helpless because I can’t take care of myself. I am completely dependent on the people around me. Every aspect of every day is spent upon the whim of those who care for me. I’m hopeless because there is no way out. I will be plagued by this condition for the rest of my life. There is no cure. I will never be normal. (Just as an aside, there is a distinction to be made here. The children I work with have been disabled for their whole lives. They never knew what it was like to be a normal, healthy child. Having disabilities is all they know. Perhaps, if they do not know what they are missing, the effect isn’t as catastrophic. But there is no way to know for sure.)

I would like to introduce you to a 12-year old boy named Andy. Andy is a resident at Mother Teresa’s Home. Remember that summed up scenario I asked you to contemplate? Well... that’s Andy in a nutshell. Andy has cerebral palsy, so he has very limited motor functioning. He is confined to a wheelchair and cannot move himself around because he doesn’t have the arm strength or coordination. He cannot speak due to a mental disability. And he is blind. On the outside, Andy is presented as a shell. There is nothing spectacular about him upon first glance. When I first saw him, I was surprised at his conditions, but I didn’t think anything more than that. I’m afraid that is how many people view him without taking the opportunity to work with him closely. But something about Andy drew me to him, and I decided that I wanted to work with him closely.

Andy has a kind, gentle, innocent face. There is no anger, remorse, or sadness present. When I approach him, I announce myself by saying hello and asking how he is. Of course, he cannot see me, so I have to use other forms of communication. Even though he is blind, his eyes are vibrant. They move around in their sockets, trying to take in his surroundings, but to no avail. His sense of hearing is intact, perhaps even amplified due to his inability to see. He doesn’t like loud noises; they frighten him. He has no idea of knowing what those sounds actually are. He likes his face to be massaged, an act that always coaxes a smile. He has to be fed slowly because he needs ample time to chew and swallow. He is a messy eater, sometimes spitting food on himself or me. Of course, this doesn’t bother me; it’s all part of the experience. When done eating, he does not like his face to be washed. Maybe he doesn’t like the abrasive feeling of the washcloth on his skin. But it has to be done.

From my experiences changing his clothes some mornings, I have noticed scars on his body all around his pelvis. I realize that these scars must be from surgeries that he had on his hips, just one example of the tribulations that he has had to endure in his short life. Andy likes to be tickled, mostly on the belly, but also sometimes under his chin. A fulfilling feeling is evoked in me when I make him chuckle or laugh.

On one of the walls at the Home, I noticed a picture of Mother Teresa with a quote: “El mal mas grande es la indeferencia.” In English, “The greatest evil is indifference.” The idea of not caring for or worrying about these children, for me, at this moment, is evil. I can no longer imagine a life for me in which I wouldn’t work with these children. Their effect on me is permanent, even more so than a tattoo. I have grown attached to these children, especially Andy. I wish that I could do more. I know that my presence here is positive and helpful, but, in the end, it is temporary. I wish I could do something permanent and everlasting, just as these children have done for me.

Just a week and a half left here in Lima...