Why me? Well, why not me?

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was 
oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, 
the more joy you can contain.. ---Kahlil Gibran

Myasthenia gravis affects 2 to 7 out of 100,000 people in Western countries according to the Muscular Dystrophy Association, and is considered a rare disease. It is not contagious and affects more women than men, between 20 to 40 years old, although it can occur in persons of any age, even children as young as two. The disease varies in severity from one person to the next. Some people have weakness limited to facial muscles only. Others have weakness in their arms, neck and legs. Others have predominantly swallowing difficulties. I happen to have the most severe version of it, since I have it all, but mostly it affects my breathing muscles which can quickly lead to a crisis and a trip to the ER plus several days in ICU. There are no known causes of the disease, so even if I would like to point the finger and blame someone (my parents? distant cousins twice removed? my great great grandfather?) or something (was it the water? was it the street food I ate back home? was it from all the caffeine from Starbucks?), there is no real reason for me to. Which leaves me free to blame the heavens, the universe, God, or Allah, or Buddha. Why me?! I just want to be a regular mom who drives her kids to parks and parties, shops too much, tries to go to church every Sunday, drinks too much short Cafe Americanos with extra room, and travels once in a while to fun destinations like the beach. Why do I have to be the bearer of a such a strange illness with no known causes, no cure, and not enough information to go by? Why do I have it, and why did it come out when it did?

I grew up Catholic and went to a Catholic school from elementary to high school. I don't know how it is to have gone to school in a non-Catholic or public school, but the lessons I have learned in the classrooms about God, prayer, love and fortitude have imprinted well in my young mind, along with math, science, reading, art and history lessons, and have forged an inner strength that I am only now beginning to discover. I owe a huge chunk of my mental and spiritual strength to the teachings of the kind nuns and religion teachers. Thank you Sister H (R.I.P.), Sister S, Miss V and many others.  I was also raised by a set of parents who continue to show me to take whatever life brings and make the best of it and continue moving forward. They are now in their seventies, and while plagued with their own share of health and aging issues, continue to travel everywhere and enjoy life with their tight-knit circle of caring friends. They did not always live a comfortable life. They have survived a cancer scare, among other illnesses, and their house burning down many years ago where they were left with almost nothing--thank God no one was home at the time and no one got hurt. But they soldier on, armed with a strong faith in God, a positive outlook, a great sense of humor, and an unwavering belief that all things--good and even sad, unhappy events--happen for a reason.  Pity parties are simply not in their vocabulary. And so I am actually proud to say that the episodes of me screaming "Why me, Lord?!" during difficult periods in my life tend to not last very long. It did not last long when I was told I have MG for the first time either. Because in the quiet of my mind, after all the initial tears have been shed and the constant worrying and asking "why me" fade in the distance, another question gently rises up from the depths and whispers back, "Well, why not you?"

Well, yeah, why not me? When MG entered my life, I was already a forty-six year old mother of two healthy children. My husband has been blessed with a stable job that lets me stay home with my kids in a comfortable house, and his job provides a fairly decent health insurance. One of the many kind nurses at the hospital also told me that I am lucky because I also happen live in a part of the world which is one of the best places to receive treatment for this rare disease--here in the northwest United States, where within thirty miles of our address, there are at least 23 hospitals, many listed among the top hospitals of my state. Twenty three! Many countries in South America, Africa and Asia, sadly do not even have access to basic healthcare for the most common of illnesses, not to mention access to clean running water. To top it all, I was diagnosed correctly within ten weeks of the onset of my symptoms, and I am now in the hands of a competent neurologist. Ten weeks! A person from a local online support group I recently joined told me that most patients do not get correctly diagnosed for many years. From this perspective, I have really nothing to complain about. MG from my standpoint is a just a small bump on the road. But what is the purpose of this bump?

The purpose of this bump is that it is a burden but it is also a gift. It is a burden but a very light burden at that. I am not even the sickest person I know right at this moment. While I do get tired very easily these days, I have no pain, other than the discomfort of my incision that is still healing from my recent thymectomy surgery. I still cannot drive because of my weakness, but then I get to stay home and just chill with my children, laugh with them at funny Youtube videos, write, cook, draw and paint once in a while. I have slowed down but I have not given up anything else. More than a burden I now realize that my illness is also a gift--a gift to see life more clearly than I did before, like I was looking through an unwashed window all my life, not realizing it was dirty, until that window was suddenly wiped clean. Now, the sky is not just blue, but a beautiful shade of cerulean. The  leaves of the cedar trees are a brilliant verdant green. The single peony that bloomed in the front yard is a source of great joy. I marvel at every new word my younger son learns everyday, and I notice more closely how his eyes shrink to slits and his cheeks ball up when he gives me his funny toothy smile, how rosy red he would quickly get after a few minutes in the sun. I thank God everyday for every morning I wake up breathing deeply. I am grateful when my strength picks up in the afternoon so I can sing and dance with my little one when his favorite TV show Space Racers is on and we both shimmy to the theme song. My older teenage son has also begun to be more attuned to my needs. He would now do chores around the house without me asking, and even volunteer to babysit his little brother when my energy wanes. He researches ways for me to be able to get to the hospital more quickly. My husband has become my hero in every sense of the word. He and I have become closer than we have ever been in our entire married life since my illness. I am kinder to myself. I am kinder to others. I eat more healthful foods. I no longer go shopping as much. I have stopped obsessing about a having a clean kitchen sink when I go to bed at night. I am more patient towards my family. I am more compassionate towards those who are suffering physically, mentally or emotionally. I now refrain from judging anyone, especially since I have come to realize that we are all fighting some kind of battle in our lives every single day, even when we do not show it on the outside. I am more grateful for every kind word and gesture from friends and loved ones. I pray more. I am beginning to see more joy and love, everywhere, all around me, and I am overwhelmed with an indescribable sense of peace and the knowledge that come what may, everything will turn out okay.

But what about the timing of my illness? Why now, and why not earlier in my life or much, much later? If my symptoms had appeared sooner in my teens or my twenties, I would probably not have been properly diagnosed. I would probably have been in a place where I would not get the help that I need. I would probably have decided not to have children, and might have shied away from any meaningful relationships. If my symptoms had appeared much later, then I would not have known that I have tumor in my thymus. While the tumor has been found to be mostly benign, thymic tumors are mostly asymptomatic. But mine was threatening to escape outside of its capsule, and if it had not been removed soon after its discovery, the tumor may have eventually spread to my lungs and my bones. I will never truly know what might or what might not have been, but the timing seems to have worked out very well in my favor. I also realize that these are all not accidents. This path has already been laid out before me, and where I am right at this moment is where God wants me to be.

Why me? Next time we ask this of ourselves when we are facing our hardest trials, maybe we should also stop and ask ourselves "why not me" and be amazed at all the answers. Thank you God that it has been me, and I will forever be grateful for this gift of grace.