Thursday, April 20, 2017

Tolerating Distresses in Life, Major Illnesses Included

My son Julien, a couple days old, January 2016

The birth of my son in January 2016 coincided with a battle for my life. How to stay resolute? I would have to dig deep and summon all the goodness that I had witnessed hereto in my life and in those around me. Gratitude for my son, amazement that he saved my life, awe in a bizarre, bigger plan. Without circumstances falling as they had, I would be dying now. At the time of my diagnosis when he was just 5 weeks old (and up until my colectomy nearly two months later), I did not know how many options I had left.

“The nonpermanent appearance of happiness and distress, and their disappearance in due course, are like the appearance and disappearance of winter and summer seasons. They arise from sense perception, and one must learn to tolerate them without being disturbed.”

This verse (2.14) of the Bhagavad Gita is beautiful in its universality, in its meaning, but it is also harrowing. It is beautiful because it represents a relationship with a source of peace -- such that it is well with the soul even when the boat is rocking. It is a bit like Jesus telling his disciples to not focus on the storm. It promotes balance through the awareness that all things shall come to pass. Knowing that impermanence is a fact of life brings wisdom and acceptance: one understands that what is essential are things like harmony, grounding, staying firm in one’s faith. I learned even more this past year that we are wise to accept all gifts and trials in life with this perspective. I learned this through my very real health battles and trials this past year. One may be worried or deeply stressed (as I was about a genetic life-threatening disease discovered weeks after I gave birth to my son), but we are encouraged to not focus on the swirling flux and chance in circumstances around us. This verse, like life itself, drives us to search for what is long-lasting. As the Little Prince said, “That which is essential is invisible to the eye.” Throughout my life, I have definitely felt a presence buoying me, saving me, rescuing me, looking out for me, guiding me, gifting love to me; I call it God, and believe He has guided me through the toughest times. Let's say that He gave me my son at age 39, when I thought I couldn't have a child anymore, and this saved my life. Basically, there were not many crises in my life that were surmounted without asking for God’s help - and for this last crisis, I was joined in prayer by so many brave, good souls. I cannot thank people enough for the prayers said for my health and recovery. Even just asking for God's help brought me hope and steadiness where things were bleak.

This verse offers a unique perspective on life’s stresses: happiness AND distress are both sense perceptions, and we "must learn [learning is a process] to tolerate them without being disturbed." And because life’s stresses can sometimes be so devastating, this verse is also harrowing because life can truly bring you loss, great loss, and none of us are totally exempt from such heartache. I am not speaking of simply a bad day, but of something so bad as say, the separation of parent from child, for example. Why does a mother worry so? It is because her whole heart is invested in her child. How is it possible that in this world, for example, a child may lose his or her parent, or a parent lose his or her child? How to reach a point of tolerating such a loss as the world may choose to throw at a person, even a good person, is quite a challenge. I take this “distress” to the extreme, because I do not believe that sacred texts are dealing with superficial experiences. At least, I hope not. I am not sure how I would deal with such a distress as the one above (I have dealt with similar ones, and the grief was intense enough), and yet that is the deepest fear I probably have. Each day that I waited for biopsy results was torture, and the not-knowing of if we would catch it in time to save my life. And my life had just become my son's life.
My son and I, weeks after my first surgery

Perhaps this verse is dealing instead with normal stressors, and not the deeper tragedies of life. But even in tragedy, one must root oneself all the more in something like faith – and be honest in that faith, even if angry with God. Because anger is a movement. Anger never really seems to last. I was not angry with God when I received my diagnosis. I knew to ask Him for help, and I prayed that my son would not be without a mother most nights as I lay awake worried.There are many times where I do not talk to God, but it does not mean I forget about him. God is always benevolent. Even in the silence, even with the clouds, we all know that the sun is still there – and that God is, even more so. Thus, the light that God gives is everywhere. We just may need certain rays to be highlighted for us. Gratitude is stopping to be like, Wow look at that! that must have been divinely influenced how that cool thing happened! And the more we appreciate what we do see or feel of God, perhaps the more we recognize it. I cannot help but see how all things conspired for my life to be saved, in some weird way, for some unknown reason. I just know that I would be finding out I had colon cancer right about now if I had not had my son. Being pregnant brought about the symptoms that I never had, though the polyps had been growing for over two decades in my large intestine - which explains why some of the thousands of polyps were as big as 2cm and high grade dysplasia. The key to getting through seasons of distress and of joy: giving gratitude through it all, and knowing that one can always find recourse in divine love. We can always turn to meditate on that. And the more we store up our recognition of God’s love, the easier it is to return to those moments in our mind when we need that faith when the skies are darker.

So, I guess that what I have learned after years and years of struggle and of relationships, and most recently, of a very trying health battle, is this: Where there is evidence of strong, pure love, it is hard to focus on the darkness. And I guess that that is how I feel about life. There is strong pure love we have all been shown, and that love, God’s love, is greater than anything He allows to happen to us. Therein is my peace. It may not solve problems, but love is there for the taking. And that taking is for when we are ready for it.

And now, I will share a journal entry I wrote one year ago today, following my total colectomy where the surgeon at Memorial Sloan Kettering robotically removed my large intestine... This I do to commemorate something so awful and amazing at the same time, but in some ways... it was another rebirth. It brought me spiritual wellness, strength, faith, love, and gratitude. My 40 days in the hospital this past year, my ER trips, my worries, my health and bodily problems and issues taught me the meaning of the verse above: I can honestly say it was much more graceful and easy to tolerate the distresses I had to endure (and even joke about them with nurses and doctors at times) than to fight or bemoan them. Doesn't mean my heart was not wasted for missing my son while being almost incapacitated and helpless for two weeks in the hospital and for days here and days there. It just means I tolerated these sense perceptions and focused on the prize.

Here begins my writing from my hospital bed:

Recovery
Journal entry by Domenica Newell-Amato — 4/20/2016

Entry 5.

Greetings from the recovery room. The operation was an open surgery and began yesterday morning and was over seven hours. I am told it went well and that the connection was good. I went with the jpouch. However, I have the ostomy bag now and for three months approx. until my second operation. I have not looked at my stomach but I know he decided to cut me in one vertical line, about 6-7 inches if I recall what he had said Monday.

I am alone now for a few hours (with exception of roomate and her visitors on other side of curtain) and felt like writing, as I asked my mother to be with my baby over me, so he will have more comfort and someone who reminds him of me. He is in good hands with his father, and great-grandmother, but his father goes back to work tomorrow and friday. When I left for the city I bathed Julien's head in tears. Looking at his photos and thinking of him bring me joy while here.

I had to fast Monday and yesterday and cannot eat yet today. Yesterday morning in the surgery prep area was full of jokes and cheer. My two nurses were from Ireland and so sweet.

Then I woke up post-surgery in recovery room, not nearly as nurturing an arena.

My mother and best friend, Carol, were right there, with time only for a quick hello before they had to leave. My mom relayed info from surgeon about how it went well, the connection was good, and it was 7hours long. I'm not sure what happened next but two nurses came to wheel me to my room. In the elevator they talked only to themselves and I got the feeling they didnt care much about me. They wheeled me into room where I am now and said, here's your call button and the pain button and literally left. I felt like I had just gotten out of Vietnam and no one cared. I couldn't wait to see my mom again. I don't know how long it was. I think I hit call button and said I needed to talk with someone. It took awhile, and so I think I was crying when nurse arrived. I said I needed to have my bearings... Nightime was awful, so much pain. Pain as a word achieved a new meaning for me. The hospital bed is horrible on your back, and with my abdomen in such pain I could only lay on my side. For maybe an hour at a time, and so that is how I slept: interrupted. Then, a roomate was wheeled in late at night. I had a hard time emotionally, and physically. I have an epidural in my back and two drains hanging off my front that collect blood and fluids from surgery, I have something in my butt, and of course an ostomy. I only discovered all this in stages and as I moved or had leakages.

In the morning, I was doing my usual side switch roll - very carefully - when my hand went in something... My ostomy bag had come off and I had my own waste on my hand. I called for nurse and began crying, slow whimpering. Just cuz I was alone and in shock I think. The nurse came and told me it was going to be alright and cleaned me up. Soon after, my mom came. I was still upset at how callous the nurses on this floor had been, and she assured me she'd call me dearie and sweetie and be there. So much pain still, I had told nurse, and she would walk out. I felt like I was in the middle of a conversation. But when I looked she was gone. The nurse from the night before was like, yea you're in pain from surgery. Finally, a pain nurse came to check how I was doing and responded by changing my medication.

after some napping it was time to walk. I thought this would be impossible, but I was able to make it a little ways down the hall holding onto my iv pole and Rosalie, a nice lady. I started overheating and said ice, ice. I need ice. It was too late. I was about to pass out. I said so, and went slightly limp. Rosalie held me tight and called for a chair. I was fading and seven people surrounded me and slid me in chair back to my room.

Another nap, and my surgeon and his team came. He told me that over time, my output would have consistency of pesto. I started to laugh and it hurt, he told me he says this to all his patients, not just the Italian ones.

i'm going to stop here, as I'm exhausted. Thank you all for your thoughts, prayers, and caring.