Redlining

The difference between a sprint and an endurance race is that in a sprint race you keep your heart rate anaerobic the entire time, riding the edge of physical breakdown and peeling back your eyelids in discomfort until you hit the finish line. In an endurance race you keep your heart rate aerobic the entire time, rarely spiking into the red so as to go strong and steady for many hours. My father has been in the hospital intubated, sedated, and in very poor health since an acute attack of pancreatitis the night of his mother’s funeral service two weeks ago. His medical state has required us to respond in a sprint fashion while in truth we are looking at an endurance event.

Initially the inflammation of his pancreas was so bad that breathing was excruciating. Taking tiny, quick breaths was the only way he could breathe but this wasn’t getting enough oxygen into his system to clear the buildup of acidity. Finally after two days his doctor made the decision to intubate and fully sedate him, which involved inserting a tube down his throat and connecting him to a ventilator. The sedation was necessary because people generally fight the ventilator, often extubating themselves by pulling out the tubing. Think Neo in the Matrix waking up in the battery pod.

The day they intubated my father my mom and sister had been trying to reach me but couldn’t get me on the phone. They reached my in-laws and relayed just enough information so that my mother-in-law drove to our house at 5:30 in the morning to wake us. Our house was still partially in boxes as we were in the middle of a move, and since my wife was starting her major paper for her graduate degree I was handling the packing and logistics. We found space among the boxes and called the hospital in Washington, D.C. I was shocked when they put me through to my father – the last news we had been given was that he was already intubated. I managed to get about three minutes on the phone with him, enough to tell him I loved him and his only job was to get better. Shortly after that call he was intubated.

I had just seen him eulogize his mother in Philadelphia, the funeral coming right after my 35th birthday. My early birthday present was a group of thieves stole my roof rack off my car. January was shaping up nicely. Here’s the chonology:

January 6: decide to move. Give notice.

Friday January 15: locked roof rack stolen off my car in daylight in front of my apartment.

Saturday, January 16: find out my grandmother is not well and has been moved from in-home hospice to a hospice facility.

Monday, January 18: buy plane ticket to Philadelphia to see grandmother one last time.

Tuesday, January 19: grandmother dies.

Wednesday, January 20: my 35th birthday. I get a migraine at dinner, muscle through by combining downers with wine.

Thursday, January 21: fly to Philly, rent car, pick up cousins for funeral

Friday, January 22: graveside memorial for grandmother, reception at uncle’s house. Spend most of the time talking with uncle about his understandable frustrations with his brother.

Saturday, January 23: fly home, turn on phone at LAX to voicemail from my mother that my father collapsed and was now in the hospital.

Sunday, January 24: his condition worsens, we are now on death watch.

Tuesday, January 26: buy plane tickets for Thursday to see father. Later in the day while in driveway to new house receive troubling call from mom, we change flight to red eye leaving that night.

Wednesday, January 27 through Saturday, January 30: couch crash at mom and dad’s house (sister has guest room), spend days at hospital holding father’s hand and digesting medical status from nurses and doctors.

Sunday, January 31: cry for help to friends to help us move. I am shellshocked and cannot plan or process anything. Friends pack our apartment and move it to new house.

Monday, February 1: movers arrive and take 8 hours to move the rest of our crap.

Tuesday, February 2: finish moving remainder of stuff from old apartment, unpack into new house as quickly as possible.

Do all of this in worst rain storm in L.A. in years, and massive blizzard in D.C. strikes as we leave. We had the last flight out of D.C. before they closed the airport.

While we were in D.C. we got a lot of good information that helped us understand my father’s specific condition. He was looking at two distinct danger periods in his admission. The first period began at his check-in and subsequent intubation. He could die of heart attack or organ failure from the stress of the inciting incident. He could also develop an infection that kills him. If he survives the initial phase of treatment, progressing enough to come off the ventilator and breathe on his own with stable blood pressure and oxygen saturation, then he can look forward to phase 2 where his pancreas could still die and become necrotic. In this second period he could die of several different kind of infections. How long are these periods? We’re still in the first one and it’s been more than two weeks. His doctors have said he’ll be in hospital for at least three months.

When someone has an accident and goes to the hospital their friends and family can rally quickly and react to that emergency. Work can be taken off, food baskets delivered, couches crashed on, favors cashed in. There’s a binary outcome for the person – live or die – and the result is often known in a few days. The person wakes up, sees their family around them, everyone cries tears of joy, life goes on. Or they die and the logistics of the funeral, grieving process, and predictable difficulties progress. Life goes on.

You can survive a sprint race because you know it will end. It’s a short duration of high intensity. You train your body to withstand extreme stress and you train your mind to endure the pain because it will end quickly. In fact, the more pain and stress you can endure the faster it will end. You can survive an endurance race because you work at a lower but steady intensity, one which you can maintain theoretically forever given enough food and recovery periods. But even that race, eventually, ends.

We flew to D.C. expecting to finish a sprint. Instead we have discovered this sprint has no end point. We could be in this life or death period for a very long time. Emotionally my entire family is now in trauma. Every call could be the one telling us he has woken up or died. We are redlining all the time, my mom doesn’t have to make many decisions regarding his treatment which means she’s not in control of anything. I am a lot like her, I need a job, a task on which to focus or I spin out of control.

I wish I could be a positive thinker in these times. But every time the phone rings and it’s my mother I wonder if this is the call where I find out my father is dead. I am waiting for confirmation of my worst fear. I understand this isn’t healthy, but it’s very hard for me to look at my father’s condition and see a positive outcome. Of course, if he does wake up, what’s waiting for him? A family looking back saying, “well, that was unexpected”. And if he does wake up and eventually walk out of the hospital he won’t remember any of this. The drugs and his brain will do a wonderful job of erasing all of the pain, all of the ups and downs, it will become a big blur. I have learned in the last few weeks the ocean of difference between intellectually knowing something and emotionally knowing it. I have said for years, “no one’s ever prepared to lose a parent”. I can say it a thousand times and know it is true but without going through it completely I can’t know what it really means. It’s also not a club I’m in a rush to join.

I finally told my mother I was having these thoughts. Because of emotional fatigue I don’t have many filters in place so I can’t tell what is appropriate to share or not with her. What we realized in talking is that the root of the negativity is not pessimism, it’s a lack of control. I can plan a funeral. I can plan for a life without him and what it means. If I plan for a bad outcome I’m better prepared if it happens. A positive outcome is easy – joy, celebration, relief. The other one can be crippling if it’s not expected. And so I find myself planning for his death, even though it’s not a foregone conclusion.

I hope my father lives through this. When he emerges on the other side he will be a man that no matter how fit and healthy a life he leads will still be susceptible to pancreatitis attacks. Like his first hospitalization he’ll have little to no memory of this time so he won’t have a tactile experience to draw on to change his behaviors.

My birth mother is a type 1 diabetic and for many years she used her illness as a weapon against her loved ones. I grew up hating her and her illness. When I met and married a woman who has a chronic illness, migraines, I had to learn new tools, separating the illness from the person. Moreover, I learned that someone who has a chronic illness can do everything they can to prevent an attack but ultimately they will still get sick. Ironically, this was driven home when I started getting migraines without a specific causality. Once I split these thoughts apart I understood that my birth mother was a physically and mentally ill person who was often not in control of her illness. My anger and hatred melted away.

My father has a partial pancreas and will get pancreatitis again. He can live a healthy life. He can lose a lot of weight and take preventative measures. But he will get sick again and he will need hospitalization again. We may even go through all of these terrors and ups and downs again. It’s a thought of the future that resists optimism.

My father and I have had many discussions about his privacy and how he appears in my writing. I have said countless times that it was his near death experience that was my catalyst to change. I didn’t want to wait until I was hospitalized to lead a healthier life. But I respected his privacy and stopped writing about the personal details because I saw that it was causing him too much pain.

My hope is that he lives through this ordeal to be angry with me for writing this. I want to read his comments, I want to have the discussion with him about where his privacy ends and mine begins. His life directly impacts mine and in writing about my life I cannot censor or remove a very large element. I know that he would be proud and overjoyed at how his family has come together. While in D.C. my wife and I went out to dinner with my mom, my sister, and her boyfriend (who has been incredibly supportive to both my sister and our family), and we were sat at a table for six. My mom and I stared at the empty place setting for a while until we both just snatched the plate and utensils away and hid them from view. We both knew who was missing from the table, but the empty place setting was too much of a reminder that the person who would have enjoyed the family congregation the most was unconscious, sedated, fighting for his life miles away.

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3 responses to “Redlining

  1. wow. that needed to be written, for you and those who care about you. your friends are here for you.

  2. Thank you for writing. I’m sorry you’re going through this. My love to you, Sofia, Helen, Eden and Stuart. It’s a lot all at once. Your words touch my heart. xo

  3. I am so sorry to hear you go through all this…My thoughts and prayers are with you Max!!!

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