Up Your Nose with a 50 foot Rubber Hose

Another Beginning

Many caring people ask someone who has been ill, “Are you better?” “How are you doing?” Perhaps ask instead “Can I help?” “How can I support you?”

Everything is relative. After months of isolation and weeks of feeling tired and unable to breathe, I ended up in the ER of my local hospital again after 7 years, on April 4th. Admitted immediately, what was wrong was not diagnosed immediately. That took a week. The lungs, filled with fluid of malicious bronchial pneumonia with an underlying unidentifiable infection was the culprit, affecting the already strained heart. The medications to correct it affected the kidneys. My body was having a tantrum! Three weeks into the hospital stay, trying valiantly to stay off being intubated (no funsies), breathing with external oxygen 24/7, unknown to me, wheels of change were turning inside my being. Through errors and misjudgments of overworked hospital staff, I had a hypoglycemic crash with a glucose of 27 (too low) when I was discovered cold and unresponsive on the morning of April 22nd. After an hour of revival techniques to prevent a coma (remember Klaus von Bulow?) and another 4–6 hours of shaking physically and emotionally, I was discharged the next evening and came home, battered and bruised, to two of my adult children.

I have had unsupervised diabetes for 25 years and unmonitored congestive heart failure for 15 years. My trauma history had caused this crisis, preventing me from seeking whatever medical care was available even though the medical-pharmaceutical industry does not make it any easier on patients. So for the first 3 days home I was terrified of eating *anything*: no sodium, no carbs, no sugars. I have not informed myself of what any of that entailed, preferring to just cook healthy food for others at their request. After 2 days of struggling with saltless food, doing egg and tofu and bean proteins with research help from a daughter far away, kitchen prep by the daughter in Los Angeles, and constant vigilance and caretaking from the son who moved into my home since the day of my hospital admission. I began to eat food which I couldn’t cook at the stove thanks to the 50 foot oxygen hose that leashed me. So microwave and a new InstaPot to the rescue. I knew some internal switch had been turned on, like my entire physical and mental systems had rebooted, none of my old Apps worked any more, and this makeshift change was not going to cut it. Suddenly one night Tom Hanks harpooning his fish dinner on a deserted island made all kinds of sense and I cooked chicken that Anand had bought in anticipation of this growth perhaps, cooked it and ate it because after 67 years of being a vegetarian I wanted to live! After finishing the chicken in 6 meals, I’ve made turkey chili (so good), and yesterday I made fish. Who is this woman in the mirror, looking back at me in wonder and disbelief?

All day goes busy checking glucose, O2 saturation, blood pressure several times a day. Occupational therapy and physical therapy started this week. The phlebotomist came to the house to draw blood. Thanks to the oh-no-I-almost-died-again crash on April 22, I have a wonderful new primary care physician, a hospitalist who was competent and compassionate, and an endocronologist who is about to bring me into the 21st century of diabetic care. These are all smart and savvy WOC. I tell my little fingers to hold on till the end of the month when I may be able to get the prickless glucose testing patch and a tiny insulin dispenser that can monitor and supply insulin as needed after I have been weaned off the steroids I’ve been given to support the lungs. Been living in the past was bad enough, but this pandemic exacerbated all sense of time and beingness. There are multiple doctors’ visits scheduled all this month for which I have asked for and received ride offers since I am not yet driving (have you seen the size of an oxygen tank?).

I have been kept afloat by the small loving community that has gathered around me for many years, a community from whom I never thought to ask for help. But for the first time since I have lived in this home (8 years) I reached out to neighbors for an oximeter. Their response has changed my world and world view. Trust issues from childhood are being processed as the fluid dries from my lungs, fluid is shedding from being kept captive on my belly. Today in the shower I got the last of the adhesive off my skin where the ECG leads were attached and I was sent home with the buttons still stuck on my torso. I am grateful and privileged to have received medical care, oxygen, and a homecoming that has not happened for a multitude of people this year. I am undoing the internalized unknown shame attached to disability and vulnerability. All days are not the same, but there are more ups than downs. Harper Thorpe and Roy check in regularly. Author James Sie sent flowers to my DOU room and he was right, it cheered me up. My heart is filled with love for the people who have taken me on a journey of self discovery. I’m back with my therapist to process these changes and grateful for his support. My greatest gratitude is for the 3 adults who raised themselves, and who are now raising me, with partners who in turn support them. There is a shared WhatsApp thread for just the 4 of us that daily updates go out on, with much applause and encouragement, with GIFS and jokes, and pictures of my food laden plates. Videos of our toddler to keep our spirits up. Soon, I hope to be raising myself. Doing everything I’m asked to do. Eat, move, dance, live. Be alive.

Goals: I would like to learn how to swim, to ride a bike, to walk a mile again. By the time I’m 70, I want to be in the best shape of my life. I’m watching Bunni almost completely blind, losing her hearing, in the last stages of lymphoma, her tonsils too swollen to eat and her mouth bleeding too much to want to eat. I hand feed her tiny bites of turkey, and cry the tears of a coming goodbye. And I’m grateful and privileged that she found me when I needed her most eleven years ago. I love you Bunni girl lady.