This Scientific American article, about cellular bioelectricity and regeneration, resonated with me.
To get a feel for Tufts Biologist Michael Levin’s theory
The article prompted me to write this related story by giving it some scientific validation. I’ve been creating a series of blog posts and presentations about health in consciousness and specifically how it relates to my personal health crisis and subsequent, against-all-odds, recovery. I’ve postponed this one until now. But it needs to be told.
To summarize: On 9/10/11 I was stricken with a rare and deadly auto-immune disease that landed me in ICU in total renal and respiratory failure with low chance of survival. Fortunately, I’ve made a full recovery. This particular aspect of my health crisis has been the most difficult one to remember, to understand and to communicate. It was a mind-blowing experience and reflection upon it brought up PTS. So I de-focused on it until I’d recovered. But it seemed hugely important. I wanted to face it, meet it head on, but didn’t know how to do that. And then, out of the blue, I remembered a piece of long-forgotten advice from someone who I’d once looked up to. That advice was:
“Mary, feel your power.”
Did I ever.
Its no surprise that ICU is not an easy experience. I was in for a week and at one point had 14 machines keeping me alive in addition to treatment with massive doses of chemotherapy, steroids and knockout drugs like propofol, necessary to keep me in a sedated, hypnotic state. I was greatly relieved to come out of ICU but almost lost my sanity in the process. Once the drugs wore off and I was able to breathe without the ventilator i had to deal with “powering up”. For the next 36 hours, every 20 minutes, I’d feel a surge of electrical current through my body that was so intense I could only describe it to the nurse as “being tasered”, but it lasted a lot longer. It was more exciting than painful but the power surges quickly became intolerable and after a few hours I was pleading with everyone, to just make it stop. But it didn’t stop.
My son, who never left my side for the whole ordeal, tried to get help for me but the ICU caregivers had never seen it in a patient. So I became increasingly agitated and panicked. I don’t know how my son hung in there with me because there was nothing he could do. Nothing anyone could do. I was literally hanging on to my sanity by a thread, anticipating and dreading the next “tasering”, or power surge. After approximately 36 hours it finally subsided.
Months later I diligently searched for any post-ICU experience or case studies similar to mine, including sensory integration problems. Nothing. It became increasingly surreal to the point where I suspected I’d hallucinated the entire ordeal. So I went over it with my son, Pat, to be sure. It was real, for both of us. He sensed at the time that the only thing allowing me to hold on to a thread of sanity, was him. So he didn’t dare leave me for 36 hours. I don’t know how he did it.
As time passed, and as I let go of looking for an answer, I began having insights about what I’d experienced. The insight that made most sense was that having my “bioelectric” system shut down and then turned back on resulted in an experience similar to a spontaneous kundalini awakening. Although I’m a yoga and meditation practitioner I don’t profess to be experienced or all that knowledgeable about such things. I just can’t find anything else that so accurately describes what happened to me during those 36 hours.
But what’s most important, is that I believe everyone has this incredibly powerful, electric life force within them. However, anything beyond a trickle of a current quickly becomes too much for our senses to handle, without overloading. I got the full fire hose dose for 36 hours and it permanently changed me. The only question that mattered was “what do with it?” and “what do we all do with it?” The answer is simple and clear.
To Feel Our Power.
I was never a powerful rower. I’m a tall lightweight, all arms and legs, tiny hands and feet, so my boat speed comes more from length than strength. Still, I always tried to develop my leg muscles and for me that meant jumpies. And it wasn’t just exercise. I tried to incorporate a version of jumpies into daily activities so it was a habit, the kind that kept my doctors up at night.
In Sept 2011 I was hit with a deadly auto-immune disorder. For two weeks I was barely alive between ICU and complications/hemorrhage from a kidney biopsy. It was an endless series of shocks and one of the most memorable was looking at myself two weeks into it. 20 years of fitness and strength training gone. Disappeared. I gave new meaning to “skin and bones”. Jumpies weren’t on the recovery menu. I had to learn how to stand up by myself, and walk by myself. Somehow, despite my severely weakened state, I astounded everyone with my progress. That astonishment quickly turned, and rightfully so, into grave concern that I’d overdo. Who me? A rower? Why would anyone think such a thing? Because rowers are nuts, that’s why. No matter how much my caregivers advised, recommended and even threatened, the rational me nodded and agreed, and the rower me ignored and rationalized. I think it was day 15 that I was caught doing modified squats in the solarium at the end of the hall.
Fortunately, I had an assessment by a sharp physical therapist. I figured I’d wow him with my stair-climbing ability but he was more focused on my attitude. He described in great detail what would happen if the coils that were shot into me in an emergency femoral embolism procedure were to break free before having a chance (30 days) to scar over. He did not paint a pretty scenario and he got my attention. 30 days with only 10 minute light walks. Nothing else or risk my life.
My rower’s brain worked hard on me for those 30 days. “Why take the elevator when you can climb the stairs?” “Why wait for the ‘walk’ crosslight – you can sprint a few steps and make it!” “Of course you can carry 5 bags of groceries at once – why make extra trips?” It was a never-ending voice in my head but I did not give in. The consequences were too severe. Finally the 30 days were over and I could jumpie. Or so I thought.
I remember the first time like it was yesterday. I had to pick up something I’d dropped. That was always a great jumpie opportunity and I reflexively squatted down in perfect form: chin up, back straight, butt down. I grabbed what I’d dropped and …nothing. I couldn’t even move myself up an inch. There was nothing there and it was the middle of the room with nothing to help me pull myself up. It was the strangest feeling, thinking out loud “so what are you going to do now dumbass”. I wanted to laugh but my quads (what little was left of them) were quickly cramping and the floor was hard and I had a 5″ dialysis port hanging off my jugular vein and a massive amount of drugs coursing though my body. Somehow I managed to gently roll onto my side and get myself back up without getting hurt. But I’ll never forget that moment, not just the feeling of helplessness but the realization of the amount of work it would take to get back to where I was. That moment taught me patience, never one of my strengths.
Now, 17 months later, completely cured and at the end of my aggressive treatment, I’m grateful for that moment that touched off one of those “from doing to being” shifts. I stopped putting so much pressure on myself and just enjoyed all the things I could do. I gave my body the right of way and it eventually gave me back my jumpie ability. I’m stil not as strong as I was but now I can enjoy the process of getting there, one jumpie at a time. Anyone know a good trainer?
It was 3 or 4 days after I’d gotten out of ICU. I was still very weak and shaky. For perspective, at one time I had 14 machines keeping me alive and a lot of that stuff was still attached.
One of the nurses told me that I’d be spending some time with her doing some rehab. But it was more like “reharm”. She spent most of the time telling me how my life would be now that I was disabled. As weak as I was I picked up on her negative vibe and tried to psychically defend myself. Her tone was badgering: “How will you get food? What happens if you fall down? You need to think of all these things you know!”.
Nurse Ratched was physically imposing, strong and big. At one point she confused me and I thought she wanted me to get out of the wheelchair and into another chair. My brain had not yet caught up with my reality so I attempted to stand and immediately started to fall because, of course, my legs could not yet hold me. She caught me before I killed myself but I hit the metal bed frame and got badly banged up and bruised – the last thing I needed in my condition. I saw the look on her face: terror that she let that happen. In spite of the pain I had the smug satisfaction of thinking: “who’s in power now Big Nurse?” I never saw her again and I never reported her – I literally lied about the bruises.
With all I’d been through, it was the only time anyone at the hospital tried to create fear and doubt in me. But there was an upside to taking a stand, even though I got hurt doing so.
There were many times after that incident that caregivers, friends, family etc. would bring up disability, but it was not to manipulate me, it was because they cared.
- My son and his family who set up a room for me at their home in Rhode Island because they did not think I should be alone.
- The hospital staff who thought I should go to a rehab. facility for 2 weeks after discharge so that I would be safe.
- Friends who looked into wheelchairs and walkers because they did not think I could be safely mobile.
- Friends and family and hospital social workers who told me to look into long-term disability because I would no longer be able to work.
- Recommendations for all types of alert items for when I had emergencies.
They all meant well but thanks to Nurse Ratched I was able to quickly take another stand by clearly announcing that the “D” word (disabled) was not permitted to be spoken in my presence. Ever. That word contradicted my belief “I’m fine” and the renunciation was required. After that renunciation, everything just fell into place and despite a huge complication described in Which Law?, I walked out of the hospital 2 weeks later in high heels. I never needed any of it, although I did have suppliers of very cool gothic and steampunk canes bookmarked… just in case. Randal McMurphy would’ve loved it.
I was surprised by the generosity of friends and family when I was in the hospital for three weeks last year. Flowers, gifts, offers of help, cards from all over the world, visits – it was overwhelming. My good friend and rowing teammate Beth knows I love flowers and pastry and she was always showing up with deliveries, not just for me but for all the nurses. I returned from treatment one day and a floral arrangement had been delivered. It was from Beth. It was not her typical taste, nor mine, but it was very cute because some dense white flowers had been sculpted into a little white dog’s face. Beth said she told them to deliver whatever was the most fun and uplifting. I checked Central Sq. Florist’s web site and found this image:
There were hospital staff of all levels in and out of my semi-private room. When you’re a patient you’re in the midst of an ever-moving stream of humanity. One of the women who came in regularly, I can’t remember if she brought meals, cleaned or took vital signs but she was very sweet and spoke little English. When she arrived that day she stopped dead in her tracks and I couldn’t understand until I realized she was staring at the floral arrangement. She was speechless. She didn’t move. I don’t speak Spanish but she managed to ask over and over: “Is real? Is real?” I didn’t know if she was asking if the flowers were real or if the dog was real and I was afraid to offend her. She just gazed with the most beautiful smile. In the following days she’d bring her co-workers by and shyly ask if they could come in and look. They had the same reaction. At one point I was getting frustrated with so much stuff piling up in my room and no place to put it. When the ladies came by I asked if they would like to have the arrangement. They looked at me like I was crazy. At first I was afraid I’d offended them, but one managed to say: “you don’t like?” I tried to say I liked very much, that it came from a nice florist and a friend, but I had so many things that I’d run out of space. I don’t know if they understand but I knew they didn’t care. They quietly left, saddened, and I realized they could not believe I was willing to easily part with something so fabulous.
When you’re in the midst of a health crisis you can get so caught up in the technicalities of recovering and self-involvement, that you can miss the little miracles right in front of you. I thought of this one as a gentle, loving nudge by The Field to remind me to stay present, to look, to accept, to connect. That message still comes through 16 months later when I’m disappointed or frustrated. And the messenger looks like a little fluffy white dog with black button eyes, the flowers that looked like a face.
When I was being weaned off the ventilator in ICU I could spend short periods with visitors. During one of those visits,my sister Anne commented to my brother-in-law, that if anything serious happens to her, this is the hospital where she wants to be treated. She was right. I can’t say enough about how fortunate I was to be cared for by the best, at the best. The quick diagnosis of my rare (one in 50k) auto-immune disease, and the ability to stabilize and then turnaround my rapidly deteriorating condition are testament to the quality of healthcare in a top hospital in Boston/Longwood.
But it was so much more than that. There was a culture of shared humanity that permeated every level in the hospital. Everyone had a job to do and system to work within. But there was always a friendly and personable vibe. I could be myself. My family could be themselves. My friends could be themselves. For all of us, being ourselves often means acting like fools and having fun. Its just the way we roll. And no doubt, the more I laughed, the faster I got better.
I don’t know how anyone, patient or family, can get through ICU and acute care without some comic relief. Here, it was not only tolerated, but accepted.
- My sisters afraid to get too close to me in ICU. I’d pretend unconscious but reach out, grab and lock on to them to convince them to go along with my elaborate escape plans – “help, it’s got me!”.
- The kind social worker. She secured a room that happened to be vacant in the resident’s hotel so my son and sisters could crash and blow off steam with another fun family who were there for their ICU patient/family member. This started the “black Stenbergs” and “bad sistahs” meme and I was p.o.’d I could not partake.
- My first roommate post-ICU. She was an end-of-life patient whose family was in complete denial they loved her so much. Although her family wanted her to eat more and get up and move, she was determined to just eat her pudding and die. She was very vocal about it, howling incessantly till at one point my sister lost it and yelled: “just get her the effin pudding I can’t take it!”
- The lab technician. I’d hear the wheels of his cart at exactly 5:50 a.m. every morning and it was always the same, in a perfect Transylvanian accent: Goot morning Miss Vynne-Vynter, my name is Veector and I’m here to take your blahd.”
- The wild Haitian transport guy. I was always on the move, going from one treatment to another and for weeks it had to be by stretcher. Navigating Boston hospital buildings, corridors and elevators is tantamount to navigating its streets and this crazy man did it at top speed and took those curves as good as any of the great cox’ns took the Charles River turns. Since I had gone overnight from rowing 10 miles a day to being wired to a bed, I loved saying: hit it Mon! – and it was off to the races.
- The unbelievable ICU night shift. These two, a man and a woman, never sat down. Now, I was not seeing white lights and lovely visions. I saw two aliens that were committed to transporting me up to the mother ship to steal my organs. That delusion was remarkably real and repeated nightly. I fought them. I was horrible. I spent weeks looking for them to try to apologize for the horrendous things I know I said. I finally found her the night before I was discharged. I was crying and she was busting a gut laughing: “Honey, we see that all the time and the harder they fight the more Propofol they get!” It was like we’d known each other forever.
- Ralph (I think that was his name), the permanent patient. He had so many things wrong with him that he pretty much lived there on the acute floor. So his thing was to use his wheelchair to block everyone from getting around him while he chanted:”Play cards, want a card game, just one game of cards etc etc” I tried to avoid him but was humbled when I’d see the overworked nurses give up their precious breaks to play a game of cards with Ralph.
- My limitations: I was so screwed up after getting out of ICU that I was convinced I had neurological damage despite the doctor’s assuring me it was just ICU psychosis. I couldn’t walk, I could barely talk, I could remember maybe 2/3′s of my vocabulary and my motor skills were whacky. However, I had what I called The Hunger from the massive steroids. So I wanted to eat, refused to let anyone help me eat, would miss my mouth and stick forkfuls of food into the side of my head. My sisters and son did a great job not LOL at me but it was pretty funny.
- My hospital fashion: The thing I could least tolerate was having to stay in bed and alarmed to the bed. I tried so hard to figure out how to beat that alarm but I’d always set it off. Finally, I was free but I couldn’t walk and was damned if I’d go into a wheelchair. So I demanded that someone bring me up my black engineering boots. Instead, my sister brought me up a pair of my keds and I was furious, feeling like I had clown shoes on. So I got my boots and they were great because they acted like braces for my legs and after that I never returned to that miserable bed except late at night. So I walked the halls looking like I’d escaped from a Sons of Anarchy nightmare in my double johnny and my black engineering boots.
So that gives a picture of a day in the life and I can say for sure that every laugh was a healing laugh – endorphins, oxytocin..whatever. And that was before my son gave the green light for visitors. People must’ve enjoyed coming because there were so many people that I had to manage it on facebook, i.e. “visiting hours are open at 10 a.m. and you’ll find me in dialysis and extra chairs are setup your comfort and convenience – and don’t forget my extra large Starbucks iced mocha.”
Once I was home, I talked about how I missed the great atmosphere and incredible people with my sculling coach who came to visit me. He had gone through a serious health crisis himself. We both had similar experiences in that it was never about the sickness or the suffering. It was about the relationships and the human connection, sometimes fun and often funny. I’m forever grateful to the hospital and everyone there for creating an atmosphere where that could take place.