The Holy Longing
by Johann Wolfgang von Goethe
Tell a wise person, or else keep silent,
Because the massman will mock it right away.
I praise what is truly alive,
What longs to be burned to death.
In the calm water of love nights,
Where you were begotten, where you have begotten,
A strange feeling comes over you
When you see the silent candle burning.
Now you are no longer caught
In the obsession with darkness,
And a desire for higher lovemaking
Sweeps you forward.
Distance does not make you falter
Now, arriving in magic, flying
And finally insane for the light,
You are the butterfly, and you are gone.
And so long as you haven't experienced this:
To die, and so to grow,
You are only a troubled guest
On the dark earth.
Tonight I am sharing a secret story. I say secret because only a handful, if that many, know about this story. This is the tale of a night as defining, if not more so, than the night of my accident. This is the night I finally came to life again after years and years of darkness and struggle. Your kind words and encouragement have allowed me to finally describe the most vividly memorable night of my life...so far. I remember every moment as if it was happening live and relive it often.
It was a freezing, winter's night and the wind was howling and hissing outside so fiercely I was terrified my old, casement windows were going to crack and shatter. My body was shaking and shivering, not only because of the frigid temperatures, but also because of my high fever. This was a particularly rough day. At this point I weighed about eighty five pounds and was vomiting and having excruciatingly high temperatures almost every minute of the day. I had already been to three wound clinics, a slew of doctors, taken several rounds of IV and oral antibiotics, and had every test requested by my doctor and no one could figure out what was causing my rapid and violent decline. Any fight or endurance that remained were long gone and my hope was close behind. A few days before, as I was taking a shower, I discovered whatever was wrong with me caused an enormous, gaping hole on the upper part of my leg and lower back side, causing what bones I had left to be entirely exposed. Remember, I can not feel my lower limbs at all, nothing, it feels as if they are asleep and barely tingly most of the time. My doctor at the time was at a loss and claimed to be dumbfounded. He requested yet another PICC line, which is a long term port for IV drugs. He seemed to do this every single time he didn't know what else to do. So a few days later, here I was, at home and alone with a PICC line in and freezing.
I could hardly eat anything. If I tried, it would most likely come up shortly after, so I lost all interest in food and actually started gaging at just the sight of it. So obviously, I didn't have dinner and decided to go straight to bed. Sleep was rare, but I tried desperately and constantly to achieve an hour or two. Anything at all would help. I would usually wake up sweating and miserable from a fever breaking, but it was worth it for just a few, short moments of peace and rest. I hooked up my antibiotic, watched television, unhooked the medicine and drifted of into a light slumber. I layered on sweatshirts and robes and still was shivering. About three hours later, I remember being so pleased with how long I slept, I woke up sopping wet. Another fever bit the dust. I tore off my white robe, my purple Tulane sweatshirt, and my giant grey sweatpants. I was now happy with the relief the drafty windows offered. Sitting up at this time took all of my strength and I could feel every single stomach and arm muscle flex and rush with blood as they worked to raise my slight and bony torso. I had to use the restroom so I pulled my wheelchair towards the bed and prepared to lift my body and transfer from the bed to the chair. As I was doing this something slipped and rapidly I hit the hard, cold floor. I remember saying, "No, no, no, " as I was hitting the floor. Instantly, I burst into tears. I knew I couldn't lift myself to get back in the chair. I could barely dress myself without feeling as if I just ran a marathon, so this was certainly an impossible feat. I was already so low, so hopeless that literally pulling myself up was a mountain I was not willing to climb, but I had to. My family was out of town, the other family I rely on was also gone visiting a relative in Boston, and my dear friend, my person I call, was away at school. I was alone. I sobbed because I was so hungry and weak. I violently trembled with fear. I felt dizzy and lightheaded. My stomach suddenly started hurting and before I could prepare, I threw up all over my shirt. I scanned the room for the phone, but realized I left it in the living room. I pulled down a sheet from the bed and decided to scoot to the phone. My exposed bone jumped to the front of my mind and I quickly scratched that plan. I yanked the cushion from my wheelchair and lifted myself up enough so I was at least sitting on something soft. I decided it was up to me to get back in the chair and I just had to try. I situated my legs so I was on my knees and holding on to the bars on the front of my chair. My knees and hips continued to fall and shift and I constantly had to expend strength readjusting my position. I've lifted myself back into my chair hundreds of times. This is something taught regularly in therapy. But tonight, I failed hundreds of times. Over and over again I tried. Each time I grew more hysterical and more distraught. Blood was dripping down my arm and I looked down and saw I pulled my PICC line a little bit as I was attempting this maneuver. To make matters worse, I was covered in my own muck, my own bodily fluids. To say that I was terrified and desperate would be an understatement.
I honestly am telling you I started thinking this was it, this was the end. This was how I was going to die, alone on my bedroom floor in the middle of one of the coldest nights of the year. My dog would be left starving because it would be days before anyone returned. It is awful to think of myself in that moment. How alone and scared I felt. How I planned how I would fall asleep on the floor and just wait to see what happened. How morbid. Because of my depression, which is detachment and isolation at its finest, I had very few people I could call and every single one of them was completely unavailable. And besides, I knew the phone was on a table and I wouldn't be able to reach it even if I thought it was a viable option. So this would be it. I wailed for what seemed like hours. My breath was short and I could feel my energy evaporating. I was depleted of everything. Dreams were no longer relevant and optimism did not come easily. I put my bloody and vomit laden hands up to my soaking wet forehead and cried with fear one last time. Exhaustion was taking over. And then something happened. I didn't plan it, it just happened. I was hopeless in all sense of the word...spirituality, religion, they left along with the dreams. My relationship with a higher power was struggling and almost non-existent. My legs were positioned, one falling over the other, my back leaned up against my bed, the white sheet wrapped around me and my cushion underneath. I looked up towards the ceiling, it just made sense at the time, and through my tears begged and pleaded and said, "Please, please, you have to help me, no one can help me, please, please, you have to help me." I said it a few more times feeling so ashamed because I was begging something I deeply questioned and not only questioned, but had serious issues with, but I pleaded anyway. And then everything became very still and very quiet. I started thinking about how I didn't really deserve help, how there were many, many more people suffering far greater tragedies. I again became very still and quiet. I saw a sliver of light across the floor from the street lights. I forgot to shut the shades earlier and only drew the curtains, how thankful I was for this now. It was the only light in the room. I felt a huge need to take a breath and so I did. I remember how I could feel the air slowly fill my body and then release in almost perfect form. I took one more breath and it was exactly the same. I was calm and focused now. I positioned my legs one more time and placed my hands on my wheelchair, ready to push my broken, sick body with any ounce of strength I had left. I curled and tightened my hands and tensed my forearms, then my biceps and then I soared. I became lighter than air and flipped my hips around and landed perfectly on my cushion in my wheelchair, covered in vomit and all. Stunned, elated, but stunned, I looked up one more time and questioned, "Whoa, thanks?"
Energy filled my soul which fed my body and I went to work right away. I wrapped my arm with a bandage, called the nurse and explained what happened. She said it would be fine and would stop bleeding shortly. It did. I can't explain how quickly I felt a renewed sense of spirit...it just came alive. I knew I wasn't alone. I didn't know who or what was out there, but I knew I wasn't alone. What I encountered was forgiving and there when I needed it most. After the realization of what just happened settled a bit, I turned on my favorite Bruce Springsteen album, I didn't care that it was 3:30 in the morning, I wanted to sing. I put on the album, cleaned the floor, and took a shower. The best shower of my life. I felt like all of the anger and resentment and frustration and worry and fear were beginning to wash away and trickle down the drain with the blood stained water. I returned to my bed and plugged in my space heater, knowing I would be up in a few short hours with the same sweats from the same fever, but I didn't care this time. I knew I could handle it.
I woke up the next day, called my insurance company and demanded permission to schedule an appointment at the hospital of my choice. It worked. I finally was able to go where I wanted to go. I called my doctor at the time and told his office I would no longer be a patient and I wanted a full copy of my chart as soon as possible. the receptionist was stunned. She said, "Sarah, are you sure you want to do this, aren't you afraid no one will see you, you've already seen so many doctors?" Nope, for the first time since July 17, 2000, I was not afraid. I was going to be just fine and I knew it. Through a few more twists of fate I ended up with the doctor I have now who discovered I was carrying a very rare, but very serious blood infection the entire time. The infection was so aggressive and pervasive it caused most of the bones in my pelvis and hips to disintegrate. The previous doctor initialed the fax from the emergency room showing the infection, but just returned it to the pile, ignoring its results and prescribing the same IV antibiotics, one more time. His carelessness is astounding and it took me years to forgive him. Without my current doctor and nurse I probably would not be alive today. They sent me to specialists and did the hard work to discover what was truly causing my symptoms. Many treatments later, my infection is healed, bones are growing back, and the gaping holes are nearly closed. My gratitude for them is immeasurable and I say thank you every, single day.
Without this night that seemed so dark and frightening, my infection might never have been found. I might not have been tough enough to leave that doctor and fight for a new one and I know I would probably still feel desperately alone. It isn't other people or things that take away this loneliness, this emptiness, it is the realization that I had and have the power to change to my situation, my life. There is something inside of me that begs to be alive and clings to hope and light rather than succumbing to the darkness. This is what I learned that night on the floor, any shred of light, any spec of hope is worth grasping because in the end it is all we have when we are alone and dark and cold. And when we finally let the light in, it becomes so bright and so powerful, dimming it seems pointless and futile, you just have to let it shine and let the hope pour through.