Why Fits and Starts
This is a hard remembering. It comes together with a distant memory of silent mornings with cool autumn air that swells into hot Indian Summer afternoons. I remember entering the dead-silent animal shelter building where I worked as a veterinary technician, but not the morning, the last one when…well, when chaos took over and sent me blindfolded, wobbling along the edge of a precipice. I do remember there being 200 or so animals there, dogs and cats who would erupt into full and unrelenting voice realizing a human had arrived to hopefully attend to them if only they can get the human’s attention.
Then there was a dream: sitting/floating with knees drawn up under my chin with my arms wrapped around them; it is night and I’m outside (my favorite place to be) on a balcony/ledge (?); it’s raining, though I’m neither wet nor cold and the glass and concrete buildings across from and to the right of me are in sharp and brilliant high contrast; people come and go from the building I rest against peacefully watching them below and sometimes around me.
Next there’s remembering becoming conscious with my husband’s face hovering over mine as he seems to be trying to explain something. I think I’m trapped under ice and I float up against it trying to hear the words he speaks, but the ice won’t let the words through and I’m not sure I even have ears anymore so I sink back down and try to decide if I should try again, which then something decides for me and opens up a knowing…a knowing that it isn’t just ice I bump against: it’s frozen pain.
There he is again and so are my ears. His face is all gauzy like he’s wearing a PhotoShop filter and I can hear his words so there is a decision to make: shall I decode their meaning, make some sense of them? I think I can sigh and do, even though it doesn’t feel quite right, so I actually listen to the meaning of the words, but am not sure I believe them and I am SO GODAMNED THIRSTY.
Evidently according to him I’m in hospital and have been here for two months (yeah sure) on a ventilator with a tracheostomy. It is my nature to protest but there is no sound nor air coming from my mouth and there is an annoying tube in my nose which I reach to remove but my arms are strapped down so now I am a little pissed off and still SO GODAMNED THIRSTY.
This just isn’t right because I am The Healthy One according to everyone which makes me wonder about what my husband, and now also my son, are saying: I have been here for two months because of something with my back but the only thing that sticks in my brain is them saying that my skin was falling off and I looked like a lizard. So there. Now I realize I have to pee but have this issue of being strapped down because I’ve been a bad girl and have kept trying to pull all the tubes out. My husband reads my lips and tells me to just let go and pee because there’s a catheter in, so I do and commence soundlessly promising that I won’t pull the tubes out if they’ll just free my arms: no dice.
The nurses keep telling me all the tubes are in for good reason, but for some reason I become incredibly irritated by just hearing the word TUBES.
Suddenly I’m a little more awake and though my lower half feels like it is so pressurized with pain that it’s about to explode, I want a drink of water. Time makes no sense nor does why the hell I think I keep seeing a NASCAR driver we’d met in Las Vegas earlier in the year now lurking around my bed. The hands of the clock are the black clove cigarettes I used to enjoy smoking now and then, so I think my husband stuck them up there as a joke, but they appear and disappear unpredictably. The NASCAR driver turns into a poster now and eventually floats off into the void. Doctors come through and introduce themselves, though the things they tell me sound like they know me very well: what a pisser. I doze off and on, and when I wake I see magenta chrysanthemums float up the walls.
I’m gradually more awake and aware and restored to eating real food: a Whopper from Burger King and delicacies my son has cooked and brought from home. I begin to accept that I’ve been in a medically induced coma for two months and am told they did attempt to bring me to consciousness once in a while but I was too deliriously frantic to assess. It comes to my understanding that my fiercest advocate has been my husband who has come to the hospital every day but one to monitor my care and treatment. Without his demand that I be sent to this hospital I would have been dead. My other fierce advocate is my grown son who recently had to move back home from Portland: he visits nearly as often and brings good food he’s prepared for me.
I’m unable to comprehend what exactly happened. There is no memory of the cause: the one single day I developed back pain and by evening had passed out launching this adventure. It is so hard to focus and I spend a great deal of time “on the nod”, staring at the ceiling or thinking about water.
Fortunately, writing this now, the hospital provides website access to my medical records, doctor and lab reports. So all I can do to explain what happened is to cut and paste from reports the unimaginable hell I put my family through watching me for months as I terrified them with my repertoire of horrific new tricks. Some of the reports seem redundant because I kept doing the same things over again. Anyway, let the telling begin:
From Mercy Hospital to St. Alphonsus
“This [patient] initially had presented approximately eight days ago with low back pain to the Mercy Medical Center emergency department…in approximately 24-48 hours she was minimally responsive, tachycardic and septic and at that point in time she had a decompressive lumbar laminectomy from L3-S1, evacuating an epidural abscess. Epidural abscess cultures have grown methicillin sensitive staph aureus as have urine cultures and blood cultures from the same day. The patient was being treated with antibiotics and continued to rapidly decline. She was found to have a proximal right lower extremity DVT, multiple pulmonary abscesses by CT as well as a psoas abscess. There was no interventional radiologist available at Mercy Medical Center…she was transferred here for a higher level of care.”
From various St. Al’s doctors’ summary evaluations:
“…Acute Respiratory Distress Syndrome with hypoxemia…
Lumbar spine epidural abscess…
Diffuse pulmonary abscesses…
Erythema multiforme, related to beta lactam antibiotics allergy: Stevens-Johnson Syndrome…
Right iliac DVT and right calf DVT with possible septic thrombophlebitis. IVC filter placed twice… Hyperglycemia…
Recurrent pseudomonas infections…
Left occipitoparietal intracranial hemorrhage…
Right lung hematoma…
Bi-lateral Psoas muscle hematomas…”
“…She has made a gradual recovery, but still has considerable spinal cord problems and muscle spasms in her hips and lower back.”
“INTERMITTENT ATRIAL FIBRILLATION”
“Consistent with re-organizing abscess.We will plan to re-debride and re-drain the area of abscess in order to obtain cultures and ensure adequate decompression. I have talked to the husband and told him that I feel we should decompress this. I have talked to him about the risks of doing so, including but not limited to,bleeding, infection, wound healing problems, the chance of having a devastating progression of intracerebral hematoma during the operation. We have talked that this even carries the risk to life.”
“LEFT OCCIPITOPARIETAL INTRACEREBRAL HEMORRHAGE WITH LEUKOENCEPHALOPATHY.”
“ She underwent brain MRI today which showed moderately diffuse posterior parietoccipital leukoencephalopathy with evidence of a left occipital intracranial hemorrhage…There were also leukoencephalopathic changes of the right greater than left cerebellum. There was mild diffuse dural thickening and enhancement consistent with meningitis or inflammation.”
“…sloughing of skin on her eyelids and continues to have progression of bullae on her arms and now extending to her legs. She is beginning to slough skin, and several bullae have ruptured with discharge of clear fluid,,,I explained to her husband today that the patient may need transfer to a burn center given the extensive nature of her rash and the sloughing of her skin.”
“She does have some noted cognitive deficits…”
“INTERMITTENT ATRIAL FIBRILLATION”
“SHE IS THOUGHT TO BE ALLERGIC TO NAFCILLIN AND CEPHALOSPORINS”
“…In reviewing the patient’s problems today she appears to have a pancytopenia with severe anemia, severe thrombocytopenia, and moderate leukopenia,certainly a consideration as to whether patient might have an underlying hematologic malignancy.”
Am finally fully awake and focusing well: there is much pain pain pain, trembling, spasming and I’m weak as a newborn. I weighed 135 pounds when I was first admitted to hospital and was pumped up to 216 pounds with fluids as they tried to maintain my blood pressure. With my skin raging and peeling I must have looked like a blowfish, but now my weight is 111 pounds and look quite a bit like a pale mummy.
The hole in my neck is healing shut and I can talk when I cover it, soI tell everyone, “I want to go home”. Surely then I’ll be normal again and can get back to work – I miss my home and my job. Am finally told I can get out of bed to take a shower as nurses come to help me sit up, I step to the floor and collapse but the nurses grab me before I hit it: what the hell is wrong with my legs? I am more ragdoll than even newborn foal yet.
I beg for release to escape St. Al’s even though I do things like roll over on my stomach and freak because I’m too weak to turn back. I am still THIRSTY and they restrict my water intake for some annoying medical reason. I want to go home so I can drink all the water I want. Many years ago I went through a series of four traditional Lakota Sun Dance ceremonies where one goes through four strenuous days without food or water while intermittently undergoing sweat lodge ceremonies during the process: I was never as thirsty then as I am now. Water is incredibly precious and completely deserving of respect and gratitude.
Much happens for the next near-month it takes before I’m released: I must learn to stand, and to walk on my own with a walker, to breathe normally, to safely eat solid food and drink liquids. There are regular physical, cognitive, speech, respiratory and occupational therapy sessions along with psychological evaluations. They are humiliating, annoying and painful on all levels and I dread them daily beyond belief. At last a day arrives when a congenial therapist takes me to lunch at the Olive Garden restaurant to make sure I can function in public while simultaneously gimpy, in pain and high as a kite.
Late afternoon on Christmas Eve 2007 I am released to get the hell out of hospital to celebrate Christmas and my birthday at home the next day with my dear husband and beloved son. If not for their presence and having undergone training for my care I would have been sent to a care facility where I likely wouldn’t have behaved very nicely at all.
There is much that has gone into my recovery since and I have many residual issues that have left me very unsteady, literally shaky and with some vision and cognitive issues that are a challenge. A rare condition resulting from the spinal cord damage called arachnoiditis has turned me into a cavalcade of weird pains and muscle spasms. Returning to work was not in the cards and that broke my heart.
Now, I spend a great deal of time on my back managing pain and spasms – some days my brain or vision doesn’t work quite right – my right hand likes to shimmy and shake – am dealing with the new issue of periodic Lupus flares and an esophagus that’s decided to spasm out of sync.
But enough of all that for now, I am fiercely alive and determined to carry on through all the up and down days of fits and starts as brain and body permit. Occasionally the NASCAR driver still turns up on the periphery of my vision and if the room is light enough I awaken sometimes to magenta chrysanthemums floating up the walls.