Prologue
I am not the person I was ten years ago. Life has its ups and downs, but I have traveled a really wild roller coaster with not only steep inclines and sharp drops, but also the loops that turn the world completely upside down. March 16, 2004, I was coasting in the morning and hanging upside down by noon. Many times I thought I would fall off, and a few times I hoped I would. My world would not be right side up again for quite some time.
It was a beautiful March morning in Iowa, unusually warm for that time of year. The roads were clear when I left for work. I was driving into the sun, but wasn’t having difficulty seeing. I wasn’t feeling very well, but after already missing several days of work, felt I really needed to go.
I had my own business, Nutrition Connection, which provided dietary consultation to nursing homes. I lived alone and was the owner and sole employee. I had been having some health problems, and the previous weekend had been hospitalized for low potassium. The problem was corrected with IV therapy, and the levels were normal when I was released on Monday. I wasn’t under the influence of alcohol or drugs, but had a loss of consciousness driving on a two-lane rural highway swerving into the oncoming traffic, hitting a semi-truck head-on. We were both traveling at highway speed.
While hospitalized after the accident, I had every test imaginable and results were all normal. A seizure from another episode of critically low potassium was determined to be the likely cause of the unconscious episode. I do not remember the actual crash or much of the first few days afterward.
It has been a long journey from that day to where I am now. I have shared much of the journey, but haven’t written much about the first two to three years. I have had a hard time doing so, as I am just coming to terms with it myself. I am writing this to help me as I work through reliving those difficult years. I also hope it will help others with disabilities realize they are not alone and help the non-disabled understand the experience of coping with a new disability.
Attempting to minimize the medical aspects, I will share the emotional side of the journey. After traveling through terrible darkness, I eventually learned how to live a satisfying life as a person with a disability.
Despite the immense physical and emotional pain, I am a stronger and happier person today than prior to the accident. For me, therapeutic writing has been an integral part of the healing process.
Part One
Coming to Consciousness
Crashing into a semi should have been the end of me, but for some reason, it wasn’t. The only part of the accident I remember (or at least think I remember) is the windshield cracking and the crack spreading like a spider web as the glass shattered.
I have no other recollection of the crash, the hour it took for them to cut me out of the wreckage using the Jaws-of-Life, the ambulance trip to the hospital, the tests I had there, the ambulance ride to a trauma center thirty miles away, having my fractured femur (upper leg bone) surgically repaired, or the three days following that.
The only glimpse of memory I have is of the hospital staff trying to find out who they should notify as my next of kin. Unable to tell them, I vaguely remember handing them my cell phone so they could try and figure it out.
Three days after the accident, I woke up needing to go to the bathroom. Not realizing I was injured, I was angry with the nurse who shoved me back in bed and told me I couldn’t walk as I had a broken leg. After that, I slipped back into unconsciousness.
My next memory is of a doctor rudely waking me up and asking me:
***
Who I was?
What had happened to me?
Did I know where I was?
Was it a suicide attempt? (This question I would hear over and over again due to my history of depression.)
Where did I live?
What day was it?
Who was my next of kin?
***
I remember the questioning, but at that time was in such a fog that I was unable to provide any answers. The staff hung a dry erase board on the wall and wrote down the answers to help me. Each time I would awaken, they asked me the questions again, but I couldn’t even recall that I was to look at the dry erase board.
The doctors and nurses were growing more and more frustrated, and so was I. It still seems strange
that I retain memories now of being in the hospital, while I could retrieve nothing of my past during that time. I became more and more frightened and angry.
As I was awake more, I became aware of the incredible pain I was in and begged for pain medicine which they were withholding due to my confusion. Still unable to answer any of their questions, the time I was awake was spent in confusion, in pain, and in tears.
Part Two
Starting to Think Straight Again
Slowly, I began to get some of the questions right. The date continued to elude me even though they posted a calendar on my bulletin board. When very ill in the hospital, time seems irrelevant. All I was concerned about was the pain I was in and returning to work.
I had my cell phone and started receiving several nasty calls each day from bill collectors. A common question was, “Who is taking care of your affairs?” My answer, “I am.” I lived alone, and was self-employed. Who did they think was taking care of my affairs? One bill collector had a computerized call system whereby they harassed me twice a day every day and claimed no human intervention could reset the computer system, no matter what the circumstances until the payments were up to date.
This was the beginning of seventeen months of living with no income. Welcome to poverty.
Each day, a variety of people would stop in to ‘assess’ me. It seemed endless and none of them provided good news. The doctors were discouraged with my progress, while the physical and occupational therapists were frustrated I wouldn’t cooperate with their programs due to the pain they caused.
There was a new nurse’s aide each shift, each not knowing how to care for me. The nurse manager who was supposed to be coordinating my care was the only one I didn’t see. I remember her checking on me only once during the first three weeks.
My family of origin had completely disowned me four years prior to this when I went through a year of severe and suicidal depression. The trauma center was far enough away from home that visitors were rare.
No one cared that I was in excruciating pain. Staff members came in, did their duties, and left. No one really seemed to care about me.
Meanwhile, I was wheeled out on a gurney for test after test with no one explaining the tests to me or providing any results.
I was very emotional and cried a great deal. The longer I was there, the ruder I became with what seemed like staff incompetence. I spent all day in bed, flat on my back, getting weaker and weaker.
After three weeks, the surgeon informed me I was not healing, and a second surgery would be required. I cried hysterically when I heard this. He was the coldest and least empathetic healthcare provider I have ever met. The wound care nurse tried to explain to him why I was upset, but he didn’t appear to care. Unfortunately, he would be part of my life for quite some time.
The next day, I had surgery number two, a bone graft. Bone fragments were taken from my hip and grafted to the fracture site leaving me with two incisions to heal. The following day, the surgeon informed me that my bone was infected, or in medical terminology, I had osteomyelitis. Thus, an infection control physician and IV antibiotics entered the picture. My depression was rapidly getting worse and the tears continued to flow along with frustration and anger.
Part Three
Introduction to Rehab
A couple days after finding out about the infection, the rehabilitation doctor evaluated me to see if I was a candidate for her program. She said if I would cooperate with physical and occupational therapy, she would accept me. This gave me a glimmer of hope, and I did cooperate the best I could. Having been in bed for three weeks, I was so weak that even the simplest movement was taxing, especially with the continued pain, infection, and presence of two incisions.
My leg wound was draining, so the wound care nurse decided to use a wound vac. The ten pound machine provided continuous suction to the wound area via a small hose much like a vacuum cleaner. I had to be careful not to dislodge it as reapplication was a complex process. Everywhere I went, it had to be carried with me. I asked the nurse if a wound like mine would ever heal. She looked sad as she said, “Not without more surgery.”
After a few days of therapy, I could stand and hop a couple steps on my good leg using a walker, and do some simple arm and leg exercises. I sat in a chair for meals. The rehab doctor approved moving me to her floor for intensive therapy.
The staff on the rehab unit were very demanding, but did seem to care about me. My daily program consisted of getting dressed in street clothes, or in my case, hospital scrubs as my clothes were still at home. This was extremely painful, especially putting on pants, shoes and socks. Each day I had two sessions of physical therapy, each forty-five minutes long, and two sessions of occupational therapy, again each forty-five minutes long. I had to sit up for an hour at mealtime and was also, truly, forced to play cards and board games with the recreational therapist for an hour each day as they hoped it would help my depression. I was so tired, depressed, and in so much pain, but I did my best.
After three days, it was determined I needed another surgery on my leg. This was performed the next morning and I was transferred back to my old nursing unit. At that point, it seemed this nightmare would never end, and frustration, depression and anger filled me.
Each day, the surgeon would make his cold-hearted assessment and tell me to, ‘Stay the course’, a phrase I would truly learn to hate. What the “course” was, I had no clue. I was placed on bed rest, continued to be on IV antibiotics and use the wound vac. Pain control was inadequate, I couldn’t eat, and began to wonder if I would ever have a life again. The bill collectors continued to call and my business contracts began cancelling as I was unable to fulfill them.
Part Four
Return to Rehab
After a few days, I was transferred back to rehab, where although very tired and in great pain, I felt as though I was working toward a goal rather than just wasting away. The little bit of strength I had gained during my previous rehab stay was gone, and I was starting over which again brought to the surface my negative feelings and exhaustion.
The one nurse I unleashed on was the nurse who came and woke me up for a shower after I was tucked into bed for the night following a very exhausting day. She had to cover three fourths of my body in plastic to protect my incisions and IVs etc. I was really upset and rude to her and there was no hiding it. I did get to have my hair washed for the first time in several weeks which did make me feel considerably better, and by the end of the shower, I was thanking her. She changed me to the morning shower list, which I also hated, not being a morning person, but it was still better than having a shower after I was settled in bed.
The parade of people in and out of my room continued. The other person I became really irritated with was the Vocational Rehabilitation Specialist. I had no doubt as soon as I could walk again, I would return to my normal work life. I certainly didn’t need her help in doing my job. Apparently sensing my hostility, she didn’t stay long, but left me her card in case I changed my mind.
So therapy moved on. Parts of it, I was almost starting to enjoy. It felt good to be making progress. The wound care nurse did my every other day wound vac change and assessment. A few days later, she looked and shook her head ‘no’. She then called the surgeon who arrived several hours later.
The flesh that had been covering the hardware which held my leg together had shifted so when she looked into the incision, the hardware was visible. This was not good news. A few hours later, after a long night and many tears, they wheeled me to the now all too familiar operating room. This time, as several weeks of antibiotics hadn’t been effective in treating the infection, the surgeon placed antibiotic beads directly in the wound. He said they were often successful, especially when combined with the IV antibiotics. The bad news, they would require surgical removal.
They did move me straight back to the rehab floor, gave me a day to rest, and then restarted therapy.
The antibiotic beads felt like a sack of marbles right behind my knee, but this did not decrease the exercises I was to do, just made them that much more uncomfortable.
Knowing another surgery loomed in the future dampened my already tear-soaked spirit. The doctor did finally change my pain medication to a slightly stronger, although still, less than effective one.
Part Five
Meeting Goals
After another five days, I had met the goals the rehab therapists had set for me, meaning it was time for me to leave the rehab center. I really wanted to go home, but had no idea how I would care for myself. I felt a combination of relief and fear at the thought of being on my own.
A major problem was my need for at least two more weeks of IV antibiotics. It is not unusual to be sent home after being taught to administer your own IV medication, but as I didn’t have health insurance, cost was a major problem. The antibiotic I was on was four hundred dollars a dose to be give four times a day. This was the start of having to fight to get adequate care without health insurance coverage. My other option was to stay there another two weeks and pay a thousand dollars a day for the bed and also pay for the medication.
Of course, I chose to go home. I seriously missed my dog and knew I would be more comfortable there.
The social worker started checking into what they refer to as ‘charity care’, but I was denied this as I lived in a different county. This social worker seemed to have no knowledge of the resources available in my county which was only thirty miles away. She suggested I call churches and businesses to asking for donations to help defray the cost. This was not at all effective, and more tears came with each denial I received. It seemed hopeless.
The unit manager did finally find an outpatient pharmacy that would consider providing the antibiotic if I agreed to pay later. They sent someone out to see me and decided based on a tearful promise, they would provide it. That was one hurdle accomplished, and finally I felt a bit of relief.
Next I needed what is known as durable medical equipment. This included a walker, a wheelchair, a toilet riser and a commode. I rented the wheelchair on a month by month basis, and then managed to scrape together enough to pay a deposit and first month’s rent. I had to buy the walker, a cheap and very unstable one. The rest of the equipment was borrowed from people I knew. I felt like I should be headed to a nursing home with all of that equipment. How would I get around my house with all of that ‘stuff’ in the road?
They taught me how to do the IV’s at home and then arranged for a home care nurse to visit and supervise a couple of times a week. I finally returned home six and a half weeks after my accident. The next surgery was scheduled to be done outpatient the following week. The surgeon would remove the antibiotic beads, and hopefully, be able to stitch at least part of the fourteen centimeter wound closed. Until then, I had to pack the wound with saline soaked gauze twice a day, a very painful process, and difficult to do on the side of my leg. But I had to do it, there was no other choice if I wanted it to heal.
I had worked in healthcare for twenty years and never realized patients were discharged from the hospital without the necessary modifications being made to their homes. I assumed that there was a program to provide such a service. This is done for those less than eighteen years old. I would soon find out how easy it was to slip through the cracks of the available programs. The guidelines were different for each one, and I didn't seem to fit into any of them.
My old house was exactly as I left it, completely non-handicapped accessible. I had five steps to get into the house, the wheelchair wouldn’t fit through the bathroom door, and there were no grab bars anywhere. That would be the first of many things I would find I wasn’t aware of. It is little wonder the disabled often end up institutionalized as returning home was next to impossible.
When I arrived home, the only way to get into the house was to crawl up the front steps and pull myself up and into the wheelchair. This would soon become a matter of course. It was good to be home and see my beagle. She was my baby, companion, and best friend. She was so excited to see me too!
I did figure out how to do most things I needed to do. As long as I was on the IV’s, I qualified for someone to come in and help me take a sponge bath twice a week.
At home, I waited a week for surgery number five, hoping it would be the last. I remained on the same inadequate dose of pain medication and every move hurt.
I did some computer research on osteomyelitis and the results were very discouraging. Even if ‘cured,’ there was a good chance it would return within ten years, a very frightening prognosis.
Part Six
Outpatient Surgery
Five days after discharge, I was crammed into a car (my leg would not bend to allow me to sit up). We made it to the surgical center where, because of an emergency surgery being performed, I had to wait about three hours as my anxiety continued to build. This was my fifth surgery on my leg, and I assumed it would be the last. That was some comfort.
They removed the antibiotic beads, cut away the scar tissue that had formed, and in general cleaned the wound out. They did suture the incision shut, so no more packing of the wound would be needed. In the recovery room, they were generous with pain meds. After a couple hours, they stuffed me back in the car, still unable to sit, and I endured a very long, painful ride home. Next came the agony of crawling up the front steps of my house with a fresh incision. I left the surgical center on the same ineffective meds I had been on all along despite the fact that I had just had surgery. They added oral antibiotics for six months for the continued infection.
The next few weeks were filled with appointment after appointment. Of course they were not at the same place or the same time which meant numerous trips to see the surgeon, the infectious disease doctor, the lab for tests and radiology for x-rays. In between, I was trying to figure out how to meet my financial needs and maintain a house to live in.
I developed a routine of spending Mondays calling everyone I could think of for financial help. I would sit with the phone book making calls all the while receiving a mailbox full of nasty collection letters. No one would help. Each organization had a different reason I didn’t qualify. I was too young, too old, had no minor children in my home, owned my house, didn’t work, did have a small amount of income from my retirement fund, lived in the wrong city, county, etc., and etc.. Most of the rest of the week I spent in tears of anguish over what to do, as well as being in pain and agony.
Once my IV therapy was over the nurse and bath aide no longer came. I had no help at home. I learned to eat cold food straight from cans. My house was beginning to resemble that of the Addam’s family. Dust, dirt and cobwebs were everywhere.
It was a long summer. I was afraid to use the air conditioner as I had no way to pay for it. I was in fear of losing my house and becoming homeless. I also feared running out of food and starving. Not once, did a neighbor stop by and ask if I could use some help. A friend of mine did come over once every week or two and do the meager shopping I could afford. Other than that, I was pretty much alone.
Weeks went by when I didn’t see another person. My dog was my soul source of comfort most of the time.
I did have a monthly appointment with my surgeon, who didn’t seem to care about my pain. He ignored the fact that I cried every time I saw him and his routine recommendation was to, ‘stay the course.’ The problem was that he had no idea what course I was on.
Part Seven
Trial of Therapy
The infectious disease doctor decided after six months I could discontinue the antibiotic pills as the osteomyelitis had healed. The surgeon felt it was safe to begin weight-bearing with the use of a walker and sent me to physical therapy.
Therapy sessions were extremely painful and unproductive. I was able to move a slight bit better, but the pain was excruciating. By that time, the surgeon had taken me off of my pain pills thinking I was just drug-seeking. Three times a week for a couple of months I struggled through these therapy sessions, often in tears. The therapist felt I was not motivated and that I could do better if I would just try harder. He told me so frequently, too.
I felt absolutely broken and defeated. I still was not able to work. I was sick all the time with an unexplained fever, night sweats and chills. Others in my life felt I enjoyed the dependency of being disabled, and what little help they were providing, dried up quickly. Depression had always been a problem for me, I was sick, alone and I was feeling its full force. I couldn’t afford to see my psychiatrist or to take my medications on a regular basis. I would take half a dose or take it every other day depending on which medication it was.
It was a few days after Thanksgiving, when I heard something in my leg snap, and was immediately in excruciating pain. I couldn’t bear weight at all, even with the assistance of a walker. I tried to get an appointment with my surgeon, but he was overbooked due to the holidays. I did go to go to physical therapy, but with these new symptoms, they wouldn’t see me.
When I finally was able to be seen by the surgeon the next week, he did the usual x-ray. He brought it in and showed to me that two of the screws holding the hardware and fracture site in place had broken, and the heads of the screws were floating around in my knee. He explained to me that the osteomyelitis had likely returned and I would need further surgery to reset the bone and remove the infected area. I was told to come back after Christmas for what I assumed would be a preoperative consultation.
I actually felt relieved that there was something truly wrong, and there was hope to fix it. So I hunkered down for a month of pain and waited for the surgery. Christmas came and went, and all I wished for was this nightmare to end. That wouldn’t happen for quite some time. I stayed in bed, my computer had quit working and the only reason I had to get up was to care for my very special beagle, Zoey, who kept me company and gave me reason to live.
Part 8
A Turn of Events
I returned for my nine month checkup with the surgeon in January, 2005, leaving the visit totally bewildered and thinking that either I, or the rest of the world, was insane. I was expecting a pre-operative visit to get my leg fixed properly. I could still bear no weight on that leg at all and was in unbearable pain.
As usual, x-rays were obtained, and I went in to see the surgeon. He looked like the same surgeon, but had a totally different take on what to do about my leg than he had given me the previous month. He said, 'yes, there was ‘some settling’, at the fracture site, but he did not feel it was important and as usual he recommended, ‘staying the course’.
I confronted him with what he had told me the previous month, and he appeared to have no clue as to what I was talking about.
As I left the room sobbing, I was met in the hallway by a representative of the billing office. In her sugary sweet voice, she discussed with me ‘my payment’ for
I had already received, and that if I was unable to pay, I would not be seen again. It finally occurred to me that the surgeon was thinking of his bank account, not my health, when he saw me. I was not getting the proper treatment because I didn’t have health insurance. Being self-employed, I had been unable to obtain it due to pre-existing conditions. She did grant me one more visit, if I would pay out of pocket for services received. That appointment was set for March 1, 2005.
I was left with no hope, in pain, growing more angry and depressed each day. Not knowing what to do, I contacted my doctor from the rehabilitation center. She was short on ideas, but did put me on an adequate dose of pain medication until I could figure out what to do.
I struggled through until my March 1st appointment. I again tried to tell the surgeon how bad it was, but he just mumbled something to the effect that not everyone has a good outcome after a severe fracture. Again, he stated, ‘stay the course’, and if I wasn’t feeling better, to return in a year.
I found my voice and told him I was very unhappy with his care, didn’t feel comfortable waiting when I couldn’t bear weight, and knew the hardware in my femur was broken. He did offer to contact a trauma surgeon for a second opinion. Fortunately, the trauma surgeon could see me the next day. I left the surgeon’s office with copies of my medical records and x-rays.
I couldn’t resist reading through his monthly progress notes noting that each month he had recorded that I was having normal healing. There was no mention of pain, no mention of my being in tears every time I saw him, no mention of suggesting to me I would need more surgery, and no mention of anything abnormal at all. The records had clearly been sanitized and all incriminating evidence deleted. The x-rays did clearly show the broken screws with the heads floating around my knee. Tomorrow would bring another perspective altogether.
Part 9
On a Downhill Slide
Armed with my x-rays and progress notes, I headed off to see the trauma specialist at the University of Iowa Hospitals and Clinics (UHIC) on April 1, 2005. Dr. McKinley was a very compassionate doctor, who after talking with me and looking at the x-rays done by the previous surgeon the day before, determined I continued to have osteomyelitis, a bone infection, at the fracture site. To verify this, he ordered a bone scan, a two day procedure, to be done the next week.
The bone scan confirmed his diagnosis, and he recommended surgical removal of the infected bone. This would leave my leg with an approximately one inch section missing, which he would fill in with a spacer impregnated with antibiotics. During this time, I wouldn’t be able to bear weight. Once the infection cleared, he planned to remove the spacer and reconstruct the bone. He was optimistic that I would eventually be able to walk again
Two weeks later, I had the surgery performed. When the surgeon talked to me afterward, he said the infection was much worse than he expected, and he had removed eight inches of my thigh-bone rather than one.
An x-ray done the next morning showed the spacer had broken, and I was scheduled for another surgery to replace it three days later. Following the second surgery, I was started on six weeks of IV antibiotics along with hyperbaric oxygen treatments (HBO) five days a week. HBO is a procedure where intensive oxygen is administered in a high pressure chamber for two hours a day to stimulate circulation and healing. This required I be kept in the hospital for the entire six weeks. I was very depressed and in a great deal of pain. Two hours away from home, no one visited me. I was fortunate to have a couple of nice roommates during this time which helped some.
By that time, it had been over a year since I had worked, and all my financial resources were gone. Even in the hospital, the bill collectors harassed me, and I was very close to mortgage foreclosure. A decision on my disability was pending, and the hospital social worker was trying to speed that process along. All I could do was wait, hope, and cry.
I was notified a couple of weeks before discharge that my disability was approved, but it would take some time before I actually received a payment. I was very afraid that I would end up homeless and disabled.
I left the hospital the last week of June 2005 in poor shape both emotionally and physically to return home where I had no help, no money and a very dirty house that was just days away from foreclosure. I was homebound, in pain, unable to walk, very ill and weak from the ongoing infection and surgeries. I was in a rapidly deepening depression and really questioning whether life was worth living.
June 30th, I received my disability payment, just in time to pre