By Ruth Mulder
April 22, 1974: Confused and afraid, I was in an ambulance and on my way to the University of Iowa Hospitals and Clinics in Iowa City. It was ten o’clock in the morning, and my husband was with me for the hour and a half trip.
Earlier that morning I was awakened by a sharp pain in my lower neck. Thinking I may have laid wrong, I took aspirin and went back to sleep. Later, our son wanted a drink of water so I got up and went to his bedroom, but my hand wouldn’t grasp the glass. I awakened my husband and together we observed that my arms and hands were weak. My husband called our family doctor, who said to be at the emergency room by eight o’clock.
While getting dressed, my fingers wouldn’t work to fasten the buttons. My husband helped me get ready and urged the children to get ready for the day. Our three children were ages ten, seven and three. Arrangements were made with a special neighbor to get the two oldest off to school and to care for the youngest. My husband cleared his absence with the principal at the high school where he taught.
Walking from the car to the emergency room (ER) was difficult, so I held onto my husband. The doctor also took note of my unsure gait. He asked me to review the events of the morning, then proceeded to prick, poke and hammer to assess the reflexes in my limbs. Sensing something unusual going on, he informed us he would make arrangements for me to be taken to Iowa City.
While I remained in the ER, my husband went to talk with the neighbor and each of the children to explain I was being transferred, and if he didn’t make it home by evening, to stay with the neighbor. Lots of tears followed, not being able to say a proper “good-bye” to the children, and not knowing how long I’d be away.
In Iowa City, I was admitted to the stroke unit for tests and observation. My legs would no longer hold my weight, and my arms and hands were completely useless. The first determination: it wasn’t a stroke; perhaps Guillain-Barre Syndrome, but only time would tell. At two o’clock the next morning, my husband was called at the boarding house where he was staying and was informed that my lungs were failing. At 4:30 I was transferred to the Intensive Care Unit and put on a respirator. That afternoon, I was given a tracheotomy, hooked to a breathing machine, and put on IV feeding. I was now completely paralyzed below the neck, but still with no definite diagnosis. The initial warnings that I might not recover or ever return home were frightening. My husband was invited to spend the nights at the home of acquaintances, and fortunately, was permitted to remain in the room with me each day for most of my stay to provide encouragement and help with feeding and grooming, and the like.
Several spinal taps were administered during the first several days in hope that some irregularity would show up to help determine the possible cause of the paralysis. The third day, all reflexes returned and there was slight movement in my left leg. Over the next two plus months, movement gradually returned to my limbs, first the left side and then the right side. Strength in my lungs was also returning, allowing me to be gradually weaned from the breathing machine.
It wasn’t until the twenty-fifth day that the doctor suggested the diagnosis was Transverse Myelitis. It was most likely the result of a virus causing inflammation of the spinal cord in the cervical region. Apparently, the fact that I had the flu a couple weeks earlier was considered to be a possible contributor. I was told there would very likely be some permanent paralysis. The feeding tube was removed on day thirty-three and a pureed diet on a tray was started. I was able to feed myself on day forty. The trach was removed on day fifty-three and I was moved to a regular hospital room. I could now breathe on my own, speak, cough and smell food again.
The children remained with friends until school was out, then were ‘farmed out” to relatives in another part of the state for the summer months. They were brought several times to visit me. The first time they came was emotionally difficult. I was outside on the hospital lawn, seated in a wheelchair, my right arm in a sling, my hair chopped off short and I had lost a lot of weight. My own children, afraid of me! They stood at a distance and had to be coaxed to come near for a kiss and a one-armed hug.
Daily physical and occupational therapy began on day fifty-seven and provided much needed encouragement but also was physically and emotionally draining, realizing life would not be the same as before. Being naturally right-handed, I had to learn to use my left hand for feeding myself, writing, and eventually doing all other daily chores. So, gradually a new reality set in, and I would be forced to learn to live with numerous limitations.
A friend who had baked a cake and the nurses came to my room to sing for my thirty-first birthday. I was given a pass to go home over July 4th, which turned out to be a difficult experience, physically and emotionally, realizing how much my life had changed. A week later, I was transferred to the local hospital, and after being hospitalized for ninety-seven days, was dismissed. Outpatient physical and occupational therapy sessions continued for a year-and-a-half. The return of the right side plateaued, leaving me with a severe limp while walking and a paralyzed right arm and hand. My lung capacity also plateaued at forty percent of normal, but I was determined to make the best of my disabilities. I had a family to look after! The support and encouragement from family and our church and school community helped make the transition to life-with-disabilities tolerable. Eventually, adopting an attitude of contentment.
Following forced-intubation during appendectomy surgery, twenty years into my disability, tracheal stenosis set in at the tracheostomy site. Several laser procedures re-opened the airway, only to have scar tissue grow back in a short time. A wire mesh stent was inserted and provided relief for nearly ten years. However, the stenosis returned growing through the mesh stent, requiring twenty surgical procedures to be staged to remove the obstruction at Mayo Clinic in Rochester, MN. This was followed by thirty hyperbaric oxygen treatments which provided healing of the stenosis but left me with a severely narrowed airway. Nebulizing with saline several times a day helps keep the airway clear.
When I became disabled, the MRI as well as other investigative methods of diagnosis were not available. Years later however, an MRI did reveal a marked narrowing of the spine at the location of the initial pain in my lower neck.
Severe scoliosis and chronic back pain are a constant. Medication helps, but I am never free of pain. Bladder and bowel problems also persist. I gradually lost strength in my legs, used a quad cane a couple of years for stability, but fell occasionally. Ten years ago, a fall caused both bones of my right leg to break below the knee. I have since depended on the use of a power chair for mobility. My husband of fifty-eight years remains my caregiver.
Sewing has been a life-long hobby, and despite my disabilities (my husband cuts most of the fabric), I managed to sew clothing for my daughters, including a Jr-Sr Prom dress and the attendant dresses for their weddings. More recently, I have sewed several hundred dresses and skirts that make their way to the poorest of the poor in Haiti.
I read somewhere that disability is not a blessing, but neither is it a curse. From experience, God rewards with dependence and contentment. Not without struggle, of course, but if we all had all the answers there would be no need for faith and hope.