Learning How to Walk Again
Kimberly Borchert

It has been about 18 months since the most wonderful and the most awful events in my life took place.  I’m writing about it here for a few reasons. It is cathartic to write.  It’s important to share experiences and read about them as well.  It helps us to grow, to learn, and to feel less like we are all alone in the world with this illness. Another important reason was to share information with doctors about experiences directly related to how they sometimes react and treat patients who come down with these sudden disturbing symptoms.  I have learned through reading and through my support group that we share common experiences.

My story begins in April 2009.  Chris, my husband of eight years and I were about to welcome our first, long awaited daughter.  I arrived at the birthing center but soon was sent to the hospital because my temperature was too high.  I was devastated that my birth plan began to unravel.  My plan was to go all natural, in a tub of water, unmedicated.  A lifetime of bad experiences involving doctors and nurses initially led me to the birthing center.

As a child I experienced horrible headaches that sent me to the emergency room. I would cry and scream for hours waiting alone in the hospital room for the doctor.  The pain would get so bad that I would begin rhythmically banging my head against the wall screaming for someone to help me. Eventually a doctor would come but it took several hours from the beginning of the pain until I was treated for it.  Needless to say, I had bad memories of the hospital and of doctors.  I didn’t want to have to think about that while experiencing the happy event of my daughter’s birth. Now my plan was shattered.  I had to suppress my shock and sadness over this sudden change in the agenda.  I resigned myself and put my health in the hands of doctors and nurses as opposed to midwives. 

At the hospital, I was given an epidural twice.  The first one didn’t work.  Not very long after I was given an epidural that worked, my nurse and the midwife who followed me from the birthing center informed me that my daughter could not survive normal labor.  Her heart beat was erratic with each contraction.  They told me I had to have an emergency c-section.  To say that I was devastated would be a considerable understatement.  I had feared even before becoming pregnant with this planned pregnancy that I would have to have a c-section.  I began crying uncontrollably. I told my husband that I would die of a pulmonary embolism if I had a c-section.  Chris tried to console and to reassure me I wouldn’t die.  The fear remained and I couldn’t stop crying.

As I cried and nurses crowded my room, I was given the proper anesthesia.  Almost immediately I was being rolled down the hall in my hospital bed.  All of a sudden I couldn’t move.  The panic that overwhelmed me took my breath away. I felt like I was just a head.  This unnerving sensation especially in light of the fact I was not informed it was going to happen caused a feeling of such desperation I couldn’t talk.  I feared I would choke and be unable to breathe if I gave into it. I pushed everything down and experienced a kind of detachment.  Regrettably the fact I was finally going to have my daughter in my arms was something I pushed far back in my mind.  This I know for certain would not have happened if I had given birth in the tranquil quiet surroundings, with kind considerate people who still saw me as a person and not just another number, a person passing through. 

Chris in surgical scrubs appeared beside me at the operating table.  My useless arms were spread out in a way that reminded me of Christ on the Cross.  Suddenly Chris said she was here, she was born, Angelea. A doctor or nurse had her in one of those bassinettes examining her.  He said she was very pink.  My husband asked me if I wanted him to stay or if I wanted him to go with the baby.  I told him to go with the baby.  I regretted it almost immediately after he left.  I began to feel some pain in my chest.  I told the anesthesiologist.  His demeanor told me I had annoyed him with this information. He quickly told me it was normal.

I was suddenly conscious again being rolled in the bed down the hallway to the hosptial room.  My jaw was chattering, crushing my teeth together uncontrollably.  I was upset by this symptom and cried. When I was acknowledged, a nurse in an annoyed fashion said this was a symptom resulting from the anesthesia leaving the body. I thought surely every single one of my teeth would be chipped after this.  I was given strangely gruff treatment from the doctors and the nurses.  I ignored the treatment and anticipated being released.

Chris and I dreamt about having children. We had put off having children so I could finish my degree in social work and also to get into a more agreeable financial situation.  I had a miscarriage two years before finally getting pregnant with Angelea.  We were unsure whether or not we could get pregnant.  It was a time that was hard to live through.  At the time I was working for the Department of Children, Youth and Families as a social worker.   I was helping children and families and through them, society at large.  It was a hard but rewarding job.  I had to quit my job as a result of emotional issues surrounding the miscarriage.  My goal had been to go back to work as a social worker at some point.

As soon as I stopped shaking, I was able to hold my daughter for the first time.  It was unbelievable to hold that little body that had been inside my body for so long.  She was truly a little angel and a lucky one I might add.  I had a terrible uterus infection.  The doctor who opened me up explained that she had never seen anything like it before.  Infants born in this situation were usually very ill and ended up in the NICU.  Miraculously, Angelea was one hundred percent healthy and I was the one who was ill, the ideal situation under the circumstances. 

The next few days in the hospital were filled with frustrating sessions with lactation consultants trying to teach me and my daughter how to breast feed; holding my sleeping daughter; barely handling it when the neonatal nurses took my daughter out of the room for check-ups at too frequent intervals; pumping milk from my breasts with a clumsy machine for 25 or more minutes at a time several times a day;  having family members arrive to welcome my daughter into the world; walking with my husband as we wheeled our daughter in her bassinette through the hallways of the hospital; trying to breast feed my daughter which wasn’t working; and getting my vitals taken at all hours of the night.  Chris and I looked forward to the day we could go home and be with our new baby in peace and comfort. 

Four days after my surgery, I came back to my room after a walk and felt unusually out of breathe.  I told my nurse I was having trouble breathing and I conveyed my fear of a pulmonary embolism to the nurse.  She laughed at me before she dismissed my fear.  She told me I would be in really bad shape if I had a pulmonary embolism.  She must have told someone about this issue because the next morning, very early, a doctor came in and informed me I would be given a test to determine if I had a pulmonary embolism.   She kind of chuckled and said I probably didn’t have one but it wouldn’t hurt to check; after all I had good insurance.

I came back from the test. Immediately nurses made themselves busy in my room, checking my vitals and hooking another pack of some substance on the IV pole.  A doctor came in and informed me I had a pulmonary embolism and I would be receiving blood thinners.  I was stunned and a little frightened. Over the next week, my husband and I were sequestered to the hospital.  Nurses administered blood thinning shots into my arm.  One day another nurse decided to put the medicine into my stomach.  I watched her with the needle.  I studied the needle.  It appeared to be bent.  I mentioned it to the nurse who immediately dismissed my claim.  Each shot she gave me felt so unusually painful given the small size of the needle.  Later on we found out she and other nurses were in fact bending the needles.  Bent needles hurt a lot worse than straight needles.

Life for the time being included: mothering my daughter; working hard to breastfeed her; getting little sleep because of having to pump my breasts; being interrupted by vital-signs-taking-personnel; enduring the administration of shots with bent needles; watching my poor husband lose sleep because of the lack of comfort at night on the little couch/seat in the room; overcoming the period of time my daughter had to have her frenulum (tissue under the tongue) snipped because she was tongue tied which prevented her from breastfeeding correctly and the aftermath of not being able to have her in my room for a couple days which made it more challenging to try to breastfeed her; enduring tests to check my lungs which caused a feeling similar to suffocation; MRI’s of my legs; CT scans; stressed out nurses who treated me rudely; enduring phlebotomists’ attempts to draw blood from my veins after I informed them that I was a hard stick and that was why the nurses on the unit couldn’t do it; thanking G-d when they put a PIC line in which was basically a tube like an IV inserted into my chest so nurses could easily draw blood from it saving me from being a human pincushion; waiting every day for the time a nurse would come into my room and tell us it was time to go home because my blood levels were where they should be. 

After the hospital social worker set up home health services, we were informed we would be going home. My husband and I began packing things up.  The nurse came into our room and began the discharge process.  I sat on the couch with her.  Abruptly, I began to feel ill.  My legs and my back started hurting.  I went to my bed to lie down.  Pain erupted in my upper thigh in the groin area.  It was a type of pain I never felt before.  The doctor involved with my c-section came in and saw I was in pain.  She told me it was a muscle spasm.  The nurse finished the discharge papers.  The pain began to get worse shooting down my leg and wrapping itself around my back.  My husband and the nurse had to pivot me into the wheelchair from the bed.  My legs were becoming weak. I wondered to myself if that was normal.

Before I knew it, the nurse was wheeling me down the hallway at a very fast pace.  I thought the wheels were literally going to spin off.  My husband was at the car piling everything in and strapping the car seat with my daughter inside in the backseat.  My husband had to pivot me from the wheelchair to the car. I could still bear a little weight. The nurse was gone before we finished getting into the car. 

The whole day my husband had to help me to the restroom.  I spent most of the time in bed.  Something was very wrong.  He reminded me that the home health nurse was arriving at the house the next morning.  Meanwhile, the pain started to become excruciating.  I cried. There was the sensation of burning, electrical shocks, the feeling of fire ants burning as they crawled up my leg, the feeling of having spilt ice cold water on my lap, and a feeling of a tight Ace bandage wrapped around my legs.

Nothing took the pain away.  We tried ibprophen. When that didn’t work we tried the prescribed Vicodin. That also had no effect.  The next morning when the home health care nurse arrived, we told her I couldn’t walk and I was having a lot of pain in my legs and back.  My legs hurt to the touch and my pants felt like burning sandpaper rubbing against my skin.  Another symptom was bladder issues.  The home health nurse said it was up to us if we felt we needed to go to the emergency room.  Chris’ response was to say something to the affect of: “We just got home from the hospital. I don’t want to go back. Do you? We can go if you want to.”  Of course, my response was to wait.  I hated the idea of having to leave my baby.  I hoped it would get better. The pain which was already at an intolerable level simply increased and I couldn’t bear the slightest amount of weight.

Soon I came to the realization that my sudden loss of my ability to walk warranted emergency care.  Chris and I with the baby went to the hospital a couple days after being discharged.  The emergency room doctors focused on the fact I had a PE several days earlier.  They gave me pain medicines and then sent me for tests to find out if I had blood clots in my legs.  The doctor told me I didn’t have any clots and sent us home.  The pain medicine prescribed had no effect. 

We went back to the hospital a day or two later.  At that point, it was clear the pain I was experiencing and the burden of not being able to walk was not letting up and forced us to go back for another opinion.  This time they admitted me.  I was given multiple tests in the hospital.  One test was an MRI.  It took the medical personnel three attempts to complete the test because I couldn’t straighten out my leg without screaming in agony.  On the third attempt I had to be completely sedated.  

The doctors couldn’t tell me what I had for the first few days.  Meanwhile, I fell multiple times in the hospital.  Being away from my home and my newborn was beyond depressing.  At some point, I believe I started to detach myself mentally from the situation.  All the while, I futilely believed the doctors would be able to give me a quick procedure and correct the problem immediately. 

One day the doctors informed me that I had iliac hematomas.  They explained I had internal bleeding which was compressing the nerves of my spine.  The c-section doctor commented to the head doctor that I needed to be on nerve pain medicine, Gabapentin.  Once they started giving me that medicine I had a substantial decrease in pain.  I vegetated in my hospital bed. I informed the doctors I had bladder issues.  I also felt like my bladder was going to explode and asked for a catheter.  I was finally given one after a machine revealed my bladder was full.  I appreciated the catheter.  Apparently the fact I had a catheter had infuriated the nurse who came barreling into my room. She had my catheter removed despite my wishes.  In the hospital when you are not in the presence of family members, something strange happens.  Nurses treat you in a rude callous manner.  The same frowning, ill mannered nurse would become a smiling polite angel when a family member was present in the room.  I always considered myself a strong willed person; however, I felt utterly powerless and dejected.

I began to have trouble breathing.  I would begin to relax when suddenly I would gasp for air.  I was given oxygen. I started to fear not being able to breathe.  This anxiety followed me to the physical rehabilitation center where I spent a couple weeks.  While there I fell several times while learning how to use the walker, the bedside commode, and how to move myself from the hospital bed to the wheel chair.  I was released when the social worker had set up follow-up appointments and home health.  She explained I couldn’t leave the rehabilitation center unless I had a primary care physician to prescribe my much needed medicine.  I gave the name of my husband’s new doctor who we were planning to have as a family physician.

I was using a walker and a wheelchair when I was taking care of my baby when I left the facility.  I had a lot of anxiety, depression, and the feeling of such utter hopelessness over the events of the last 30 or so days.  My life had taken an extreme turn.  I continued to pump out my breast milk because I wanted to be able to feed my daughter once I was no longer on my pain medicines.  It wouldn’t hit me until much later I wouldn’t ever be able to give my infant breast milk because I had to take these medicines in order to function.  Without them, I would be curled up in a ball in bed screaming for someone to make me unconscious.  The pain was something no one could live with no matter the size of their will power.  I had my daughter to take care of.

I saw many doctors over the course of the next couple weeks.  I continued to go to physical therapy after in-home therapy ended. My c-section doctor assured me I would be able to walk and be free of pain once the hematomas were absorbed into my tissues.  This gave me a sense of hope.  I saw Dr. N., a neurologist.  This was an appointment I was anticipating for weeks because I desperately needed answers, a prognosis.  When I saw him, he complained at length about medical insurance interfering.  He then told me: “If I were you, I would get my tubes tied.”  These comments were shocking to me.  My heart began to sink even lower than it already was.  I began to fight back tears as I began to feel a heavy weight being pressed down on my chest.  The last flicker of hope went out when he told me: “I don’t know why you are here.  I am not an expert on iliac hematomas.” 

I had seen my husband’s doctor, our new family physician, Dr. L. a couple times and was impressed by his friendliness.  I was able to take a deep breath and trust in this doctor.  One day I went to see him.  He came into the examining room.  His demeanor was different. He looked uncomfortable and stared at the floor, not at me like he had done before.  I sensed immediately there was something wrong. He did not greet me with a handshake and a smile.  He sat, his back to me.  He told me: “You are on too much pain medicine.  We have to start taking you off.”  I was shocked.  At the time, I was still having quite a bit of background pain.  My pain levels were out of control and erratic.  I was barely getting by with the pain I was still enduring.  I responded to him: “Doesn’t pain level determine when to go down in dosage?  My pain levels are still high.” 

Dr. L seemed incensed by this answer and looked me in the eye with an expression of pure accusation and insensitivity. He responded: “I’m not sure you’re even in pain. You just came in off the street.”  That comment made this sick feeling erupt in my stomach.  I fought the tears I knew were coming.  When you are someone with chronic pain issues especially to the extent of the pain I was experiencing, the threat of having your pain medicine dosage being altered was equal to being threatened with being thrown into some kind of torture chamber.  I didn’t think my experiences and my condition could be questioned in light of everything that had happened to me.  I was the last person who would choose this reality of being stuck taking pain medicine.  My plan before the birth of my daughter was to have at least two children.  Having pain and being on pain medicine meant I could not fulfill my dreams for my family.  This continued to devastate me and was the source of extreme emotional pain.

Dr. L. went on to tell me that the amount of pain medicine I was on was equal to twenty-seven Percocet.  He told me: “I don’t want to be involved in any future addiction.”  I tried to slow down my rapidly beating heart.  My stomach was twisting tighter making me want to vomit.  I decided to appeal to reason: “What is the definition of addiction?” He dismissed my question.  I went on: “I don’t have a history of addiction or abuse.  I don’t even smoke or drink.”  Physical addiction is completely different than psychological addiction and abuse.  The fact is people like me are less likely to abuse their medicines than the general population.  He responded: “You smoke. I thought you told me….”   He looked into his paperwork which took him a few minutes. I thought he had mistaken me for a different patient. What else could explain his sudden lack of empathy? He faced me and said: “Come on, you don’t really want to use a walker, do you?”

I didn’t know how to respond.  All I could do was stare bewildered.  He was questioning everything I had gone through, the loss of my ability to walk and struggle to use the walker, the loss of my life as I knew it, the loss of my social work career plans.  Did he actually think I was using a walker for the heck of it?  I felt lucky to be using a walker since I couldn’t even do that just weeks earlier.  He questioned the fact I had PCOS which is an infertility issue.  For some unexplainable reason, I had become a lair, a criminal, a drug abuser in his eyes, and all I had done was become disabled.  I wondered what happened to the Hippocratic Oath doctors apparently take.  This was “Do no harm”?

I started crying.  I felt so small and insignificant. On top of everything else I had to endure, this treatment I was getting was too much. He had me sign a contract that basically said I would only get prescriptions of these narcotics from him.  I felt humiliated.  I wiped my face with a tissue and signed his paper.  He said to me before walking out of the room: “G-d bless.”

Even now as I write this, this incident had such a profound effect on me I still discuss it with my therapist and experience anxiety before any doctor appointment.  It was an incident that also led me to get a different doctor.  After three and a half months after the onset of my symptoms and being misdiagnosed, Dr. H. diagnosed me with transverse myelitis after he reviewed my records and gave me an examination. He assured me the epidural I received in the hospital had nothing to do with what I was experiencing.  He also assured me this was never caused by iliac hematomas.  He said it could take eighteen to twenty-four months after the onset of symptoms to determine how my life would be like for the duration.  I was relieved to have a diagnosis at last.  There was speculation the uterine infection I had led to all this mayhem.  I did some reading about it and joined the TM support group in my city.  Life took on a kind of normalcy, a pattern with no more major, unusual pitfalls.  I still experience pain in my leg.  I had been so relieved this ailment was no longer a mystery.  A named illness felt like a conquerable one.

Learning how to walk again was just a preface to the start of the real journey. One part of that new journey is trying to retain the positive attributes of my personality and resisting the negative attributes of becoming more on edge, hopeless, and depressed.  I am still working on trying to rise above the ill treatment I had received from insensitive, heartless doctors to whom I had given my power.  I still struggle with trying to reclaim that power.  Despite it all, I remain a spiritually-oriented individual.  This part of who I am led to my dream of helping people in need. It continues to aide my thinking and reasoning. The other part, the hardest part of learning how to walk again was learning how to walk on a completely different path than the one I had set out on and had so actively pursued.  Learning to come to terms with not having control anymore continues to be a daily lesson on this path.  I have to trust in something greater than myself.

The path I was on before consisted of raising a conscientious, healthy female; finding a career as a social worker helping families and children; becoming healthier; having more children and becoming a foster parent with Chris.  Now it is simply living on a day-to-day basis. The fact I cannot have children as long as I am sick and on these medicines remains something I greatly struggle with.  One shining light remains in my life, my daughter, Angelea. It is for her that I smile and laugh even though sometimes I feel I am dying inside from enduring the pain, feeling sick, and isolated.  All but one of the dreams I had before becoming sick had slowly flickered out and disappeared like the sun during sunset.  Maybe it won’t be like this forever. Those dreams could reappear again like the sun during sunrise after this sudden detour comes to a thankful close.  At that time, I can reconnect with a different destiny that resembles the one I had, the one I had worked so hard to achieve, the one that doesn’t involve pain.