Don’t Give Up

My story begins in July 1996. I was 35 weeks pregnant with our first child and looking forward to our new life ahead as a growing family. I awoke early on a Monday morning with aching arms. Being pregnant, I didn’t take anything to relieve the pain but no matter what I did I couldn’t find a position that was comfortable and that would relieve the pain. I phoned the obstetrician’s rooms, thinking that my problem may be pregnancy related. I was told to go in straight away. My husband was home that morning (which was very unusual) so he was available to take me to the doctor. I remember turning and taking a last look in through the front door to say goodbye to our dogs, just in case we were gone for a while.

Upon getting into the car I couldn’t open the door handle, and once seated in the passenger’s seat I needed Bernard to fasten the seat belt. We didn’t say much to each other on the way to the obstetrician’s rooms. I think we were both too scared to even try to speculate what was happening and just hoped it would be sorted soon after we arrived. When I went to get out of the car, I couldn’t pull myself up out of the seat. With help I staggered into the surgery and sat down. I was unable to stand up again. The doctor’s first comment was ‘It looks like transverse myelitis’. From the onset of arm pain to paralysis from my neck down took 2 hours.

An ambulance was called and I was taken to hospital. There were a lot of arguments among the staff about what actually was going on with me. I was starting to panic as the staff took over. Questions were being fired at me and the staff seemed to be frustrated that nothing I said was helping them. After an MRI I eventually ended up on the neurology ward, being given morphine for pain. Transverse Myelitis seemed to be the only possible diagnosis. I don’t remember a great deal about the next three weeks in that hospital. My symptoms indicated that I had a lesion around C4 or C5. I spent most of the next 2 weeks trying to breathe comfortably and battle a fever. The pain in my neck was unbearable, but I stopped taking morphine as it made me feel terrible. Further tests showed inflammation in the spinal cord from C5 to T7.

A week later I was stable enough to be moved to a maternity hospital. Within hours of arriving I went into labour and our son was born 22 hours later (natural birth). It was a bittersweet moment, as the future looked scary.

Adam was a healthy baby and we were grateful for that. I had to accept everybody else’s help and watch other sets of hands care for my son. I needed to be transferred to the local rehabilitation Hospital but the department had an MRSA outbreak and I could not be released until the MRSA had been cleared up. Two weeks after Adam was born we were moved to the neurology unit of the hospital where I could commence some sort of rehabilitation and keep Adam on the ward with me. Upon arriving at the rehabilitation hospital it was discovered that I had developed a deep pressure sore at the base of my spine. I had plastic surgery soon afterwards, which became infected. I remember trying to feed Adam whilst being turned from side to side. Our room had no windows so that was quite depressing and all I could see were tubes coming out of me. After 2 months it was decided that due to my lack of progress I should be moved to the spinal unit within the same hospital grounds. The neurologist had told me that it was unlikely I would gain any recovery as the attack had been so severe and the nursing home would be the best place for me.

The spinal unit was harsh. Adam went home to be cared for by grandparents who had come from the east coast to help. This was no place for a baby in the spinal unit. Bernard brought him in every night and we treasured that small amount of time together each day. I don’t really have anything nice to say about that place except that it was good to leave. By this time I had been hospitalised for seven months. The medical staff invested a lot of time doing their best to convince me to expect minimal improvement from that stage onwards. I was floundering in this large institution and I finally was granted the opportunity to try and cope at home. I arrived home to be greeted by our two dogs and cat who apart from a couple of weekend visits had barely seen me in that time. We had no help from outside and the disability services commission had refused to offer me any funding. A friend of mine had already approached some politicians to try and find a way to get some help. They were in opposition to the government at the time but fought really hard for our cause. Finally it was agreed that the only way would be to get assistance from the media. Just before the story was aired on television the Commission offered me the funding that I needed and we could get on with our lives.

I decided that despite everything I had been told and all of the negativity I’d been surrounded by in hospital, I was going to continue to work hard towards making whatever recovery I could. It was the least I could do for my family. So in between helping build up our new business as well as raising Adam, I got myself into the rhythm of being disciplined with physiotherapy as well as conjuring up my own occupational therapy to keep myself motivated, especially with my hands. There was still very little I could do at this stage. By the time Adam was about 11 months old I could hold him whilst sitting upright. Without him having become stronger himself, I couldn’t have done it. We continued on with family outings and meeting up with friends as normally as possible, but at times it was exhausting.

Over time I graduated from a tilt table to a standing frame. After a couple of years, my GP suggested I try Feldenkrais. I started in 1998 on a weekly basis with a practitioner who was also a physiotherapist. I still see her to this day. By 2000, she suggested I start hydrotherapy. I found a hydro therapist and she was happy for me to bring Adam along as well. He would be in a rubber ring bobbing around while she pulled him along with us as I did my exercises. Hydrotherapy ceased for a while later on as I became ill and had those issues to deal with. Several years later I was back in the pool after being encouraged by my Feldenkrais practitioner. Access to the pool was difficult and it reached the point where I decided to put my own pool in. I was always a keen swimmer, preferring the ocean; so being in the water was great. Getting in the pool had to be easy, so we installed 4 1/2 meter swim spa upstairs right outside our living area. Bernard and Adam use it a lot too. Having my own pool to use exactly as I wished was brilliant. I’ve had that pool for 18 months now and I have muscles working right down to my knees. I have regained decent posture. I work as hard as I can in the pool for about 15 hours a week, including swimming backstroke for extended periods, with the same hydro therapist kindly coming to my house to perform regular assessments.

Up until last year I hadn’t seen a neurologist since 1997. An old friend of mine who has multiple sclerosis recommended one who had a much more positive attitude than those I had seen before. As a result of seeing him I am now on Lyrica instead of Baclofen which has made a lot of difference to my life. The neurologist described me as paraplegic with upper limb plegia. Yesterday, my Feldenkrais practitioner started teaching me how to roll onto my side and pull my legs up as if preparing to crawl. She wasn’t sure if I would be able to do it, but by the end of the session I seemed to have the pattern of movement worked out. I hope I can remember when I try again with her next week. The more I am learning to move, the more sensation I’m getting back. I’m healthier than a lot of my friends. Continuing physiotherapy has only been a win-win for me. I have not been to any hospital since I left the spinal unit in February 1997 and I have no contractures. I don’t need any pain medication except for Panadol occasionally. I haven’t suffered from depression for years. None of the autonomic issues are present anymore. I can cough. I’m trying to start my physio earlier in the day to make more time for other things but I just keep being given more and more exercises to do. Life is really busy but it’s worth it.

I’m so glad I didn’t listen to anyone back then in hospital. The more I keep working the healthier I get and the better I feel. I still can’t believe it when I look down on my legs and can see muscle. If I stop, I’m sure I would deteriorate mentally and physically. We’re a happy family.

At night I hear the ocean pounding on the reef. One day I just might be able to feel its cold waters again…

~ J. N. | Perth, Australia