Lesley Hellaby

Overture

My name is Lesley Hellaby.
I am a 47-year-old female Medical Practitioner living in Auckland, New Zealand and have been officially diagnosed with Multiple Sclerosis since 1995.
In hindsight, I had had many signs and symptoms characteristic of MS and had probably had my first episode of demyelination as a Medical student aged 21yrs but chose to attribute this and many other fleeting episodic symptoms to more benign pathology, as have so many others who are finally diagnosed with MS. One way or another I somehow managed to pick myself up and at least outwardly appeared to have returned to my usual life after the protracted and harrowing reaction I had undergone at the time of the initial diagnosis of MS.

I first came across the MSIF internet site in 2003, whilst I was convalescing from a theoretically routine surgical procedure, quite unrelated to MS, which had resulted in me becoming the unfortunate victim of all the small print complications, which seem to afflict physicians undergoing any form of medical procedure!

It was a particularly long hot summer, my three children all at home bored and fractious, and I was confined to bed. It seemed to me that I was letting my children down and allowing my life to be wasted away as I could not seem to pull myself together and get on with it! To me, life seemed to have reached a “nadir” and I felt that I could not continue on - nor did I want to - not even for my own children’s sake; such was the depth of my despondency. I was in a state of total dejection, thinking that I would never be able to feel happy again, let alone contribute to the world as I had idealistically aspired to. I came upon the MSIF people’s profile site and I rather tentatively wrote those first 7 words …”Not a good day. Overheated and tired.” --- 12.01.04

The next day I went back into the MSIF site and I had a reply! This contact pointed me in a direction, which eventually enabled me to realise my real self and develop a new purpose in life. It provided me with a safe and anonymous contact where I was able to share experiences with others.

MS and Me

Jacqueline Du Pre has always been an idol of mine. Her interpretation of the Elgar Cello Concerto is more poignant with the knowledge that MS eventually prematurely claims her talent. I believed there was nothing I could do to alter the course or the outcome of what I saw as a relentlessly unpredictable descent into a total loss of independence and cognitive functioning.

The uncertainty of MS destroyed any ability I may have possessed to acquire a realistic and secure perception about my own life. My thinking became paralysed.
It was fear that dominated my life and in my attempts to avoid facing it I used as many methods imaginable - some positive, more negative and a few precariously destructive.

Survival

I survived. A miracle I attribute to human companionship. I benefited from friendship with people who had the emotional courage to witness and acknowledge so much intense pain, care about me no matter what I may do or what may happen. This gave me the comfort I needed to regain confidence that life was worth living and continues to sustain me today.

“Only the wounded physician heals”

There is a saying “Only the wounded physician heals”.

Only yesterday, while in the midst of writing this profile I had a cathartic experience. I had just begun a new position as the physician attending a hospital for those in the end stages of life. I was nervous and unsure about my ability to care for patients for whom many say there is no more to be done. During my first ward round, I glanced at a woman who appeared to be distressed but was not actually on my list. I went into her room and attempted to understand what her pleading eyes were trying to say.
The nursing staff were somewhat reluctant to give me any information and I was hurried on and reassured that another nurse would attend to what was apparently a frequent occurrence for this woman.

Some time later after the round was completed, I asked again about the woman’s diagnosis and plight. Very reluctantly with nervous glances, I was informed that the woman had end stage MS and had recently had an exacerbation that had robbed her of any ability to speak or to move her head. I had almost forgotten that I was a person with MS and hence my internal response was unexpected and overwhelming.
I somehow managed to remain objective and insisted that we all go back and attempt to make sense of her distress. The woman was distressed and very quickly we could see that her earlobe was folded under her head and that apparently she had been lying on it for the greater part of the day. Once placed in a more comfortable position and the need for increased care for people who have locked in syndrome explained and initiated, she became calmer and I felt as if I had passed some kind of test in the eyes of the nursing staff.

And now…

The inner turmoil I had managed to keep under strict control until I had left the Hospital unleashed itself into some kind of primeval angst, the words from Handel’s’ Messiah reverberating in my head:

“He was despised … despised and rejected … rejected of men … A man of sorrows ... A man of sorrows and acquainted with grief… A man of sorrows and acquainted with grief”

I could not verbalise a rationale for my acute anguish to my colleague who was driving me home. I was obsessed with an urgent compulsion to try to justify my intense feelings. I felt that somehow I would be doomed to repeat all of my previous unhelpful coping behaviours if I could not understand my unexpected and apparent over-reaction to caring for a patient with MS when I had forgotten about being a person with MS myself. Thus, I could never be capable of honestly carrying out my newly appointed role as a “guru” to others with MS, or to continue with my fledging attempts in MS research.

Once again, it was “the firmness of human companionship as the one resource available in the depth of suffering”… Euripides … that allowed me to feel comfortable about expressing my previously denied feelings of sadness and anger -much to my surprise after having so vehemently denied that this played anything but a minor part!

It is only now that I feel honestly confident that my life has in fact opened up in so many ways that would never have been possible if I had not been able to examine my true feelings.

Since that first tentative reaching out to the anonymous MSIF site much has changed:
In my family life, my children have had to mature more quickly than their peers but they are sensitive to others feelings, a quality that makes me feel especially proud. I have met many inspirational people through becoming involved with MS societies, researchers, and interested benefactors, who have encouraged me to change my direction in medicine to one where I feel more in control and closer to my original hope of contributing to the world.

I was encouraged to submit an abstract relating to an adverse effect I experienced after trying a new immunomodulator, which to my surprise was accepted for a presentation at a Scientific Research Conference and submitted for potential publication in an International Journal. The quest to understand the pathogenesis of MS, new treatments and ultimately a cure is an exciting field of medicine to be involved in.

I have also been elected as the New Zealand delegate on the International Medical and Scientific Research Board of the MSIF.


A Ms can do anything…

It may be a cliché to say that the ease and confidence I feel in caring for others has been enhanced by facing my own potentially degenerative disease.
Recognising the importance of meeting my own needs has proved beneficial to my sense of well being. Also taking the time to pursue all the diverse interests and activities I enjoy so much is something that I now place as a matter of necessity in my life. Music is a particular passion of mine as is travelling.


I have recently returned from a challenging trip to Africa to witness the migration and calving of the gnu in Tanzania. I was able to forget that I had MS and immerse myself in the plight of the Masaai people with their enormous susceptibility to malaria, AIDS, and poverty.


MS in Perspective

I am grateful that I can now find the courage to walk into a room where others are experiencing intense suffering, sit along side and acknowledge their pain confident that I am actually helping them, because I have experienced the enormous comfort that this brings myself. This feeling that I can make a difference causes me to feel good about myself and my self worth soars.

I am frequently seen as an irritatingly verbose, at times perverse, inimitable smart aleck and a querulous person who delights in showing a completely non-sensical self-destructive approach towards those in authority but who loves to laugh at herself and with others. Since having MS I have tended to become extreme in acting out the more unhelpful characteristics of my personality. It has become clear to me that I have been trying to avoid acknowledging the reality of living with MS and I am beginning to realise just how counterproductive some of these behaviours were and my new aim is now to try and moderate some of these needless and potentially destructive complications I create for myself.

Ad Astra per Ardua

I would like to encourage those who are newly diagnosed not to give up hope and to use all the personal and medical resources that are available to you.

“No MS is an Island”. There is no need to follow the often-tortuous path I have lead to get to where I am today --- I am no hero ---“martyrdom is not a happy state” --- there is encouragement and companionship in the MSIF network, which offers a simpler and easier path towards contentment.


I am certainly grateful they were there for me.





If you would like to contact Lesley, please send your e-mails to info@msif.org and we will pass your message on.