What was Lost

Julie did not want to include this in her website but was encouraged to do so by several family members and friends. They felt that a sense of the loss of many parts of life and what could have been would resonate with the community.

One of Julie’s coping strategies for the many facets of her condition is to have made peace with what has passed and that what has been lost is a part of that past. She is now focussed on what she can do to make her future one which is full and productive for herself and for others. She also didn’t want to have people feeling sorry for her. She explained it as just something which she has had to live with and to make the most of what was possible. It was just the way her genetic cards were dealt. She fought extremely hard to do the best possible in life. This is something of which she is proud despite the recurring intrusion of her conditions on every part of her life.

Some Notable Events and Experiences Missed in Julie’s Life

• Unable to work to the best of her abilities and interests in school and in higher education. Unable to achieve the standards of learning which she so desired.

• Unable to follow her strong interests in medicine, anthropology (study of humanity), education, and working for equality in all areas.

• The loss of having a career.

• The loss of having a family.

• Loss of babies.

• The loss of being able to be with her love living on the opposite side of the world. Until a diagnosis was found, she didn’t want to be a burden on him. She let him go to enjoy life but they always came back together. Tragically, he was killed in a car accident before they could reunite in person.

• The loss of independence.

• Missing the birth and the first six months of the life of her beloved nephew.

• The loss of having the ability to make decisions without her brainstem disability influencing the process.

• The loss of the chances of succeeding in many opportunities she was presented with over her life.

• The loss of stability of any type.

• Working hard towards goals only to burn out or be overwhelmed with symptoms rendering her unable to reach those goals.

• The loss of friendships or the loss of the strong connections with her friends as she was increasingly unable to stay in contact with them due to fatigue so intense that leaves her too exhausted and weak to write or to even talk on the phone. It breaks her heart.

• The loss of not being able to be with her love and then to lose him in a car accident and not be able to attend his funeral due to fatigue too strong to fly such a long distance.

• Losing her opportunity to work for and fight for equality causes and anti-discrimination causes.

• Losing her resilience to those who would aim to take advantage of her often impaired judgement and leave her financially and emotionally broke and broken.

• Losing her ability to continue in her father’s footsteps to become a water-skier due to the overwhelming physical pain and exhaustion which, even as a youth, would leave her vomiting and unable to eat or to move out of bed for days. Still, this knowledge did not deter her from wanting to participate as fully and to the best of her ability. “You’re not relying hard enough if you don’t fall off!” being her catch phrase.

The Past Nine Years

Take a moment to think back over the past decade. What have you done? What have you achieved? What experiences have you had? Where have you been? Who did you meet? What events did you attend? Who arrived into you family and who left it? What were your everyday routines and activities?

Every one of those things are things which Julie has missed. Her life has consisted of spending around 23 hours each day in bed. Sometimes barely able to move without intense pain. In that one or so hours when she is not in bed, she is doing those everyday tasks which the vast majority of people take for granted and barely think about - taking a shower, changing clothes, going to the bathroom, eating, and feeding her much appreciated company, her cat, Edith Piaf.

Julie must have a very specialised diet to prevent provoking her immune system and creating excessive inflammation throughout her body. Despite her fatigue, she manages to prepare something most days. Cooking is a great love of hers and, when she does have a relatively good day, she will prepare meals to be frozen for when she can’t cook. She makes special breads (low carbohydrate) and mueslis which also tide her through until the next occasion when she can manage an entire hour (or occasionally two!) to stock up on foods which her diet allows. When these run out and she is too fatigued to make more, she can’t adhere to her diet, her already severe symptoms become stronger. This becomes a cycle of increased inflammation and pain and inability to prepare the necessary foods.

She has spent much of her awake time in research and consultation with medical experts across the globe. It is only with her immense determination that she was able to get her diagnoses and to discover that she had hope of a future where she would no longer be seeing life pass her by and to do so in much less pain and much less impairment.

Please consider helping Julie to gain a new life of joy, happiness, less pain, productivity, and to fighting for others who find themselves disadvantaged and stigmatised due to differences and discrimination.

Helping one can help many.