How I use my experience to prevent future deathsThe story of my daughter’s illness and death

Mille Niss, my lovely daughter was a poet and a web artist. I actively collected all her poems and took them to a publisher for soliciting. After I submitted her work, I arranged for permissions and took care of her literary legacy and participated in conference presentations and tributes done in her honor. Due to her rather wicked sense of humor, that work really sustained me and helped me to recollect my energy. It prepared me adequately for the next big task which was narrating my daughter’s story of illnesses in her words and in my own words as well as the story present in her official medical records.

Having to go through the experience of watching my daughter die isn’t easy and this is something that I live with everyday. For years, she lived with a non lethal, rare illness known as Behcet’s Disease that often imposed sudden emergencies. Was coded and visited ICUs regularly and we knew the kind of risk that the disease carried especially when doctors failed to understand and we knew that death was always in the waiting.

During the same year, I also put together her various medical records and I followed every medical contract we had entered in previously and also filed two complaints as well with state department of health. I canceled her appointments and disposed off her equipment and medications and settled on litigation. Second book was a little painful despite having sweetened the task by deciding to experiment with book design and graphics just like we did with Millie in our past collaborations. But Millie really wanted the project and I was sure that working on it would enable me to focus on issues of both her illness and death adequately and to come up with a base for development of broader safety efforts for patients.

Using my experience to better patient outcomes

I am both a researcher and psychologist clinician by profession and I have been greatly involved in system analysis and patient advocacy. Through my profession, I have provided many conference presentations, poetry readings and workshops. I have an obligation both as a social scientist and parent to engage actively in patient advocacy so that I can help providers of health care in their work. Being a lay person, I really can’t do much to better patient outcomes because I don’t have the necessary education or position of changing things within a medical office or hospital. The only thing I can do is highlighting the experience I have gone through and hoping that it will change things and prevent deaths in the future. If either my ideas or our experience are of any usefulness to you, it would be a great honor if you joined our efforts.