Naomi’s Life With Arthritis – A Long Term Project

Home alone last night, I was watching the exceptional BBC series “The Genius of Photography“, when I was struck by inspiration. I have felt that I have been lacking a direction in my photography. Suddenly it occurred to me, that I have been ignoring a very important subject, my wife.

Naomi is an exceptional and inspirational person, who has suffered most of her life with the debilitating disease, Juvenile Onset Rheumatoid Arthritis, never more than now. She is currently in hospital, fighting an infection of her prosthetic knee, a complication of the treatment of her disease. With this recent issue, the interest and concern from family and friends has been great, and it has reminded me to varying degrees how little most people understand the disease, and more importantly, what it is like to live with it.

Our family and friends, in particular, generally have a good understanding of what Naomi is going through, but that only goes so far. The general public understands even less. I feel that many people have a poor appreciation of what it is like to experience life with a debilitating chronic disease.

A New Project

I intend to photograph Naomi, and expose what her life is like, living with arthritis. I want to take a journalistic and documentary style, something which I have never really done before. I want to show Naomi’s life as it is, conveying the reality and emotion as clearly as possible. It won’t be art, and it probably won’t be pretty, and I apologise to Naomi in advance if the photos show her in a less than flattering light. However I firmly believe that an unfettered, unfiltered view of this disease is essential. She has given me her consent to undertake this project.

This will be a learning experience for me, and to an extent, I will be exposing myself and my life’s experiences through these photos as well. I will never be able to be truly objective and removed from the subject in the true journalistic sense, as I am very much a part of Naomi’s life, and her disease affects me as well in many ways. I expect this to be a difficult and emotional experience for us both.

I hope that you will find this project interesting and informative, and hopefully I will be able to convey what I think is the most important thing about Naomi’s life with arthritis: the hope and determination this inspirational girl shows every single day of her life.

24th Day in Hospital

For those who are following the saga, the latest news is somewhat mixed. Naomi was expected to be discharged on Monday, to be treated for the next six weeks via “Hospital in the Home” with daily home visits by nursing staff. Unfortunately a test of a key marker for infection (CRP for the medically inclined) just hours before she was planning to leave showed the marker level to have jumped from 15 to 158! This concerned but did not alarm the doctors, but then could not let her go home.

This morning, a follow up test of the same marker showed a minimal decrease to 157, not any better, but no worse either. Naomi suggested that the marker – which indicates inflammation, a typical by-product of infection – may have gone up due to the worsening of her arthritis as a result of needing to come off the drug trial, which she has been on for three years. Her specialist, however, does not believe this is the cause, unfortunately pointing the finger of suspicion back to the infection.

Again the doctors are concerned but not alarmed. This is mostly because Naomi appears otherwise to be in good health, not showing other symptoms one might expect from a bad infection, such as fevers or nausea. For the time being they want to keep her in hospital for observation to see what happens to the CRP levels. They have also given her a moderate increase in her dose of antibiotics.

So for now it’s a waiting game.