Arthritis has always been a vague understanding of a disease of the joints for as long as I can remember. I just know it as something that gives your joints the “wind chill”. So it came as a welcomed opportunity to delve into the disease when I agreed to take part in AbbVie‘s worldwide art campaign named “Perspectives – Art, Inflammation and Me”, to offer my perspectives of being an arthritic patient as part of Mudframes’ CSR efforts.
This highly interactive art campaign brings artists together with people with an IMID (immune-mediated inflammatory disease) to offer a unique insight into what it means to live with one of these diseases. Why “Perspectives”? Perspective is a technique or process used to represent objects as they might appear to the eye (Perspective Art). It is also the ability to view or interpret things from a relative – or in my case – from a patient’s point of view.
The Perspectives initiative will see a series of paintings, sculptures, photos and other artistic expressions developed around the world to creatively portray and help others understand the impact of IMIDs. Each artistic expression will depict a significant “moment of meaning” within the person’s journey with their disease.
A panel of judges in Malaysia will select the best art piece (i.e. ONE) to represent each therapy area – Rheumatoid Arthritis, Juvenile Idiopathic Arthritis, Psoriasis and Inflammatory Bowel Disease (Crohn’s Disease and Ulcerative Collitis). These will be subsequently sent for global judging where a group of international panel representing international art expos, museums, patient and medical associations, along with AbbVie executives will select the most creative and impactful artworks from each country for an internal launch and external debut in 2014.
I was paired with two arthritic patients during the recent World Arthritis Day celebration in Seremban. As the event drew to a close, I spent some time speaking with two female patients at one of the halls in the National Council of Women’s Organisations (NCWO) premise. This series of four images (two representing each patient) are symbolic of the patients’ experiences and journey with rheumatoid arthritis.
The arthritic fingers clinging helplessly on a row of metal bars signifies the patient’s forlornness and deprivation of freedom as though being incarcerated in a dark world of imprisonment. This representation is highly characteristic of the patient’s testimony of not being able to perform her favourite activities as a result of her disability from arthritis.
“I have always loved swimming and sewing. But since I was diagnosed with arthritis a year after the birth of my second son, I felt helpless. I couldn’t perform my favourite activities anymore. It’s no different being in a prison. It feels as though my freedom and wants have been completely stripped off me,” Siti (not her real name) says.
Disability is both a physical and mental handicap that prevents a person from living a full and normal life. It puts someone at a position of great disadvantage. Incapacitated, one is not being able to do what one wants. This visual of imprisonment resonates strongly with this phenomenon of being held back behind bars. She wouldn’t have been able to enjoy playing with her grandchildren or actively involved in sports activities. However, as the gap between the bars show, she could still watch in vicarious thrill of all the many wonderful things that revolve around her two children. More importantly, it’s a two way channel through which she could reach out to them. All is not lost.
Nails In Hand
The arthritic fingers grasping a bunch of nails echoes the patient’s sensation of pain experienced as though being swarmed by red ants and cold prickly needles. The overflowing nails signify the immense pain felt occasionally especially during cold weather or even spending too long a time at the shopping mall. The tight grip of nails also connotes her determination and strength in overcoming the obstacles arthritis poses. This symbolic fist of control stands out against a gloomy and pitch black backdrop of pain and lost.
“Mornings are especially a dreadful moment when it is pretty cold. The coldness of the air is tingling, piercing and especially stinging. Arthritis is a disease which is highly averse to the cold weather. I don’t like being in the cold. That includes being in a car with too cold an A/C. I feel like a sunflower at times, craving for the warmth of the sun. The joy and pleasure of being washed over with warmth in the transitioning away from cold makes me ‘bloom’ in comfort,” Nora (not her real name) says.
I could identify really well how it feels to have your hands crawled all over with red ants and bitten by it. I experienced the same too when any part of my body is numbed from the lack of blood flow. It feels just like a million needles nudging at you. Perhaps the sensation is magnified many folds by grasping tightly at a bunch of nails. It’s painful. I guess, this visual is also strongly representative of the fact that the patient has come to “grips” with the disease. As with any experiences, familiarity breeds desensitization of the condition. One needs to be strong and brave to grasp a bunch of nails tightly. At least I know she is, without a doubt.
A puppeteer manipulates puppets in a series of actions; the former being Arthritis, the latter, the patient. More often than not, an arthritis patient’s actions and abilities are controlled and greatly influenced by the disease. The patient has lost their free will to act and is hugely defined by what the disease allows them to do. However, over time, the patient is able to resist this control and eventually break free from this bondage by adapting as evidenced by the frail looking ropes.
“It’s difficult to eat with my hands nowadays. I can’t cup my hands without gaps in between my deformed fingers. Due to lost of strength in my hand, I have to pull up the car hand brake with two hands! When I would like to move my fingers in a certain direction, I couldn’t because of the permanent deformity. Hence, I have to compensate by moving my arm in a certain direction and motion to perform the task. Joint damage by arthritis is irreversible. As much as you’d like to move in a certain way, you just can’t without adapting and improvising. It’s as though there’s this unseen force possessing you against your will,” Siti (not her real name) says.
It appears that all of the activities a patient tries to perform smoothly isn’t perfectly what they hope to be. The mind is willing but the body not. The patient may want to reach their back for a scratch but their arthritis-ravaged shoulder joints may not allow them to. A patient may want to bend over to pick up an item but is unable to do so because of their physical disability. Arthritis is a disease with a mind of its own, attempting to exert its deadly influence over the patient. However, through sheer determination and creativity, any patient can overcome this. If I have arthritis, I would feel like a puppet. But if I’m mentally strong, I can break free from these strands of manipulative ropes!
The arthritic fingers clutching the clock signify an attempt at grappling with the disease on a constant struggle to battle against time. Any basic movement is slow and an arduous effort. Executing any actions seem to take forever. Time suddenly seems intangible, immaterial and “unidentifiable” as evidenced by the unmarked clock. It appears this setback impinges on one’s freedom and quality of life, but it also serves to harden the fighting spirit to overcome this disability creatively as demonstrated by this patient; hence the white clock in an otherwise gloomy setting. Hope prevails.
“A bath session of 2 hours includes a mere 5-10 min of actual showering; I have to extend my arms/shoulders and bend in a complicated “dance” move to bathe. The rest of the time is spent resting from exhaustion! I have to plan my actions well to avoid inconvenience of having to move much. For instance, I lay out the morning necessities by my bedside; i.e. vitamins, tooth brush etc, so they are easily within reach. As a result, I got creative! When I make coffee, I ensure I sweeten it first to avoid making another trip to the kitchen once I seat myself down at the living room. Planning ahead keeps my mind active and helps me move smoothly through the day,” Nora (not her real name) says.
The first thought that struck me upon hearing her getting about her daily routine was what a constant struggle it was against time to accomplish the most basic functions. It feels as though the patient easily loses track of time as they get absorbed into accomplishing a task. Time just stand still. It is said that time heals all things. But it can be the most torturous experience for a patient riddled with uncontrolled severe arthritis. It either works against you, or work with you. This jovial patient has clearly chosen the latter by being creative and mentally alert to combat this debilitating disease.
I made a 36″ x 24″ foam board-mounted vinyl print out of each of the pictures above to be donated to AbbVie, who will be using them as educational tools to raise awareness of IMIDs. I chose foam board as I needed a very lightweight material for ease of handling and transport, as these art pieces may go on an international tour and exhibitions if selected.
This CSR project has been both an insightful and eye-opening experience for me. Learning the disease and empathizing with the patients’ experiences have been especially humbling and helpful to get a grasp of living with this debilitating medical condition.
More importantly, I get a first hand appreciation of the determination and courage of these patients in dealing with arthritis with an aura of hopeful joy. It sure does gives the notion that in the end, it’s all just a matter of the mind.
I wish I could have completed the series on Psoriasis and other diseases in the IMID group for a more comprehensive coverage but unfortunately, this initiative came to my knowledge too late a time. Perhaps with funding from the right parties and more planning, growing this to a larger scale with more impact would be possible. Until then, I’d just have to make do with four symbolic images of rheumatoid arthritis.