I am a pianist and music instructor and I have been living with lupus for more than twenty years. During my career as a pianist I played with national and international artists but a stroke paralysed the limbs on my right side.
My struggle with Systemic Lupus Erythematosus (SLE), also known as lupus, began in 2001. Since then I have survived two strokes and continue to press on by the grace of God.
During a traumatic bone marrow test in 2003, I felt such unbearable pain my screaming filled the corridors of the hospital.
In 2008, doctors removed my spleen at All India Institute of Medical Sciences (A.I.I.M.S) in Delhi. It was when dengue fever was spreading quickly and causing havoc. The patient in the next room succumbed to the fever. His platelet count was 10,000 while mine was a mere 7000. By God’s grace, I survived.
Living with Lupus is Living With Vulnerability
In June 2012, lupus attacked my central nervous system. It caused an ischemic stroke—when a blood clot blocks the flow of blood and oxygen to the brain. I could not play or teach the piano for a year. But soon a bigger ordeal came my way. I met with a hemorrhagic stroke that left my right limb paralysed and persists to this day. This was the third time lupus attacked my brain and my limbs.
How can someone, anyone, persevere through the complications of living with lupus? Only by God’s grace.
Lupus is a condition that makes the immune system attack the body, seeing it as a vicious enemy. The only remedy is to calm the immune system by using steroids. But doctors have to keep a delicate balance so that the body can still protect itself from germs and diseases.
Lupus affects many different organs so it can come with varied symptoms, which can come and go and appear differently during the disease. When lupus is active, it is called a ‘flare.’
One of the symptoms of lupus is photosensitivity. My doctors always told me, “The sun is your worst enemy.” Imagine trying to live a “normal life” when going out into the sun is considered bad for your health.
Other symptoms of lupus I have experienced are extreme fatigue, headache, swollen limbs, unexplained fever, anaemia, oedema in feet, legs, hands, and/or around the eyes, pain in the chest on deep breathing, butterfly rashes, hair loss, abnormal blood clotting, mouth or nose ulcers, swollen glands, and fingers and toes turning white and/or blue when cold (also known as Raynaud’s phenomenon).
The cause of lupus remains unknown. It could be a genetic predisposition or an environmental trigger. It is not contagious and it mainly affects women. Most of the time, lupus is not fatal. But without the right diagnosis and knowledge of the disorder, it can lead to death. Living with lupus is living with vulnerability.
Living with Lupus is Living By Grace Alone
How can someone, anyone, persevere through the complications of living with lupus? Only by God’s grace. There is no other way to explain why I continue to be alive. It is certainly not my strength or superhuman resilience. In fact, it is quite the opposite.
I am weak, unsteady, feeble, and fragile. But I can only think of this one thing: I am preserved and sustained by God. Nothing else can keep me alive and I know it so well. I am alive by grace and for nothing else.
It is not because I am good but because he is good to me. Not because I deserve it but because he is love, he is mercy, and he is faithful.
I am weak, unsteady, feeble, and fragile. But I can only think of this one thing: I am preserved and sustained by God.
He has sent the right people to me—who prayed for me and with me, who encouraged me, who said the things I needed to hear when I needed to hear them. He provided doctors who gave the right medication and treatment.
My physiotherapist, Dr. Imlimanen Jamir, has not only given me the best physical help but also the right mental, emotional, spiritual, and soulful help. He once told me, “Do your part. Let the doctors do their part. And let God do his part.”
Every time lupus pushed me down, he pulls me up and gives me confidence that I can do it even when we have to start all over again.
I know that I do not know a lot of things. I do not know why lupus happens, why the stroke assails me, why my limbs do not listen to me, why my nerves do not obey my instructions. But one thing I know, God is good. He is always good.
Today, he has helped me write a humble book On God, Life and Death. . .and other things in between, he has given me a new life, and a new identity.
Even in living with lupus, I can confidently affirm the hope of the gospel in the words of the apostle Paul, “we know that for those who love God all things work together for good, for those who are called according to his purpose” (Rom. 8:28).
