LIVING WITH LUPUS | Mauricia Ambrose
Your struggles shouldn’t define you; they should motivate you.
What would you do if your kidneys failed three years after adopting a child as a single parent? It was 2015. I had been waging an all-out war against lupus for 26 years up to that point. I was constantly fighting back against my body’s determination to destroy itself. I knew lupus was attacking my kidneys. What I didn’t know was, a simple turn of events would upend my almost perfect existence.
Systemic Lupus Erythematosus or SLE is an autoimmune disease that has no cure. My immune system attacks my internal organs because it can’t tell the difference between my normal cells and foreign bodies. Lupus is also called the disease of a thousand faces because every person is affected differently, and we all represent the many faces of this disease. In most cases, doctors treat the symptoms and never the root cause. It can take years to diagnose the actual disease and by then the organ being attacked may be irreversibly damaged. I was lucky that my diagnosis came in 1989 when my kidneys were still functioning.
I was in my last year at university when I was diagnosed and by then I had spent years going from one doctor to another, trying to understand what was happening to my body. I was in constant pain. I was photosensitive and always fatigued. By that last year my hair was falling out in clumps and I was struggling to keep my head above water. I could have said, “this is too hard” and simply quit, but I persevered.
No one knew what I was going through because I looked perfectly normal, maybe a bit chubby because of my medications, but otherwise healthy. Lupus is one of the many invisible illnesses that, unless you mention it, no one would know and sometimes they would even doubt its existence. I come from a large Caribbean family where you learned to be independent at an early age. Because of that, it was difficult for me to ask for help. So, even after university when I had flare-ups and, because of inflammation, I could barely lift my legs to get dressed, I kept going on my own.
At one point I made a crucial mistake. I stopped taking my medication. I was convinced that God would heal me. Like the story of the man in the storm, I continued to say” God will save me”. I eventually lost the use of my limbs and was bed-ridden for 6 months. I could have given up but my nephrologist assured me that my paralysis was temporary so, I did everything I could to regain my strength.
I was slowly regaining the use of my legs when, one morning, while I was getting ready to take a shower, my legs collapsed beneath me. I fell to the floor with a loud thump and had to call out for help. I was living at home with my parents and my father came running into the bedroom. He picked me up and gently put me in bed, never saying a word, knowing how I must have felt. I was devasted and embarrassed as he lifted me up, half-naked and helpless. I realized at that moment, that it wasn’t going to be as easy as I thought. Challenges have never deterred me, but living with lupus has been the challenge of a lifetime. I eventually regained the use of my arms and legs but this wasn’t the final battle I had to fight.
When I moved to Canada in 2000, I hadn’t had a flare-up for some time and I lived like any normal person. However, life as a lupus survivor is never simple. I had multiple episodes of flare-ups and unexplainable illnesses, much of which I attribute to stress. Working as a black professional in corporate North America, how I experienced stress was very different from what you might expect. It came in the form of micro-aggressions and racial bias. This along with a heavy workload made living with lupus almost impossible to bare. There were times when I simply wanted to give up but I had made the difficult decision to leave my home and make a life for myself here in Canada and there was no turning back.
I got married in 2006 and we were happy, however, I couldn’t have children and we eventually got divorced. I always wanted to be a mother so in 2010 I decided to submit my application to the Children’s Aid Society (CAS) to adopt as a single mom. Almost exactly two years later I was blessed with a fifteen-month-old baby boy. We were blissfully happy. Nothing could destroy the cocoon of unconditional love that we were creating in those first few months together.
Unfortunately, during that time, my lupus started flaring up again. All indicators were deteriorating rapidly. My doctors wanted me to have a kidney biopsy but I resisted. I was afraid of anything invasive that could potentially take me away from my son. I pushed away the thought that what I was going through had anything to do with him – not when his presence in my life brought me so much joy.
Then one morning my doctor called in a panic. I needed a dialysis catheter immediately. He had just gotten my most recent test results and was trying to convince me that I needed to get to the O.R. right away. But I continued to resist. I didn’t have a will. I was a single mom with no one to take care of my son. What if I died on the operating table or couldn’t take care of my son anymore? I couldn’t do this now. I had to talk to my rheumatologist because I believed I just needed to increase my dose of immunosuppressant medication, prednisone. My rheumatologist had the same diagnosis. I had to go on dialysis immediately, so an O.R. date was set.
This is where my story takes an unusual turn. One morning while taking my medication, I noticed that the label said 1mg rather than 5mg. It turned out that I was taking the wrong dose of my medication for months. My doctor immediately increased my dose of prednisone and things went back to normal, except for the fact that my kidneys were now permanently damaged and I had to go on dialysis.
Life can change in the blink of an eye. I have learned how to live one day at a time, accepting the good and the bad as they come. I have learned how to listen to my body and love it with all its complexities. I am on dialysis now but I haven’t let my illness define who I am. It may have taken control of my body but I am in control of my life. I travel with my son every year and we make beautiful memories together. I will continue to find balance, so I can give my son the life he deserves.