What is joy? A three letter word that defines such a powerful emotion. For me, this feeling is now found in the simple, daily things in life. I am sure to many people this sounds a bit cheesy and typical; however, it is the truth and has not always been the case for me. I used to think that I had to have a magical moment or experience something out of the ordinary to feel joy.
Sure, I would enjoy spending time with friends and feel happiness when I had a good day, but I did not feel the true, heartwarming feeling of joy regularly. This is not at all anyone’s fault or due to negative surroundings but because I was not aware. I was not genuinely aware how precious life is and how it is the simple things that make the biggest impacts.
At the age of 18, I began to be aware of what joy truly means after I was diagnosed with Lupus along with accompanying auto-immune disorders. Lupus is a chronic, episodic, often invisible disease with no cure. According to the Lupus Foundation of America, “In Lupus, the body’s immune system is overactive [and confused]… It cannot determine healthy tissues from foreign invades and therefore attacks itself.” It manifests differently for everyone but the common thread is pain. The physical pain of your body attacking itself – the joints, the muscles, the skin, and the organs… The emotional pain of feeling alone and often misunderstood or even judged by people not understanding what you are experiencing. The mental pain of having to make decisions that are often no more than an educated guess guided by an insurance company. And for many, spiritual pain is also prevalent. For some, such a diagnosis will make one question their faith.
Personally, I have dealt with extensive pain. My joints are often swollen and painful to move. I have a history of kidney problems. My skin and body are extremely sensitive to sunlight and overexposure aggravates my symptoms. My hair falls out in clumps and fatigued does not even begin to express how tired and drained I feel. As for the emotional pain, I have felt almost all of the emotions. I was in (and sometimes still struggle with) denial.
I do not always understand or am not willing to accept the limitations Lupus causes or even what it is doing to my body. I have felt the loneliness of not having someone to truly understand what I am dealing with. Mentally, you do not expect to have to make such hard decisions that could mean life or death for you. I have tried several medications with no success. At the age of 19, I made the choice to begin a chemotherapy type of medication regiment. After three years, countless nights up being sick, and no results being seen, I made another decision to seek alternative medicine.
With all of this pain filling my daily life, I began to find joy in the simple things that most healthy humans often take for granted. Now, getting out of the bed on my own brings me joy. Being able to brush my hair and get dressed is a reason to have joy. Cooking for myself and anyone brave enough to try my food is joy. Every moment with friends and family fills my heart with joy. Even on days that have been less than pleasant, I still feel joy in my heart when I lay my head on my pillow at night.
Why? Why do these seemingly simple, routine tasks fill my heart with joy? Because it means I am here another day and am getting to experience one more day on Earth. I truly celebrate getting out of bed and preparing myself for the day without any assistance at the age of 23 because over the past five years, there have been more days than I can remember that this has not been the case. I have always been known as Miss Independent but Lupus has taught me how to ask for and receive help with a little more grace. On the days I get to be my natural independent self, I have immense joy! On those days, I feel like I am winning my battle with Lupus and that there is always a reason for a joyful heart. It is this daily, heartwarming joy that keeps me going.
– Storm Spencer
Storm Spencer is 23 years old. She was born and raised in Florence Alabama where she grew up a competitive swimmer and later a cadet in the Florence High School JROTC program. In 2010, she relocated to Memphis TN to study at Rhodes College and that is also when she entered the corporate world. Storm’s job lead her to transfer to Austin Texas and later back to Memphis. She recently returned to Florence Alabama to continue her education at the University of North Alabama. This last relocation also ended her career in the corporate fitness industry and has allowed her to start her own business of teaching Red Cross courses. However, there is more to Storm than just a traveling girl. She also fights a daily battle with Lupus and Rheumatoid Arthritis. Since Storm’s diagnosis (and really even before it), it has been a journey with many hills and valleys, but she is determined to fight till the end.