A diagnosis of a debilitating illness can be devastating.
You know when something isn’t right with your loved one. Either it’s a gut feeling or little clues that just don’t add up. My mom: intelligent, hospital vivacious; suddenly became uncharacteristically subdued. There were a few days that she would disappear for hours for medical appointments and then wouldn’t speak about them afterwards. I was maybe 11 or 12 at the time, but I knew something wasn’t right. This new quiet person just wasn’t my mom. My breaking point was the day she and my grandmother looked like deer caught in headlights discussing x-rays. I wanted answers. She wanted to protect me from the burden of her new reality.
My mother was formally diagnosed with Multiple Sclerosis, known as MS when I was 13. No family history. No warning. No time to come to grips with it. MS is an illness of many faces. It is an autoimmune disease that targets the brain and spinal cord. Mainly it affects the protein coverings to nerve cells that can diminish spinal and brain function such as vision problems, loss of fine and overall motor skill, as well as tingling in the extremities and moderate to severe body pain. No two people have the same symptoms and there is no known cure for MS. My mom shares her illness with names such as the late Richard Pryor, Montel Williams, Jack Osbourne (Ozzy Osbourne’s son) and singer Tamia Hill, who is also the wife of NBA player Grant Hill.
My mom’s condition rapidly declined right before my eyes. It seemed like she went from strutting in her heels to giving them all away and buying more flats. Then she started walking with a limp and having slight dizzy spells. Then she bought a few canes (because she needed options in her support). She’d have the cane in one hand and my steadying arm in the other. All in the space of a year.
I was 14.
Although I knew it wasn’t her fault, she didn’t set out to be sick, I resented her a bit. I was now 14, basically minding myself and my brother because physically, her body would not cooperate with her mind. I was filling out the important documents because her handwriting at the time was basically unreadable. I cooked, I cleaned. I had to step up and become the woman that the illness robbed her body of.
I was 14 and frustrated. I was young. I just wanted to be a normal teenaged girl and do all the things that came along with that. Instead I had to grow up quickly, had to be more mature than what was expected of others in my age range. I wholly resented being called a good kid by members of the family who saw me struggling but yet, still had unrealistic ideas as to what I should’ve been doing more of. I was 14 getting a crash course in life.
Nobody thinks about that. They see the service done for loved ones who are ill under the guise of “oh, well that’s your mother and you should have anyway.” The offers of help were few and far in between. Care of my mother and younger sibling boiled down to my grandmother and I shouldering the bulk of the responsibility. Nobody really thinks about the toll the illness takes on the caregivers. We give support emotionally, physically and mentally. Everyday. There is no vacation when you have a close relative that isn’t well. It’s heartbreaking to see your loved ones grow frustrated with the limitations their illnesses impose upon them.
The dynamic between my mother and I changed vastly. It didn’t feel like a parent/child relationship when I was the one covering majority of the tasks that she always attributed to being a woman and taking care of the house. Power struggles were frequent. Followed by overwhelming guilt, because I knew what my mother was when she was healthy. All my younger siblings will know of my mother is the very real effects of her illness that they see day to day.
MS is a daily struggle that has as many high points as it does low ones. My mom has basically lost 85% of the functionality in her legs, but some of her finer motor skills are coming back, such as writing. We’ve grown together in the 10 years she’s been diagnosed. We’ve cried, we’ve laughed. We’ve adapted. As long as there is no known cure for MS, it’s all we can do.
Written by Aubri Elle