There have been many times since my diagnosis of relapsing-remitting MS in 2015 that I have felt shame for being different. I feel shame when someone calls out my gimp or when I have to admit to a coworker that I can’t assist them with something if I’m flaring.
I have been shamed by others; those who do not understand what it’s like to be chronically ill, and who extend minimal compassion or understanding.
I nurtured a persona and the belief that I was strong. I failed to show vulnerability and worked to very high standards and performed in the highest of pressure. I met professional goals and managed life fairly well. I was The Strong One… until I wasn’t.
About a year ago, I was diagnosed with multiple sclerosis. While I knew that something was wrong, I never imagined it could be anything as life altering as MS. In one conversation with a neurologist, I felt that my life was over. Oddly enough, people counted on me to do what I’ve always done. My loved ones waited patiently for me to activate my best skills to fight this challenge, as I have fought all other challenges. But I had nothing. No desire, no will, no interest in going to battle with multiple sclerosis. I was so sick, physically and mentally, I could not think rationally about MS. I felt alone and scared about my future...
Coming to terms with having a chronic, incurable illness like MS doesn’t happen immediately. It takes some time to reorient yourself to a different reality – to be able to accept that things have changed. Acceptance of a new normal, of peacefully coexisting with the new limits an illness has placed upon your life, is not instantaneous.
For me, the road to the uneasy peace I’ve tried to make with my course of relapsing-remitting MS has not traveled in a straight line. Despite all the reading and researching I’ve done, despite how much my awareness of the disease has been raised, I still have my blind spots. There are times when I am in denial about what living with MS means...
Is it possible to look presentable with MS?
Being young and having MS comes with a lot of challenges. One of which is the ability to be trendy/well-presented whilst battling weak limbs, pain or hands that don’t always work...
I pulled into one of the several, empty handicapped parking spaces after seeing that none of the unmarked spaces were available. This particular lot was, by my estimation, the best place to park on the university campus for me to preserve my dearth of energy.
I would be teaching two classes located on the opposite ends of the campus. I’d have a 10-minute break in between – a break that would not long enough for me to get from one building to the other in time. Once inside the second building, I would have to strip off layers of clothing due to the intense heat and humidity inside the room, which trigger my MS-related heat sensitivity. Following the three-plus hours of instruction, I would walk back across campus to my car and gird myself for a more than one-hour commute home in gridlock city traffic...
Muscle and body aches
Shooting head pains
Loss of taste and smell
These are some of the symptoms of COVID-19...
Wearing a mask has been a point of contention for many people.
But by wearing a mask, I feel I'm being compassionate to others, and by them wearing a mask, I feel they're being compassionate to me...
“Just when I thought I was out, they pull me back in!”
Anyone who has seen the classic Godfather trilogy remembers this iconic line from Michael Corleone in the final chapter of the saga. Unfortunately, this was the one good line in a pretty disappointing movie. Or, at least we can all agree that the third one wasn’t as good as the first two. Another thing we certainly can agree on is that 2020 feels like we are all in a bad movie. And, as a person living with multiple sclerosis in this bad movie, I can totally relate to Michael Corleone’s line...
I have a tattoo of a fiery, colorful phoenix on my back. In the flames at the bottom of the tattoo is the title of Dr. Maya Angelou’s poem, “Still I Rise,” written in Arabic.
That phoenix’s self-destruction only to rise out of its ashes is symbolic of my life...
Day and night, on good days and bad, it’s always there. Watching. Waiting.
I’m talking, of course, about my multiple sclerosis DMT injection...
Invisible illness comes with many ups and downs along the journey. When you’re first diagnosed and suddenly find yourself living in a hospital, it can come as a bit of a shock. You may have to have tests you’ve only ever seen on Grey’s Anatomy, or even start on a medication that involves something you’re not used to. For me it was my first injectable treatment—I just couldn’t get on with it. I remember having panic attack after panic attack.
When I was first diagnosed 6 years ago, I was petrified of needles. Blood tests, I found, were always really difficult for me. I’d be sitting in the waiting room, palms sweating, heart beating like crazy, I couldn't breathe. Constantly thinking to myself, “I can’t do this...”