The rare disease community needs a place at the table, too
As summer comes to a close, with cooler air just around the corner, it’s a good time to reflect on the past three months and share my experiences. I also have an important announcement.
Together — Mark Harrington
A Boston native, Mark has spent 25 years on the faculty of the Dallas Independent School District. A believer that what Hanna Arendt termed “the life of the mind” is the richest gift we give the young, Mark continues to find inspiration and joy in teaching. Mark has been published in The Dallas Morning News, The Boston Globe, and various professional publications. His classes have been featured on KERA, the local public television station. Mark knows the MG journey is not solitary. Blessed with wonderful, loving family and friends, he hopes his writing will assist others as they navigate life with myasthenia gravis.
Featured Post
In life with MG, what we look for is what we will find
“What you aim at determines what you see.” — Psychologist and author Jordan B. Peterson For centuries, this deceptively simple truth has echoed through philosophy, faith, and medicine. For those of us living with…
Read more
How a red-nosed reindeer helped with my negative body image
I’ve struggled with body image issues since childhood. I don’t remember a time when I didn’t believe there was something wrong with my body. When I was diagnosed with myasthenia gravis (MG),…
Why I need a nap: What living with MG fatigue is really like
For the past three weeks, my struggles with fatigue have greatly affected my life. I think others who, like me, have been diagnosed with myasthenia gravis (MG), as well as those…
I was skeptical of keeping an MG journal, until I found the right one
Soon after I was diagnosed with myasthenia gravis (MG), my neurologist told me that keeping track of my symptoms could be an important factor in successfully treating it. She recommended…
Tenacity keeps me going amid the symptoms of myasthenia gravis
I was caught off guard recently when a friend asked me what one word describes my ability to cope with the ups and downs I’ve had since my 2020 myasthenia gravis (MG) diagnosis. I…
Navigating uncertainty in life with myasthenia gravis
Every year, I reflect on my diagnosis of myasthenia gravis (MG) on June 24, 2020. As I look back on the past year, I see that MG forced me to reconsider my understanding…
When living with a rare disease threatens your financial stability
June 25 marks four years since I was diagnosed with myasthenia gravis (MG). Looking back brings to mind the ancient Greek dramatist Aeschylus, who observed that “he who learns must…
The treatments for myasthenia gravis are nothing short of a miracle
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “I dabbled in…
Among the benefits of having a pet is unconditional love
Four years ago, I met up with a cousin who had recently moved to Texas. I hadn’t seen Margi since a Fourth of July celebration three years earlier. I’ve gotten to know her better…
Changing the darkness of medical trauma into gold
Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. This week I did a self-inventory, as I’d become concerned about a few things. I noticed…
Life taught me that nothing is guaranteed, so I live in the present
“Watch, therefore, for ye know neither the day nor the hour wherein the son of man cometh.” — Matthew 25:13 These words have been at the forefront of my thoughts in the past few…
Living with MG showed me ‘there are worse things’ than time alone
One of my catchphrases, stolen from my father, is “there are worse things than being alone.” I’ve always known these were borrowed words, but yesterday’s Rare Disease Day provided the impetus I needed…
