“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosi
People talk about cancer and Alzheimer’s, Covid19 and the flu. These illnesses are all too common in our society. What people don’t talk about is when your brother takes a prescription prescribed by a doctor and is never the same again. That sounds dramatic, so I want to reassure you that my brother is alive and well today, but what happened to him IS dramatic and traumatic. At the age of twenty-seven, he found his Mount Everest.
Flashback to April 2010. My brother, Matthew, who is seventeen months younger than me, lived in Cincinnati in an up-and-coming area of the city and walked a couple of miles to work each day. He played intramural sports and had recently passed his CPA exam. He was a healthy twenty-seven-year-old living his “best life” as we would say now.
One Sunday afternoon, my phone rang, and my mom, on the other end, said, “Emily, we’re on our way to Cincinnati. Matthew’s not feeling well. His body hurts all over, and he can’t drive. We’re going to pick him up and bring him back to Indy.”
I wasn’t completely alarmed yet. I didn’t know the details, but I figured things would work out. My brother was young and healthy.
I was wrong.
When my parents arrived in Cincinnati, Matthew could hardly walk. He had started to feel ill after beginning a seven-day dose of a drug for a suspected urological infection. He stopped taking it on day five, realizing that his health was quickly deteriorating when he had no energy and constant pain throughout his body.
My parents did what anyone would do with a seriously sick child on a Sunday: they took him to the emergency room. They ran imaging on his chest and extensive bloodwork. I wish I could say they found a cause–something–ANYTHING–that could lead the doctors in the right direction to help my brother. No, they found nothing. This was the beginning of his Mount Everest.
Matthew was too weak and in too much pain to return to Cincinnati. He stayed with my mom and stepdad as he tried to figure out why he could barely walk after taking five days of a prescription drug. He foreclosed on his condo because he could no longer work. He applied for–and was denied–long-term disability because he could no longer work. He had to rebuild his stamina just to walk. He would walk around my parent’s cul-de-sac for his “exercise.” I remember peering out the window and watching him move as slowly as an old man in the snow who was too afraid of falling to move any faster.
Six years after a doctor prescribed that medicine for my brother, the Food and Drug Administration labeled it a “black box” drug due to its severe side effects that outweigh (in some cases) the benefits. Neuropathy and tendonitis are a couple of the most common, serious, long-term side effects. We now know what happened to my brother: the drug caused significant nerve damage throughout his entire body.
My best friend’s brother unexpectedly passed away that same year my brother became debilitated. I often wondered in those following months if our griefs ever traveled the same road. True, my brother was still alive and functioning, but parts of him were gone. And I grieved the parts that were missing. My brother was no longer a runner. He could not take the stairs. Walking on the grass became a thing of the past. Gone were the days when my brother could go anywhere without thinking about the walking (will there be a ramp?) or the seating (will there be armrests?). Gone were the days when he could go over to a friend or family member’s house and not be bothered by carpet on the floor or a stoop at the entryway of a house. Could he physically do all of these things? Yes, but due to the nerve damage, he would be in pain for days or even weeks afterward, so he had to avoid them.
No one ever talks about being prescribed a drug by a doctor and becoming the .001% statistic with debilitating side effects. No one can fully understand (myself included) how my brother became an original “long hauler” over a decade ago and had to make drastic lifestyle changes that would be uncommon for a man in his thirties–let alone one in his twenties. I can only say from the perspective of a big sister that it was painful and inspiring to see my brother scale his mountain. To watch him find a diet that would help keep his symptoms in check but still not allow him to do his laundry without significant pain. To see him relentlessly search online and in-person for experts who could help him but know that there is no undoing the damage to his body. Matthew’s Mount Everest has been fierce, but the last eleven years have taught me, so is he.