Welcome to the club.

My “Uncle” Mike was a big part of my life when I was a tween. When I was diagnosed, his wife, Rita, was the only person I knew of who had had multiple sclerosis. She was severely disabled by secondary progressive multiple sclerosis. She passed away due to complications of her disease before I met him. She needed help with almost every element of daily living. I had heard tales of how Mike made sure she ate first, she slept first, her needs were always his priority. He was completely devoted to her and her every need. When I was diagnosed, this was all I knew about multiple sclerosis. I couldn’t believe this was the same disease I had, I was 17.

For the first few weeks after I was diagnosed, my dad and I maintained a steady state of denial. Then all of a sudden, we would just be overcome with grief. I remember crossing paths with him in the dining room and he hugged me. We stood there sobbing, shoulders shaking, clinging to one another. For several minutes we cried together. Then he gave me an extra squeeze, we grabbed napkins to wipe our snotty and tear-soaked faces, and we continued on our paths. No words were spoken. To this day, that is the most healing hug I’ve ever gotten, but I know where to get another one.

My mom has a supernatural power that most physicians develop, they learn to compartmentalize and control their emotions. No matter how fierce the winds of anger blew or how water from tears of grief raged, she was the rock that was stronger than the storm. She instilled that strength in me – lovingly and tenderly and like a badass. This strength is at the core of my ability to see past a setback or a bad day with MS.

The best advice I received was ABSOLUTELY, under no circumstances should I Google MS right away. The Internet has zero reliability to provide helpful, moderate information. I quickly learned that setting the right mindset was paramount. I went to an MS Patient Awareness Day shortly after my diagnosis and it scared the hell out of me. I came away thinking that people with this disease became one dimensional: DISABLED. There were so many wheelchairs, canes, walkers, scooters, and sick people! It did not represent where my disease was at that point. I quickly learned to control my “mindspace” and am still incredibly cautious about what I allow in.