When I was diagnosed with lupus, my immediate reaction was, “What’s that?”
I joined the local support group to try to gain perspective from those who had already lived with this and who had experience dealing with it. One of the things I heard there was story after story of the crazy things various members had done while whacked out on high-dose steroids: one woman described how she cringed at the thought of going back to her doctor’s office where she had shown up at an early hour in her bathrobe and slippers, pounding on the man’s door, screaming, completely paranoid and out of it.
Her doctor had shown up to work, come onto this scene, and told her worriedly, I think we need to decrease your dose. (Uh, yeah.)
And then she had had to live with that etched into the minds of all the onlookers who did not know that she was not, of herself, in any way like that and with her own vivid memory that she had, nevertheless, on those drugs, done that.
And so I utterly refused to take steroids.
Ten years later, I now had Crohn’s too. I told my new gastroenterologist that I had always said I would never take prednisone unless it were a matter of life or death. (I didn’t say out loud the feeling, and maybe even then… What if I did something totally crazy from the med and then died of the disease anyway? What memories would I leave my family then?)
But he knew. Dr. R. held me steadily in his eyes and told me gently, “I think it’s time to give it a try.” And added, “I think you’ll be okay.”
In the moment he said that I felt that he was right. He was.
And that is how after all that anxiety and all that time, I at long last came to learn that my mental health stayed stable on those drugs.
But also that, as it turned out, I was the one-in-a-million autoimmune patient for whom they utterly did not work.
I know what the depth of pain is in being handed an incurable medical diagnosis that takes away every plan you ever had for your life. (Give me sunlight! Give me the great outdoors!) But I was an adult, with enough experience to know I could adjust to the new situation and cope, and with four small children dependent on me to help keep me going.
And my brain was intact.
For me it was a choice and it was also pure good luck.
The homecoming prince. The good-looking guy. The nice kid. The big brother everybody looked up to and wanted to be around, who liked to laugh and who was so good with little kids. Suddenly trying not only to cope with a major new diagnosis and with finding out that his entire future as he’d pictured it no longer existed, but now having no functioning mind with which to learn and adjust. He was out of it. He simply did not and physically could not comprehend.
At church today, people were searching for ways to rally around the family. I, for whom writing is like breathing, offered this: write down memories of our Brian. The Eagle Scout. The ready helper. That beautiful smile. Remember out loud for his family the best of who he was and what he did. There would be so many stories; give them to his parents, his grandparents, his little brothers and sisters, his aunts and uncles and his cousins.
Tell the good.
Because that is who he truly was.