When I said I wanted to be like my father, having an autoimmune disease is not what I meant.
I saw my rheumatologist last week, who again offered me Prednisone to control my pain. Again, I refused. “My Dad, I said, I can’t, I won’t… I saw what it did to him.”
She understood. But then she said, “You just got a different autoimmune disease, you know.” And I do know. I’m sick because he was sick. I looked her in the eye and said that this is my every worst nightmare come true. I meant it.
Oh, it’s not my nightmare because I’m in pain, or I’m scared of the side effects of the medication, although I am. Tonight I have to take my first dose of methotrexate, chemo!, and I’m absolutely terrified. But that’s not why this is my nightmare. It’s because, if my dad passed this to me, then I could pass it to my kids. My children. My life. My reason for surviving thus far. Or, alternately, I could cause them agony by watching me suffer. Hospital stays. Pain. Slowly watching my joints deform. I know how horrible it is to watch a parent suffer and die. I lived it for three years, and now, 19 years later it still affects me.
This is the legacy I could leave my children and it scares me to my very soul. My worst nightmare. Absolute worst.
There have been times when I cried over the DNA I gave to my older two children. Mental illness surrounds them on every side, because of who I chose as their biological father. I regret giving them that double whammy. But, I can be proactive about that. I can send them to therapy, teach them to cope. I can warn them that addiction runs deep in their blood, as well as depression, and I can teach them to watch for the signs. I can combat the mental health issues, and I already am. But this. This curse of autoimmune disease. I can’t do anything but watch and wait. I hear my son’s voice in my head asking why bad things happen to him. He was born without a heartbeat, had seizures, and just seems to get injured more than his siblings. He’s 6 years old and he realizes this. But he wonders why, and the thought of passing this disease to him rips my heart to shreds.
I’ll survive this disease, just like I have everything else in my life to this point. I’ll hide the pain the best I can. I’ll manage to cope with the medications and their side effects. I’ll swallow my fear with each dose of meds. With each experiment to see what helps and what harms. But I don’t know that I’ll ever conquer the fear of my children experiencing this. Or them losing me too soon. That’s what I meant when I told my doctor that this is my worst nightmare. She’s a mother, she understands.