For the first time in twenty-seven years I had oxygen put back in my nose, half naked again in case of sudden resuscitation, back on my back on a hospital bed fighting for my life, with the same arm used for the cuff, same fingers and hand used for oxygen and other tests. I still have a scar on my foot from the IV as a tiny baby in the NICU. (I was a ZEBRA all along: knowing this entire time a lot more was going on with multiple rare conditions, yet wondering if I would ever know for sure). Before birth I was marked and chosen. Now I bear more scars over the years of countless battles, sleepless nights, and many times spent again in the hospital or through endless scans. I wonder: did I cry in the NICU, like I did in the hospital? At times I was too weak or numb, literally barely there. The irony is that I slept as much as I could in the NICU: just like now, the bright lights and stimulation bothered me. The same cords and monitors that they hooked up almost made a full circle with me being admitted to the ICU as an adult - yet I barely passed on that, staying in a seizure unit nearby instead with more hooked up to me for days than I had in my life, or at least since birth. I signed papers for MOLST (Medical Orders For Life Sustaining Treatment), hesitating on whether or not to agree to emergency resuscitation because of what I have gone through. I asked what the things were on the wall behind me, and the nurse said it was, "Oh, in case we need to suction your airways out and bring you back." I was in shock. I still am. Every day that passes brings moments of PTSD, grief, flashbacks, and still I fight for hope, for peace, for love. I try to rest when I can, even though it seems impossible. I try to manage the pain, but almost nothing helps. Almost every second is spent in excruciating to unbearable pain from the multiple conditions in my body that have worsened in the last year and the inability to tolerate any type of drug. I am so afraid for my future but do not want to be. Every moment is a risk, a victory, a challenge, a heartbreak, a flash of hope at rare times. I am not sure why or how but I still am here. I hope something in my future is worth it all.
- RKD
11-29-24