When I’m doing well, I have a hard time communicating with others in the Behcet’s community. Not because I am not empathetic to their struggles or want to help them navigate this journey any less, but because when I am doing well, I want to live my life with a semblance of how it used to be, before Behcet’s happened to me. It’s a selfish motive, and I am not a selfish person. I spend all day, every day giving back to my community and my family. But, in this one sense, I am selfish.
To better help others understand why I am so protective of my “remission” time (in quotations because I never really know what Behcet’s is doing internally, I can only go by the outward symptoms), I would like to tell the story of the worst of times, the absolute lowest part of this journey to date.
On Easter Sunday 2010, I was taken into a room for a routine procedure. The day before, I was lying in a bed in the ER with a police escort, because the man in the bed next to me had just killed two people. Both victims had been taken to the same hospital, and said hospital was concerned that the victim’s families may find out what room the murderer was in and seek revenge. And, since I was in the first bed in the room, I was given a police escort throughout the day. Of course, I knew none of this, only that my dad seemed even more worried than he usually was in the ER with me. He frequently left the room to speak to the officer, and I was too sick to be worried about the fact that there was an armed officer outside of my door who also went with me for my tests.
That evening, I was mercifully admitted and transferred to a different unit after being told that I had yet another set of blood clots in the arteries in my right leg. I had surgery about six weeks prior for the same thing, and still had those incisions and an open fasciotomy to care for. The doctors decided that the best course of treatment would be to perform a minimally invasive procedure through my femoral artery and dissolve the clots with a scope. It would mean a small incision in my groin, but no major surgery. Since it was late on Saturday, they procedure was scheduled for the next morning. And, since it was fairly routine, my doctors were allowing another doctor to perform the procedure.
Easter morning, I was rolled down to the procedure room. Unlike other times, I was the only patient, so I passed my time cutting up with the technicians who were preparing me and the supplies. The doctor finally arrived, and I was allowed to remain awake so that I could talk to him throughout the procedure. I remember the initial incision and placement of the scope going as planned, but a few minutes later, I remember feeling intense pain and pressure in my foot and calf. I began crying and told him that something was wrong. My blood pressure skyrocketed, and I was given more drugs. I began screaming as the pain became too intense to bear, and the doctor sternly told me to be quiet. I told him over and over that I knew this pain, and that the clots were blocking bloodflow to my foot. He continued with his procedure, and I continued screaming. He asked the anesthesiologist to give me more medications to relax me, and the anesthesiologist said that he had maxed out all of the medications. I screamed for what seemed liked hours while the doctor worked, until my mom came running into the room. She was obviously not prepped for surgery, and the nurses attempted to remove her. She removed the sheet off of my foot, and then doctors then saw that it was white and without bloodflow. They immediately closed the incision and paged my doctor to come in. I was sent into pre-op, still screaming and begging the anesthesiologist to put me to sleep so that I could not feel the pain. There were papers to sign, and within half an hour, I saw the familiar faces of my surgery team waiting for me in an OR room.
I woke up hours later, and was told not to move. I had a catheter going into each femoral artery delivering medication, and moving would displace them and cause me to bleed out. I was in an ICU room, and I could only have one visitor at a time. That visitor had to scrub in and wear protective clothing, since my incisions were open. I was not allowed to eat or drink, since I could have to go back into surgery at any moment if the worst happened. A nurse allowed my mother to give me three spoonfuls of ice chips after I had been lying there for 24 hours. The pain in my legs was intense, since I still had inches of incision from my previous surgery and an open fascitomy that needed bandage changes regularly. The pain in my back and hips was intense, as I was lying in an awkward position at an awkward angle. I laid like this for almost 48 hours before being taken back into surgery to have the catheters removed.
About a year after this happened, I went back and read emails that I sent and received from friends and family during this time. Only then did I realize the gravity of the situation that I had been in, both mentally and physically. Thankfully, I had a wonderful vascular surgery team who (again) ensured that I regained my health with no lasting damage.
Those two days that I spent lying on my back in an ICU unit were the worst days of my life. So, when I am given merciful breaks from the symptoms of Behcet’s, I choose to spend my time away from the Facebook support groups, blogs, and emails that revolve around the disease and reclaim some of my life. I am enormously thankful for days when I am feeling good and only have scars and medications to remind me of where I have been; I don’t know how I would handle living with Behcet’s if I was not given such merciful vacations from the reality of this disease.
So, as tomorrow is Behcet’s Awareness Day, I want to thank my support group for being there, and I want to honor those who will not be feeling up to celebrating much tomorrow. For those who are, let’s spend the day giving back to those who are not feeling well. Send an email, send flowers, plant a tree in someone’s honor. We all know how much those small gestures mean, and we never know when the tides may change and we are once again on the receiving end of well-wishes and prayers.