Existence

This past week I have been at NIH in Bethesda, Maryland for my 3rd trip to participate in a clinical study of NF2. Each visit I fly out with Paul and have high-tech MRIs and see specialists for the smorgasbord of issues NF2 has gifted me with. I've swallowed barium mixed with pudding in front of a moving xray, had fluorescent dye injected into me as multi-colored lights were flashed into my dilated eyes, been timed as I used one hand to pick up quarters and place them in a cup, and been poked with many an IV by incompetent nurses who don't seem to know how to get the vein on the first try. After all of the tests on the last day I sit down to go over the results with the doctor in charge of the study. Dr. Asthagiri is friendly and empathetic, he makes looking at tumors in your brain feel like opening the mail, just another task in a busy day. I have been blessed in my NF2 journey. I may be Deaf, but I have so many NF2 friends my age who cannot walk, see, talk, eat, or even think clearly for all of the surgeries, tumors and medications they have been assaulted with over the years. The fact that I can run and do not suffer from facial paralysis labels me as "lucky" in the NF2 community, and I am grateful every day for that. However, on my biannual MRI results day I am not comparing myself to others, I am instead forced to look directly inside myself and see the army of tumors attempting to choke out my entire brain and spine.

Each visit I have only minimal growth, but that growth is measurable over time and as it stands now I have a 3cm tumor that looks ridiculously scary and intrusive embedded right in the top center of my brain. It has a tail winding back like a whisper the length of my entire head. The space between the 2 hemispheres of my brain looks disgusting, lumps of tumors clot together in trails, others stand alone in random places. MoFo has stopped growing and is stable, but has not shrunk, and is now surrounded by baby tumors all lunging toward my brain stem. After swallowing the image down I asked the Doctor to show me my spine MRIs. We went through each section, and it seems my spinal cord is barely dodging contact in too many places to count. After thoroughly reviewing the doctor told me that as of now I am stable.

STABLE!? (and here comes the rant, if you are having a nice day look elsewhere before I ruin it.) How the hell is having so many tumors I cannot count them stable? Is stable synonymous to "There is not a damn thing I can do, keep running until you lose every single bodily function one at a time, your dignity, as well as your ability to communicate and partake in life with everyone else, then die." or does it mean "Yup, you still have NF2 and there is still not a cure, and no matter how healthy you eat or how much you run this is something you cannot control so just go eat some chicken Mcnuggets and wash it down with some JB because you'll be dead before it matters anyway." OR does it mean "We see people way worse than you every day and so we are unable to validate your fears and concerns and instead want you to go home and pretend you will get to ever be normal, while everyone around you looks the other way and pretends the same thing while slowly distancing themselves from you so they don't have to cry when you inevitably die."

Now here comes the part where I end on a high note, but today I have nothing to give. I am just empty. I think it is particularly cruel to have watched my Grandma, Uncle, and Mom all go through this before it is happening to me. I know all too well what is about to happen over the next decade, and wish I didn't. I wish I could lie to everyone but I can't even lie to myself right now. I already feel apologetic for my rant, reminding myself that I am not the only one with problems, and I am blessed in my life. I have excellent medical care, am surrounded by a family who loves me, have a solid marriage with my best friend, children who make me proud, and friends who honestly care about me. Would I rather live to be a hundred but live those years lonely or in squalor? Isn't life about the quality and not the quantity? On most days I truly believe in my heart that the amount of time God decides to grant me is more than enough, but sometimes I am just not that magnanimous, some days I kiss my kids extra hard and think "I don't want to go." Why does everyone else get to live while I have to die? My parents, Paul, the kids, will all continue on, and I'll just be a picture on the wall. They'll only hang the ones of me now, bright and smiling. The ones of me in the end will be hidden, and eventually forgotten. Admittedly, we are all resigned to the same fate, it just seems my luck will run out sooner than most. I cling desperately to the hope for a cure, and strive to make a difference in each day I still exist.

What else can I do? What else should any of us do?