I’m on my way to DC today. This is the trip that I have normally approached with, at best, resignation, and at worst, dread. It’s always difficult to describe the NIH experience to others. I’ll do my best here. It starts with a cross-country flight. I like flying into Reagan International Airport because I can get on the metro right from the airport and take it all the way to the NIH campus. I arrive at the NIH campus and go through security. The first time I came to NIH, I had a Wyoming driver’s license. I presented my ID to the security guard and he asked, “Is this a US driver’s license?!?”
I think I laughed out loud. “Yes! You haven’t heard of Wyoming?!?” He wasn’t sure. “Have you heard of Yellowstone? That’s in Wyoming!”
Once I’m through security, I make the long walk up the hill and around to the hospital side of the campus. The campus is lovely, dotted with brick buildings of various ages, large deciduous trees, grassy gullies and hills. It’s a steep walk but it’s quiet and peaceful and I prefer it to the shuttle ride. I pass the hospital on my left. This is a grand structure with a large covered passenger-drop outlined in blue neon lighting floating over terraced retaining walls.
I remember sitting on one of those walls during the first week I spent at NIH. I had just been given the prognosis of five years to live. I wandered out of the hospital on a warm July night to escape the air conditioning and light and noise. I looked out into the inky black sky, feeling at once insignificant and enormously heavy. It’s hard not to remember that moment walking by that retaining wall.
I continue on the steady hill climb and arrive at the Safra Family Lodge. It’s a combination of a cottage and a hotel. The outside is covered in beautiful lines of rough stone. Inside, it has the feeling of a rich grandmother’s home with a baby grand piano that no one plays and a large dining room table with substantial chairs where no one eats. The heart of this home, like so many, is in the kitchen.
Most people staying at the Family Lodge are sick in some way, so people tend to stay in their rooms. It is usually blanketed in the somber quiet of a cemetery. There is a reverence for the work that people are undergoing. Attempting to heal oneself is attempting the work of God. But most people need to eat. (I say most people because I end up fasting half the days I’m there because of tests I’m undergoing). So in the kitchen you find life.
The kitchen is centered around a large island with a cooktop. On one end there is a range and on the other, a bank of commercially-sized refrigerators. There are about a dozen small tables with padded chairs and off to the side, a nook with a couch and TV. It’s unusual to find the kitchen completely vacant. Usually one or two people are sitting at one of the tables eating in silence or chatting in a low voice, keeping with the reverence of the cemetery. It’s hard to break the ice in this setting. I think everyone (correctly) assumes that everyone else is suffering in some way and it’s intimidating to approach that.
I always feel very guarded when I arrive at the Family Lodge. I don’t belong here. By all accounts I don’t feel or look or live like someone who has cancer or some other rare chronic disease honored by study in this palace of medical experimentation. When I come here it feels like I am forced to practice being sick. I’m forced back into the psychology of illness. Talking to fellow patients has never done much for me, except to remind me of the terrible reality that I have somehow avoided for 13 years. And to me it doesn’t feel like I’ve been lucky or blessed. It feels more like, by staying in motion, by never stopping to rest, I have managed to evade the cold hand of fate. When I hear the stories of my fellow patients it reminds me that the hand is ever reaching.
In the kitchen I met a woman in her 50s who has the same condition as me. She was diagnosed less than five years ago and is on the pathway to the original prognosis I was warned of. Her body is becoming riddled with tumors too numerous to remove. I wonder what it would be like to be facing that—to be seeing the beginning of the end. I guess I know to some extent. When I was 21, I faced what I thought was the beginning of the end. It felt like resignation. In some ways I think it might have been easier then because I had experienced little enough of life at that point to grasp what I would have missed out on. I was also more compliant at that age. I was ready to be and do what life asked of me, even if that meant death. Now that I understand that I have some say in it, I want to have my say.
In the kitchen I met a man about my age who had been at the Family Lodge already for two months. He had traveled from Canada to receive a transplant and would not return home for another month. “Hopefully in time for Christmas,” he told me. He was thin with no hair and a gaunt face, but he retained the sparkle in his eyes and a quick mind. I could not imagine living in the cemetery for three months. It seemed unbearable. He was not allowed to leave the campus because of his compromised immune system. He had groceries delivered and was required to follow a diet of simple, wholesome foods like fish, chicken and vegetables. I remember his despair one day when they delivered chicken with the skin on. He was not supposed to eat it with the skin so he spent his depleted energy removing skin from each piece of raw chicken. What I can’t entirely communicate here is the intense drain on a highly skilled and intellectual person, to have chicken skin be the most difficult problem to solve in a day or even a week or a month. The lack of stimulation is infuriating. It’s a juxtaposition of boredom and oppressive existential drama that you can’t quite tackle because you are literally in the middle of it. I think he and I sensed that we both understood this. I meant to keep in touch with him, but like someone with whom you’ve shared trauma, sometimes it’s easier to let go than hold on.
In the kitchen I met a delightful couple from the South. They were a presence in the Lodge. He was the patient and she was his nurse, cook and entertainment. She rolled into the kitchen with totes of food and dishes. She spent the days cooking her southern specialties that neither of them could eat because she was diabetic and he could no longer tolerate rich foods. She cooked for the residents of the Lodge and her food was delicious, but her greatest offering was her incessant, lilting, Southern chatter. I wandered into the kitchen late in the evening to find the Southern couple in animated conversation with whomever happened to be there. They always pulled me in to compare war stories of the day’s medical testing, to talk about home or the weather or whatever. They brought light into the kitchen and life into the cemetery.
I haven’t yet been able to come to NIH without my armor on. I have always come with resignation. Let’s just get through this and get it over with. And it always sucks. Today, as I am traveling, I am curious. What could make this time restorative? What could make it meaningful? In Daring Greatly, Brené Brown writes:
“Much of the beauty of light owes its existence to the dark. The most powerful moments of our lives happen when we string together the small flickers of light created by courage, compassion, and connection and see them shine in the darkness of our struggles.”
This week, as I face the dark, I will make my best attempt to string together courage, compassion and connection. May you find the light in your darkness too. Namaste. Here I go!
I’m also in the pheo protocol at NIH. I know how it is to feel out of place there. When I was there in September, I went on a run the day before my pheo surgery. I am not the typical pheo patient. Everyone around me seems to be in much rougher condition.
It kind of feels like another reality. Back at home people treat me like I’m a sick person. At NIH I feel healthy and vibrant by comparison. I spend my free time walking around downtown Bethesda. Riding the metro, sight seeing in DC.
When I first started going to NIH I was afraid to talk to anyone or leave the campus. The past visit though, I made it a point to talk to everyone I could. I am so amazed by the people I meet there. Their spirit and perseverance makes feel lucky to have met them.
Anyway, I enjoyed your article! I’ll have to follow your blog!
Thank you for reading! I’m going to give your blog a look. Isn’t it interesting how we take on different roles! I’ve finally found enough consciousness to observe it. Best wishes to you on your health and life journey!
I am interested to know more about what led to your diagnosis. I am having symptoms that I am looking into. I will be seeing a Nephrologist soon.
I had an unrelated septoplasty and my blood pressure skyrocketed during surgery so I was referred back to my Pcp for work up. I was only 21 at the time so not many things that cause HTN at that age. They found an initial tumor behind my pancreas, then more. Best of luck to you ❤️