A Pain in the Neck

People talk about the holidays being rough for some people. This season was particularly difficult for me, even after years following losses and even with good things happening. This year I lost a lot, and I almost lost my life this year; for the first five months, I lost a semblance of a normal life at least. I gained things this year too, including some extra months of quality life thanks to the new PRRT treatment. 

I got myself back this year. I didn’t like who I had become. It feels good to be me again even if it’s just for a little while. I’m ending the year with the opportunity to help some other people, and that feels good. 

This holiday season was hard for me for a lot of reasons. It could be my last one. I got to spend it with my mom, and that was nice, though I was in the hospital for a day with a fever and exhaustion. They don’t know the cause, but they gave me some blood for my low hemoglobin. (Though getting blood for Christmas, a friend pointed out, is pretty goth.) My bone marrow is just beat up. 

I haven’t been feeling as well for the past few weeks. It seems like the magic of the PRRT is wearing off. My blood counts are too low to get treatment soon. My December treatment was pushed back to February. Feeling sick again puts me in a really dark place. I’m grateful to have had this extra time, but I don’t want it to end. I’m not eager to go back to diapers and IVs and feeling sick all the time. I’m greedy. I want more time. I got a scan on Friday and I’m talking to the doctor in a few days. I hope I can get a fourth PRRT treatment. 

Since improving after the PRRT and since the breakup, I’ve been trying to suck the marrow out of life, as someone said. I declared a summer of Josie. I traveled. I saw lots of friends. I saw people I hadn’t seen in years. I had an amazing birthday/Halloween/pirate party. I have tentative plans to do more traveling and to see as many people as possible. I probably won’t be able to travel for very much longer, unless the doctors have more tricks up their sleeves. (I have tentative plans to travel and I’m not sure how I’ll feel until–if and when–I get another round of PRRT.) I’m doing a farewell tour of sorts as well and am trying to see people who live in other cities. 

This summer was also a summer of self-improvement. I tried to find peace on yoga mats, in meditation centers, at hypnotism, in church pews, in therapy, in books. I did find some degree of happiness. Earlier this year, I was resigned to die, but these past months have been so good. I have things to live for. I don’t want to go now. 

I try to live in the moment. Sometimes I have to think ahead and I can’t help but look behind. Sometimes I’m so fully immersed in the moment, it’s hard for me to reach out to make future plans or be reachable, and for that I’m sorry.

For so many years, in many yoga classes, I’ve heard about living in the moment. It’s all we have. We’re not promised anything beyond that. 

Looking to the past is too incredibly painful. I thought I had something and I didn’t. I have been looking back on earlier memories, distant and safe ones. 

The future is too terrifying. I am too afraid of what it holds. More illness. 

The moment is what I have. 

Someone asked why I take so many selfies. I take a lot of them and a lot of photos in general. I’m trying to hang on to the happy moments. I know you’re supposed to stay present and enjoy the moments, but I also have a habit of hanging onto the past and trying to grasp the happy times even though I can’t hold them. Photos are the best I can do, and it’s trying to capture the moments even as they escape. 

The holidays were bittersweet. It was hard because I lost people this year and felt abandoned in a way, but I had so many people around me this year. I have been surrounded by love and friendship, and that sounds trite, but I don’t know how else to put it. 

During the holidays, it’s hard to be in the moment. I think that’s where a lot of the holiday blues stem from. The future always demands attention: Parties, plans, presents. Past memories, both good and bad, are always there. Even happy memories can be painful if someone is no longer around or if you worry that this holiday won’t be as good.

On Christmas Day, I received a nice message from the past. My mom and I were making goulash, and meat I bought was bad and had turned gray. We tried to figure out what to do, and luckily an open store saved the day. My mom was looking through my recipes and found this message at the end of a handwritten recipe from my grandma: “Don’t be disappointed if it’s not a success—many cooks fail. Next time you’re home we can make it—so you can really be successful. It’s easy. Good luck. Love Grandma.” It was exactly the right message to find. I miss her. 

I actually started writing this post in October, when I returned from Bermuda, where I’d gone for my birthday. I went there when I was 11 or 12 and have been wanting to go back ever since. My last morning there, I watched the clear waves crash against rocks and pink sand and tried to stay in the moment while ignoring the feeling of sadness at my impending departure. I love New York and am rarely sad to come home, but Bermuda was hard to leave decades ago and it was hard to leave this time as well. (After that first trip, I moped and thought, “A week ago, I was in Bermuda,” “Two weeks ago, I was in Bermuda,” for quite some time.) I have always had trouble living in the moment, and still can (and do, despite my efforts) make myself pretty miserable with this line of thinking.

I have trouble describing Bermuda because it’s too beautiful. The pink crushed-coral sand, clear waves giving way to progressively deeper shades of blue before the ocean meets the blue of the sky are what paradise looks like. The hibiscus and flower scents and the smell of the ocean are what it would smell like. The ocean’s waves breaking along the nearby shore and the chorus of the tree frogs are what paradise would sound like. (I did see a mouse and it didn’t look like vermin, but like a character illustrated in a children’s book.) I did yoga on a covered rooftop section of the hotel one morning and I realized that this is the peaceful place you’re often told to envision in savasana. I didn’t need to envision it—I was there.

That morning, as I tried to absorb the beauty of the island, I knew I couldn’t. I’d done a lot of Instagramming during this trip and my recent trip to Europe. I want to remember everything. I want to take it with me, like the few grains of pink sand I grabbed or the remaining Malin + Goetz shampoo and conditioner in the small hotel bottles.

On its last day, I feel like I should acknowledge the weirdness of this year. It was strange for me personally but also weird in general. I feel like we’re in some simulation that’s gone awry or we’re a science fair project in the bedroom of an alien teen that he’s either forgotten about or we’re the jar that his little brother stole to mess with him. People thought that there was an alien invasion or an apocalypse last week when transformer in Queens caught fire, and that kind of made sense and people didn’t seem very surprised. I was convinced it was fireworks, and I would be terrible in an apocalypse. (Someone told me that in situations like this, one third of people react appropriately, one-third freeze in panic, and one-third doesn’t react properly and fails to panic. I’m in the last oblivious group.)

New Year’s has never been my favorite holiday. It demands reflection on the past and resolutions in the future and a lot of pressure to be spectacular. I had a series of bad New Year’s that reached its nadir the year I was stood up by some guy and then, then I ended up in a bathroom with a bleeding woman who had been attacked by her boyfriend. They have been better since. I’ve been sick or on chemo for several recent ones. 

I don’t even know where I was going with this post really. I haven’t posted in awhile; when I feel well I’m out doing things. I have so many half-started posts. 

I should say thank you to my friends for an amazing year and for so much support. I don’t know what I would do without you. You have helped me so much. 

When I posted about being in the hospital last Sunday someone posted a very thoughtful response, and one line that I’ll share (I hope he doesn’t mind) is: “I want to give you courage, and blanket you in peace.” It felt nice to have that virtual blanket of peace, and it helped me immensely that day. 

For your new year, I wish you peace and happiness. I wish you lots of happy moments.