MOVED

 Hi all, my blog is now at https://www.watchingsarahrise.com/category/sarah-rise-weekly-updates/

September 1: A Big Party and A Big Change

My cluster headache story arc is always, always, always the same, and yet every time I think things will be different. This thought and hope are true, because I do always try new things and they always do work some of the time. Yet, despite the nuances, the basic shape of my experience repeats every time. The cluster starts in a mild-enough way where I wake almost every night once or twice with a headache that I can get to go away in 15-60 minutes and then sleep more. When I wake again it is either the morning and I’m good to go, or it is an hour or so later and I have another headache. Sometimes in the morning I have lingering traces that stay with me for most of the day but don’t impede my functioning. I do some combination of yoga, breathing, relaxing, moving, crying, hanging my head down or lying face down on the rug, gentle exercising, imagining I’m a polar bear, ice, heat, and maybe Imitrex nasal spray (but I’m only given 6 per month because insurance people clearly never have had cluster headaches). I accept and embrace the experience and that helps too. And then… it starts going on a little too long and gets more intense. My reserves are ever lower because my sleep varies between 2-6 hours of sleep per night, usually punctuated by pain that feels sort of like gentle or not so gentle lightning going through the right side of my head. I start feeling more desperate. I start fearing bedtime because instead of a respite it is when I go into battle. I communicate with my doctor and we have new plans for things to try (although I always want to avoid Emgality because of my intense fear about those giant needles). In this cluster, I have reached that tipping point from “this is totally manageable” to “I really can’t keep this up much longer and I’m scared to sleep.” Yesterday I started a new (to me) steroid. Although I woke frequently I didn’t have a headache. I could feel the rumblings, but I could tell they were being tamped down by the steroid. I am hopeful that this will break the cluster. If not, I still have more things to try before Emgality. Fingers crossed. 

Sarah had her first day of school on Tuesday and was so excited that she woke at 4am instead of sleeping in until 5:30 like she could have. She was outside and ready to go before her bus driver arrived, so she grabbed a broom from our porch and galloped back and forth on her broom horse to pass the time. After a giant hug with her driver when he arrived, off they went. We could see her smile radiating through the passenger window. Since the week was very hot, with highs in the 90s, Sarah’s school adjusted the dress code, but only for the boys. I asked for wiggle room because Sarah isn’t really a skort-wearer, and was denied. The normal dress code is that everyone can wear khaki pants, but girls have the option to wear a skort. This seems unfair to the boys because they have no way to have bare legs on a hot day. The adjustment for the heat allowed boys to wear shorts, but girls still only had the option of a skort. This irks me greatly because it feels like a sexist holdover from the 1950s, and yet I keep reminding myself that this is not the hill I want to die on. This is not the moment to get riled up and fight a battle with people who are otherwise providing a wonderful school experience for Sarah. Sarah even surprised me and agreed to wear a skort on Thursday and Friday. The requisite knee socks mean it’s not a huge difference from pants, but every little bit helps. 

Amy is more in the flow of things with her school and has started getting homework, which she does diligently. This means I have to be more flexible about asking her to do her Schroth exercises for scoliosis because some days there just isn’t time. 

In other school news, I have given my notice at the massage school. I have been teaching there in varying ways and amounts since 2017, teaching the Alexander Technique consistently, a little bit of myofascial massage, and lots of neuromuscular therapy (trigger points). During the Pandemic I became the chair of the neuromuscular department. It has been a truly wonderful experience and I loved so much of it for so long. But, somehow something shifted for me, as you probably could already tell by my closing my massage practice. It is disconcerting to have something that was a passionate love for half of my life just fall away from being my passion. I just keep reminding myself that many people have midlife re-assessments and re-imaginings of their journeys. I somehow expected to be exempt and used to imagine doing massage until I was 90, but now that’s just not what I want to do anymore. It has taken a long time to let myself act upon this clarity, and I thank my mom for listening to my hemming and hawing for hours, and for pointing out my patterns of resisting my knowing. She has a vantage point of 47 years, so I think she has a pretty good perspective on me and how I work. Anyway, I am glad to be making this shift, though there will certainly be things I will miss. But it is time.

In exciting news, I have started recording the audio version of Watching Sarah Rise, to be released at the same time as the print version becomes available in January. On Wednesday I recorded for close to 5 hours and we got 1/3 of the way through the book. I’m sure there will be many things I have to do over, but the overall experience has been enjoyable. When I decided to pursue this course of action, figuring I wanted to be the reader for my own memoir, I didn’t think about how that would mean speaking as young Sarah and young Amy on many occasions. It means reading as my volunteers or Carl or my past self, and shifting my voice slightly enough to show the difference, but mildly enough to not be weird or botch it. The big tripping moment was when I say something as someone with a British accent. For now I have opted to not even attempt it, because I know I can’t get it to sound just like him and I don’t want to tarnish his memory by trying. I altered my voice, but kept my pronunciation.

This weekend was the big extravaganza commitment celebration for Sonia (Carl’s sister) and her partner Jim. Friday night included a KIDS ONLY party at our house for Sarah, Amy, and their cousins. While Amy isn’t the oldest out of all of the cousins, nor even in our house, I did have her act as the Host (I told Sarah was a co-host) and Amy knew that she was in charge. She also knew to send us a message or call us the moment anything went awry and we could be back in ten minutes. I reminded Sarah to call us if she missed us and wanted us to come home. Sure enough, at 8:30, when Sarah’s body told her it was bedtime, she called me. Meanwhile, everyone else was full of energy and play. Amy said managing kids is so chaotic and she wondered how we do it. She felt that way about tidying up after dinner and fitting everything in the fridge too. She has decided not to have six kids of her own when she is older! 

Yesterday Sarah helped me go to a bakery to pick up a car-load of desserts for the Big Party. It was really nice having her company, and of course we had to get some extra items to sample, such as the tiny macarons. I think the baker thought I was a little odd when I asked for 4 sets of mama and baby macarons. But that is what they looked like to me! After lunch and a nap for Sarah, I took the girls for hair trims and to get Sarah’s hair professionally washed. She rarely lets me help wash her thick locks, and it is hard for her to get her hair fully clean, so I’m glad she allows the professionals to get through all of the layers. 

The Big Party was so much fun! It was meaningful, beautiful, relaxed, festive, and so clearly a full expression of Sonia and Jim. There was delicious food and everyone could eat everything, which was amazing because there were something like 12 different food allergies to work around. There was a face painter, an art station, a person making caricatures of pets (we got one of our cat that really embodies her vibe). There were hula hoops, bubbles, and sidewalk chalk. There was dancing and Sarah got her groove on for the B52s “Love Shack.” Amy did cartwheels in the yard because she is always prepared to do cartwheels, wearing shorts under even a fancy dress. Amy danced with her cousins, though I received the requisite eye-rolls and resistance when I invited her to dance with me. The only hitches in the evening were my fears about getting a cluster headache (though I had my one remaining nasal spray with me just in case and I didn’t need it!), and the moment when Sarah needed to use the bathroom - exactly when Sonia, Jim, Grandma, and Carl were about to begin the one song they were going to perform. They had been rehearsing for months! Sarah and I were almost done, but Sarah was taking a while washing her hands because the sinks were a bit different in terms of how to keep the water flowing. I made the grievous error of asking Sarah to hurry. She resisted. I got tense because the song had already started and I was missing Carl’s big moment! Sarah and I were about to blow our Anger tops, when. . .  magically. . . Anna appeared. Certainly I knew they were at the event, but it didn’t occur to me to ask for help because this wasn’t an official babysitting gig. Still, I am so grateful for Anna’s timing, allowing me to run back in time to see the last half of the performance. Sarah and Anna got to see the last little bit too. At 9:30 Sarah was ready to go so I took the girls home and we all went to bed by 10:30, which was late for Sarah and normal for Amy. Carl stayed out very late helping clean up at the end. It is always nice to have the flexibility to share who does what. He is still sleeping, which is perfect because Sarah is already ready for a nap! When you wake at 5, doze until 6:45, have breakfast and watch Blippi, you might be ready for a nap by 8am! If you are Sarah. So Carl is already doing a job for the day by resting with her since she prefers company for her naps. While I’m certain my body could use the sleep, I’m hesitant to change my usual waking and bedtime hours because sleep regularity is helpful for managing cluster headaches. 

My daily intentions lately are to read, walk, and meditate for at least some tiny part of each day. So far I usually get to two out of the three. But I do feel a difference in my being when I attend to these things that help me align with myself.

May you celebrate big and little things in a way that feels like you, may you sleep peacefully, and may you have your own version of Anna magically swoop in at the perfect moment.