Plenty of Purpose

The first time I felt that life had no purpose was the summer I was twelve. It was terrifying. I was living in a lackluster apartment with my dad, in a complex behind a Payless, in the small, Northern Californian town of Ukiah, which in summer was a baked-dead wasteland. I was too old for camp, too young to work, and the few friends I had were gone for the summer or had moved away. Unlike previous summers, mostly spent living in Berkeley, I had nothing to do and no one to do it with.

While my dad was at work I ate cereal and watched a series of TV shows until about two in the afternoon, when there was nothing on but soap operas, which even I couldn’t tolerate. Then I would go swimming by myself in the complex’s little pool for a couple of hours. Then I would go back inside and watch TV again. I had no wherewithal to create or sustain my own projects for the span of a whole summer, and no one to help me, and life very quickly lost all flavor and meaning.

I know now that if I had raised hell, demanded that my dad send me to camp, or find me something to do, he likely would have done it, but it didn’t occur to me that that was an option. The next summer was exactly the same. It was dreadful. Now, at forty-six, I’ve have had some bad times in my life, but I have to say those two summers still rank among the worst. Having read something about the adolescent brain, and its intense need for stimulation and new experiences, I have a better understanding of why those summers were such torture, and why they left me forever with a certain fear of summer in general. Of course, it’s not really summer I learned to fear, but the feeling of purposelessness.

At some point later in my adolescence, afflicted off and on with the feeling of purposelessness, I noticed that if I was having a good time I never thought about purpose. If fun wasn’t available, school and work—if not always fulfilling—at least staved off that lurking feeling.

In our culture there is much ado about finding your purpose. Some formulas for this seem hopelessly self-serving, pursuing some “passion” that does nothing to contribute to the betterment of the community. Other formulas focus so heavily on selfless service (in the face of the world’s overwhelming suffering) that they seem like recipes for total burnout. In the camp of non-dual spirituality, of which I’m generally a fan, purpose (Ekhart Tolle-style) is often simply whatever you are doing in the moment. If you are peeling a carrot, at that moment the purpose of your life is to peel that carrot. I like this one in theory, but since I’m not enlightened I don’t get a ton of mileage out of it.

On the other hand, all these formulas have a side of the coin (a three-sided coin?) that seems essential. J.P. Sears, the redhead who makes those funny Ultra Spiritual videos, says that it’s his delusional opinion that perhaps the purpose of our lives is to fully embrace our own special weirdness, because that leads us to our authentic selves, and thus to living the lives we are meant to live. He says his favorite commandment is one that didn’t make it on the tablets: Amuse Thyself. I think this is also a really nice way to look at it, so let’s make that coin have four sides.

All of this musing leads me precisely nowhere. One thing I can say is that (at the time of this writing) tomorrow is Halloween. My child, Asa, who is twelve, and, as far as I can tell, has not yet encountered the feeling of purposelessness, has decided to be “Greek Mythology,” which is a costume composed of many elements. Yesterday, for about twenty minutes of the afternoon, the purpose of my life was to make a trident for the costume, using cardboard, masking tape, and a long stick. A few years before I learned to know the feeling of purposelessness, I learned a more essential life lesson: that you can make just about anything with enough cardboard and tape. This, at least, is wisdom I know I can impart to Asa. For now, I’ll just cling to that.

Difference in Early School Years

asa_bday_partyAs Asa got older (the first few grades of elementary school), more socially aware and more medically stable, dealing with the tracheostomy in some ways became more of a social concern and less of a medical one. She had something that looked different, and she sounded different too. Asa’s peers in class quickly got used to the “trach,” but there was always the first day or week to deal with and she still got a lot of stares in public places, and the occasional rude comment. Once a kid in Asa’s fourth grade class went around saying he had seen Asa’s vocal cords, and once, at a museum, a grown man said to Asa, “You sound like Stephen Hawking.”

On the other hand, we sometimes met other kids and families who were kind and curious, and became friends after striking up that first conversation. Once a kid on the playground said to Asa, “I love your marshmallow necklace!” And one friend of Asa’s, a couple of years younger, told his parents he wanted “a cool necklace like Asa’s.”

Sometimes the comments were confusing or frightening to Asa, such as when one of her kindergarten classmates told her that she would die if her trach tube came out. We changed the trach tube at home regularly and I asked Asa if she remembered when we took out the tube the week before. She did. “Did you die?” I asked. She smiled, and said “No.” We had a lot of conversations about all these comments, which gave Asa the context and clarity she needed to deal with it.

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Asa second from left

Asa wanted to know why she had this problem that other people didn’t have, and we had a lot of conversations on this theme too. To me, it was essential that we frame these talks in a certain way:

A) Problems are a part of life and everyone has them, even if they don’t show on the outside; and

B) We are extremely lucky and have so much to be grateful for.

Asa always wanted to know what kind of problems other people had and we talked about those things. On the gratitude front, we talked about all the things Asa could do, about everything we had and the people who loved us. I liked to mention that I was grateful for the trach tube itself, because it was a life-saver, and allowed Asa to have a healthy, active life. I hope that all this has served as early lessons in compassion and gratitude for Asa, and resilience too.

 

Spot 12: Five Months in the Neonatal ICU

Spot_12_Cover_90Jenny Jaeckel is author of Spot 12: Five Months in the Neonatal ICU, the graphic novel coming out this October about Asa’s infancy. Visit the Spot 12 website for more information or visit the publisher’s website: www.raincloudpress.com. You can preorder the book directly from the distributor here: IPG (in English or Spanish). 

Or go to your favorite online retailer to preorder. Spot 12 will also be on the shelf in select bookstores, or have it special ordered.

An Infant’s First Year Home From the NICU

Readers of my book Spot 12: Five Months in the Neonatal ICU have told me they want more. They want to hear what happened to Asa next, and how our family continued to grow, learn and survive. So this summer I’m putting together some posts to fill this request. Here is the first installment.

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Asa outside with Parents (from Spot 12)

Things got so much better once we were able to leave the hospital, but it wasn’t easy. We did our best to manage the chaos, discover how to live in the outside world with Asa and all she required, weather the crises that arose, and generally survive the stress that was through the roof on a daily basis. The business of feeding Asa and maintaining an open airway was non-stop, messy and often scary, but we could go on walks, to parks, and eventually friends’ houses and other places. For the first year and a half any kind of group activity was impossible, and even the library was barely doable. The suction machine was loud, the supplies were cumbersome, the looks from strangers were withering, and Asa’s puking was spectacular.

Let’s talk about the puking. The coughing and suctioning because of the trach triggered Asa’s gag reflex, and combined with her compromised esophagus she puked the full contents of her stomach several times a day. I was still pumping and we tube-fed her breast milk exclusively for her first year. We went home from the hospital with an elaborate tube feeding pump that we quickly abandoned in favor of using syringes to put milk in the tube. Since Asa had so much difficulty keeping anything down, we eventually were feeding her very small amounts every half hour. I often felt that it would save a tremendous amount of cleaning and laundry if I just dumped the milk I pumped straight into the washer. Once at a hospital visit Asa puked on my shirt and on my pants in such a way that it appeared that I had puked on myself and also wet my pants. We were in a public area and we had to wait for 20 minutes like that for Chris to pick us up. Another time we stopped into our neighborhood Ethiopian restaurant for takeout and Asa puked gallons all over their floor. Another time Chris took her to the grocery store and she puked gallons just as he was trying to pay and wrangle the groceries with a whole line of people behind him.Puking_Spot_12

Somehow though, Asa absorbed enough calories to grow and thrive. She was happy. She learned things. She had fun. Somehow we managed to keep her afloat and despite the craziness, she had a good life. We found lots of ways to be creative and find solutions to living within the limits. The fall and winter before her first birthday there were many days when the Vancouver rain was so heavy going out was unthinkable. We had a small one bedroom apartment, and I set up Asa for playtime in different spots –like spending 20 minutes in the bathroom with blocks– and with interludes of going out for interludes in the rain, so that she would feel like the day had variety.

One saving grace was that we got Asa an exer-saucer, having her upright was helpful with the puking, and since she couldn’t crawl yet allowed her to play with toys and turn around when she wanted. Another saving grace, of course, was friends. There was one particularly bad day when I had been up since 3:00 in the morning (I still slept very little). Asa’s G-tube came out accidentally and I had to get a neighbor to help me so I could get it back in. We got used to the G-tube coming out eventually, but that day it was a new situation and added a lot to the stress load. In addition, Asa was especially pukey that day. By late morning we had gone through the feed, puke, change clothes cycle about six times, and I had to turn my back on her so she wouldn’t see me crying. Just when I was at the end of my rope my friend Teresa came by with her infant son Griffin. Griffin was younger than Asa but already crawling, and as soon as Teresa took him out of the carrier and put him on the floor, he marched straight over to Asa. He actually crawled, rather than marched, but you have to imagine a march-style crawl. They were instant friends. I felt like having Teresa there saved my life that day. Two friendly faces, and something going on besides me being crushed by my desperate exhaustion, at that moment was everything I needed.

One time, a month or two after leaving the hospital, when Asa was six or seven months old, a friend of mine asked me if I had wanted to “throttle” Asa yet. This was a well intentioned comment, the kind that hopes to normalize the frustrations of parenting an infant, and I understood that, but all the same hearing that felt like a kick in the face. If you’ve seen your baby nearly die from asphyxiation, and watched her struggle to breathe the whole of her life, you just don’t imagine throttling her yourself. As freaked out as I ever got I never once got angry at Asa. It was so clear that none of this was her fault, and so clear that she had been through a lot of hell. Every time I recalled that comment, which unfortunately haunted me for months after–a testament to my state of mind–I felt that kick in the face all over again. However, the larger context was this: we were at home, we were not any longer in the hospital. This point of reference made the worst day a hundred times better than all the days in the NICU. And even more than that, Asa was growing, Asa was healthy, Asa was happy. This is what kept me going.

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