Health

Married to Depression

I started writing this post six months ago. I started again four months ago. This week I opened it up again. It has been very difficult to get the words right, but then I realized that getting them right is impossible. There is no way that I can convey everyone, regardless of their experiences, what it is like to be married to someone who struggles with depression. The audience is too diverse and the experience is as well. My thoughts and feelings on this matter maybe similar to that of another spouse, or they might be quite different. It is impossible for me to get it right, because there is no “right” when discussing a subjective experience. I can only write about my experiences and hope that something in the story is useful to other people. When I look at it that way, the only way to get it wrong is to not write the post. So I wrote it. All 3000+ words of it. The first part is personal history for context. The rest is things I think will help other people in a similar situation. I put those things in bold for those who want to skim. At the very bottom are links to resources for those who need them.

Howard and I have been married for twenty years. It was not all bliss. Parts of it were gut-wrenchingly hard. In hindsight, many of those horribly difficult parts were directly related to Howard’s struggles with anxiety and depression. Other difficult parts were directly related to my personal stash of neuroses and emotional baggage. Yet our marriage is good. Our life together is more than good. We have built a partnership through the years that sustains us, a business, and our four children. Part of the reason our marriage is still good twenty years in, is because we pulled together when things got hard instead of pulling apart. That required conscious decision from both of us and bucketfuls of forgiveness that we splashed all over everything.

Howard is a bright spot in my life. He makes me laugh. He makes my days better, which is why it hurts so much when this amazing person vanishes into himself and radiates despair or anger. Suddenly instead of having a life partner who is carrying half the load, or even saving me because I’m stumbling, I have a person who is faltering and struggling to carry only a fraction of what he usually does. Not only that, but he radiates the bleakness and it permeates the house, actually creating additional stress and strain. These days we have good strategies for minimizing the impact of a depressive episode. That was not always the case.

The first time I really got to see inside Howard’s pit of despair was on our honeymoon. I was twenty, still trying to figure out who I was as an adult. Still trying to choose which life patterns I wanted to emulate from my family of birth and how I wanted to do things differently. I’d been around depression before with one of my siblings, but my family did not name it. It was the elephant in the room around which we all danced, trying to create a peaceful life. I carried that approach into my marriage. I knew Howard had mood swings. I’d witnessed some during the course of our engagement. But there we were, about halfway through our honeymoon, laying in the dark together while Howard cried and talked. He was letting me further into his heart than he’d ever let anyone before and it was terrifying for both of us. I stared into this deep, dark, seemingly bottomless pit and knew it could swallow me whole if I was not careful. It could swallow us both. And I did not want that to happen.

The next morning the bleakness had passed and my wonderful Howard was back, but I did not forget that the pit was a possibility.

Our family, the new one that Howard and I made together, danced with the elephant for decades. We built habits in the hopes of increasing the good times and reducing the bad ones. We looked for cyclical patterns. We evaluated. Early on I might have suggested therapy of some kind, but Howard had done therapy following the death of his parents and he reported it hadn’t done much for him. We were smart people, surely we could figure out the right diet, or exercise program, or spiritual regimen. All of these things were good management tools and we used them. Sometimes they helped. Other times they were powerless. We were powerless.

It was not until eighteen months ago that we named the elephant. That was when we finally saw this thing that had always been in the middle of our lives and said it was
A. real
B. a problem
C. something we should address.
That shift came because of many things, the most obvious being when our friend Robison Wells began speaking publicly about the mental illnesses that plague him. Rob and a couple of other friends showed Howard that admitting a problem could be a step toward better answers. There was also quite a lot of spiritual guidance and inspiration. Howard and I are religious people and we believe that we were guided. We also wish we’d been a little less thick headed to inspiration when we were younger.

The other thing that shifted was me. I’d been sorting some old emotional baggage (because of inspiration) and finally realized that my job was not to fix Howard, nor to save him. I was to love him no matter what. In fact that was a very clear inspiration directly to me, that Howard is strong and that my job was to love him, not fix him. After realizing that, I changed my answers. When Howard was filled with despair and said “I’m broken.” I stopped saying “No you’re not. It’s fine.” I allowed broken and suddenly let’s get this fixed became an option. Howard no longer had to live up to my need for everything to be fine. He finally had the space to consider and then seek treatment. This is exactly what I mean when I said that some of the difficulties were caused by me, even though I am not the depressed person. He worked so hard to be fine for me.

Howard has a problem with the chemicals in his brain. They sometimes make him feel like a complete failure as a human being, even when everything in our lives suggests exactly the opposite. It means that yesterday was happy, but today is miserable even though nothing has changed overnight. We tried all of the non-medicinal options for nineteen years and we still found ourselves occasionally trampled by the unnamed elephant. It was not good for us, nor for our kids. But a year ago things changed. That was when Howard saw a doctor and we started fixing the chemistry by applying medication, and it worked.

When I say “it worked” that doesn’t mean everything is all better now. Howard still has depressed days, but they aren’t as often and they don’t get as bad. Visits to the pit of despair are a rare occurrence, where they used to be regular. Howard has had the chance to experience a steady happiness where life feels generally good. More important, when Howard is having a bad brain chemistry day, we see it, we name it, and we know how to adjust for it. This is quite different than trying to adjust for an elephant that no one wants to admit exists.

If you have a loved one, a spouse, sibling, parent, friend, partner, who is depressed, and you want to help, there are some things I think you should know. The first and most important is this: You can’t fix it. There are dozens of ways that depression can be managed, healed, or even cured depending on the causes of it, but you can’t fix it for them. The depression exists in your loved one, maybe it is chemical, maybe it is situational, but it is inside them, not you. I tried to fix Howard’s depression. Believe me I tried. For eighteen years of marriage I adjusted all of the things I could conceive of adjusting in the hope it would prevent or alleviate the dark days. He’d have a dark day and I would clean all of the things because then a dirty kitchen wouldn’t add to the stress. I’d manage his schedule. I’d take over chores that were usually his. I’d hug him when the shape of the darkness allowed for that. (Sometimes it didn’t and he would flee from all touch.) I argued with him when the dark manifested as verbalized self-loathing.

My efforts helped some. I could see that they did, which is why I kept trying harder. I kept hoping that I could exert control over this thing. My efforts also masked the problem. When your loved one says “I’m broken.” It feels like the right answer is “No you’re not. Of course you’re not. Everyone has bad days.” The more powerful and helpful answer is to say. “Yes you’re broken. This depression is not normal. I love you anyway.” I love you anyway is the answer which allows the depressed person stop being strong, and start seeking help. I love you anyway gives the depressed person permission to change instead of demanding a status quo.

As soon as Howard decided that maybe he was willing to see a doctor, I did the research. I found out who we should go to. I made the appointment. I continue to make appointments for him from time to time. Because making an appointment is an act of will. It feels like an admission of illness. Making the appointment is a barrier that can be really hard to clear. I schedule half of the things which end up on Howard’s calendar anyway, so me doing this is a natural extension of what I already do. The frustrating piece was sitting on a waiting list for three months before they would make an appointment. (There’s a shortage of mental health professionals in Utah.) I went with Howard to the first appointment, but not any of the others. Again, this was me helping him over the first hurdle. After that I needed to stay out of the way because Howard has to own this process.

That is the second thing I want you to know: the depressed person has to control their own healing process or it will not work. I suppose it is possible to force someone to take drugs, but that doesn’t make them want to change the way that they’re relating to the depression. Howard had a huge emotional process to go through with taking medication. He had to grieve. I don’t know why daily medication requires grief, but I felt the same thing when I had to begin thyroid medication. It feels like weakness, or failure. It feels unfair. I see lots of friends who take psychoactive medications making snarky comments about the meds that they are on. Howard started taking the medicine and at first he didn’t want to see that it made a difference. Then he could see the difference and was angry at the medicine for working, because it meant he needed it. Slowly Howard is learning the ways that the medicine helps him. He’s learning that it is a useful tool and that it is okay to use all of the available tools in dealing with this.

Naming the depression changed everything. The moment that we looked at Howard’s depression and said “maybe this isn’t normal.” It changed all of our conversations on the subject. We started talking about the depression as if it were a phenomena that could be observed, which it is. We developed a taxonomy of sorts to describe the different variations. Howard directly asked me to be his spotter with the medications because he is very afraid of slipping into abusing medicine. He and I used calm times to discuss how to handle depressed times. I began to pay closer attention to the sorts of things he would say when he was sliding into depression and I learned when gently pressing him to take a pill was the right choice. I don’t have to press as much as I used to do, because Howard has learned to watch his own brain and identify when he needs the medicine. It took lots of practice. I am very much a part of Howard’s management process, but he is the director of it.

Even with excellent treatment there will still be hard days
. Some depressions can be worked through and resolved in a permanent way. We may yet find a way to do that for Howard, for now we still have to manage the down times. The hardest days are the ones where I’m not feeling completely stable myself. I could be ill, under stress, tired, or just feeling a little down. If Howard hits a depressive patch during those days, it feels massively unfair. I find myself angry at him for being depressed, even though I know he would never choose this. There was one day where all manner of little things went wrong, and I was ready to cry. That was the day when two of my kids had emotional meltdowns simultaneously and Howard was having a medium-down sort of day. I lamented to Howard how unfair it is that I never get a turn to fall apart while someone else picks up the pieces.

The “never” part isn’t true, of course. There have been many times when Howard has rescued me and taken care of me. This is one of the reasons the depressive days hit so hard. I depend upon Howard. He handles his things, I handle mine. We’re both full to capacity with things to do, but without warning Howard will be unable to do his things. He’ll feel like he’s never going to be able to do his things again. He’ll say that to me as he’s sorting the thoughts in his head. And the horrible little voice of anxiety will whisper in the back of my head “what if he’s right?” Right now depression shows up and lays him flat for a day or two. But we don’t know why it shows up. We have no way to make it go away. What if some time it doesn’t leave? This is the horrible fear that I lock away in the back of my brain during the hard days. I see the depression and I know it could destroy us, because when Howard is deep into a depressed day, he is different. His thoughts and attitudes are different. His capabilities shift. The Howard I love and depend on is gone and all I can do is wait for him to come back.

So that is a thing you should know too. Depression can be traumatic and terrifying for the loved ones because they are forced to face being powerless. Of course, that one is unlikely to be news to you. But it means that you are at a higher risk for anxiety and depression yourself. Be on the lookout for that. Be aware that you might also need help and treatment. It is possible that the best thing you can do for your loved one is to go see a therapist or spiritual advisor yourself. You need a support network, because this is a hard load to carry. Faith is a huge part of my support network. I have conversations with God about Howard’s depression all the time. I feel like we’re partners in helping take care of this amazing person we both love. I truly believe that any path that Howard walks toward eliminating depression forever will be an inspired walk of faith. I hope that we’re on that path already even though I can’t tell how far we’ve come or how far we have left to go. But if this is a lifetime-long walk, I’m okay with that. I didn’t sign on to be married to Howard just for the easy stuff.

Preserve your own balance. In order not to be pulled into depression myself on the days that Howard is down, I have to actively shield myself against his moods. This is hard, because I am a naturally empathetic person and I am highly attuned to the emotional states of my family members. Sometimes this means that I need to have physical space from Howard when he’s depressed. Sometimes Howard provides that space deliberately in acts of heroism. In recent memory we had a family party on a day when Howard was depressed. It was the first time I’d been able to enjoy the company of my siblings in a very long time. Howard hid himself away, keeping his bleakness contained so that I could enjoy the event. I recognized his sacrifice and told him that I did. The verbal recognition was critical so that he knew that I knew that he was making a special effort for me. Also so that he knew that I was aware of his depression and he was not abandoned with it. It was our way of working together to make sure that the depression did not ruin a party. We hope for future parties where Howard and I can both attend.

Listen without judgment. This is probably the most important function that I serve for Howard when he is depressed. He needs to process and think through what he is feeling. Over the years we’ve learned how to communicate the depression without wallowing in it. It is rare that I’m able to say something that alleviates the depression, but not being left alone with it is a huge help.

Talking about it can help. There is a silence that blankets anything that hints at mental weakness or illness. People are afraid to admit that they’re struggling with mental health issues. Some of those fears are founded in reality. Employers think twice before hiring someone with admitted mental health struggles. People look askance. The stigma is real. But part of what helped convince Howard to get help was when he first started talking about the depression with trusted friends. Part of his ongoing process is to speak up on the internet when he’s having a bad week. The responses to those posts are overwhelming support from others who have walked similar paths and thanks from people who are grateful that someone is willing to speak up. This is the reason I wrote this (very long) post. Because somewhere out there is someone who needs it. And because once I began it, I realized that I needed to say all of it. I’m certain there will be more things to say on a different day, but this is my last thought for you right now. Hang in there. You and your loved one can get through this and find a better place. Howard and I did.

Edited to add: As a result of questions and discussions prompted by this post, I’ve decided to add links to some support organizations which may be useful.

NAMI is the National Alliance on Mental Illness. They have a page dedicated to helping people connect with support groups and discussion groups both online and in person.

Google also led me to DBSA the Depression and Bipolar Support Alliance. They also have a page devoted to helping people connect with the resources that they need.

There is the ASCA, Adult Survivors of Child Abuse. If a history abuse of any kind factors into your loved one’s depression, it is probably best to talk to someone who knows how to thrive after that.

If you want a faith centered approach to healing, you might consider looking at the LDS addiction recovery program. Reading through their 12 steps, most of it applies if you just substitute “depression (or anxiety, or mental illness) for the word addiction. You do not have to be a member of the LDS (mormon) faith to use these services.

I am certain that these are only the beginning of the resources that are available to you both locally and internationally. The world is full of people who understand your pain and would be delighted to help you find a happier way to live.

Seeing and Naming the Difficulty

Tonight I miss my hammock swings and warm afternoons. Some of this is just regular mid-winter blues. Most of it is the fact that I’ve been nursing sick kids, sick me, sick husband for more than three weeks now. Logically I can see that we’re wending our way toward being well. That has been true ever since last Saturday when a doctor finally listened to me and agreed that we needed antibiotics. We’re getting better, but it is happening slowly. Today we had a set back. Link somehow contracted stomach flu. (Howard’s flu did not have a gastrointestinal component.) No idea how Link did that since he’s not gone anywhere but the doctor’s office for more than two weeks, but he’s got it. We traded post-cough vomit for empty-your-stomach vomit. I just want him to be well. I want him to have his life back. Today is not that day.

I remember reading a section of Cory Doctorow’s Little Brother, where the hero had been through a traumatic experience and was called on to describe that experience to someone else. The hero struggled with what words to use because it had been the hardest experience of his life and yet he knew that there were other people who’d been through even worse things. No one wants to be mid-lament, only to look around and realize that everyone else thinks you’re making a big deal out of a small thing. On the other hand, I’ve also had the experience of telling my story to an audience who then is so aghast at what I’ve been through that they then have their own grieving process because of my words. It is hard to know, in advance, how a difficult story will be received.

So the past few weeks have been very depressing and isolating for me. They could have been far worse. I was always aware that illness arrived with an expiration date. Whooping cough lasts 6-10 weeks, it is just that when you’re on week three of exhausted sickness, “only three to seven weeks to go” just doesn’t feel comforting. With the exception of the quarantined days, we were able to take care of ourselves. But I was far more tired and less focused than is usual for me. Howard suffered from flu and was even worse. I narrowed my focus, then narrowed it some more. During the first week of absences, I tried to contact teachers and collect homework. But then the kids were too sick to do the work anyway and I didn’t have the emotional energy to talk to more teachers. My well of sympathy tapped out to the point where my kids would need it and I had none to give. I let it all slide.

Part of me wants to qualify all of this by saying our lives were never in danger. And they weren’t, not really. Whooping cough is miserable but only dangerous to the very young and very old. Yet in those gasping moments when coughing has emptied my lungs and my throat has spasmed shut, my body was convinced it was going to die. For a minute or three I would alternate between coughing and gasping. Repetition taught me that I wouldn’t die. Logically I knew I wouldn’t, but adrenaline surged anyway, the body’s instinctive reaction to obstructed airways. I was shaky and weepy afterward. So were my kids when it happened to them. I would sit in my house and hear the whooping coughs resound from all over the house. I hated that sound with an adrenaline-driven vehemence. I can’t imagine what it would be like to try to tend a baby or toddler through those coughing fits. It could have been so much worse. That knowledge makes me feel like I’m just whinging.

But I am not. I am trying to record an experience so that I remember. So that when someone I know becomes ill, I can remember how much small kindnesses meant to me. So that I can remember what things I most needed and I can then offer those things. I’m not going to expect me to transform into an angel of mercy quite yet. We’re still recovering. I’ve still got to figure out what things I’m going to attempt next week and which things I will continue to ignore. because I can only do so much.

I’m also recording this, because there is no suffering Olympics. It is not a competition where some suffering is deemed worthy of sympathy and other suffering is not. I’m allowed to complain. I need to remember that, because I’m not very good at letting myself recognize my own negative emotions. I am allowed to complain when things feel hard, even if I think that someone else would be happy to trade for my hard things. It has been hard. It is still hard even though we’re on the way to being better.

At the End of a Very Long Week

I’ve been thinking about cutting my hair. Especially in the last few days thoughts of cutting my hair have been increasingly common. This is not because I want short hair, or any particular haircut at all. I just want something to be different. That “want something to be different” is being projected onto my hair because the last few weeks have been so miserable. We’ve been sick, Link has been miserable, and my head has not been clear enough to see how to navigate any better. I want to be able to control something, and hair is easy to change. (Though harder to change back.)

We’re not out of the woods yet as far as being sick goes. Though today I’m catching glimmers of light which have me believing that the woods edge actually exists. Some days I wasn’t so sure about that. I can now imagine that we’ll have a day with no post-cough vomit in it and that day may arrive between now and Monday. I don’t yet believe in days with no coughing. I’ll just be happy if we can keep coughing below the threshold where bystanders fear for the coughing person’s life. It would be lovely if Patch could go back to school next week. Even lovelier if Link could as well.

LTUE is next week. If your near Provo Utah and are at all interested in writing or in discussions of Science Fiction and Fantasy, I definitely recommend that you attend. I’ve got an array of program items and I’m hopeful that tomorrow I’ll have a chance to begin planning for them. I know lots of other people who are fantastic and will be teaching on amazing topics. It is a symposium that is well worth your time.

Howard will be at RadCon in Washington. He’ll have books there. I know because I mailed them on Tuesday. He’ll also have almost 40 pieces of art available in the art show. I mailed those today. The only thing left to do is pack up Howard and send him. We’ll do that next Thursday.

I still hate the gasping, whooping sound that accompanies so many of the coughs in our house. It is like being strangled by your own throat muscles 15-20 times per day. But we’re coughing less and sometime in the next month we’ll be done coughing. Ultimately the swabs testing for pertussis came up negative, so there is some question about whether that is what we have. The county health lady with whom I’ve been exchanging email suggested parapertussis, which I didn’t even know existed. It is like pertussis-lite and not covered by vaccines. However if our experience has been “light” then pertussis is deadly and everyone should be re-vaccinated. I am of the opinion that if something quacks like a duck, flies like a duck, and swims like a duck, I’m just going to call the thing a duck and treat it accordingly. So I’m going to continue to call it whooping cough.

Quarantined Sunday

The sun was out and bright today. The sky was a brilliant blue. It was the kind of day that is always a blessing in mid-winter when so much of the weather is gray. I viewed the day through fogged up windows because we’re boiling water constantly to humidify the air in our house. It condenses on the windows and fogs the view, but it relieves the coughing some. I did not go outside because we’re not supposed to. That’s what quarantine means. Stay home. No one is checking up on us or enforcing the quarantine. It was just doctor recommended and since I would wish this illness on anyone else, I’m honoring it. Gleek is cleared for school tomorrow, Howard is cleared to run errands. The boys and I stay in the house.

This morning I handed out antibiotics to five people. It is the second day of treatment and I can already tell the difference. The coppery taste at the back of my throat has vanished. Howard reports the same. Our moods are improved and I feel alert for the first time in at least two weeks. Today I can feel like this illness is just a thing we will deal with. Yesterday it was a terrible looming thing that had taken over our lives. I don’t think a night’s sleep is the only difference. Stress and depression are not listed as symptoms of pertussis, but I’m going to add them to the tally of things I’ve experienced because of the disease.

I’ve had lots of vaccination discussions as a result of catching a vaccine preventable disease. The pertussis vaccine does not impart immunity, it increases resistance. Direct exposure can overcome that resistance. We live in a highly-vaccinated state, but outbreaks still happen. Gleek is the one who caught this first and she was re-vaccinated less than a year ago. Many people are ready to jump in and blame people who don’t vaccinate. I think the reasons for outbreaks are more complex than that. I’m hearing from friends all over the country, many of them are health professionals, and they’re all reporting a resurgence of pertussis outbreaks. Lower rates of vaccination can contribute to that. There is also the fact that doctors are much slower to hand out antibiotics than they were fifteen years ago. I had to argue and get a second opinion before we got the antibiotics we needed. In an era where antibiotics flowed more freely, outbreaks were likely quelled much more quickly. Note: I’m not saying that doctors are wrong to be careful about giving out antibiotics, just that this could be part of what happens as a result. I’ve also heard it posited that there is a pertussis strain that is not adequately covered by the current vaccinations.

I will be providing as much information about our case as I can to those whose jobs it is to watch and understand outbreaks. Our job is to get better, to prevent further infection, and to notify those who may have been exposed.

Hopefully tomorrow we can have a day where I blog about something not cough related because it would be lovely if I could spend my time thinking about something else.

In Which the Taylers are Disease Vectors

The Tayler house is officially a quarantine zone. The urgent care physician agrees with my diagnosis of Whooping Cough (pertussis). We are awaiting lab confirmation, but we have classic symptoms including the whooping sound with coughing. We are all fully immunized, we have it anyway.

If you have been in contact with any of my family in the last few weeks, particularly if they coughed near you. I am really sorry. And if you start to feel congested or have a cough, please go to your doctor and ask for Azythromyacin antibiotics. If you catch it early, you will not have to endure 6-10 weeks of horrible coughing. You’ll just get better quickly.

This has been my public health apology and notification for today.

This whole process has been somewhat frustrating for me because I suspected whooping cough last week. The minute I started coughing I knew the cough was not a standard cold. But I can’t go back and un-make any decisions. The best I can do is make sure that I appropriately notify everyone who may have come into contact with us.

Gleek is well into the recovery phase. She was the first to cough and got off relatively lightly. Her cough never got very bad and would have remained undiagnosed except for the rest of us. Patch has developed the classic whoop sound. Mostly he’s fine except for the 15-20 times per day when he’s struck with a coughing fit. Link has it worst. He’s exhausted, running a low-grade fever, and coughing to the point of vomiting once or twice per hour. I feel relatively fine except when I get a coughing fit. Then I gasp and whoop just like Patch. Howard is just starting to feel the beginnings of a cough, which means an application of antibiotics should help him skip the worst of it. Kiki was home about a week ago, but has yet to exhibit any symptoms. If she does, we’ll immediately start antibiotics for her. Patch and Link both missed a week of school last week and they’re likely to miss all of next week as well.

This whole whooping cough experience has been frustrating and depressing. I do feel some vindication at the confirmation of my diagnosis, but I would much rather have not dealt with this. I would like to be done with it, but prognosis is that we’ll have coughing in our house for several weeks more.

In related news, I will not be participating in the Month of Letters challenge this year. It is a wonderful thing. I’ve done it the last two years and I highly recommend it. But it does not seem wise nor kind to deliberately send physical objects out of an infectious zone. No paper letters will be leaving my house until I’m certain we’re no longer contagious.

Noise and Motion

I don’t pause enough. The minute I finish a task, I check in to social media sites, I read blogs. These things represent a break in my day and taking breaks is a good thing. Except I rarely eat without also reading. Somehow there is a piece of me that is convinced that we need some sort of input all the time. I can’t do one thing if the task allows for two things. Again, this is a useful way to accomplish more. The trouble comes when I am constantly inputting things into my brain and never leaving time for them to percolate and process. There need to be times when I am doing one boring thing so that my brain has a chance to quiet.

I haven’t been sleeping well. This is sad and strange because during the holidays is one of the few times when I get enough sleep on a daily basis. My usual schedule has me running at an hour-per-day sleep deficit which I try to catch up on Saturdays. This past week I’ve gotten eight or nine hours per night and still been tired the next day. It is like the anxiety waits for me in my subconscious and disturbs me all night when I’m supposed to be resting. I’m restless, I wake often, as if unremembered things chased me through my dreams all night. This particular pattern is a familiar one and I know the cure. I need more exercise during the day. If I break a sweat during the day then I don’t at night. It is some sort of weird conservation of sweat I guess.

This evening I was at loose ends. My work brain had shut off for the day. There was nothing I particularly wanted to read or watch. I knew that I wasn’t likely to sleep well, particularly since I have a driving day tomorrow and the night before a driving day is almost always an anxious one. I wanted to be distracted, to not have to think about the work I felt I should be doing or the long drive tomorrow. But as I was preparing some food and pondering my current lack of book, I realized how seldom I allow myself to be alone with my thoughts. I thought about this lovely video poem I discovered several years ago on How to Be Alone. Then I sat down and ate with just my thoughts for company. I noticed some things out of place in my house and decided that my next hour would be spent putting them in order. It took two. I made the work more energetic than strictly necessary, so that it counted as light exercise. During the work I did not think of anything in particular. In fact, mostly I thought of nothing. It was a good rest for my brain that thinks of things far too much.

I should practice this more often, focusing on one thing instead of always seeking out more. I don’t know if the work and quiet was sufficient to provide a better night’s sleep, but it certainly provided a better evening than I otherwise would have had.

Musing Upon How I am Doing

“How’s your day going?” The question seems so simple and it ought to merit a simple answer. The same is true of “How are you?” Which calls for a simple “fine” or “awful.” These questions are hard for me because whatever I am in the middle of, I have to pause and figure out which piece of emotion is relevant to my current context and to the person who asked. With friends at church I talk about the start of school and Kiki going to college. Writer friends want to hear about how my writing life is going. Howard wants either a quick business meeting or to make sure that his wife is doing okay. My kids are using the question as a precursor to a request and probably don’t really want an answer at all. Summarizing is difficult, just ask any writer who has had to create a synopsis for a novel. There is so much going on, so much nuance, and somehow all that has to be shed to catch only the core of the story.

Today’s story could be about setting up a Point of Sale system and the consequences of avoidance. It could be about adapting to being a three kid household, but I’m still in process on that one and the thoughts will be more coherent a little further down the road. I could tell about anxiety and the way that it lies, makes me avoid things that are not complicated, and then screams that something is a disaster when it is not. I could tell how I feel both triumphant and strong, but also like a complete failure. I could talk about my to do list or my awareness that the kids got very little attention from me today. So when the guy who brought by Howard’s tuxedo for a fitting asked how my day was going I laughed a little before attempting to answer.

How am I doing? I really don’t know. Kiki went to college and I miss her. Sometimes I miss her in the way that most people think of missing another person in that I think about her or something I’d like to say to her or a hug I’d like to give her. That sort of missing is experienced as a sadness, but it is only periodic and fairly comprehensible. Harder to quantify is the part of my brain that tells me I haven’t seen her for awhile and I should go upstairs to check to see if she’s where I expect and that she is okay. It is this ingrained mommy radar which constantly tracks my children at a subliminal level. When they were little it paid attention to noises and silences to prevent damage and danger. When they were little I immediately checked when they fell off the radar. Now I argue, they’re fine. Of course they’re fine. I need to not hover. I need to give them space. Yet there are times where I have to see that they are okay or I get anxious. That part of my brain is really struggling with being told we can’t really check on Kiki anymore. Texts and tweets help, but I know how easy it is to put on a brave face for two sentences of text. Is she okay, really? I can’t tell and that has been ratcheting up the ambient anxiety. This will pass. I’m sure it will, because I learned not to be anxious when they went to friends’ houses solo and when she started driving off in my car. So anxiety and missing Kiki are wafting through my head and combining in not so fun ways. But I don’t feel like a piece of my heart is walking around outside me. That feeling came and went on the first night. It may visit again, but thank heaven I don’t have to live with that constantly.

I had a moment of raw grief on the night I came home after leaving Kiki at college. It hit the way grief does when I was doing something unrelated, scooping food for the cat. I was struck with the fact that I would never again be in charge of all four of my kids. It is possible that Kiki will come home to live at some point in the future, but she will be an adult come to stay not a child in my house. That part is done. For two minutes sadness rolled over me because that part was really good the last few years. Once the first pressing weight abated, I realized that the balancing joy is contained in the exact same fact. I will never again be responsible for four children. The weight of that responsibility is forever lighter. Kiki’s life is her own, I don’t have to carry it anymore. There are other joys which lay beyond this transition. I’m seeing the beginning of them already. Kiki, Howard, and I are beginning to develop our methods for keeping in touch. The kids at home are going to shift patterns. We’ve barely started, we’re only on the third full day here.

When Howard goes to conventions there is a portion of me that goes into a holding pattern. I continue doing the necessary tasks and getting things done, but somehow I’m far more likely to engage in time killing activities. I’m passing the time until he comes back. I can feel that same waiting tendency wanting to kick in now, waiting for Kiki to come home. I think it is a function of the mommy radar, that I can tell it don’t worry about this one until…fill in the blank. I wonder how long it will be before that goes away. I suspect a couple of weeks.

And sometimes everything is just fine. No anxiety, no grief, no feeling of waiting, just me and my day. Tomorrow is church. I’m going to be asked the how are you question a lot, because my friends there know that Kiki left and that we have big conventions. They want to check on me and know if I’m okay in much the same way that my mommy radar wants me to check on Kiki. Because if I’m not okay, they want to be ready to help. My life is full of people who would be happy to help and make things easier. I just first have to figure out what help I might need, which means I have to figure out how I am doing. All of which is why if the “how are you doing” question were part of setting up Facebook, I would check the box next to “It’s complicated.”

At the Beginning of a Busy June

Yesterday I closed the door behind my last shipping helper and breathed a big sigh of relief. The shipping was done. 2400 packages, 20,000 coins, 270 work hours. We did it all in two work weeks. Before the shipping was complete, people began reporting the coins arrival. Over and again we hear that the coins are even better than expected. We feel the same way. I love them. This is good because I spent most of this morning working with Janci to rearrange my shipping room to make space for the coins. There are a lot of them still here. The mass shipping is done, but I’ll be shipping out Kickstarter coin orders for another few weeks. There are problems to resolve and addresses to chase down.

Because life is never simple, I have not been able to focus on just coins and shipping. Yesterday morning Howard’s aching tooth proved to need a root canal, so we took care of that. This afternoon Link had an appointment with a specialist for a minor issue and we’ve been referred to a follow-up specialist. That appointment is tomorrow. In theory this is the week when we’re starting to establish family patterns for the summer, but everything is going to get disrupted again because Howard flies out on Friday for the Writing Excuses retreat. There are lots of preparations involved. It has been awhile since Howard was gone for so extended a trip.

My family came into town for Kiki’s graduation and then departed again. They’ll be back for family reunions in another couple of weeks. I’ll likely wave to them as they pass through. I have so much clean up and organization to do after the past three months. I’m beginning to make progress, but I think it will be the end of June before I truly feel like I’ve got things managed.

Yet, I’m happy. I’m running from thing to thing. I’m often tired and losing track of what comes next, but I’m happy instead of scared. This is good.

Hard Things, Anxiety, Schools, and Hope

Sometimes, in the middle of a hard thing, all I can do is remember that I once believed it was possible and keep going.

I tweeted those words yesterday, because yesterday and Monday I could not feel hope. I could logically think through the steps we’re going to take in the next few weeks; the meeting with school staff to establish structures for Gleek, the psychological evaluation report meeting on Friday, the round of therapy that will begin soon after, the probability of medication. I could see all the steps. I knew that they would help, but I had run out of hope. The answer was to keep going, following the logical steps until things get better. So that is what I did.

Today I don’t exactly feel full of hope, but I’m not so wrung and numb as I was. I’m cautious of hope right now because I had so much of it a week ago just before it became apparent that even my stepped up parenting game was not going to bring Gleek’s anxiety under control. I hoped so hard that the extra efforts would work. Instead things got more difficult, which led to an emergency meeting and Gleek taking a two day break from school.

Sometimes a crisis can be a good thing if it serves as an impetus for a course correction. The two days gave me time to emotionally process. They gave Gleek a chance to realize that she really does want to be in school. On Monday I had no clue what could be done. Today I have a new plan to share at the meeting tomorrow morning. More important, I see clearly how very fortunate we are in her current school placement. I’ve had four different teachers tell me that if Gleek needs a quiet space she can come to their classroom. The office staff greets her by name. Any time one of her classmates saw me (more than one classmate, at least four times) they’d say “Tell Gleek we miss her.” The school hosts three classes for autistic children and one for kids with behavioral issues; the staff knows how to manage a child who has curled into a non-responsive ball. The students consider that sort of thing pretty normal. We are so very lucky to not be fighting misunderstanding and hostility while facing down anxiety.

The reasons for hope are many. I’m pretty sure we’ll get there. If I have one complaint it is the fact that we had a month long wait to see the psychiatrist while having to manage crises which could have been avoided if we’d already seen him. Right now we’re in a patch and hold pattern. Howard is holding down the fort on the business front and catching many of the household tasks that I’ve abandoned. The other kids needs have not declined and we’re working hard as parents to keep meeting those needs. Everything else I’ve pared back to minimum so that I have enough flexibility of schedule to drop what I am doing and go spend an hour at Gleek’s school as needed.

I found myself about to write that I hope we’ll stabilize before the challenge coin shipping hits, so I guess I do have some hope. I also hope that this hope will not be completely smashed like the last round. That counts as a meta-hope. Knowing that I have hope is both relieving and frightening. I need to stop thinking about it right now. I know the plan for tonight and tomorrow; that’s all I need for now.

One foot in front of the other until we’ve arrived someplace else.

Things I need to tell myself while facing diagnosis for a child

First: Realize that you have a battle to fight with denial. You really want to be imagining things. Any time things are normal for a while, you will doubt the diagnosis, doubt the need to seek treatment, decide to just let it all slide for a bit.

Second: You will grieve when you finally hear a doctor confirm what you already knew, but wanted to pretend wasn’t so. It feels more real when said by someone else. Then all the denial washes away and you have to know that your child will struggle with this, perhaps all her life. And it isn’t fair. It isn’t what you wanted for your child, but it is now fact.

Third: You will react to any behavior from any of your other children which mirrors the disordered behavior. Watch that.

Fourth: Diagnosis is a tool, a lever you can use to shape the public school system into something that will work for your child. Make sure it stays your tool rather than being used against her.

Fifth: It is going to be okay. Really it is. Remember the inspirations you’ve had. It’ll probably all settle down before summer.

Sixth: Don’t get so absorbed in the difficult things that you forget to see the wholeness in your child. Consciously think of the strengths she already has that will carry her through.