06/269/2018


Perspectives


Somedays, the little things just add up. 


Thing is, I'm terrible at realizing when the camel is feeling a little overloaded with straw. I've gotten better, as i can now notice the tremor in the knees and the cold sweat, and give the poor beast a place to pass out instead of having it drop dead underneath me (I cannot tell you the number of times I had my body just give out on me and I hadn't seen it coming).

I was not, then, specifically worried about heading into an office where I'd had a rough experience with iritis/uevitis before my ankylosing spondylisits diagnosis. It was nice to be in the office again, as the nurses and PAs were/are super friendly, and this was my first visit where my eyes weren't hurting. Even the eye scans and measurements were less uncomfortable since there was no photophobia to deal with. In fact, the whole process was totally non-emotional until I started waiting to see the actual opthamologist. Here,  I got nervous, and also a little cranky, as she and I hadn't done so well at our last visit (I'd been told to "go home and rest and see if it gets better" but as an educational interpreter I didn't have that luxury, especially as my son's surgeries had eaten up every shred of vacation/sick time that I had)...plus the fact that the pain was so bad I wasn't sleeping anyway.

Whatever, I wasn't really excited to see her, because the last time I looked like this:

We got through the appointment only to discover that in two years, the steroids that we'd had to use to fight the uevitis (since I was not yet on a biologic), had permanently damaged my vision. I not only was *just* shy of needing glasses to drive (!) but had developed glaucoma in one eye and a cataract in the other. Mild, in both cases, but nothing that had existed before. Grumpily, I went home with my RX, and ordered glasses. I also scheduled two friends to come over and witness some paperwork for me and Pablo.

See, I needed to get all my Power of Attorney / Last Will and Testament documents signed and notarized, as I'm going in for surgery in a few days, and it's really been weighing heavily on me. Excluding minor things like removal of suspicious skin lesions, this is my 5th or 6th real surgery, and I'm not exceptionally excited about it. However, there's a process for this (my previous will had been witnessed by a woman I am no longer in contact with, and asked that my children be put into the care of a family member who is currently in medical school, so there were clearly some issues that needed updating). It wasn't really particularly uncomfortable, as paperwork is a good portion of my job, and I'm not shocked to find that I know how to get 5 "civilian" signatures and that of a notary* on every form. It's a routine, and I like those. I find them comforting.

Then, my glasses came. Zenni Optical is a good place to get cheap glasses (I mean, mine were each $30 a pair with impact-resistant and smudge-proof lenses), so I ordered 2 pairs and waited for them to arrive. I mean, I was hoping they'd look cute, or interesting, but it wasn't like I was going to NEED them in any way, right? I could still see...because I could knit and read and drive and throw a ball and write and...you know, the things you need your eyeballs for. The adorable blue boxes came, I unwrapped them, slid the glasses on, and...








             
...broke down crying. Big, hot tears started to pour down my face, and my throat tightened up. I could read the license plates on the cars down the street. The leaves all had veins visible as the sunlight shown through. The edges of things were crisp. I took the glasses off, and the world shifted back out of focus. Apparently, my perspective, my natural way of looking at everything, was now broken. It wasn't good enough.

Somehow, that was too much. needing surgery, wondering if the surgery would prove to be cancer? Whatever. The pain in my back that makes movement impossible and necessary at the same time? Life to be borne. The ankylosing spondylitis was probably going to kill me eventually, but now it had damaged my eye-sight, and I was going to have to deal with that damage every day. I'd have to remember the glasses, or deal with the blurry reality.

Today, it really hit me that my *diagnosis* has done damage that is irreparable.It can't be avoided.

*Shoutout to Bobby Roberts, the friendliest and most accommodating notary public in Portland. He probably will never read this, but the guy is a total gem.

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06/11/2018


Suicide and Living

I haven’t seriously entertained the thought of ending my life for at least five years, until about the last month or so. Grad school made me more angry than anything else, money issues have been panic inducing and yet not enough to trip that switch. Parenting is always hard for me, as I don’t think I have a natural talent for it, but I’ve enjoyed seeing Rory become so much more able to negotiate the world, and watching Julian blossom into his own has been astounding.

This last month hasn’t been a bad month, either. Not really. I got hired permanently at a job I adore, had a big party with my friends, intentionally chose to accept a B+ in a class in order to spend much needed time with people I care about. I got involved in local politics, and hung out with some new people. I’ve had s piece of writing published, I’ve set up my new office space (home) and new cubicle (office). My service dog passed his Canine Good Citizen test, my biopsies came back benign or pre-cancerous, and I’ve finally found a haircut I like.

Yes, I’ve had a couple of particularly terrible migraines (including one that has persisted for nearly a week), and that is hard. My back isn’t what it used to be, and since my car accident in February, neither are my knees., so I’ve hit the ground a few more times than I’d like to admit. I’ve chosen to give up my previous office space in the house, and there’s been purging with the moving of books, and that always includes grieving. Our dog of 10 years needs to find a new home, and one of the professional organizations to which I (reluctantly) have belonged is destroying itself from the inside.

If you know me, you know that this reads as a pretty easy month, all things considered. I mean, we’ve had worse is all I’m saying. But ever since my dermatology appointment where we realized I’m going to need a mass taken out of my chest, I’d been noticing more mentions of suicide, everywhere. A billboard for the new 13 Reasons Why has gone up on my commute. A couple in their 80s was allowed to avail themselves of doctor-assisted suicide while holding hands. Then Kate Spade and Anthony Bourdain lost their lives in a matter of days, and suicide is all over the news. Articles like this are written. People talk about what they can do to support their loved ones.

I think back to when I called my daughter’s pediatrician, and told her I was going to jump in front of the train that ran by our apartment. I had slept for about 5 hours in the previous 3 days, my baby wouldn’t stop crying, and Pablo’s paternity leave was over. I had started hallucinating, felt all alone, and was worried I would eventually snap. “You don’t want to do that,” she said matter-of-factly, continuing before I could cut her off. “That’s the Santa Fe and it is so slow it won’t kill you, it’ll just push you to Sacramento. You don’t want to go to Sacramento.” I paused, thinking about how irritated I would be to be stuck in the capitol with my daughter back in Oakland, and I snapped back to lucidity for just a second. If I could not want something as much I I did not want to get pushed to Sacramento, I was clearly not unattached from this mortal plane. I laughed, and then she started talking me through ways to get some sleep despite my girl’s inability to stop wailing.

A little less than ten years ago, I had tiny children with huge needs, and was caregiving for someone battling major depression for the first time in their lives. At some point, I felt I had to choose between their mental health and mine, and I felt their health and well-being were more important in that period. I supported them to the detriment of my sanity for years. When it began to really take its toll, I resigned myself to the fact that getting them through into a healthy place was going to cost me more than I could afford, and that objectively it was better for them to survive than me. Then, I had someone in a position of power abuse it in a way that not only caused me difficulties, but let them ignore and participate in the abuse of another student. I got righteously angry and indignant, and decided to fight what I saw (and still see) as a gross abuse of power. That bought me time to work with the person I was caring for, as well as their friends and theraputic team, where we hit upon a combination of medication, social engagement, and a way to overcome an issue they were feeling unnecessary shame over. I was able to find distance, after that, and to get needed medical attention.

Currently, there’s no such slide into madness or worsening depression. The surgery and the new job already have me updating my emergency binder. Copies of legal forms, POAs, medical proxy paperwork. I find myself trying to get friends over just to have them witness our wills when the Notary can be free. I’m irritated when I can’t get into the ABLE account for my son, and then reminded that I’ll need to talk to my brother about who will take over as his POA/medical proxy/trustee/next-of-kin when I die. I grumble through it all like I’m doing bills, and with less enthusiasm than I have when I am writing an essay for school. Then it hits me: I’m not really worried about it because I know what will probably take me: me.
Yes, the AS could kill me (and will, if nothing else does). Yes, the surgery could show that this fluid-filled mass is cancerous. I could have a freak accident...those seem to happen to my family. But really? If I live long enough to get to where it is necessary, I know I’ll have a doctor help me die in my bed. I debate getting a DNR tattoo. If there’s cancer, I’m not sure there will be radiation/chemo. Do these count as suicide? No. Are they, functionally, not much different?

There is no real fear of the horrific and gut-churning pain that WILL result from an issue with my injectible medication (it losing impact after so many years, my insurance failing to cover it, job loss meaning I don’t have the insurance to cover it...etc), because I know I wouldn’t accept that reality. It’s a fact, in my head, that when circumstances get to that point, I know what will happen. It’s not a cry for help, it’s not something done out of sadness OR depression, it isn’t motivated by a mental illness*. It’s just something that IS, like how Julian will eventually need another surgery. This would be more concerning, for me, if there was anything rash about the way it runs through my head.

My “you should maybe check in with your doctor or loved ones” alarms g are pretty well tuned, as I’ve been living with a few mental health diagnoses since I was a teen. When tied up with my Bipolar, it’s clear that once I start making plans, I know it is time to mention it to someone. I know I’m in a worrisome place when I start thinking logistics, which is rough when some parts of that area of concern overlap with what is healthy pre-surgical planning. But this hasn’t been that. It’s been a calm acceptance of a mortality that is uncomfortably more tangible than I would choose. Far less “want to die” and more “choosing how to live.” It’s not the un-emotional void of any kind of desire to die, or to simply stop living. It’s a very different feeling, and one that feels rubbed raw by all of the “thoughts and prayers” type of messaging that I keep seeing in reaction to these high-profile celebrity deaths.

That said: Do reach out. Do check on your friends, neighbors, sad strangers. Do talk about what depression really is, about how mental illness impacts individuals/families/communities. Please. Support one another, however you can, because sometimes all it takes is one interaction to remind someone that they don’t want to end up in Sacramento.

* This is not to suggest that there is anything inherently more problematic about people who die by suicide when it is connected to a mental illness, nor that I don’t have mental health diagnoses of my own.


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