And then the bandages came off…

Last week I was in a training session on Zoom — more precisely, a Diversity, Equity & Inclusion healing session. It was a small group, so as we went around and introduced ourselves, we were asked to share something that had brought us joy in the last week.

When my turn came, I had to be honest and say that nothing had brought me joy in the last week; that the dark tunnel kept getting longer and the light farther away. I was able to mention something that had given me a little lift —a blog I found here called Mickey’s Journey. Mickey’s parent posts pictures of his latest accomplishments and they are very touching. I see joy in those pictures that I have lost.

I have been struggling to come up with a metaphor for how I have been processing the autism diagnosis I received eighteen months ago (at age 57). The first few months were a honeymoon period of relief — but since then, a new reality has been sinking in.,

I just remembered a scene from M*A*S*H that seems to sum it up. Colonel Potter is telling one of his many WW1 stories. After being wounded in an explosion, he spends a month in a French hospital with bandages over his eyes. He is tended by a nurse called Colette and is very comforted by the sound of her voice and the touch of her hand. (For context, Potter, BJ, Hawkeye, Frank and Radar are stranded overnight in a broken-down bus and are passing the time sharing tales of “When love conquered all.”) Then the day comes for the bandages to be removed. And there she is. Colette. And obviously nowhere near as attractive as Potter had expected, because he jokes, “I pretended I was still blind!” He then goes on to say that love did indeed conquer all, but he “couldn’t have done it without the bandages.”

Nurse Colette represents my life — and all the things I have done. All the things I have cared about. All the things that have given me comfort. But now that the bandages are off, it does not look so good. There was a time — not so long ago — I had no regrets. Now I regret almost everything — all the way back to my first choice on my university application at age 17. I have made poor choices for friends, hobbies, education and jobs. I have allowed myself to be influenced by people who did not have my best interests at heart. I have allowed myself to be comforted by watching TV and drinking wine. I have filled dozens of notebooks with writing that no one will ever read.

Life is pretty decent right now. I have a good job that I can do from home. And I live in a nice neighborhood. But I have had a lot of disappointments and sadness along the way. And I have embarrassed myself so frequently without realizing it at the time. I can not think of a single event that does not make me cringe to think about. And on top of all that, despite having been using the internet since the early 1990s, I have become very fearful of being online, something that is almost impossible to avoid now. At least three times a week I am terrorized by fears that one of my accounts/devices has been hacked. Every surprise behavior of my iPhone prompts several hours of research to reassure myself it is either expected behavior or an annoying iOS bug. Unfortunately, my job is in IT, so my newsfeeds are always full of reports of the latest zero-day vulnerabilities and zero-click malware attacks on one platform or another. I am in a permanent state of fear.

I am not one for video games because my hand-eye coordination is lousy and my reactions are too slow. But sometimes I have had puzzle apps on my phone or iPad where I just try to top my best score. Most apps allow you to abandon a game without seeing it through to the end. Once I realize a game has gone off the rails and that I am not going to beat my best score, I tend to abandon the game rather than waste any more time with it. If my life were one of these games, I would probably abandon it and start over.

But I suppose I could put those bandages back on 🤕

Turned up to 11

Executive function has failed me terribly these last two weeks and I am pretty much a nervous wreck from it all. For a few days I even had trouble eating — and that is very unusual for me. I really don’t think I have to contend with any challenges that other people do not face. In fact, I know many people who have way much more on their plate than I do. But I think autism has a way of amplifying the stress — and it just builds day upon day with no relief in sight. Each night when I go to bed, I hope to wake up feeling even just a little improved — but I do not.

The other problem is that I do not really have a support system. I am not close to my family and do not have any close friends. So I go through everything alone. There are times when I could really use someone sitting next to me as I embark on a task that stresses me out. No matter how many times I read and re-read instructions, you can bet your bottom dollar that I will miss a step or do things in the wrong order. I really need someone to read out the directions to me, one step at a time, and make sure I do it all correctly.

I haven’t had much time to indulge in the things that comfort and reassure me: working on my jigsaw puzzle while listening to podcasts; trying to learn Spanish on Duolingo; and writing, either this blog or a funny novel I started last month. I hope to get back into all of those things this weekend.

Meanwhile, I think the can of wine I put on the fridge should be cold enough to enjoy now.

Waiting for God

The community news blog I read is operated by two professional journalists with decades of experience in radio, TV and newspapers — so it goes far beyond just being a forum for local gossip, articles for sale, obituaries and lost pets. It’s a serious news service. Emergency responses are covered in full detail — unless a suicide is involved. In the event of a suicide, no names and no details are provided, but a web link is provided to resources that are available for anyone contemplating suicide.

A few years ago, I overhead a conversation at work. I work at a nonprofit that provides various social services to vulnerable populations — so we have social workers on the staff. The conversation concerned suicide — and concluded with one person saying, “No one had better ever attempt suicide while I’m around.” The remark bothered me, because it was delivered in a rather glib tone, as though suicide is something that people just do without any consideration or forethought — not what I would expect from a social worker — but that might have just been my own personal reaction.

My family has its own history of suicide and failed attempts — so I have seen the pain that family members go through and and I understand why my local news blog follows the policy of giving no details. But I do wish there was a space to talk honestly about the idea of wanting life to end — outside of the usual suicide prevention initiatives.

Last year, my doctor had me complete a short assessment. One of the questions was, “Do you ever have thoughts about ending your life?”It was a multiple-choice question, with answers like, “Never”, “Sometimes”, “Daily” — something like that.

I paused a while on this question. For the last few years, every morning when I wake up, I wish that I had not. I wrote about this in a recent post. My first thought is I wish my life would end. My second thought is how ridiculous that first thought is given that my life is rather good right now compared with what so many other people are going through. But wishing my life could just end is a thought I have many times a day.

However, that is NOT the same as having thoughts about ending my life! But if I were to tell someone I wish my life could end, they might be alarmed and fear that I am contemplating suicide.

I did talk about this in counseling at the start of this year. My therapist incorporates personal belief systems in her work, and knowing that I believe in reincarnation, she suggested that perhaps I felt I had run out of steam with this life — and would prefer to be allowed to move on to the next one. This idea has been helpful in managing my feelings.

Admittedly, I am not at all hopeful for my future. I am doing OK now, but I am only 58. Given the hopelessness and despair I see all around me, I do not see how this could be anything other than my own future. My “retirement planning” actually assumes that I will eventually be homeless. And I think that is why I would prefer to make an early exit.

I am not religious, but I do believe in God. (When you believe in reincarnation you kinda have to believe in God…if you think about it…) I think that is why my second thought on waking up is about how ridiculous that first thought is. God probably pokes me in the ear. Believe me, I am very thankful for the life I have had so far — but I am not sure I can face the prospect of perhaps as much as twenty years as a homeless old lady, especially in a world that may never recover from the disruption of Covid-19. I am not sure what would be the purpose of going through this, unless it would be preparation for something I will have to contend with in a future life — in which case, taking matters into my hands via suicide would be counterproductive. God would probably insist on sending me right back to here to experience what I had tried to weasel out of. Or God might send me somewhere to experience something far more horrible.

My sister-in-law did Death With Dignity a few years ago. Her breast cancer had metastasized and she was in a lot of pain. My ex-husband was with her when she drank the cocktail. It was a painful story to hear — but it was well timed, because this happened shortly after I had started waking up wishing my life would end. I tried to imagine myself about to drink down a cocktail that would be guaranteed to end my life within a few hours. And I realized I would not be able to do it. I would want to put if off — at least to the next day. I do that Death Cocktail mind experiment quite often — and I still can not imagine myself drinking it.

This morning, I have been reading news articles about families facing a bleak and uncertain Christmas with the threat of eviction hanging over them. Many people have had no income since last March. Food banks are overwhelmed. Hospitals are overwhelmed. Suicide rates are up — and that is hardly surprising.

But I suspect a lot of us are waking up to a passing thought of wishing life could just end. Hopefully, for most of us, this remains nothing more than a passing thought. I do not think you even need to suffer from depression or anxiety to feel this way. It strikes me as a rather rational way to feel right now.

Fear of the unknown

Starting in the fall of 2017, I began waking up full of dread. I literally felt as though nothing good was ever going to happen in the world again — that we were all collectively doomed. That is when my morning routine, which has always been important to me anyway, became critical. I will spare you the “ball-by-ball” details of my routine. What matters about it is that each step of the routine did seem to have the effect of diminishing that dread just a little — so that by the time I was up and out and waiting for the bus, I was feeling relatively OK. And even if I was not, the sight of the bus coming around the corner comforted me some; and then I would take my seat and cue up a podcast — and by then I was generally feeling ready to face the day. I supplemented the comforting effect of the morning routine with a “Reminder” on my iPhone that sent me a “Please stop worrying!” notification at 6am, just as I was heading out to the bus stop. On the weekends I had a different version of this routine that started later. For some reason, the Sunday angst was the worst, but I cannot figure out why.

In the summer of 2019, I was prescribed some oral medication for atopic dermatitis. In addition to relieving itching, the medication also has a mild anti-anxiety effect — and I was rather amazed at how I felt the first morning after taking it. I got to know what it feels like to not be actively worrying about anything. I mentioned it to my doctor, and she suggested I might benefit from taking anti-depressants. But I did not want to go down that road without first exploring alternatives, so I agreed to a course of talk therapy. And that was a good move, because it ultimately led to my autism diagnosis in March of 2020. The week after my diagnosis, the governor of Washington State issued the stay-at-home order — and then the whole world started to unravel.

Oddly enough, I have been feeling a lot better since then. The atopic dermatitis has subsided to a level that can be managed without medication. And although I still wake up feeling fearful, it makes sense now. The world is in crisis. The pandemic has upended the world for just about everyone and there is no end in sight. The United States appears to be on the brink of a civil war and large parts of western states are on fire. And in many parts of the world, things are even more desperate.

I have never considered myself to be psychic, with the ability to see into the future. But I can not help wondering if I was having some subconscious premonition of what was to come to pass in the year 2020 — something that manifest as I was sleeping and lingered into my waking state. And now that the waiting is over, the fear is of something real that affects all of us, as opposed to a fear of the unknown, which I was carrying alone.