(Not) Indistinguishable From His Peers

Ever since Pete was about four years old, I have had people asking me if he is ever going to live on his own. You can imagine how jarring that was when he was four – having people ask me that as I was still trying to understand his disability and how to find the right supports for him. I could not even think that far into the future, and I am certain parents of typically developing four year-olds are also NOT thinking about their pre-schooler flying the coop. I shake my head thinking of this now, no longer hurt by the remarks as 19 years have gone by and yes, Pete still lives with me.

Having a disabled son has helped me to think outside of what the mainstream will have you believe. Life does not have to be one giant competition, and you can actually find a lot of happiness if you are able to embrace what you have, what IS, instead of what isn’t. I now have the luxury of a small modicum of wisdom that I did not possess at age 35, when those clueless people were asking me questions I could not possibly know the answers to. Because what I know now is that life with Pete, MY LIFE with Pete, is immeasurably better than life without Pete. I don’t need to (as organizations like Autism Speaks, ask me to do) imagine Pete or my life without autism. There is no Pete without autism. It is a huge part of who he is, and I absolutely unconditionally love him exactly as he is. There is no wishing for it to be different with Pete. Pete is Pete, and I honestly don’t know how I got so lucky to be his mom (I could write another essay in this same vein about Luca, but that is for another day).

A couple months ago I planned a beach day to Capitola with Miles and Pete. The three of us packed up and had a lovely day by the ocean; Pete and I enjoying the sun and surf, Miles in the shade reading a book. We went out to lunch where Pete ordered an enormous amount of food and also a milkshake. When he ordered the shake, he told the waitress, “you’re gonna love this one,” as if he could sense her delight in their interchange. He loves himself, and that makes me feel like maybe I did one thing right in this world. As we walked through downtown Capitola, looking into a couple of shops (especially the candy shop), I was thinking about how Miles is my partner, but Pete is also a partner of sorts. Because of his disability, he spends more time with me than his same-age peers probably do with their parents. Pete and I are walking through life together. As long as Pete is content with this setup, I am as well.

The world would make you feel that there is only one way, only one path for a person to take to be happy or successful. And only one way to parent, that our ultimate goal should be getting our kids out of our house and “independent.” I think this is a fine option, and I sure couldn’t wait to live on my own when I was a young person. I know plenty of Pete’s generation that are doing just that (such as my niece and a few nephews) and I am incredibly proud of them. It is hard to do in this economy. But I think we are making a big mistake in equating “independence” with happiness or success, and there are many ways to live your life that might not fit this mold.

Here is another thing I know now: people are not burdens. In most situations, people with children chose to have them. We don’t get to pick the neurology or abilities of our offspring (or a whole lot of other stuff!) Am I tired sometimes? Yes. But this has more to do with systems that are not in place to support a guy like Pete, such as reliable and safe public transportation, than my actual role in taking care of Pete. Because society expects everyone to do certain things on a very specific timeline, the community safety net that would make life easier does not exist. Parents or other caregivers are expected to do and be everything for their disabled loved ones. Families need more support. But I’m telling you, there is no world where Pete is a burden to me or the rest of his family. His presence is like a ray of sunshine, and we are all better for him being here.

I remember years and years ago when people were trying to get me to put Pete into ABA therapy (which if you don’t know, is one of the only therapies for autism that insurance will pay for, and it has been proven to be damaging to autistic children and adults), and these service providers promising me that with enough therapy, Pete would be indistinguishable from his peers. Why was I being sold this bill of goods? Why does my son have to be something he’s not? You know what else? Pete has disabled peers who adore him and who don’t care one bit about his differences from neurotypical people. Don’t our differences make us who we are?

I have spent my whole life feeling very much unlike almost everyone I have ever met. I have never felt like I fit in, and have spent an enormous amount of energy trying to be who I thought I was supposed to be. As I age and become more comfortable with who I am, I have realized that it’s highly probably that I, too, and autistic. I have been “masking” my whole life — learning from watching others and doing what I had to do to fit in. I have lived so long with so many fears about making mistakes and getting in trouble, appearing inept or without a clue… it is exhausting. I am starting to take this mask off, and it’s pretty scary but also such a huge relief.

A long time ago, when I was about 24, I had a job teaching theater to school-age kids. I was just learning how to do this kind of work, and Krista was helping me with my lessons and giving me ideas. I was having an issue with a kid in one of my classes, and it was clear that I needed to talk to this kid’s mom (as I recall, he was young and probably too young for the class). There was no way, absolutely NO WAY I could make this phone call. I mean, I could not do it, I can’t stress this enough, I could not pick up the phone, I could not form the words into sentences needed to speak to this person. The solution: Krista impersonated me and made the call. I was so relieved, and we laughed about it at the time. Looking back on this now, it seems obvious that I wasn’t just socially awkward. Because in some ways, I was actually doing great! I mean, I could stand up in front of 20 kids and teach a theater class, no problem. This mismatched skillset is one of the many behavior examples that are indicative of autism.

I thought of this phone call the other day, and felt a wave of gratitude for Krista. I mean, who does this for their friends? Krista never, ever made me feel like a burden, or like I was weird. She was just there to help me by doing a thing that was easy for her that she could plainly see was impossible for me at the time. I can actually make phone calls now! I do it all the time in my job, and I still don’t love it but it does not put me into a panic anymore.

Anyway, I am where I am because of the support and love of others. That’s what life is about. If Pete wants to live on his own someday, we will figure out how to make that happen for him. But as long as he’s happy here, here he will stay. It is not a race, there is no timeline that Pete must adhere to in order to be successful. And there is no timeline for you or for me, for that matter. I can do things with ease now that I could not do 25 years ago, and I’m sure there is more to come, more things that I will learn and maybe even master. So to answer that question, I don’t know if Pete will ever live on his own, but however that turns out, his value and worth remain exactly the same.

My Old Friend

Hello readers! I hope this finds you well. I am in a huge bummer of a depression right now that I am clawing my way out of. It is hard, and I’m tired. I hope you know if you are in a place like this, I salute you for getting out of bed each day and trying. I am so used to feeling this way that it’s just normal for me. I realized the other day how little joy I am getting out of life and I just though “eh, this is how it usually is.” And I think that’s probably not okay. I know if one of my friends said they were feeling like I do, I would encourage them to DO SOMETHING, but I tell you, doing something is like the hardest thing to do in this state. It literally feels almost impossible to do anything that is not mandatory, but I guess I need to reframe “mandatory” somehow. I can do my work, I can take care of my kids and make meals, I can pay the bills. But can I take a walk? Can I do yoga and other self-care? Sleeping sounds easier. This is the endless cycle I’ve been in for my entire adult life.

If you met me on the street, I would be happy to see you and you would have no idea I am suffering. I automatically mask this, and it takes no effort to do so. I have been doing this forever. The more I learn about the possibility that I have ADD/ASD, I realize that I’ve spent my whole life masking in some way. Maybe that’s why I’m so tired.

On Sunday my right hip was in agony. I have had hip and other joint pain for years. It comes and goes, and I have days with no pain as well. I have sought out medical advice and was told it was normal. Then, last July, I got angry and my doctor put in for me to get my hips x-rayed. Do you want to know how long it took me to go get my hips x-rayed? If you guessed nine months, you would be correct! Again, I do know the insanity of my choice here. It just felt like too much, on top of everything. I would not recommend this tactic to anyone. In any case, on Monday I had a revelation while sitting at my work desk: a voice said to me “don’t be like your dad.” My dad did not seek medical advice for a plethora of issues in his life, and for the most part refused to do the things that his doctors recommended after his Parkinson’s diagnosis. I wonder now if he was stuck like me. It looked more like refusal to admit he had a problem, but the end result was the same. So I texted my boss, got in my car, and went and got my hips x-rayed.

The results are in: I have mild arthritis in both hips. I was given some exercises to do, which I have no problem with but I was still thinking, don’t they want to see me? Does anyone want to talk to me about arthritis and what I should be doing, what changes I might make? I always feel like I have to figure out every health issue alone and I just get a canned email from different doctors instead of anything individual. So I complained to my doctor and she said to make an appointment, which I did. It’s not for several weeks but it’s on the calendar. So x-ray, exercises, upcoming appointment. I am trying.

Pete has recovered from his eye surgery and we have the last follow-up for this round tomorrow. The second surgery is scheduled for June 19. So many meds, so many eye drops — Pete and I feel proud we’ve gotten through this one. His resilience is inspirational.

I started taking a Pilates class at the Adult School. It’s hard but I liked it, I’ve only been once so far. It reminded me how much I enjoy feeling present in my body, like I used to feel when I was dancing a lot. With my body hurting most of the time, it’s become more difficult to have those moments, but I think the more I do, the more I will feel better (I hope) so if I can get myself over this phase, maybe I can get into a better routine of the kind of exercise that helps me feel this way. I hope. All I can do is try and see.

Like most people, I often just wonder what I’m here for and if I am accomplishing anything. I wonder why I have to struggle so much, while also acknowledging that I am lucky in a lot of ways and I’m grateful for that. I feel so flat and empty, as if there is nothing to look forward to. I know that’s not true, but I don’t know yet how to get back into a headspace that feels joyful or hopeful. I tend to isolate when I’m like this, and it doesn’t help at all. But it’s comfortable and easy, and I crave those two feelings right now.

I was cleaning up my desk this morning and came across a scrap paper tucked in a spiral notebook. It reads:

community – all ages – movement – natural is even better – whole foods – superfoods – plant based – purpose – joy

What was I getting at? A wish list or something? I’m glad I wrote it down even if I don’t completely understand it. I think I (we, all of us) need to keep writing and expressing ouselves in one way or another and keep trying even when it’s hard. I do think it’s worth it, worth the effort even though at times it feels impossible. I will just keep on trying.

I Can’t Shield You From This

Once upon a time 23 or so years ago I gave birth via vaccum suction while fighting pre-eclampsia to a wonderful baby boy named Pete. A few hours after his birth, I was notified that he was spitting up bile and an x-ray showed that he had a mal-rotated bowel. He would need surgery, which was scheduled for the following day. I met the surgeon and my first task as a mom was to sign a waiver saying I wouldn’t sue the hospital if Pete died in surgery.

The surgery went well and I got to take my baby home 12 days later. Being a mom changes you, and having a start like that changed me in ways I did not understand until years later. I believe this experience, compounded with the fact that I raised the kids on my own for about 15 years caused me to be enmeshed in ways that were not always healthy for me. I felt for so long that I had to shield them from things (their dad, the rejection from that whole side of the family) and absorb the pain so they would not have to. I wasn’t trying to be co-dependent, I simply didn’t know what else to do.

We learned in the Fall of last year that Pete has keratoconus, a condition where the cornea in both of his eyes is not dome-shaped; instead, they are crumpled and this causes vision loss. He needs a procedure in each eye to stop the progression keratoconus. I honestly can’t remember the name of the procedure and even though I sit before a computer where I could look it up, I am avoiding it because too much information in cases like this increase my anxiety. What I know is that it’s the best procedure for Pete and we have found a doctor who will perform it tomorrow, on Pete’s right eye.

This has been pretty stressful for me, the waiting. The procedure itself is not too terribly painful (the doctor said) but also not fun I’m sure. The recovery is pretty painful, especially the first day. They don’t do both eyes together because it’s too painful. Just writing that down makes me cry because the thought of Pete being in pain is almost unbearable for me. I know he’s an adult and he’s brave and resilient. And I know this needs to happen. I know. But here I am, less than 24 hours before the actual procedure and I am slowly coming undone. I have worked so hard these past months to keep the anxiety in check, to not read on the internet things that I have no control over, to self-talk myself out of “worst case scenario” and into “why can’t it be best case scenario?” I am trying with everything I have to put this where it belongs and to not catastrophize this.

I have had a hard time focusing on heavy thinking tasks at work for weeks now. I am unable to plan for vacations this summer because I don’t know how the recovery will go or when he they will want to schedule the other eye for the same procedure. I’m stuck. This is a common theme for me when something big or important is coming up – it’s hard for me to do much of anything until I have an understanding about the big important thing. So maybe by Friday I’ll have a little relief from this part of the anxiety. At least some part of this will be a known entity at that time.

I keep telling myself I’ve done other hard things and made it through. I don’t want to add to Pete’s pain or worry with my own spilling over on to him, so I am going to keep my stuff in check when I’m around him (which I’ve been doing since I stifled my need to cry on the way home from the doctor months ago). Today we had to start putting drops in his eye and that was not easy. We have weeks of drops coming up. I told him we were going to both get good at it.

I know in the grand scheme this is a bump. I know many people whose kids have been through so much worse, and I am always counting my blessings that my kids have both been pretty healthy and we have not had any big issues to deal with until this one, aside from all our mental health challenges. I am giving myself pep talks. But deep down in the very cells of my body I am afraid. Unknown things are almost always scary for me, anxiety producing. I am ready to be on the other side of this.

Pete will have to miss work for about a week. Next week is his birthday, and we are hopeful that he’ll feel recovered enough by then for a small celebration. Please keep a good thought for “best case scenario” for my Pete tomorrow. xo

Winter Blues or How to Survive in These Modern Times

Friday was not a great day. It felt almost impossible to do work even though I do not hate my job and some of the work I do is actually very satisfying. I felt an overwhelming urge to do nothing, but that is not an option most days. Sometimes I wake up in the morning and I can’t believe I have to keep doing this for the next 15 years or so. You get to a certain age and maybe you start thinking, “is this it? Is this what I’m here for?” Sometimes I am in a phase where I am trying to get stuff done so I can then sit and do nothing. I feel lonely but irritable, and I forget to look forward to things. I want to sleep.

January was a doozy. Miles got COVID the first Saturday of January and then was out for a week. We were so lucky that nobody else got it in the house. He went back to work a week later, only to get some sort of residual sickness that also lasted for a week and also required me to sleep on the couch. It is hard to do all my work and all the things Miles does while also taking care of him. There was no yoga or visits with friends or anything besides the survival stuff. Trust me: I’m grateful for so many reasons, and I don’t mean at all to sound whiny. It was just hard. The puzzle pieces of our lives fit just so, and when something is off it’s REALLY hard for me.

Things are back to normal. I have actually crossed a few things off my 24 List. I want to approach the year with optimism and I want to transfer that feeling of positivity on to my kids and others to whom I come in contact. I feel like I’m failing at mainfesting good feelings. I feel so blah. Here is my list:

1. Get a new dentist, make appointments for me and the kids and go. [This feels like torture. My beloved Tina is our dentist and has been for 20 years. But driving to Los Gatos on a work day is not something I can do anymore].
2. Get hips x-rayed.
3. Start doing weight training.
4. Take time to look after myself better: ie doing my hair, night time routine, etc.
5. Make recipes from new tagine cookbook.
6. Transition to plant-based diet. [I am not a vegan. I just have reduced non-plant protiens a lot.]
7. Walk most days.
8. Invest time in meal prep.
9. Visit Chris in Denver.
10. Plan a getaway with Christy.
11. Find/take a dance class.
12. Find a new hairdresser.
13. Read more.
14. Use my yarn stash.
15. Spend quality time with each kid individually and also together.
16. Learn how to REALLY use PowerPoint.
17. Plan couples overnight with Samboys.
18. Do yoga regularly (4x per week).
19. Go bowling regularly.
20. Connect better with far away friends.
21. Be more engaged in board position at Sunflower Hill.
22. Drink more water.
23. Be aware of movies and go to some.
24. See more live performances: music, musicals, plays, dance.

I’ve made some progress on some of the ones not crossed off yet, but not enough for me to feel like I’m in a new groove or habit yet.

I’ve done some reflecting and I feel like maybe part of what I’m going through has to do with the many people in my circle that are struggling plus the struggles of the world. It’s a lot to take. I try to have a happy balance between being educated and knowing too much; I can’t click on every sad story or I’m gonna lose it, you know? Sometimes just managing what is in front of me is enough. It’s not that I don’t care, I just render myself useless if I am taking on the news of the world every day.

I had a talk with Luca today (she noticed I was off) and I heard myself say twice, “I’m just so angry.” I didn’t realize that was currently brewing, so I’ll need to investigate that. I also realized in that conversation that I am living in a constant state of upset over real estate costs where I live, even though we are doing fine month-to-month. Everyone in my family is getting more used to the idea that we will have to move, someday. I don’t know when. It was going to be this summer, but now that I have Pete’s two eye procedures coming up (did I tell you? He has keratoconus and needs two procedures, one is scheduled for March 20) I feel paralyzed to do ANYTHING. That example is a perfect one to illustrate a big issue for me — I can only do one thing at a time. But there is always something and I will have to decide to take the leap at some point. I cannot wait for everything to be in alignment because that will not ever happen.

I thought writing stuff down might help me process. I am not sure yet if it worked, but if you read this, I thank you nonetheless. Life is hard. If you are struggling, I’m right there with you and here to lend an ear if you need one.

Creature Comforts

Well we avoided COVID in the Dito-Goodrich household for almost 4 years but Miles tested positive last Saturday. He has what is considered a mild case, and I feel like we are super lucky to have avoided it for so long. I am afraid to see what a not-so-mild case looks like because he’s pretty miserable with a cough, headache, and brain fog. The kids and I are symptom-free and testing negative and Miles has been isolating in our bedroom since his positive test.

This has turned our world upside down, and no, it is not lost on me what others have gone through with serious illness related to COVID as well as multiple instances of having to deal with it. It sucks a lot. I have been sleeping on the couch. I struggle to attain good rest even in the best of times in my own cozy bed, so this lack of comfort is torturing me. It’s been 4 nights and I am just chronically unrested now with my own insomnia and stress-related brain fog. Of course work is super busy and complicated with problems to solve right now as well.

In an unfortunate turn of events, I am also dealing with a flat (ish) tire which I have not been able to resolve (my flat-tire resolver person is sick in bed, I will get it to the shop eventually) and so I’ve been driving Miles’ car, for which I am grateful but it also throws me off my game, you know? Wrong bed, wrong car, all my routines are messed up. I’m sharing a bathroom with the kids and sneaking into my room periodically (all masked up, Miles masked too) to get things I need. I have realized how much I rely on the continuity of my routines to ground me and help deal with my natural tendancy toward anxiety. It’s not good right now. The thought of maybe contracting COVID is not helping my stress either. I’m living in a sea of grey areas right now and I am black-and-white person. It’s a challenge, or maybe an opportunity to work on this in myself. I’m trying.

I have found that I’m currently obsessed with washing dishes. I’m not obsessed because of the desire to clean germs. At this point, I feel confident that my thorough hand washing or dishwasher washing will remove any COVID-y germs from the plates and utensils. I just want the kitchen to be in order at all times because it’s one small thing I have control over. At least the dishes are clean. At least the countertops are shiny.

Also, it’s my mom’s birthday today and that is always so super sad for me. I haven’t had a good cry over it yet (I will) because I’m literally too busy to cry. I want to lie in the fetal position with my dog, Freddie, in my bed with the covers over my head and take a nap. I want to think of my mom and have a cry and then actually sit in the same room with Miles and talk and laugh.

I know the mild COVID and the flat (ish) tire and whatever minor inconveniences I’m experiencing currently can be classified as “bummer” and by no means serious issues. I know lumping them all into the “see, everything is wrong” bucket won’t do me any good, and I’m actively working against my natural inclination to do just that. Yesterday morning, after sleeping terribly and feeling overwhelmed before I got out of bed (couch), my computer crashed and then I found the flat tire within about 10 minutes of each other. I fought against deciding a black cloud is following me. I know that it’s random and nobody is out to get me. I have to say it out loud to believe it.

Today I got a problem solved at work that’s been vexing me since the beginning of the month. That felt good. Today is my mom’s birthday, which makes me sad but I’m also trying to make space for myself to just remember her and appreciate what she gave to me. Pete remarked on our way to his program this morning when he saw a full rainbow in the sky: “Maybe that’s a sign from Grandma Marilyn.” It makes my heart squeeze a bit when he calls her that as he never had the opportunity to say it to her directly. There is no resolving that, and although it’s way bigger than a bummer, it just is. She is not here and has not been here for 24 years.

Before I close, I will share something wonderful. Two of my friends texted me today with this image, which they found in their mailboxes today:

That’s my Pete!

That’s the cover to the newest catalog for our Adult School in Castro Valley. Those are all the current interns, and there’s my handsome son on the cover! I can’t wait to find it in my own mailbox soon.

I Wish You Well

Do you do this? Do you see something that brings back a memory and then obsess about it for a long, long time? Does it hurt you, shockingly and acutely? This happens to me, and I realized this is why I tend to avoid things from the past. I have written about this before — about avoiding places in San Francisco for YEARS and then coming to terms with that, and also about avoiding music because it conjured too many memories I was ill-equipped to handle. I have also written about how as a younger person, I envisioned life as a straight line, neat and tidy and controlled. I felt like I was a failure because my life was so jumbled and messy. I know better now, but I do think that part of why I clung to that was because of the deep and relentless pain I experience when looking back at my perceived mistakes or lost relationships.

There is this car parked on a road I pass by daily when taking Pete to his internship. It is the exact replica of the car Adria drove when I last knew her. Adria is my ex-sister-in-law and former member of my family and best friend group. When I left her brother, she never spoke to me again. Like, never, not one word. She saw the kids a few times at her parents’ house, but never fully reengaged with them either. It was like we no longer existed to her. Initially, I called her and emailed her, but I soon realized it was not going to have an effect. Years later, when Paul died, my former brother-in-law and I met and I asked him directly about Adria. He said she was being loyal to Paul. I did not understand that as I wasn’t the one who cheated and abused. I HAD to leave. But that was how she responded to what had happened, and I guess on some level I understand.

Is it crazy that seeing a car like hers unravels me, 17 years later? I try to look right at it so I can desensitize myself, like I did with the places in San Francisco and the music. But I guess this is just how I am; I can’t look at that car and not think of her, just like I can’t listen to some songs and not think about certain times. I wonder if other people feel like a raw nerve all the time like I do. Always trying to avoid these landmines as I move through life.

Upon further reflection, I think Adria did what she had to do to survive. Although the divorce was mine and Paul’s, it had a ripple through the family and I’m sure it caused her pain, too. We all had this idea of what the future would hold, and then it was gone. As a person with challenges when it comes to the subleties in life, I can relate to Adria’s choice to erase me and the kids from her world. Maybe it just hurt too much. Maybe when I see the replica car, I will try to forgive her.

I had a roommate in college, Paula (shoutout to Paula! I love Paula!) who used to say, “goodbye, I wish you well” when she was moving on from somebody or trying to let go of somebody. She didn’t say this to the person directly, rather she said it like a mantra to herself. I remember not fully understanding this as I was clinging to all the people for dear life at the time. I could not fathom being able to let go AND wish them well! If they left, something had gone awry and I did not wish them well, I was mad and would be mad forever. Also, I did not want them to go and leave me and prove to me that I was unlovable. This was back when I still thought life was going to be linear and neat. I use Paula’s mantra now all the time. Some people and situations are not forever, and that is okay. I am not unlovable, but I am also not to everyone’s liking. Sometimes people leave or let me down, and I am certain there are folks out there that would say the same about me. But I do wish them well, now. All of them, even Adria.

Middle Age is Hard

Hello lovely readers. It’s been a while. I have found myself recently in a state of overwhelm and I’m wondering if others relate. Nothing is bad, everything is fine. But it’s also not somehow and I’m struggling to find a path to solutions to what’s ailing me.

The fall semester has begun over here and the kids are doing just fine. Luca is back to school in Berkeley and enjoying her classes. Pete is in the midst of his internship through the adult school. He enjoys it a lot and comes home happy. I am just exhausted, though. Neither of my darling children drive, so I am driving them around daily while working my FT job. It has been suggested to me that I’m doing too much, but I don’t know what else to do. Pete has decided that at least for now, driving is not something he feels comfortable doing. Luca has some anxiety around driving that she/we are working through. I am reluctant to push too hard as I have a lot of empathy for the anxiety, but when is it time for me to push her out of the nest? I don’t know the answer, and I know it’s an individual decision for me/Luca and not a general one.

Sometimes I think of all the stuff I just figured out on my own as a young person with no support from anywhere and I am amazed. Different times, I know. Am I wrong for not wanting my child to suffer in some of the ways I have suffered, though? I think if I’d had more guidance in my earlier years, maybe I’d not be so anxious now? How can you know you’re making the right decisions in parenting?

What I know is I’m so tired of planning, carrying around information about others’ schedules in my brain, making sure people have lunches and dinners and that the dogs have seen the vet. I’m just TIRED. People help me when I ask, mostly enthusiastically. I am grateful. But what I wish is that somone, anyone would see me and step in from time to time. That every now and then, someone would say “I’ll make dinner.” Have I spoiled them all so much that they don’t even consider it? Sometimes I’m am literally too tired to speak. Like it takes too much energy, energy I don’t have, to ask for help so I empty the dishwasher myself or whatever. That’s how tired I am.

Krista and I (and my sisters and I, constantly) have discussed this at length. We want to take responsibility for our own happiness and our own trajectory in life. We are acutely aware that the clock keeps on ticking, as evidenced by the rapid growing-up of our kids and the fact that people in our own age-range have experienced things like heart attacks and serious struggles with incurable dieseases. We know that each day is not promised, and that we better get on with things.

The truth is I don’t know anyone who is not struggling in some way. We are all so aware of how things that happened in childhood or early adulthood are now negatively impacting the way we walk through life. One person I know went through a round of ketamine therapy, which was super impactful but also really painful and difficult. Other friends are tackling alcohol use, trying to eat better for health (not to adhere to stupid beauty standards), and trying to forgive and LET GO of shit that no longer serves them. I know zero people without some kind of baggage that haunts them.

Someone suggested to me that I finally have the space to deal with some of my demons because I’m not currently struggling financially, which was a situation I found myself in for most of my adult life. She is right — I have the privilege finally to have some space to just think. What I am learning both astounds and relieves me, and I guess makes me say “well, obviously.” I have suggested on this blog a couple of times that I think I, like both of my children, may be neurodivergent. The more I read about this and think about my past, and see my past through the lens of neurodiversity, the more I say, “well, obviously.” I had always thought that the autism came from Paul’s side. I don’t say that as a put-down, for the record. Just that I know that spectrumy stuff is genetic, and it seemed clear that Grandpa Pete was on the spectrum. Paul suggested that he, himself was also on the spectrum. So I guess I left it at that. But in the subsequent years, I can see that other members of my extended family that are not Ditos are on the spectrum, too, so it makes sense the there is a genetic thread from my family of origin as well.

I have always thought that I am just a very flawed person. That I have been unable to keep up with things that I see other people doing. My house has never been as organized and clean as my sisters’ houses, for example. My car is dirty most of the time. I am often overwhelmed and seek solitude frequently. I avoid doing tasks because of anxiety. I procrastinate like nobody’s business. Still, I have managed to oversee a household, mostly on my own, for years and years. My kids have always had the things they needed and most of the time the things they wanted. We always have clean laundry and food on the table. I am also organzied in my own way, having developed systems to keep important documents safe. We see the dentist and eye doctor regularly and have all our vaccinations. I think because of all this, I did not consider that I could have ADD or some other difference in my neurology.

I have a very black-and-white way of thinking that is really hard to circumvent. I have very few acquaintances and my friends are a super small, tight circle. It’s hard for me to maintain relationships with people who don’t feel 100% safe to me. I tend to catastrophize everything and do “worst case scenario” thinking to assure myself that even if the most terrible outcome happens, I can handle it. I live with an incredible amount of anxiety, but feel so lucky that I am surrounded by people and family members who accept me and love me and help me. I hope that my experience with all this has helped them, too.

I used to hate meeting people in a public place because I was convinced they would forget. Not forget we had a meeting set, but forget that I existed. That was my fear, that a friend or boyfriend or family member would forget that I was alive. Since I was a small child I felt very different from other people. I never shared those feelings with anyone because to talk about it made me feel even more defective. It was a secret I carried with me for a long, long time. I can remember being around 5 years old and just feeling like I could see things that other people could not, like people being cruel to each other. I could feel people’s feelings and that often caused me pain. I was deemed shy and “too sensitive.” But despite all this, or maybe BECAUSE of all this, I never had a particularly hard time making friends. Girl friends, that is. I was afraid of boys and men. I have always had friends, further pushing my thoughts away from having some sort of spectrum issue. Friendship was relatively easy.

Luca says that neurodivergent people just find each other. Almost all her friends are on the spectrum. Which leads me to wonder: is that one reason Paul and I found each other? What about other friends I have had or have now?

I think I am finally at a place where I am no longer repressing my true self, and this is part of being the age that I am. I am trying to be nicer to myself for my shortcomings, and consider that maybe some of it is not my fault. Maybe I am doing the best I can with what I have to work with, and that having a dirty car is less important that working my way out of intrusive thoughts. Maybe I can decide how to use my limited energy for things that actually matter and let the rest go. I am not suggesting a free pass; I know my black-and-white thinking has most certainly hurt some people. I’m thinking it through and asking forgiveness and trying to adjust my possibilities.

Why It’s So Hard to Accept My Own Body

I have spent a lot of time hating myself. So much time. I am finally in a place of deeper understanding of the blocks and barriers and societal influence and family influence on my view of my mental health. I’ve come to realize in the past year that I am probably neurodivergent in some way (my experience bears a lot, but not all of the symptoms of ADD and I REALLY relate to accounts written by women who get an autism diagnosis later in life) and this would make a lot of sense as I have two neurodivergent children. I have come a long way in forgiving myself for past “failures” (they were not failures, I was doing my best) and being more understanding and gentle with myself. I know more now. I am grateful.

Why then can I NOT let go of the insane and impossible expectations I have for MYSELF when it comes to how my body looks? Why? I know better, I really do, but a part of my brain will not allow me to have joy in my own body. I still wish I looked like this:

This is Isabella Boylston. She is a Principal Dancer at ABT. I guess I also want to dance like her, but that is never going to happen either. I am no longer a teenager or a person in her early 20’s even. I am a full grown woman in menopause. WHY do I lament that I don’t look like this, STILL???

I fantasize about what it’s like to walk around the earth in THAT body. What that feels like — I imagine it feels awesome not having thick thighs or giant boobs, being able to wear any clothes I want without feeling exposed. Then I imagine how my life would have been different if I lived in that body. I make all sorts of things up. It makes me angry at the body I do have and my ancestors for giving me these genes. Add being old(er) in the mix and it’s a downward spiral of shame. Why do I do this? There is no payoff I can find. How can I stop?

I see articles now about how Millennial women were shamed into thinking they were fat when they were just normal women in normal bodies, and I am here for it. When these women were tweens and teens, I was in my early 20’s and also still incredibly susceptible to the sway of media (apparently this is still true at age 54). Us GenXers were told this was “curvy” in the late 80’s/early 90’s:

photo_guy_marineau_france_paris thierry_mugler_wf_1990 fait_a_paris_le_15_mars_1990

And then in the later 90’s/early 2000’s, this was the standard:

My breasts haven’t been that small since I was like 9. It’s not Kate Moss’ fault or Cindy Crawford’s either. Interestingly, both of their daughters have followed in their footsteps and gone on to become runway models themselves, which makes me think things have not changed very much in terms of what designers are looking for in models in general. I’m not a model, I’m just a person who wants to enjoy my one and only life in this, my one and only body. I’m struggling.

Despite all the podcasts I’ve listened to and the blogs and influencers I’ve read and followed on the subject of body positivity, fat accpetance, and body neutrality, I still have this block when it comes to my own body. I still see my imperfections as moral failings. I don’t view anybody else in the world with the same negativity that I view myself with. Then I feel embarrassed that I’m still grappling with this at my age, and then I am in a full-blown shame spiral.

You know what shuts down the mean voice in my head temporarily? Talking to my daughter about her experience as a woman. As a trans lesbian, she is completely unconcerned with the male gaze idea that I have had drilled into my head since I was a child. Luca is not a “typical” woman in the sense of adhering to societal expectations besides that she is thin. She is 6′ tall. She thinks she’s beautiful and she IS. She has enough confidence in herself to know that she is fine just as she is and that the right people will love her no matter what. She inspires me and helps me to think about female beauty in new and expansive ways.

I think I was taught to hate myself into submission — that if I hate myself enough, I will change and be what I am supposed to be. I think this has never worked for anybody; I can’t shame myself into being skinny or beautiful in the way that society or the media tell me I should be.

Pete and I went to Capitola last weekend for a beach day. I was recalling another beach trip I took when I was a senior in high school to that same beach. I was there with friends from work, one friend my same age and a few others several years older. One of the older women told us how to use the beach day as an opportunity to lose weight. She only drank water and ate fruit (I think grapes) while at the beach. Then she went home, showered, and hit the club and drank more water and danced a lot to sweat as much as possible. She said she could lose 5 lbs in one day doing this. I remember noting it for later use, and still to this day I remember feeling embarrassed to be myself, ashamed to live in the body I was living in at the time. I felt like I was from another planet, but I was really good at faking it. When I look at photos of myself from back then, there is absolutely nothing at all visibly abnormal about me. I was probably a size 7 as well, which I considered to be way too large.

How many more moments of my life will I waste doing this? I want the answer to be ZERO. I just simply don’t know yet how to release this.

54

I’ve been going through a thing. I don’t even really know what it is exactly or why it’s happening. I am experiencing feelings of emotional numbness and have had 2 panic attacks during the night in the past week. My conscious brain feels fine — like I am not feeling super stressed or anything. But I am clearly in the midst of some sort of depressive episode. Here are some ideas of what might be going on…

Pete was set to attend a new special needs camp this week and it got cancelled due to COVID at the last minute. He was going to be gone for 5 days. He handled the disappointment like a pro, utilizing coping mechanisms he’s been learning for years, and I am really proud of him. But I am sad, too, and just frustrated first for Pete and then for me; I spent HOURS (like 4, at least) filling out paperwork and chasing his doctor, writing to Kaiser for the medical clearances and Rx approvals, doing so much to get him qualified to go. We also visited the campus a few weeks ago. So the let down is big and I feel like this plan I had for Pete to have an awesome summer is gone, just like that. He has another, shorter camp scheduled next month, and hopefully this one won’t also get cancelled. ALSO: camps are supposed to be my respite. Please know that I love being Pete’s mom and I miss him terribly when he’s gone, but it’s also nice to have a break from caretaking. He probably enjoys the break from me, too.

I’ve been feeling not 100% physically, either, which I am learning is pretty typical for middle-aged people like me. My hip flexors were causing me so much pain a few weeks ago it was literally difficult to just walk sometimes. Then I get in a cycle of moving LESS because of the pain and I think that just exacerbates my problems. In addition, I had a diverticulitis flare up, which I haven’t had in 6+ months. I realized the flare coincided exactly with when I was first diagnosed with this issue a year ago, which is so on brand for me to have the cellular/muscle memory to suffer the same problem a year later. I got past the flare up and started doing a short yoga practice every day and hips feel so much better. So much. So I am really motivated right now to keep up with the yoga and I’m grateful for this healthy way to manage my pain.

I’m about to turn 54 (tomorrow) and I think that perhaps the enormity of being older than my mom was, officially, is causing me some sort of a THING inside of me that I’m not even fully conscious of. Last year I turned 53 while being hospitalized for c diff. I thought that was the big birthday, the one where I was going to feel funny for being the same age as my mom when she died, but maybe I was wrong. Maybe this is the one. I don’t know. I only know I feel not fully like myself right now. I’m not excited at all about my birthday, which I usually am. I am doing all the right things to take care of myself — exercise, yoga, eating well, seeing friends, doing hobbies I enjoy. But it’s not helping. On the bright side, I am able to do all those things, so I’m not so down that I can’t function. I keep telling myself it’s going to pass. I hope I’m right.

I’m also wondering if my funk has something to do with my trip to Prague. The trip itself was super, but I do think it disrupted some “truths” I had been holding forever, and has made me have to rethink a bunch of things that I have held on to for my whole life. I’m questioning things I thought I knew about myself, which is both exciting and a bit terrifying. I hope I can report this fog has lifted soon.

Goodbye for now, Prague

I’m sitting in the airport awaiting my flight to Frankfurt, then on to SFO and home. It’s been a great week — difficult in some ways but also a week that I think taught me a bunch of things about myself personally as well as professionally. A week of growth!

This is an amazing place. At first, it almost felt like a utopia. Clean and efficient public transit, super safe, nobody harassing anyone on the street, yet with access to all the things that I enjoy in an urban setting such as beautiful architecture, cultural points of interest, and great restaurants. Also the cost of living here is so much easier compared to where I live. Most people speak English here as well, which just made things less complicated for me.

I have spent a lot of time lamenting that I cannot afford to purchase a home in the Bay Area. I also felt like there was no other place in the country (and I wasn’t thinking globally) that we could live and also be happy. I thought myself into being stuck with no options. After my recent trip to Santa Fe and even Chico, CA, I am realizing that there ARE other places that could suit me and maybe even give me a better lifestyle that what I experience in Castro Valley. Change is hard. It just is, but I am starting to think I’m brave enough to face it. I have thought of moving to another country when I was afraid of 45 getting a second term. Travelling to Prague has reignited that idea and it’s exciting to consider.

I know I’m a full grown adult, but coming to Prague alone was really scary for me, but I DID IT and I enjoyed it and I managed every challenge I faced. I sort of decided I wasn’t going to be embarrassed for asking questions or making mistakes or anything. That I was just going to be ME, and that included having to ask a LOT of questions to my much younger co-workers (kind of how Luca is always helping me with technology) and I just thought SO WHAT. So what if they think I’m a dork? Who cares? I didn’t particularly feel like they were bothered by me anyway, but still, so what? I was constantly self-talking myself internally (and sometimes out loud, lol) and reassuring myself that I could do things and it was all going to be fine.

I think we are all probably smarter and more capable than we give ourselves credit for. If I could figure out how to financially support myself and two kids on my own, I could surely figure out which train to take or where my gate is in a foreign airport. Right? Since the pandemic, I have been pretty isolated like a lot of us and this is exacerbated by the fact that I work from home. I have never gotten reacclimated into society since the closures. But this trip helped, and I’m staring to feel like part of the world again. I am reminded that most people are nice and helpful, and that even though I’m shy, I can ask for help. I am not helpless.

I did not do much sight-seeing at all (and for the record, my boss was like “you should have planned a longer trip so you could have had some fun.” Actually the CEO said this to me as well. Next time.) I worked really long hours and spent my time compiling information and solving problems. Hard but satisfying work. I was on a call with my boss yesterday and he gave me a fantastic compliment: he said that I clearly have an ability to make people feel safe and heard. This made me feel great. This trip was a success, even if I never got to the Prague Castle (everyone asked me daily if I had gotten there yet!)

The jobs I have had were never really my choice. I took my teaching role at OLG because I needed a job in short order when I left my marriage. I was interested in teaching (dance) and that job allowed me to work part-time at first with hours that allowed me to be with my kids a lot. That’s not to say I didn’t enjoy it — I did come to love it until I didn’t anymore. My HR job was just a fluke as well initially. I joined my company as a contractor thanks to a friend who worked there and they simply had no HR. They told me after a couple months that they could hire me full time if I would take on the HR role. I had no other big prospects (it’s hard to change careers when you’re 49) so I said yes. Almost everything I learned was from reading and trial-and-error. There was no one to train me. I don’t love my job, but I like it, and the parts where I help people I like a lot. I sometimes lament that I have often let life happen to me instead of driving my future (and I also try to be gentle with myself because this is complex, with self-image and mental health struggles preventing my ability to take action from a pretty young age), but I am proud of what I have accomplished professionally. The warm reception from my Czech co-workers helped me to feel like I’m doing something right, even from very far away.

I think I will be back here before too long. I need to bring Luca with me! And Miles, but I know that might be tough with his work schedule. There is an art school here that Luca could go to and it’s not even that expensive. There are options outside of my small world in the Bay Area, and it’s time to consider them.

Flight to Frankfurt has been delayed so send all the good vibes that I make my connection to SFO. Nashledanou for now!