Thank you for your words of comfort as I mourn Hana. It helps. I am still so very sad and overwhelmed. But it is getting a bit more manageable bit by bit. This is so hard.
The start of this new year is a lot to face in such a state. I truly don’t want to plan anything. I guess it is a bit like depression, though not as hopeless, just overwhelmed by feelings. Tara is helping me by gently guiding me through organizing my schedule for next week, and letting me leave a lot “to be determined” because I can’t imagine doing my usual activities right now. I am feeling like I need more time to tend to myself before getting back to my routine.
I hope you all are having a gentle start to the year. It is strange to start the year in winter. It is not a time for renewal, but for rest and quiet germination. It is jarring to put resolutions and big plans into abrupt motion in January. So that is something I hope you remember amid the pressure to be a “new year, new you” this month.
I am heartbroken. We had to put our sweet Hana down over the weekend. It turns out her recent struggles were likely all from spleen cancer. But we only learned that when she was dying at the emergency vet. Our other vet didn’t catch it when we brought her in two weeks ago. So it was a very sudden shock to learn that there was nothing we could do and that her body was already shutting down due to internal bleeding from the tumor.
I was so numb and shaking during this ordeal. It was the middle of the night when my mom heard her in distress and found her disoriented and unable to stand. And I had been deep asleep after a dysregulated day. So this felt like a nightmare.
I am so grateful I could be there to be part of the decision and to say goodbye. I was so in distress, but I would have always regretted it if I hadn’t been there. My heart felt so shattered. I am still shattered.
I have been going nuts with compulsions since then. It is my body’s response to the overwhelming feelings. It is too hard to process them but my body feels like it must do something. I am so lost in my grief.
I haven’t really been able to say much until today. I requested space and told Tara I wasn’t ready to talk about it. I needed to process it on my own. But it has been so hard to do so. I finally feel a bit less in shock, so I am trying to express my feelings now to see if that helps.
She was a special soul. It was such a gift to have her in our lives. I adored her so much. I will always regret that my dysregulation stressed her out, including on her last day. I hate that. I hate that I couldn’t fully show her what she meant to me. I hate that she ever was scared of me. Just another way my disability takes from my life.
But she did show me such love. She loved walking with me on the beach. She loved hiking with me. She loved cheekily stealing my spot on the couch. She loved just being around me.
I am so not sure how to handle this loss. I am so deeply sad. It hurts.
I am glad to finally present an All Our Brave Hearts episode, after an unplanned hiatus. This episode is about friendship. This topic is a long-time favorite of mine, as I am a naturally friendly guy who longed for friendships but couldn’t communicate that for most of my life. Making friends after gaining communication has been such a joy.
I also find that I have insights into all types of friendships, just from observing the people around me. I am such a nosy guy! But I am fascinated by how people interact. So I have some advice to share on that!
Please listen or read on Substack or wherever you get your podcasts! I hope you can relate to what we talk about. And have a wonderful Christmas if you celebrate.
I am so feeling a bit fatigued these days, but I am very calm. I think my body wants to hibernate. But I am still enjoying these pre-holiday days. I love the festive feeling this time of year.
I had the nicest day with Tara last week. We took Hana to the vet, which isn’t that nice but felt good to do it. Then we went ice skating at the big mall in La Jolla, and I haven’t gone ice skating in years but I quickly remembered how to. I loved it! I skated for an hour straight. It felt so freeing and exhilarating! I love moving through space. It is like meditation. Christmas music was playing and there were so many nice decorations around the rink.
Then we wandered around the mall, soaking up the Christmas décor and idly rummaging through shops here and there. I was very calm and regulated, and it felt great to be able to spend hours hanging out without needing to go home to rest. Then we had delicious ramen, lazed by an outdoor fire pit, and went home. I loved it all.
And this weekend, I met up with several of my fellow “old man” speller friends. By “old” I mean thirties and up. We had a lovely holiday hangout at a cute coffeeshop with a nice outdoor area. It was so wonderful to spend time together.
I am enjoying these kinds of festive days. This year has been a bit tough to fully grasp, with a lot of changes and challenges and a slower pace of producing work. I am appreciating the space to relax and ponder and scheme for next year. I have some great plans!
I am getting in the holiday spirit! We have a nice small tree, plus two big scraggly potted pines out front, and all three are decorated. I love it. This house is too small for a big tree inside, but I love our small tree.
In less cheery news, something is wrong with our little dog Hana. She is almost 14 years old, but had been doing pretty well apart from slowing down a bit. But lately, she has been having a tough time breathing at times, and has started trembling in fits. We will bring her to the vet in two days. She can still eat and wag her tail and go around the house, but any exertion apparently triggers her breathing problem.
I am so worried. She is so precious to me. I adore her like a little sister. She has such a special spark, and is so attuned to us humans. She is truly a special being. I am so sad to see her in discomfort. This is so hard.
I had already been feeling sadness for our bigger dog Houdini. He is almost 16 years old, and it is clear that this will be his last Christmas. He is losing muscle, becoming more incontinent, and can’t go for walks anymore. But he has an indomitable spirit of goofy joy. He now wears grippy socks and a plaid sweater, and looks very much like an old man. He is hanging on and I am surprised at how he keeps going.
I don’t feel as much adoration for him, as he is kind of annoying and so full of energy that it stresses me out a bit. But I love him! He won me over with his happy-go-lucky spirit. And he is pretty sweet, even if he tramples things and knocks things over regularly.
I was never able to express my love for the family dogs before spelling. My body language could only show my discomfort with the sensory overload that dogs tend to be. But I always loved them. That was so painful to not be able to express, because my family assumed that I didn’t like them. So I was misunderstood in a way that led to me not being included in caring for the dogs.
With our two current dogs, though, I have become one of the main caretakers. I feed them and used to walk Houdini. I pick up their poop from the garden. I am proud of all this. I am so able to express care this way, even if I can’t handle snuggling them.
I am so hoping to have more quality time with them. It is an honor to tend to them in their final days. I am so lucky to have had so many years with them.
That was a sad post. I hope I didn’t get you too down. It is just what is on my mind. Thank you for reading.
I hope you are enjoying the holiday weekend! I can’t believe that it is already the end of November. It is surreal to think that this year is almost over.
I am still wrestling with dysregulation. It comes and goes on a daily basis. It is tiring. But it is not as intense or continuous as it was a couple of weeks ago. So that is good I guess.
I am thinking a lot about what I want to do in the next year. I am also reflecting on this year. This has been a strange year for me. But I also have a lot to be grateful for. So I want to celebrate that.
I don’t want to do a list of everything I am thankful for. But I want to highlight three things.
One is the lovely new home that my mom and I share. This time last year, we had no idea where we would end up. It was scary. The house we found turned out to be the perfect cozy home we needed. The incredible view is endlessly inspiring. The neighbors are kind. It is so wonderful to realize that we are settled in a nice home after last year’s stress over having to move.
The second is all of you. I cherish my online community. To be reaching thousands of people with my words is difficult to grasp. I am so grateful to you for receiving my words with your hearts, and for amplifying my messages. To help other nonspeakers and their families is such an honor. I am so in awe that so many people are interested in my words, and that those words are having an impact. Thank you all for being part of that.
And the third is that ten years ago, to the day, I was in Portland spelling with Elizabeth Vosseller for the first time. I am so eternally, profoundly thankful for that experience. It was my first time ever expressing my true words. I am so moved thinking about it. I am in awe over how it changed my life. Thank you, EV, and thank you to my mom who brought me there, and to my younger sister who came along.
There are many more things to be thankful for, but I am too tired to write more. I appreciate you all!
Well, Danny had a great day today, full of smiles and giggles, and said “I am so happy to be feeling better.” See attached for a photo of him happily reading a cooking magazine this morning.
He asked me to share that update, and to share that our course – Goal Setting for a New Life: Setting & Managing Goals for Spellers – is now listed at full price, $55, as of today. We appreciate that so many of you joined the course during our first month’s discount! We hope that the word continues to spread and that even more spellers & support teams will be able to learn from it.
Initial feedback has mentioned that even the first chapter of the course is hugely helpful, and that users enjoy and are impressed by the content and presentation. If you’re using the course and finding it helpful, please help spread the word! And we’d love to hear any feedback.
The link for the course is here. Thank you again for helping us promote this course, and a special thank you to those who signed up!
I appreciate your kind comments. It helps me in my heart. Thank you.
I get the sense that many of you are similarly struggling. Let’s try to ride this out together. I am so feeling for anyone else who is going through a tough time.
I am wanting to address some questions I know people have regarding my communication. This will be fun. I am so annoyed by skeptics who pose such questions with smug authority even though they have no clue what they are talking about. It is all so embarrassing for them. But they don’t realize it yet.
1. Can you explain why someone must be holding the board?
That is actually a good question, but is usually asked aggressively. There is ongoing research into the relationship between speller and Communication Regulation Partner (CRP), but at the moment we don’t know for sure the mechanisms behind why it is easier to spell with a handheld board. What I can say is that many of us progress to independent typing, with the keyboard on a stand. We still need a trained CRP with us to support our regulation. So if you can see that many spellers end up not needing a handheld board, why do you persist in asking this question as if it discredits the whole method?
For me, it is much less exhausting to use a handheld laminate than a keyboard on a stand. I suspect it relates to an emotional connection with my CRP. I feel more safe and supported and less alone. That helps so much. But I challenge you to see me spelling with Tara and to find any possible way she could be “puppet master” controlling where I point.
2. Why make someone dependent on a CRP? That seems like it denies them autonomy.
This is so stupid.
How to start… Hello, I can’t control my body! I am stuck in apraxia. I need support to communicate in a reliable way. My options are to work with a CRP or not communicate. Communicating independently is simply not an option.
Does sign language limit deaf people? Do wheelchairs limit those who can’t walk? Does anyone have a tried and effective approach to help nonspeaking autistic folks communicate independently?
No. No. No.
Spelling works better than any option available to me. It is not making me dependent on a CRP. I am inherently dependent on support to do many things, because that is the nature of my disability.
3. How could these spellers possibly be capable of writing the things attributed to them? They can’t be that smart without education.
Jealous much?
I am so annoyed by this. But an easy answer is: We are super sensitive to our surroundings, and that includes hypersensitivity to inputs around us. Many of us have super acute hearing. We can take in words on a page in seconds. Our brains are processing powerhouses. That is the truth.
I am a sponge. So despite being denied an education in school, I learned from observing the world. And my parents educated me. Reading advanced books, teaching me up to calculus even before knowing about spelling, playing word games, watching documentaries and the news. That all helped shape my knowledge base. But the main thing is that my brain is just advanced. I am smarter than most people. Most spellers are. You don’t need to get upset about being less smart, because I would personally take somewhat lower intelligence if I could better control my body.
That is enough for now. Whew! Feels good to get that out. I am a bit salty in this post, but I need to get my feelings out there. This is cathartic.
I am in a pit of dysregulation. This is so discouraging. This is so disappointing. I am trying so hard to regulate myself, but it just keeps surging. This is awful.
This past week or so has been so intense. My mom is so trying her best, but I keep spiraling. It has been so tough for her.
This is so disruptive to my quality of life.
I must remember that I have made great progress in my regulation overall. The moments of despair obscure such perspective. I cannot let despair about my despair drag me down further.
The past weeks have had some great things happen. I voted for the first time. It felt so momentous. And I also started playing tennis again with my mom after years of not playing. The speller study group finished our poetry course, the first of many topics we hope to cover.
The bad times seem so bleak, so I try to recall the positive times. It is hard to do! But it helps.
I am full of energy that I can’t manage. There is a lot of anger and anxiety and fear. The energy overwhelms me. This is something I might spend the rest of my life trying to deal with. That is daunting.
This is part of my journey.
Thank you for being in my community. This disability is so cruel. But humanity can come together to support those of us who are affected by it.
It has been a while since I have posted regularly. Same with All Our Brave Hearts. I think I need to go a bit dormant for the rest of the year. I am so working on a new phase of my life, and it is taking a lot of energy. I will still post, but more infrequently.
I am thinking a lot of how to make more impact and also grow in my skills. I want to do more focused advocacy, and to submit more writings to publications. I want to develop more courses. I want to build more opportunities for my local community of spellers. I am so feeling a need to shake things up.
That is not to say that I am done with Danny With Words as an entity. I will remain active on social media and my blog. I love you all and I won’t abandon this amazing community. I will just post a bit less.
I have been thinking deeply about the impact I hope to have. I am also uncomfortable with the way Meta is run, and though you all have formed a beautiful oasis of care and community on my page, I am concerned about the implications of supporting a company whose ethics don’t align with mine. So I will consider alternative methods to get my words out there. But in the meantime, I will keep hopping on here to share and learn with you.
This is not a major announcement. Just a bit of an update! I also wanted to share my Halloween costume. I have gotten into true crime lately, and I love a good outfit. So I chose to be an old-timey detective. I love how it turned out!
I appreciate you all! Thank you for being with me.
Danny With Words 