April 17

• We just got confirmation that, yes, they are going to remove Ignacio’s drain today. We don’t know when yet. The fact that he’s gotten this far is a miracle, and there is risk in the moment of removing the drain. If you have time to pray or send love and strength to Ignacio today, it is soooooooooooooo appreciated!
• We got more good news too. Today, for the first time, the physical therapists came. They worked beautifully with Ignacio for more than 30 minutes. They were inspiring. He did great. One of the three was from Colombia, and she did the whole session in Spanish, which makes a huge difference for him.
• And then the mega-news… even though his insurance is not yet worked out, he has been accepted by Moss Rehabilitation in Elkins Park, which is the best neuro rehab facility in our area. This is amazing, extraordinary, wonderful, remarkable news. Again… VAMOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOS! 💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪
• They removed the EVD (drain) and the procedure went smoothly. A scan tonight will confirm that all is stable in the wake of the EVD removal. We are on our way!

April 18

• This is the most beautiful day ever. It started with Ignacio finally passing the swallow test. He is allowed to eat solids and purees, and to drink thickened liquids. Once he gets back in practice with swallowing, I’m sure he’ll pass the test to drink regular liquids. I am allowed to bring foods into the hospital for him to eat! And at the moment, I have such tunnel vision that I can’t imagine what to bring. Waiting for the nutritionist and the menu people to stop by (Ignacio now gets to order his meals!) to see what is good for him, and what he seems to want. Then I’m going to put out the word for anyone who might like to make him something special. This is INCREDIBLE.
• Right after that, the physical therapists came again, including Vanesa from Colombia, who is a genia total. He did incredibly well in his second physical therapy session. With help he stood up for the first time in 5.5 weeks. As you can imagine, as soon as he stood up, he started trying to walk somewhere, and they had to stop him. One step at a time! No tango yet!
• Also, the doctors came and said everything looks wonderful, his last scan this morning, his demeanor, everything. They are considering doing something kind of unheard of and sending him directly from intensive care to the rehabilitation facility. Ignacio breaks all the rules. He’s the first patient the physical therapists ever encountered who got approved by the best rehab facility before having his first rehabilitation session in the hospital. And now he may just skip out on the regular floor and go right to rehab from the ICU. Perhaps as soon as tomorrow.
• Like I said, I have had this TUNNEL VISION. My whole world has been supporting Ignacio, keeping him alive, advocating for him here in the ICU. Last night, I felt like I could barely adapt to the coming changes. And of course, it’s not that, really, it’s that we continue to get very conflicting information about whether his regular Medicaid will be approved, and therefore whether the rehab facility that he is about to go to will be covered. When I’m tired, that uncertainty drives me to desperation. When I’m more well-rested, like this morning, I’m like… well, we just turn this situation over to the Universe and see what happens. Universe, please help us find the absolute best path so that Ignacio gets all the support he needs to recover completely.
• Lastly for now, he is no longer restrained. And so my job is no longer to try to help him tolerate being restrained. He needs to not pull out any of his tubes; it would be better if he didn’t touch his head for now; and he definitely needs to not try to get out of bed (which he absolutely can’t manage on his own yet). But beyond that, he can do what he wants. An Ignacio who can scratch his nose or the side of his eye when he wants to is a completely different Ignacio. An Ignacio who can curl up on his side and fall into a calm sleep for the first time in 5.5 weeks, and who they will finally allow to sleep more than 1 hour without being awoken for neuro checks, is a whole different person. One who is content and ok with life.
• Thank you, all, for all your love, support, and understanding for the ways that I can’t always respond, be present, or otherwise take part in life right now. Until Ignacio needs me less, he is all that matters. And you know what, that day is coming, step by step.
• I am at home, working on the festival and the plan for Ignacio’s rehabilitation and health coverage. Meanwhile, Monica is at the hospital with Ignacio, who is eating HIS FIRST MEAL since March 9. Baked chicken, mashed potatoes and veggies. With specially vitamin- and protein-fortified ice cream for dessert. I am soooooooooooooooooooo happy!
• And the last thing for today… I spent the last hour talking with the intake nurse at Moss Rehabilitation. We are going to give Ignacio over the weekend to keep benefiting from the physical, occupational and speech therapy at Temple, keep eating and building strength, and then we’re going to move on Monday to the rehab facility. This will make the best use of the time that he can spend there. I’m very happy and grateful for this plan. Vamos!

April 20

• Today marks six weeks since Ignacio’s first stroke. Yesterday marked three weeks since the second stroke. Yesterday, Ignacio moved out of intensive care and onto a regular floor specializing in strokes; he was in intensive care for 42 days. On Monday, he will leave the hospital and go to Moss Rehabilitation, which everyone says is the best neuro rehab in the area. We will only have access to that rehabilitation for 30 days. He will be released from Moss 2 days before the festival starts. He will not be ready to live at home yet. We do not know where he can go, at that point. If we can’t get him insurance somehow, we will be in a very bad situation. He needs at least 6-9 months of rehab, most likely more than one year, to recover most of what he can recover. (Not all of that is residential, but it will be intensive and constant.) How much can he recover? We will know in 6-9 months, or a year, or years.
• Sometimes he can recall his name; sometimes not. He can’t remember my name (my name is difficult). Standing up with support for 40 seconds yesterday was a huge victory. He is not allowed to sit in a chair yet, as he won’t be able to manage it. He is allowed to eat, but doesn’t have the stamina to get many calories from eating. He has a peg tube directly into his stomach to give him most of his nutrients and pills.
• He has survived, against many odds.
• And now he has to rebuild EVERYTHING. Everything physically, everything mentally, every part of his identity. And at least for now, to do that in a foreign country, where, despite my efforts, people spend a lot of time speaking loudly to him in a foreign language. Speaking to him in that tone pretty much of, you don’t speak my language so you must not be smart. Hopefully hopefully they have Spanish-speaking therapists at Moss. I know, you are thinking, Spanish is the second language in the US… how could they not? But we have encountered relatively few Spanish speakers in our hospital and rehab experience so far. That is why we love Vanesa the Physical Therapist from Colombia so very much. Well, that, and the fact that she is AWESOME. But she isn’t working this weekend, so Ignacio has already had his last session with her.
• Monica leaves on Monday, and I will once again be supporting Ignacio on my own until Ariel arrives around May 18, while trying to find a way to prepare and then run the festival, and doing so much other work. How can I have so much other work to do? I can’t describe to you how exhausted I am.
• Between Ariel, Monica and me, we have covered 11 hours a day for 43 days, so that every single moment of visiting hours there was a loved one who speaks his language in the room. At first, this was necessary because the doctors thought he was completely unresponsive, and if they had kept thinking that, we would have been in a very bad situation indeed. (He was completely unresponsive to strangers speaking to him in English, or using a “language line,” translation phone calls, during the first week after his first stroke.) After that, it was to help him survive the absolute torture that is the ICU, the intubation, the not being allowed to ever sleep more than 1 hour (and usually much less), the million tubes going in and out everywhere, the not being allowed to move. Throughout it all, it was to accompany him and give him hope, and to remind him of who he is (lots of listening to tango, opera and Argentine folklore). Often, it was to advocate for him, and remind his caretakers of what he needs, and what the doctor said, etc. - you don’t want to know how many miscommunications happen on a daily basis. You just really don’t want to know.
• This weekend, I will spend more time at home, finally, trying to address my list of tasks which only grows and becomes more overwhelming every day. Monica will be in the hospital room, simply being his angel. Watching over him as he finally gets to enjoy deep, restorative sleep for the first time in 6 weeks. Helping him eat (he has to thoroughly chew and swallow each bite / sip before having access to another.) And endlessly insisting that someone anyone get the building engineers to warm his room up past 50 degrees.
• Thank you for all the love and support you have sent us over the past 6 weeks. Ignacio will keep needing your love, prayers, and thoughts for a long time.

Once again, April 20

• When I wrote this morning, I was writing about yesterday. Turns out that today Ignacio is once again a new person. Honestly, the changes we have seen in the 8 days that Monica has been here are incredible. Not only is he now moving the right side of his body so much more, but he seems comfortable in his body again. And because of that, he seems much more comfortable in his mind. He understands everything, but has a lot of trouble accessing words and memories. His therapists have started to teach us ways to work on it, and we’re already making progress. It is going to be long, but after today, it’s easier to imagine how we’re going to get there.
• I’ve been able to get in bed and cuddle with him a few times now, including today listening to Demare. And it makes all the difference in the world to me. I have missed him so much.
• I’m going to move the visualization / meditation suggested by my therapist up to this entry, so it’s not so hidden. If you’d like to join me in this today, or any time over the next year, it will be super-appreciated…
• Here’s the meditation / visualization: you imagine Ignacio and see him breathing in through his nose, breathing in prana / energy / particles of light, through his nose and right into his brain. And you see how all of that prana / energy / light helps to activate and connect his neurons, to help fill in the circuits that are damaged, to re-connect everything. Until you see that his brain, his head, is covered with a glittering cap of light, made up of all those millions and millions of neurons all coming back online, and all the connections among those neurons reviving, or rewiring, as necessary. You see Ignacio’s glittering, lit up, thoroughly awake and alive brain, supporting his physical, mental, emotional and spiritual health and his ability to regain himself. To become 100% Ignacio again.
• Thank you for considering engaging in this meditation, or any prayer or meditation, on his behalf.

April 22

• Yesterday (Sunday, April 21) was a challenge. Monica left (I managed to change her flight in my head and was expecting her to leave on Monday, but no, it was Sunday!) Ignacio cried. I don’t know if it was because of her departure, or because with increasing lucidity, he can see the challenges that lie ahead. I gave him so much reassurance. I explained that he doesn’t remember what we’ve already gone through, so he doesn’t realize the extraordinary progress and healing that he’s already accomplished. But he has - he’s already done an incredible job of recovering, and he’s going to continue. He stopped crying, but later got very ornery, for the first time in a while. He basically told me that I look like crap, which is totally true. But ouch!
• We had decided to give him the weekend to rest and recover, and start his 30 allotted days at Moss Rehab today. But it depends on their having a bed. The bed meeting is at 10:30 am today. Let’s all pray for a bed! The intake nurse, Terrie, who is very wonderful, and who has been following Ignacio’s case since March 19, had asked for videos of the festival. I just sent her this video from the 2023 festival. And then this video of Ignacio and me dancing in Parakultural two months and two days ago. I told her that Ignacio and I are trying to get back to there and then go beyond. That’s why we need Moss. 🤞
• WE ARE GOING TO MOSS TODAY. And we have a great room number: #111. Ignacio #1. VAMOOOOOOSSSSSSSSSSSSSSSSSSSSSSSSSSSS!!! 💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪

April 23

• Woo! What a whirlwind yesterday. Surely the highlight of the day from Ignacio’s perspective was that they presented him with his first hamburger in more than six weeks. His face transformed completely with a combination of relief ("Someone understands me!), surprise, immense joy and ravenousness. It’s the first food that he ate in its entirety, and with a look of complete bliss the entire time. He is eating so well that: 1) they are reducing his tube feeds through the peg in his abdomen; 2) they are talking about repeating the swallow study to see if he can also be allowed to drink liquids, the only food / drink restriction still on him; and 3) we are moving toward taking out the peg in his abdomen much earlier than the 1-2 months that a doctor told me on Sunday, I’m pretty sure.
• Even though they said that transport is always late, there they were at 2 pm, waiting outside our door to take us to Moss Rehabilitation. And… Ignacio left the hospital! For the first time in more than six weeks! From the back of the ambulance on the way to Moss, we could see the landscape change as we drove north. Trees with spring-green leaves, flowering trees, daffodils, tulips, forsythias, the colors of spring everywhere. Ignacio commented on it… “Wow, it’s so beautiful!” Moss sits on a whole campus, and even has a greenhouse where families can visit with residents.
• We had a good start at Moss. The staff is much more present than what is possible in the large urban hospital that is Temple University Hospital. In his intake with the nurse, I mentioned about giving him time to sleep between therapy and therapy, explaining that he had been immobilized for 5.5 weeks before having his first PT session, how he had been woken up every hour for 6 weeks in the Neuro ICU, how he was just now starting to sleep deeply, and how after each PT session, he had fallen into a super-deep sleep. Stacking his therapy sessions (which is what was planned to take advantage of the interpreter’s hours) is not ideal for him at all. I mentioned this to the nurse, and then when he had his first visit by a doctor, a neurology resident, I was shocked to find that an email had already gone around, conveying my request and suggestion. This would be the exact opposite of my experience in the hospital where I would have to tell 10 different people the same thing before there was any action.
• This morning, his therapies will be stacked - he’ll complete everything between 8 and 11 am - which is not ideal, but hopefully they can adjust going forward. I offered to be completely available to translate so that they could have the interpreter do some of the sessions, but not all, thereby making it easier to separate the therapy sessions in the day.
• I asked him a few times if he wanted me to be present this morning for his therapies and he couldn’t decide. I then said that we would try him doing his therapies just with the staff today, and see how it went. We are still in love, despite all of this, and it’s not really the best thing for our relationship that I am one of the people endlessly bugging him to do this or that. If there was one thing I had been determined to never do, it was endlessly bug him. But everything changes when there’s a brain injury.
• I only got home at 10:15 pm last night, after being with him since 9 am. I would have had to leave pretty much now, at 8 am, to be there for all of visiting hours, and as much therapy as they would allow. I feel guilty, of course. It’s going to be a very hard day for him. But the rhythm of my life has to shift a little bit now that he’s in the next phase. We’ll see how it goes. Obviously, I’ll spend the afternoon and evening with him, and visiting hours at Moss go to 9 pm, an hour more than at the hospital.
• Haha! I just called to find out how he’s doing and see if I should come in right away. They’re going to call me back and let me know. It IS the first day, after all.
• I arrived at 3 pm today, after just barely saving my 16-year-old car from burning (or leaking?) all the way through its oil and dying. I have been unsure where to buy oil, especially because I’ve been in the hospital during all the hours that stores are open. Finally, I realized on Sunday… AMAZON! I ordered the same oil whose empty containers were rolling around the back of my car. And when I got to my car today, the AMAZON TRUCK was blocking me from leaving. I thought about it and said, This is a sign! So I waited for the driver, asked him if he was covering the next block, and long story short, he gave me my oil. When I then checked my oil, which I had been too busy and I’m-a-girl-I-can’t-check-my-own-oil to do before, I found that it wasn’t even reading on the stick, because it was so low. And… I couldn’t get the cap off the car’s oil well, even though I had my newly arrived amazon-purchased oil at the ready. So I slowly drove up Front St., thinking of Ignacio and saying to myself, I need a Latino I need a Latino. (Each time Ignacio fixed something, and especially when he would jerry-rig something in a surprising and unconventional way, he would perk up, put a finger in the air, and say “Latino!”) Pulled into the first garage I saw and begged for help. And a very nice Latino man used a wrench (a wrench! aha!) to take the oil cap off. And added the whole darned bottle. Mental notes: Find a wrench and put it in the car! Order more oil from amazon. The nice man from the garage, who refused to accept my $20, suggested I check it every three weeks.
• When I arrived at Moss, I thought I would find Ignacio in bed, after the insanely full morning that he had had. But I found him reclining in a sitting / reclining wheel chair. After being in bed for six weeks straight, he tolerated being out of bed for the entire day. How amazing. And despite the intense therapy of the morning - “heavy” he called it - he had energy to visit with me for hours. We sat outside together and he put his head on my shoulder. We kissed many times. He had salisbury steak, mashed potatoes, green beans, a chocolate chip cookie and some protein-infused chocolate ice cream for dinner - who can believe he just passed the swallow test last Thursday? He’s eating abundantly and with gusto! We took another wheel chair walk after dinner and sat in the sun (dinner is early!). And then he wasn’t ready for bed, so I kept telling him stories when we got back to his room.
• He understands everything, but his memory is still extremely poor, and he really struggles to find words, and maintain the thread of an idea. I really hope they can help him with this at Moss. And also, I keep reminding myself how recently we were still in very serious situations… tomorrow will be one week since they removed the drain from his brain. He is really only starting his recovery. A few days ago, I told you that he only knew his name sometimes. I think that now he ALWAYS knows his name. My name, however, we are still working on.

April 24

• I arrived before 9 am in order to be present at Ignacio’s Speech Therapy and Physical Therapy appointments. It was very comforting to be there and see how they work with him. All his therapists are excellent. Moss’s reputation seems to be very well-deserved. It feels like a place of healing.
• I wish Ignacio could stay there for 8 weeks. That is what I wish. But they may tell us “chau!” after 2 or 3 or 4 weeks. I wish that weren’t the case. There is no way that I could care for him on my own now. There’s no way he could come home in this state. Everyone says that Moss works miracles. But I’ve never been in this situation and can’t imagine how much transformation could happen in 2 or 3 or 4 weeks. Most likely, not enough that I could take care of him.
• Fortunately, when I am there with him, I’m not so worried about that. Ignacio is currently living in a place that is kind of outside of linear time. It lines up with Dr. Jill Bolte Taylor’s description of her left brain bleed in her book, My Stroke of Insight. After her stroke, it took months for her left brain to come back “online.” While it was absent, she was living in a blissful state of pure presence in the current moment, and a sense of connection with all people and things. I don’t think Ignacio is benefiting from the same bliss, but he is not experiencing linear time like he did before the stroke. For example, every time he sleeps, he forgets everything that has happened. It’s all new to him after he wakes up. The hamburger incident below, two hours later, he didn’t believe me!
• Anyways, when I’m with him, I too step outside of linear time a bit. I am so grateful that he is still here to love and I feel so fortunate to be able to love him and care for him. I am just there with him and it’s all that matters. Today I climbed in bed with him and he took a 2-hour nap in my arms. I couldn’t sleep but I just held him, and felt so grateful to be doing so.
• When I leave the hospital or rehab facility and come back to real life, it’s such a shock. Everything I need to do and don’t have time for is still there. And when I get back to the studio, and everyone is here taking class and then dancing at the milonga, it’s just so painful to feel the distance between the Ignacio I’m spending time with in the rehab facility, and the Ignacio that I used to teach with, rehearse with, live my life with before.
• On a lighter note, I finally brought Ignacio non-hospital food today. A Portugese pastry that has certain similarities to an Argentine factura. You should have seen his face eating that factura! I wish that you all may experience a similar joy!
• And by the way, he got cleared to drink “free water” today! What is free water? First, you brush your teeth so that if you accidentally aspirate a little bit, you’re not aspirating bacteria, just water. Then, without any food involved, you drink water in sips, ideally rinsing the water around your mouth a little bit each time to get your swallowing muscles primed to do their job. Then you swallow and I cheer! And everyone looks on nervously to see if you cough, or your voice gets weird, or there’s any other indication that you breathed the water instead of swallowing it.
• Tomorrow or Friday, Ignacio will do a very advanced swallow study, beneath an x-ray and with barium, so they can really 100% be sure that everything he consumes is going down the right way. If he passes, he’ll be able to eat and drink what he likes. I’m so hoping he can get the peg tube out of his stomach really soon and we can continue forward with our Master Plan, which consists in removing every frickin’ tube, cable and line! There were moments when he had more than 40 things attached to him. And now, he just has two, I believe. Pretty darned cool!

April 26

• Yesterday (April 25) was another day where I got home too late and too exhausted to write. Ignacio has been working hard all week. The policy at Moss is that patients have to be ready to work three hours per day at a combination of speech, occupational and physical therapy. In Ignacio’s case, the physical therapy is the greatest amount of time. All of the therapies are exhausting, and the combination is brutal, especially because they stack his therapies so that he works nonstop in the morning (in order to take advantage of the interpreter’s time). I’ve been negotiating nap time in the afternoon (they would rather that the patients stay in their wheel chairs all day long). But it makes a huge difference to him to be able to comfortably lie down in bed after two meals and all that work. Then we go outside, or listen to music, or walk the corridors of the hospital (him in his wheel chair still).
• Yesterday, he was dealing with dehydration. For weeks, all his fluids came intravenously, but they don’t use IVs generally at the rehab facility. And he hasn’t been allowed to drink fluids yet - it was the only part of his swallow study that he hadn’t passed. (He hadn’t shown that he could safely manage swallowing liquids, without allowing any seepage down his airway.) Where did this leave him? Dehydrated. He looked like an old man, all shrunken. And he was very uncomfortable. In this state of neurological repair, when he is distracted by discomfort, he becomes a bit hard to manage.
• Yes, you’re right, I had been mentioning the hydration issue since he was still in the hospital. I just had a feeling that we were going to have trouble there. Finally, by last night, they gave him a big ole liter of IV fluids and I watched as he reinflated in front of me, from a wizened old man to my Ignacio. He fell into a comfortable sleep, smiling. Yeah for hydration!
• This morning, when I arrived, he was a different person, bright-eyed and bushy-tailed. He did great in his therapies and we had much more good, connected time today. He is now neurologically at a point where he can understand what is hard for him and set his intention to work on that. He knows what he wants to say, but he has trouble getting the words out, or they come out, but all mangled, substituting other words for the ones he meant. Aphasia is a huge challenge, and very common after stroke. But Ignacio has a double challenge: he hears English around him all day. He does not have the luxury of regaining his language, identity, memory and history in his own context and language. But rather, his brain and his sense of himself and who and where he is in the world are simultaneously being stretched to incorporate the new language and reality of living in the United States. I strongly believe that he is moving slower now because of the enormity of this challenge. I have to hope that it doesn’t set him back permanently, but rather gets him ready for more mental flexibility at the end of all of it.
• But I was saying… by today he got to a point where we can talk about what is difficult for him and he can set his intention to working on it. That’s something, right? For example, he basically has not been putting down any new memories. Everything that happens, he knows until he goes to sleep, and then it’s like it didn’t happen. This evening, when I left him, I asked if he remembered our adventure that had happened just a couple hours before… we had gone out through the greenhouse to the garden and had a really nice time sitting outside talking for over an hour… and at some point, some gardener closed up and locked us out! I had to call his nurse’s station and ask for help. The nurse came and couldn’t get us back in. And had to go get security! I asked if he remembered our adventure, he said yes. I said, you know that often you’re having trouble remembering what happens each day, but try to focus on remembering our garden adventure and we’ll talk about it tomorrow. We’ll see if he does or not, but more and more, we’re talking about what he wants to achieve, and he’s setting his mind to achieving it. Also, I’ve been amazed to see that, even when he’s not benefiting from being centered (“ubicado”), knowing where and who he is, he is still working damn hard in his therapies. It’s like, at some level, he believes and trusts that all this is for his highest good, and he’s on board 100%. Pretty amazing, right?
• I want to write a bit more about my reencounter with Proust in a coffee shop yesterday, but I have to go get something to eat.
• Skipping Proust for now, it’s important to celebrate the fact that this afternoon, they did another swallow study and… you guessed it! Ignacio passed. He is done with swallow studies. After SEVEN WEEKS of not being able and then not allowed, he can now drink water and other liquids. Woo hoo! His caretakers keep remarking, wow, he is moving so fast. Wow, what a change from yesterday, or from when he came in! Wow! May the great progress continue, por favor! 🌟🏆💫

April 27

• Ignacio Santiago Ondartz!
• I’m here last night, writing up everything about how great he’s doing, how wonderful he is, and finally I get around to making scrambled eggs for dinner. (Yes, if anyone can drop off prepared food, I’ll be so grateful.) And as the eggs are scrambling, I get a call from a doctor at Moss. Ignacio apparently got out of his wheel chair, despite the security belt that is enough to keep practically anyone else in, tried to stand up or move himself to the bed, and ended up on the floor with a big crash. Because no one actually saw him fall, no one knew if he had hit his head, or how hard he had hit any other part of his body. He needed a CT scan, and radiology was closed for the day at Moss. So… one more trip to the unique craziness that is the emergency room of a large urban hospital. In this case, Einstein.
• I ate in a rush, got back on the road to Moss, calculating strategies…the fastest way takes you through areas where you REALLY can’t risk your car breaking down or getting a flat tire, but the other ways are REALLY long. I went the fastest way, arrived in probably record time (27 minutes?). And just as I did, I got the call that the ambulance was there. They said it was in the old ambulance bay from when Moss had had an emergency room. So I went running around half the building, only then to find out that it had actually parked in front of the building, where I had nearly been. More running. Got to the ambulance just as Ignacio was brought out of the building.
• I had no choice. I HAD to go. Because Ignacio was staring with his eyes wide, totally confused, and unresponsive. Usually, when he sees me, his face immediately changes. But he was so scared and disoriented that it took a couple minutes of talking to him, explaining what had happened, for him to wake up into the present and give me that look that melts my heart. Love, appreciation, connection, togetherness, it’s all right there. But over and over again, he has saved it for me (obvio!) and refused to let the rest of the world know that he was mentally alive.
• So, yes, his mental state was still the same. We still had to get to Einstein, be assessed, get a CT scan (head), a PAN scan (?) of all the essential organs, and x-ray his arm that he probably fell on too. We probably got to Einstein around 10:40 pm. We had preliminary results that he was probably ok by midnight. By 1:40 am, we got the ok that the super-radiologists had checked all his scans and x-rays and he was in the clear. And then until PAST 4 am for the ambulance transport back to Moss to show up. At some point after the Phillies beat the Padres on the West Coast, I couldn’t take it anymore. He shifted over in his emergency room bed, and made space for me. I curled up at the bottom of the bed and we both fell asleep. The lovely nurse, Jackie, didn’t complain when she saw us, and came back offering a pillow and blanket. ❤️ Back at Moss just before 5 am, I hoped to see him transferred to his bed and then quickly leave.
• The ambulance back hadn’t let me ride in the back with him. I rode up front. And even that short time of not having someone to explain what was happening… he got overwhelmed again. So we got back to his room, and I explained what had happened again. I pulled up the shades a bit so he could see all the beautiful photos of him, us, his family, him with friends, etc. that I had taped up. And he started to get reoriented. What a relief! And then… he refused to let me go. He became much more successfully verbal than in the past while, and was insisting… no, it made no sense for me not to stay, not to sleep with him, not to get in his bed. I agree! I explained to the nurse and he said, no, since he was in a double room, it was not permitted. I had to go. I went back to Ignacio and explained and he kept arguing. I struck a deal with him. I would sit at the bottom of the bed until he fell asleep. He kept waving at me, reaching for me, and the nurse was like, You only have 10 minutes and then you have to go. I was like, well, hopefully he falls asleep in 10 minutes so we don’t have a problem. After 10 minutes, he wasn’t asleep, but I told him, I am so tired, I really have to go. And he finally said, “dale.” I didn’t have to worry as much about the route and the danger on the way home, because it was already light.

April 27 (take 2)

• You wouldn’t necessarily think you could have a good day after spending the entire night in the emergency room (see below), but you can always count on Ignacio for a surprise.
• First, we ate lunch and he ate well, including using his right hand to try to do some tasks, which is a big deal. And cleverly using his left hand to support his right hand in trying to do tasks.
• Then, we went to occupational therapy and the therapist worked very well with him at using his right hand and whole right arm and shoulder. We worked on tasks, and also movements that activate different muscle groups. He worked so hard. His muscles are trying to work, but his brain needs to relearn how to trigger them correctly. It amazes me how, even though his aphasia keeps him from understanding the context of things, he works his butt off when he has a chance to do therapy and improve. It’s inspiring.
• Lastly, we went to physical therapy. Basically, just go ahead and start crying now. Save yourself the trouble of trying not to cry…
• They have a set of bars that is circular so that if you start walking, you never have to stop. You use your strong arm (at least in the early days after a stroke) on the bar. Since it’s Ignacio’s left arm, it means that he will be moving counter clockwise, just like the line of dance. With some support, but mainly some help cuing his right leg to advance, he was able to walk around the bars once, and then again and again. When it was time for a break, the therapist started talking about music, and I asked if I could run get my phone.
• When it was time to work again, I opened the beginner tango playlist that Ignacio had made, and played the first song, Di Sarli’s recording of El Amanecer (Dawn!). I formalized the exercise as tango by walking backward in front of him for every step he took toward me, and we walked the whole tango of El Amanecer. That’s how you learn to walk, right? With Di Sarli.
• So he took a well-deserved break, and then the therapist asked about singing. And I was like, yes, he’s a singer. Is it ok if we sing while walking? And she’s like, Yes! The idea of walking is that it’s supposed to be natural so it’s good to do it while doing other things like singing.
• We got ready, and when he started walking, I put on Alfredo Zitarrosa’s recording of “Zamba por Vos,” and off we went. Ignacio walking forward, me walking backward, and both singing along with Zitarrosa. He has a habit of singing without sound, just mouthing all the lyrics, which is in itself quite impressive when you have aphasia. But the therapist said, you can sing strongly. So here comes Ignacio’s beautiful voice, mixed with Zitarrosa’s, while we walk around and around and around the barres in the line of dance. I sang, but my voice broke over and over and over again.
• Tomorrow, in that same area at Moss Rehabilitation, Emiliano Messiez and Sergio Reyes will give a free concert for the residents and their friends and families. Your attendance at Milonga Qilombo tonight helps makes that concert possible.

April 28

• Last night was an amazing night and today was an amazing day. Last night’s milonga was incredible. Such fantastic energy, extraordinary music by Emiliano and Sergio, and gorgeous tandas by Jorge Fernandez. Such an awesome mix of dancers and a wonderful vibe.
• I introduced Emiliano and Sergio as the “best tango musicians in the world.” Sergio responded by starting off playing intentionally warbly and completely out of tune. He made everyone laugh hysterically before starting to play like himself, and damn, if that was not exactly like Ignacio Ondartz.
• Ignacio, over the past weeks, has been perfecting his ability to make everyone laugh, in whatever state he is in at the moment, and whether or not he shares any language with them. It is extraordinary, and when it’s with people he knows well, often mischievous and borderline evil.
• For example: when Monica was here, Ignacio still had the drain in his brain, and she spent a lot of her time trying to keep him calm and not injure himself by moving around. She would give him verbal cues on how to breathe, she would match her breath to his, and sometimes she would stroke his breast bone. At one point, when he really had been agitated and bad, he got super calm, scarily calm. She leaned in closer and closer to make sure that everything was ok, and when she’s right up close, Ignacio suddenly opens his eyes wide, animates all his features and yells, “AAAH!” Both Monica and I went flying across the room, so startled were we. And Ignacio sat there, laughing himself silly at how he had tricked us.
• At other times, when eating was still newer to him, I’d be monitoring his eating (which I still have to do, by the way, bite by bite), and I’d lean in to make sure he had swallowed completely, and wasn’t choking. He would perceive my concern, how closely I was watching him, and so… All of a sudden, he’d go totally limp. A moment later, the food would start to slide back out of his mouth slowly. He’d maintain that state just long enough to give me half a heart attack, and then he’d slurp the food back in, animate his features and start chuckling to himself. I said borderline evil, but…
• Those two episodes are from the past now, but are so funny and so Ignacio-typical that they had to be written down.
• Today, I arrived, and he recognized me from way down the hallway (very good since the stroke caused issues with his vision, which I believe are starting to resolve). He recognized me, and I started doing like an exaggerated jazz walk with a lot of torsion and a little kick, and he started imitating me from his wheel chair. I got up close and he said, “Que alegria!” and I was so moved. We spent the next hour chatting beautifully. He was having MUCH less trouble finding words, getting through sentences and holding the thread of what he wanted to say.
• In fact, at one point, we were talking about phones, and I asked if he remembered the passcode to unlock his phone. We haven’t had access to his phone since March 9, because we haven’t been able to unlock it. He said it had something to do with his DNI (social security number). I was like, Do you remember your DNI? And he said, Sure! And recited it to me with only one mistake, which may have been the result of my imperfect Spanish. This is completely new. Until now, he’s only been oriented to himself, and has been unable to remember dates, facts, or any other dry details of daily life. He still, as of yesterday at least, had no idea what his birthday was. And when we told him, it didn’t sound familiar to him. So, in that context, remembering his DNI! Wow!
• I told you a few days ago that he finally seemed to reliably know his name, but that my name was still in the realm of hopeless. We got to the point that he could pull out my name if cued with the first syllable. But today, he answered “Meredith” like it was the most obvious thing in the world. I have a feeling that he won’t forget again.
• Back to the story of today… Emiliano and Sergio came and played a beautiful concert in the physical therapy area of Ignacio’s floor. About 15 patients came, many with family members, and everyone adored the concert. They started with tango, and then moved into some jazz standards that the audience was likely to know. They totally hooked the audience, especially a lovely man named Charles who had been using learning piano to recover from a stroke back in 2012 until he recently had another stroke. Hopefully he’ll get back to playing soon. And Ignacio was absolutely delighted. It means everything to watch Ignacio reconnect with himself, his identity, and his community, and to watch people love, appreciate and accept him, whether or not he could reliably say their name or remember all the details of their relationship. It is transformative for me and for Ignacio too, I think.
• Lastly, Eric & Maria brought Ignacio a big care package from an Argentine bakery in New York to give me at Qilombo last night. Sandwiches de miga y facturas. Ignacio’s calories are counted carefully and everything he manages to eat is monitored. So I asked the nurse if it was ok for him to eat mostly his own stuff for lunch, instead of the prepared tray. She said yes, and I presented the sandwiches de miga. Oh, his face eating the sandwiches de miga. Rapture! And then, I told him I had another surprise, and presented the facturas. He took the first one off the top and devoured it in three bites with a look of transcendence on his face. When he finished, I said, “Es el mejor dia de la historia, no?” And he responded, “Si!”

April 29

• Wow, it was one month ago that Ignacio had his second stroke. And four weeks ago that the neurosurgeon scared me out of my wits, telling me that there was no hope (before coming back and admitting that he had mixed up another patient’s scan). Well, we’ve gone from no hope to ALL HOPE.
• It’s unbelievable how much improvement every day brings. Ignacio has enough strength in his right arm that he has started hugging me with it. He uses his left arm to get it into place but he can sustain it and squeeze me. I saw him use his right hand and arm so many times to day: to hold a cup, to feed himself ice cream with a spoon (with me giving a little support, but really not much), to scratch his left arm and the back of his left shoulder. He has an instinctive understanding that the way to make it work is to use it, and that it’s not cheating to have the other arm and hand help out a bit to make it possible for the right side to do things. I am amazed. I never imagined that improvement could happen so fast.
• His speech and memory are also improving. Until now, he would forget every new experience when he slept. So everything was constantly new. But today, he remembered yesterday’s concert by Emiliano and Sergio. We had a long conversation about it, about how extraordinary it is to know musicians who are completely committed to creating in the moment, who never repeat themselves, even when they perform the same songs hundreds of times.
• Yesterday and today, he asked me what was going on with my life. And then prompted me to tell the long, infuriating story of how Los Totis still don’t have their visa, even though it was approved on January 5. If you haven’t applied for a P-3 visa before, you probably would get lost during that story. But Ignacio stayed with me the whole way and could relate it to his (easier) experience getting the same visa. I was thinking, Is this really happening? Do I really have my partner back as someone I can talk to, confide in, get support and empathy from? Yes, apparently so!
• Spending time with Ignacio now is like spending time with Ignacio. We laugh constantly. When I look back and try to remember what we were laughing about, I can’t remember the half of it, but we’re always laughing. He teases me, I tease him.
• Today, we got in a kind of fight because we were practicing his birthday, and he insisted that the words “dieciseis de agosto” were English. He kept asking me to please tell him how to say it in Spanish. We ended up calling his brother to moderate the situation, but in the middle of our voice message, Ignacio had to admit that yes, “dieciseis de agosto” were probably Spanish words. Poor Ariel, who is trying to finish large-scale construction projects in Mar del Plata and has to contend with our insane messages.
• Last week, I was in a panic because I couldn’t imagine caring for the person that Ignacio was then, here at home, in the tango studio. He won’t be able to safely navigate stairs (forever? for some time? who knows?) so he will live in the kitchen of the studio, which will become a private space for a time. Last week, I really couldn’t imagine how that could possibly work. But already now, even though it’s going to be a challenge, I can already imagine it. I can imagine how being part of the community that exists around the studio can help him heal, can help him reintegrate into life. I can imagine all of your kindness and support, and how much it will mean to him.
• Right now, a lot of that kindness is arriving in the form of food. Today, I brought him the empanadas and alfajores that Ross and April gifted him from Jezebel’s. He was in heaven with the empanadas, his first in two months (oh wow, he landed in the U.S. two months ago today!). He ate two for lunch, plus a good bit of the hospital-issue food. And then he nearly went into delirium with the piece of flan that Hanna had made for the milonga. For dinner, he ate the last empanada and most of the meatloaf, mashed potatoes, gravy and veggies that the hospital sent him. 😱 And then ate ice cream and an alfajor for dessert. A time will come when we shift our nutritional goals toward “healthy.” But for now, the official policy is: give him whatever he is willing to eat. Ignacio is taking full advantage and living it up!