Today’s update starts last night. At 9:40 pm, I got a message, saying that we had finally proven everything we had to prove, and Ignacio will be able to purchase private insurance to cover him after he leaves the rehab facility. (As far as we can understand, it’s bad to buy it before, because it could interfere with his Emergency Medicaid. We REALLY don’t want to interfere with his Emergency Medicaid, because it’s the reason why he is alive, why Temple University Hospital took him in and cared for him for over 6 weeks, and why he’s getting a chance to heal and flourish by being at Moss Rehabilitation.) If you are considering voting Republican, if you even consider voting for Trump, please know that you would be voting for Ignacio not to have made it. It’s only because of the Affordable Care Act (which most Republicans vow to repeal) that he can buy this insurance, and I would imagine it’s only because of it that Emergency Medicaid kicked in and covered his hospital stay and rehab stay. I would have to research that last part a little more. But essentially, Ignacio now has the most monumental preexisting condition(s) that you could possibly imagine. By forcing insurers to cover people with preexisting conditions, the Affordable Care Act gives people like Ignacio a chance at life.
And man, does he deserve that chance. Any person I talk to at Moss comments on how incredible his progress is. Unsolicited.
I’m trying to put the festival together, so I work each day from 9-11 am, and then head to Moss to spend the rest of the day with Ignacio. This is A LOT MORE than I was able to work when he was in the hospital, but A LOT LESS than what it takes to put the festival together. In any case, because I was at home working, I missed Ignacio walking down the hallway with the aid of a pair of robotic legs, like an exoskeleton. It was the talk of the floor when I arrived. And I missed it! I’m so sad! I have commitments the next two mornings and I just want to cut out on them to see Robot Ignacio. Aaaaahhhhhhhh!
By the time I saw him today, he had done the usual: an hour of occupational therapy, an hour of physical therapy (i.e. WALKING WITH ROBOT LEGS!) and an hour of speech therapy. He was absolutely frickin’ exhausted. His aphasia was terrible. Practically all day, he talked to me using the wrong words. But he’s more aware now, so he’ll listen to the words coming out of his mouth, shake his head, and say, “Cualquier cosa!” Knowing that his mouth is saying the wrong words must be a step closer to saying the intended words, right? I think so.
Despite this abject exhaustion, he challenged himself and ate his lunch (a cheeseburger) with his right hand. I almost don’t know why he does it… it’s so much easier for him to use the not-stroke-affected left hand. But he has this drive, perhaps it’s to recover, or perhaps it’s just to let his dominant hand become his dominant hand again. He pushes himself and it’s absolutely unbelievable to see the changes every day.
Dinner time came, and a much greater eating challenge: stuffed chicken breast, mashed potatoes, gravy, and green beans. I cut everything into bite size pieces, and handed him the fork. He put it in his right hand and started trying to use it. So I walked around to his right side, and put my hand under his elbow, much like a device I’ve seen them use in occupational therapy. I provided just a little support for his elbow, while he did all the work of loading each forkful and bringing it to his mouth. By the time he got to the last two bites, I was openly crying. I could not believe his PERSEVERANCE to eat the whole damn big plate of food with an arm and hand that were basically immobile just a few days ago. Getting just one forkful to his mouth would have been a victory. His drive to heal and to push himself forward is absolutely remarkable.
By after dinner, we were both exhausted, but if I leave, he has no one to talk to, nothing to do. I didn’t want to leave him, but we were actually… a little bored. We ended up going down to the garden (where we had gotten locked out a couple days ago). The security guard showed us another entrance and exit that does not get locked.
We sat in the garden, trying to have a conversation. Sometimes it’s easy to converse with him, but when his aphasia is so bad, it’s definitely harder. It can take a while for a conversation to get rhythm. But somehow it does, and it’s hard to explain how.
In this case, what happened was that I started to wonder if facebook had reinstated my post about Ignacio’s progress that had erroneously been flagged as inappropriate a couple days ago. All of a sudden, so many people were contacting me. I asked Ignacio if he wanted to hear the post, and he said yes. I read it to him and he cried. And then I read him the comments and we both cried. And I started to realize that he’s finally in a place to really take in what it means that you’re all out there rooting for him. I’ve told him hundreds of times, but finally he was ready to get it.
I asked if he wanted to hear more messages, and he did. We watched a video from Ignacio Gonzalez. My Ignacio left other Ignacio a voice message in response and broke down crying in the middle. I comforted him, and asked if he wanted more. He did. We listened to a long message from Silvina Valz that left us both bawling. He listened to a message from his friend Omar, from Damian Lobato, and more. I told him for the millionth time about the milonga that was held in his honor on March 25, and how hard it was for Ariel and me because Ignacio was going through a major crisis that night, and we were afraid of losing him while this beautiful event was going on half the world away. We watched the videos of that milonga, and he couldn’t believe it, and we cried more. I said how sorry I was that we were so far away from his people. How sometimes I left like I was not enough for him… And he held me. Long story short, we cried all over each other for more than an hour. Snot flying everywhere. It was ridiculous, but definitely the catharsis and healing that we both needed.
Ignacio is just more and more BACK, more here, more with me and with himself and inside his life. It is the most incredible thing. All this, and with the immense aphasia of today, he could only say my name if I cued the first syllable, “Me…”
May 1
One way that Ignacio, Ariel and I define Ignacio’s campaign toward health is to “REMOVE EVERY TUBE!” We want to put it on banners and signs and hang them all over. (At one point, I’m pretty sure he had between 40 and 50 things attached to him. At 11 pm last night, he had just two.) And then at midnight last night, we moved one step closer to our goal, when they took out the foley catheter that Ignacio has had for weeks to help him pee. He has had some trouble with retaining urine, being able to pee, etc. So when I got to Moss at noon, and he was in the bathroom peeing, I was soooo happy. So happy that I made up a song and dance with great lyrics “Hiciste pis, hiciste pis!” and a riveting dance step. Oh, you should see how Ignacio covers his eyes and shakes his head when I start my pee song & dance.
Despite being mortified by my song & dance, he did pee one more time at 5 pm. But now I am going crazy, really hoping that the peeing is still going on. Because if not, we may end up in the emergency room again, trying to put in the special catheter, which they can’t do at Moss. If you’re thinking about Ignacio tonight, perhaps you’d like to join me in doing a pee dance! Look what my world has come to!
Later, I got more good tube news. Ignacio has been eating so heartily and drinking so well that they will no longer give him nutrition through his peg tube. (Thanks to everyone who sent him Argentine food and helped bring this about!) I was like, “Let’s take the peg out!” And I found out that it has to be in for 5-6 weeks, before it can safely be taken out. He had it put in during the solar eclipse, April 8, so May 13 would be 5 weeks. If he is successful with the no-catheter experiment than that could be the date when we achieve our goal: NO MORE TUBES! It’s a huge thing to imagine.
This morning, I started reorganizing the studio kitchen to make it into a little studio apartment for Ignacio, so he can live with me without having to navigate stairs. Things are still on track for him to move there on May 24, the first day of the festival. OMG.
He is still immensely aphasic and with nearly no memory. Oh, please let his memory and aphasia start to improve soon. It’s very hard to live without memory, and when most of your words come out upside down and sideways. Please, universe, give him some relief. Let him know and remember himself and his life more easily. Let him more easily express what he wants to express. Let him feel like he is back in control of his life and not at the mercy of individual moments which keep appearing out of context. And please help us move closer to dancing tango again. We both want it really, really badly.
May 3
Yesterday was a hard day for me, and if I had thought about it, I could have told you back in 1993 that it would be a hard day for me. My Dad died on May 2, 1993, after having been sick for all of my adolescence. He died just weeks after I turned 18. It’s amazing that my brother and I even came to exist at all, because our Dad first had cancer when he was 26, lost his left leg to it, and according to his doctors, was not supposed to survive. They told my poor Mom and she kept that information to herself. She didn’t tell him, and he survived… He was such a consummate rules-follower that my Mom is sure that he would have died back then had she told him his prognosis. However, he survived, and five years later, after the radiation from his treatment had theoretically left his system, my parents had me, and then my brother. However, his cancer came back 17 years later, and he got worse and worse for years as we were growing up, until he passed away at age 49.
A few weeks ago, I turned 49. Within a few months, I will pass the age my Dad was when he died. Ignacio is 49; he will turn 50 in August. He had his strokes at pretty much exactly the same age (like to the week) that my father was when he died. I always knew that 49 would be difficult for me; also, that it was a big deal for me to be with someone who was 49; and May 2 has always been difficult for me. But to have all these things converge like this. It’s overwhelming.
Ignacio needs so much support right now. He still has no memory and so when I’m not there, he is really lost. He doesn’t know when I’m coming back. He doesn’t understand much of what people say to him. He pretty much refuses to ask for help, as far as I can see. I tell him over and over again to squeeze the call button if he needs to pee (and we rehearse what to say in English), or needs something else. But I don’t think he’s done it once. I am spending more time with him than I can, because I feel terrible at the idea of him being alone. But I’m coming home so exhausted that I’m useless.
And while he is doing really poorly with memory, he seems to be doing better with self-awareness. He’s much more aware of the limitations that his body currently has, and it makes him really sad. He’s cried a lot recently, including after we watched our performances from El Marabu from February 20 of this year earlier today. He watched himself dance, and kept saying, “Impresionante.” And then, afterwards, he cried a lot.
I tell him over and over that we are going to get back there. I commend him over and over for how hard he works in his therapies. (Some family members of other patients point to Ignacio and tell their loved one, “You need to work more like him. You need to do that if you want to get better.”) I tell him how far he has already come, how he is improving every day. But without memory, it’s hard to know where you are. If you can’t remember what things were like a week ago, how do you know that they are really better now, and then how do you really hope that they will be better one week from now? Despite how impassioned and emphatic I am, what I am saying is just words. And then he forgets them, anyways.
Everyone who wants to visit Ignacio, please reach out to me so we can schedule. He’s gotten to the point where visits really help, most especially with people who speak Spanish. They also allow me to skip out to a cafe and do one or two hours of work on the festival, which is huge. When I am deprived of the ability to work, it’s amazing how much I can get done in 1 or 2 hours.
Today, I was trained in Mirror Box Therapy, and we already did a session together, Ignacio and me, this afternoon. Here’s how it works… we have a mirror on a stand. Ignacio sits in his wheelchair with a table in front of him. The mirror sits on the table perpendicular to his body, just in front of the inside of his right shoulder, so his right arm and hand are hidden behind it. I put on tango music because the 60 beats per minute rhythm is ideal for the exercise, and give him his first movement, rotating his left forearm and hand from the elbow to face up and then down, each movement finishing on a beat. He watches his left hand and arm doing the movement IN THE MIRROR, and its reflection and placement MAKE IT LOOK LIKE IT’S HIS RIGHT. As he watches what seems to be his right arm doing each movement, his brain is activating mirror neurons and rewiring pathways to be able to direct his right arm to do those movements. If he gets distracted and looks away, while continuing to do the movements, the exercise is useless; he’s just doing stuff with his strong arm. But when he can keep his focus, keep looking in the mirror and tricking his brain into thinking that it’s successfully directing his right hand, then the magic happens. We have five exercises we have to do like this, for 5 minutes each (i.e. two tangos each), every day. We take a break after each exercise, and you can see that the exercise required enormous internal work, because when he breaks concentration, he has a look of utter exhaustion on his face.
I have to say it again: it’s absolutely extraordinary how hard Ignacio works. When we were still in the hospital, and it was a question of staying still and not pulling out tubes, etc., he was a total rebel. But since we got to rehabilitation, the rebel side of his personality has largely disappeared. Instead, he works earnestly, purposefully, tirelessly, and doesn’t get in any kind of a huff at people telling him what to do. Even when that person is me, which is obviously harder for anyone–having their partner tell them what to do. If it were me, I think I would be in a big rebellious huff all the time. In fact, I think I secretly live in a big rebellious huff. Haha! But Ignacio is beyond and bigger than that. He is taking complete and total advantage of the opportunity to improve. I hope that his memory will start to come back so that he can recognize the fruits of his efforts and feel the sense of pride and accomplishment that truly are his due.
May 5
I have been feeling like I was getting to the very edge of my ability to cope. The pressure of the festival, the plan for Ignacio to move directly home when he will still need sooooooooo much help, the fact that those things are set to coincide on the same day… The exhaustion of the past two months. The fact that there is no such thing as a day off. And then, in addition to everything… Ignacio’s sadness. Every day, something makes him cry, and when he cries my heart breaks into pieces.
One thing I really worry about is that when I’m not there, he doesn’t remember that I’m coming back. Today, I asked him, and he said, Yes, I know you are coming back. I remember. Oh, what a relief. I was like, you remember? He’s like, Yeah. So I was like, you remember my name too? Meredith. You remember your name? Ignacio Santiago Ondartz. You remember your birthday? 16 de agosto de Mil novecientos setenta y cuatro. You remember where you were born? Mar del Plata. I was like, Wow! This is the first time you’ve remembered all of that, all at once. He was like, “Really?” And I was like “Yeah.” “Wow,” he said.
We’ve been through a string of days in a row where he became very loquacious. Talking with visitors in full sentences, perfect grammar, totally appropriate (and perfectly Ignacio) expressions… but using words that didn’t make any sense. Total aphasia. It is really wearing… especially for me. Spanish is not my native language, so I’m always leaning in, struggling a little bit to understand, even when the words make sense. When the words don’t make sense, I lean in and lean in and lean, and my brain hurts from trying to make sense of what is either nonsensical, or perhaps is so steeped in metaphor, such an unusual pathway to meaning, that my brain can’t keep up. The not-knowing is exhausting, at every level, from his language to his prospects to whether he’ll pee without a catheter. Oy veh!
I’ve been feeling like I was at my limit, but then yesterday, we had two visits from Mary and Jennine, which ended up coinciding. And in addition to being with Ignacio, they help me guide him through his exercises and also helped me with the festival volunteer schedule. And today, Ellen came and has dedicated herself to hugging Ignacio for the past two hours, so I could work. Knowing that someone is hugging him when he needs it has set me free to get stuff done and then go pick up Indian food for dinner. So I approached my limit, but I got some help, and I have taken a step back from the edge. Thank goodness.
Also the Phillies are in 1st place in their division and have more wins than any other team in baseball… so well, it makes a difference.
May 7
Ignacio is doing well, by all metrics. Yesterday, he walked in the Robot Suit for fifteen and a half minutes. And then, with helpers but no external aids (no robot, walker, cane or anything), he walked about 10 meters. He and I have exercises that we now do together outside of his therapy time. The Mirror Box Therapy that I described below, some exercises to help with his right humorous which is slightly subluxated due to the long period of not being able to use that arm in the hospital, and some strength and range of motion exercises for the whole right arm and hand. I use my strength to oppose him in a rowing exercise, and he successfully pulls me completely out of my seat. This morning, my back is sore from the effort. Muy bueno!
Yesterday, after three hours of therapy, a two-hour visit with my Mom, while I worked, and 30 more minutes of exercises, he ate a big dinner and was absolutely exhausted. I figured the chances of any big remembering were nill because generally his physical exhaustion equals more aphasia. But I had also noticed that we had gotten through most of the day without much aphasia. I asked him for the hundredth time if he by chance remembered the passcode to his phone. And I noticed that, instead of putting in long strings of random numbers, he was actually always starting with the same three now, and searching for the fourth. On the 3rd try… an absence of error messages. And the phone opened. I absolutely couldn’t believe it. After 2 months, we opened Ignacio’s phone.
You can write him messages, but he’s still not completely ready to interact independently. His vision is challenging… some double vision, some parts of his visual field where he can’t see… these things will a) get better, and b) he’ll develop strategies to navigate them. But it will take time. And the phone is a bigger visual challenge than other contexts. There are two settings to make things bigger: the font size and everything in general. I did both, but it’s going to be a while before Ignacio is a fluent phone user again. On the other hand, once he is, you and I will never stop receiving IG reels from him. So I am going to keep enjoying this cell phone-free period while it lasts. Please send him texts and voice / video messages as you like and we will read / listen / view them together.
And a note on messages: Ignacio remembers everyone and understands all information that comes to him. It’s finding words and concepts, and maintaining the thread of an idea long enough to get it out, that are huge challenges. We listen to and enjoy all your messages, but he can only respond to a small fraction. The responding is 1,000 times as difficult as the receiving. Thanks for understanding!
May 7 Night
Even when you think this situation has been hard in all possible ways, something new will happen. Today, Ignacio called his brother by accident. I came back from the bathroom and it took me a while to understand that the voice coming out of the phone was his brother’s (there were three other people talking in the room, and the TV on, so that’s why it took me a bit). I helped fix the call and we talked to Ariel for a while. It was great. It was the way things are supposed to be.
Until we hung up, and Ignacio asked me if his Mom was still living with someone. And I was like, Your Dad? And he’s like, Yeah. And I’m like… Oh my god, my love, I am so sorry. Your father passed away years ago. Tears, tears and more tears, like it just happened now, because for Ignacio it did. And then I started crying, because I also lost my dad, and it’s true that you never get over it. But to have it hit you anew like it just happened, it’s just the biggest nightmare.
The sight of Ignacio crying, it just tears me into pieces.
However, after that harrowing experience, I got a phone call from Scott Dehnke at Steffey Insurance. Scott has been fighting and fighting on Ignacio’s behalf for weeks now trying to get Pennie, the Pennsylvania insurance exchange, to allow Ignacio to buy private health insurance. Every time we seem to get close, another problem pops up. That’s why, when Scott called me tonight, told me that we were approved to buy, and recommended a certain mega-amazing Blue Cross Blue Shield plan that covers all the rehabs in the Moss-Magee network as well as Temple University Hospital, where Ignacio’s stroke follow-up appointments will be, and has a maximum out-of-pocket for the year of $3,100, I said, Let’s just do it. In an ideal world, I would have taken the plan to the social worker here at Moss to research, but I am so afraid that Pennie will change it’s mind and say we can’t buy that we just went ahead and BOUGHT IGNACIO HEALTH INSURANCE. He is enrolled, and it starts June 1. And we actually have 120 days to change the plan, if we find that we need to, so it’s not really a problem to jump in a little more blind than I would have liked.
Ignacio is covered. He can continue to recover in the U.S., if he wishes, or if he wants to return to Argentina, he can. Because his memory is so poor, I’ve described the general outline of all this to him many times already. And once again tonight, I said, you can choose. If you want to return to Mar del Plata or Buenos Aires, you can do that, or we can do that together. If you want to stay here, I told him tonight, now you have that option, because we have the health insurance that’s going to allow you to keep getting the rehab you need, keep having all the medical appointments you need, keep supporting your recovery. Tonight for the first time, he responded when I described the choices… When I mentioned returning to Argentina, “No.” I continued, “You prefer to stay here.” “Yes.” Wow!
May 9
I am someone who usually does 8-10 hours of admin work and then starts teaching for the day. The obligations I have taken on are consistent with that kind of time commitment, especially with the festival around the corner. In the current situation, I can usually do one hour of work per day, sometimes two. And sometimes those hours are eaten up by the administrative work that Ignacio’s situation requires: working out insurance, arranging to change the studio kitchen into an efficiency apartment where Ignacio can live, and researching wheelchairs and other medical equipment, among other things.
I am deluged by people on all sides asking me to do more, and I literally can’t. I am going crazy.
While no one knows how much Ignacio can recover, everyone agrees on a few things:
The first six months are absolutely crucial. All the gains he can make in these early days set the parameters for what he can eventually regain with years of work.
One of the biggest indicators of how much a person will regain is how much support they have. Since Ignacio has no family here, and his lifelong friends are back in Argentina, I have to step up much more than a partner of 15 months normally would.
Ignacio’s progress up to now is extraordinary. Three weeks ago, it was a victory when he maintained a standing position with support for 40 seconds. Two weeks ago, he could walk short distances with a contingent of 4 people supporting the experience (supporting him, shadowing him with a wheelchair, etc.). Yesterday, I was trained by his physical therapist and he and I walked together 40 meters, closely shadowed and spotted by the therapist, but doing the work of walking together as a team. My shoulders and arms are sore today from the effort (it was a big effort!), but we walked together, and what is that? That’s tango.
Not to mention that it is a miracle that he survived and has a chance to progress from standing to walking to… let’s see.
Thank you again and again to everyone out there who reads these updates, prays for Ignacio, imagines him back in the milonga, dancing like himself, visits him, brings us food, and supports him and us in any other way. It is absolutely certain that we wouldn’t have gotten this far without that towering amount of love and support.
May 10
Both Ignacio and I are wrung out, him from rewiring his body and brain, and me from everything. In addition to all his official therapy hours, I now have many exercises to do with him outside of his therapy hours (suggestions from Occupational Therapy, mostly). He has gotten so strong in a sort of rowing exercise, where I oppose him with my (supposed) strength, that we basically can’t do it anymore, because he sends me flying across the room. We’re doing so many exercises in our free time, and having really nice visits with many people, and as a result, we hadn’t gotten in bed together in days.
Today, I arrived at noon, after driving to the Goodwill Home Medical Supply Store in Bellmawr, New Jersey, and buying him a wheelchair, an evacuation chair (in case he might be able to visit the festival - it’s good for stairs), and a forearm cane. Buying a wheelchair for your dance partner is not emotionally easy, and combined with hearing Schubert’s exquisite posthumous piano sonata in B-flat Major, D960, on the way back, I criiiiiied. Arrived to eat lunch with Ignacio, and just couldn’t take life anymore, asked the Nurse if he (meaning we) could take a rest.
The nurse helped him get in bed and we slept two hours in each other’s arms. What a difference it makes. It reaffirms our connection and will to continue forward on this really difficult road, and it was a much-needed rest. He woke up with a dream very present; he started talking about River and Boca. I’m like, You dreamed about soccer, about River and Boca? He’s like, yeah. I said: You were for River in your dream, right? And he’s like, No, of course I was for Boca. And I’m like, that would explain why you’re not improving as fast as you could! Wow, that sounds terrible, but it was fuuuuunny. Andres liked it too when I recounted it to him later. He said that it’s scientifically proven.
While I napped, I received too many customer service requests to ignore and I told Ignacio I needed to go to the cafe with good internet to work for just one hour. When I left, he was in the bathroom with the nurse, and she was going to put him back in the wheelchair afterwards. I did a remarkable amount of work in one hour and came back, and saw something strange… Ignacio’s feet flopping around, mostly in, but also out of the hospital bed, with the rails pulled down, and the protective tent that keeps him in left totally open. I ran in, and was like, what is going on here? I called for the nurse’s assistant, and I was like, You couldn’t have left him like this!
And she was like, no, I put him in his chair and tied him in. And I even came by 10 minutes ago to test his blood sugar, and he was safely in the wheelchair.
Apparently, Ignacio AKA Houdini, subsequently loosened the chair restraint, and lifted each knee up to his chin, one by one, to free the leg from its restraint. He can stand up without much help, but falls down immediately without assistance. So he must have stood up and immediately shifted his weight to fall down on the bed. And then shimmied his way up to a largely normal position in the bed. He escaped his chair and accomplished a “transfer” on his own, and fell on the bed, instead of falling on the floor and hitting his head. Dear God! He is too much.
And you know, he had no memory of any of it! That’s what’s so difficult. All the learning you would hope would happen after explaining to him what he did and why it’s so dangerous… the learning doesn’t happen because he forgets everything. You should have seen his face there, smiling up at me from the bed, while I, and then the nurse’s assistant, and then also the nurse, all stood there trying to understand what might have happened. He was just happy and comfortable to be lying down and bemused by all the interest that that fact was generating. He was smiling at us like we were the ones who were crazy, to all come around and stare down at him in bed, clearly angry, but all unable to suppress a chuckle as well. Oh Ignacio!
When I was about to leave tonight, I said, Before bed is a great time to set intentions, because your brain, your body, and maybe the Universe or God or whatever you believe in, may work on them all night long. He set the intention that he remember better, that he remember his body, he said. And that he remember his life. May it come to pass.
Lastly, we had a great visit from Maria and Eric, and their son, Sebastian, this evening, complete with Maria’s unbelievably delicious homemade empanadas. Yummmmmm!
May 12
We’ve been making huge progress toward “life after all this.”
On Wednesday, I had my first “family training session,” where I started to learn what I will need to do to help Ignacio. I was able to ask a million questions about equipment, space preparation, and more, which really helped me.
On Thursday, Caleb Schodt, our contractor, came and started helping getting everything ready for Ignacio: installing bars next to the toilet, in the shower, etc., fixing all the gates and doors in the back part of the studio, which have never worked right, so we can come and go from that side, where there are no stairs.
On Friday, I bought a wheelchair and more, as previously mentioned.
Today, I bought us a bed, box spring and mattress (the rail system that will help keep Houdini Ignacio from escaping the bed unauthorized requires a box spring). I also bought a gift for Ignacio, a super-comfortable reclining chair that operates with a motor. It actually has a setting to stand you all the way up, which he doesn’t need, but it was the prettiest, most compact recliner, so now he has that feature. (The plan is to unplug the chair when I don’t want him to try to get up, haha.) He has suffered so much discomfort… what he endured in intensive care, being intubated two times for a total of more than 2 weeks, having a drain in his brain, and now, the absolute exhaustion and sometimes pain as he strives to regain use of his body and mind… I just want him to have somewhere really comfortable to be when he is not actively doing rehab exercises. For that reason, the recliner.
You know me, when I can actually make a plan and move forward on it, I feel MUCH better, soooooo relieved.
Similarly with the festival… we had a 6-hour work session yesterday with nine volunteers, and got things much, much more under control for the festival. Also, got to enjoy the Kensington Mobile Sculpture Derby when it passed by the studio.
We’ve enjoyed so many wonderful visits recently, including from Hanna yesterday, who brought homemade flan (INCREDIBLE), from my Mom today, who brought brunch, and Ellen right now, who brought cookies. Ellen’s visit has allowed me to go buy a bed and also work some. Right now, our good friend Gustavo Rember is flying from Buenos Aires, and will see Ignacio on Tuesday. And on Friday, both Ariel and Monica arrive. What a blessing!
May 13
Interesting things are happening with Ignacio’s memory, identity and sense of self. It’s hard to explain what it feels like to be with someone who is simultaneously a few different people: sometimes he is hugely aphasic and doesn’t know my name (or his! just yesterday, he told me his name was Juan Carlos Peron!). But he’s also making fun of his aphasia, and will purport to not know something that he absolutely knows. We were talking about a particular intimate moment from early in our relationship yesterday, and he looks at me with great sincerity and says, “Was that you?” Before cracking up at his joke.
The aphasia jokes are like his dying jokes. Now that I’ve recounted to him his bad behavior joke of pretending to die, letting me freak out, and then “coming to” laughing, he thinks it’s even funnier and does it more often, G-d help me. Yesterday, when he suggested that it might have been someone else in that intimate moment, I got ruffled / pretend angry. And he responded with desperation. He started crying and kept crying for a long time. I comforted him all the way through without really understanding why he was crying. I always ask him to try to tell me, even to say one sentence about what he is feeling. But expressing what he is feeling (be it physically or emotionally) is a huge challenge for him. We are working on it, but haven’t gotten very far yet. So he’s crying and crying. And all he can say, once, is how much he loves me. It wasn’t until after I left the hospital that I realized: he teased me and got me riled up on purpose, but then got terrified that he would lose me as a result. He was like Ignacio of old who teased me constantly, and adored getting a rise out of me, but also another, more dependent Ignacio who needs me to help him navigate this situation and the completely changed world that he finds himself in, and can’t afford to lose me.
While it sucks that he is in fact dependent right now, I find these flashes of old Ignacio to be very encouraging. In the past 24 hours, there are more of them, and it definitely seems like his memory and sense of self are in the process of taking a step forward. I ran into his speech therapist in the hall on my way in, and he told me that he had noticed the same things in his session this morning.
Today, I arrived thinking I was going to find Ignacio taking an after-lunch nap, but instead he was just getting back from somewhere. I asked where, and the nurse said, his test! What test? I knelt down in front of him and asked if he was ok, and he was like “I think so.” At that moment, I noticed that he was shaking, pale, and his face was contracted with worry and fear. I asked what the test had been and the nurse said that the doctor would come talk to me.
Meanwhile, Ignacio kept telling me: I was in a different hospital. He felt like he’d been taken somewhere completely different and had been kept away a long time.
I managed to find out only that he had had an x-ray in the same building, and I told him that. I said that it looked like a completely different space, but it was the same building. However, it was completely inappropriate that they had taken him anywhere and done anything to him without explaining it in his language.
After Ignacio was somewhat settled and no longer as scared, I left a loooooong message for our social worker at Moss asking for a little more cultural and linguistic sensitivity. Ignacio is trying to regain his language, memory, and sense of self, and it’s totally unfair to subject him to that kind of disorientation. While it probably (hopefully) doesn’t set him back, it’s just cruel to put him through that kind of fear. If they are going to take him for a medical procedure, they need to bring a translator to explain to him what’s going on and why.
I told the nurse this, and when the doctor came, I explained again. And Dr. Ahmed said, You’re right. It’s completely inappropriate what happened. He needs to have a translator to explain what is happening and why.
I really like Dr. Ahmed, the resident this… month? He is generous with his time, gives us a lot of really helpful information, and is very present.
In the course of two visits this afternoon, I found out that
Ignacio had complained of his right hand hurting a bit, and that is why they sent him to x-ray. (Yay that he actually said something about how he was feeling; boo that it turned into a traumatic experince.)
They needed to make sure the pain was not from a blood clot.
The x-ray turned out to be clear: no blood clot.
I think Ignacio feels comfortable with Dr. Ahmed, and after a whole lot of talking in English, and then me giving the highlights to Ignacio in Spanish, I asked if he had questions for the doctor.
He asked how much strength he could regain on his right side.
The Doctor said that he couldn’t promise anything. And I was like, yes, I know you can’t make any guarantees. But are there people in Ignacio’s situation who regain everything? Yes, he said.
I translated that for Ignacio and then the doctor continued: But not as fast as you might be hoping. It will take a lot of work, over a long time.
He continued, it will be a lot of work, but when it comes to recovery, you have three big advantages. You are young. You were very active before the stroke. And you have a lot of support. He continued, You are very, very lucky to have the support that you do (gesturing at me). So what does Ignacio do? He avoids all eye contact with me and starts looking out the window, under his pillow, under the bed, searching for said support… before cracking up, taking my hand and thanking the doctor.
May 16
I’ve had a couple challenging days. The impact of Ignacio’s disorienting, traumatic x-ray experience (see below) lasted a couple days. He was way more aphasic, barely ever making sense, and he kept breaking out in desperate tears. His misery makes me feel desperate. And I’ve been really desperate.
BUT I really enjoyed our milonga last night, with beautiful music by DJ Gustavo and lots of wonderful tandas. And even though I couldn’t sleep from worry, things improved from the time I got here to Moss today.
Ignacio has a Spanish-speaking nurse for the first time today! Gloria La Española. What terrible luck we had that she was out of the country taking care of her mom during the first 3.5 weeks of his stay, and leaves tomorrow on vacation. We won’t see her again! But it makes such a difference for him to experience care in his language. Care that is mixed with humor and fun. So much easier to access that magic without the language barrier.
And today I had my second “family training session” to get ready to take care of Ignacio when he comes home. Wow, what a difference a week has made. He is much more stable in his standing and his “transfers” - the series of well-planned movements that we have to execute to transfer him from wheelchair to bed, or wheelchair to shower or to toilet. It requires patience, clear communication, doing each thing in time and not rushing to the next, and a lot of trust, coordination, and care to protect both one’s self and the other. Everything I’ve learned from dancing and teaching dance comes into play.
And after all of that, WE WALKED. We were spotted by the therapist but were much more independent than last week. He has progressed remarkably in one week. He’s much more stable, much, much better at advancing and standing on his stroke-affected right leg. And I could perceive a difference in his concentration. From the first physical therapy session in intensive care, what I saw was that it took ALL OF HIS CONCENTRATION AND WILL to engage in whatever the exercise was, be it standing with support and not passing out, walking in the robot suit, or walking with a helper and a cane. Today, I could feel him really focusing, but it seemed like he had a tiny bit of focus left over to listen to my cues, or make a joke. Like it’s a huge effort, but not as overwhelmingly huge an effort as it used to be.
And so, we arrive to the news of all news. On Wednesday, May 29th, Ignacio will return home to live with me at the studio. After more than 2.5 months, he’ll be home. Ignacio’s very, very generous social worker and medical / therapeutic team here gave us the option of anywhere between May 24 and May 31. Ignacio and I were able to talk it through and decide to go with May 29. We’ll have a milonga in the studio that night. I imagine that Ignacio will be completely exhausted from the move, and he might just lie in bed and listen to everyone, but he’ll be there. And as time goes on, he’ll be able to participate more and more.
May 17
At the beginning of all of this, I took so much to heart everyone’s exhortation to “take care of yourself!” I got up each morning and did 20 minutes of yoga, or a short ballet barre, or even occasionally, an aerobics class. I managed to eat three meals a day, and not in the car on the way home. It’s gotten REALLY hard to do those things for myself 2.5 months in. I feel discombobulated in the extreme. Too much stress and worry for too long with no relief. And a festival.
Ignacio’s brother, Ariel, arrived today, thank goodness. He is getting to know a whole new Ignacio. The one he left on April 9 in intensive care is long in the past now. And now, there’s an Ignacio who is just a whole host of people. Sometimes really fluent in his communication; sometimes completely asphasic and impossible to decipher. Sometimes happy and joking with everyone; sometimes desperately sad and crying inconsolably. For me, it’s one thing to be with all these Ignacios when I am just there in the moment. But when I have to be more in the real world, preparing the festival, preparing for Ignacio’s return here, it’s hard to accept. The mind keeps searching for certainties: he’s going to be LIKE THIS, he’s going to recover (or not) to this extent. But Dr. Ahmed said it best today: there is no one on earth who knows what Ignacio is going to be like six months or a year down the road. All we can do is do our best - his doctors and therapists, and all of us supporting him. All we can all do is do our best, and he will recover to the extent that he can.
It’s funny he used that language, because from the first minutes of this crisis on March 9, I told myself: all you can do is do your best. You can’t save him; you can’t control the outcome of this terrible situation, but you can do your best. That is what I have prioritized at every moment. Doing the best for Ignacio, giving him the greatest support I can, and the best chance to do the best he can.
I guess now, preparing to spend 10 days making the Philadelphia Tango Festival happen, I feel terrible, because for the first time, I won’t be primarily dedicating myself to doing the best for Ignacio. I won’t be able to be as present with him, spend as much time with him, connect with him as much. Ariel came here to cover for me, to be Ignacio’s main person throughout this time. But I feel terrible.
Without being able to articulate most of this, I wept in Ignacio’s arms tonight. And so he started crying as well. I mentioned “La Viruta,” and he didn’t remember it. Not as a place where he spent a huge part of his time, nor the specific place where we fell in love, which felt to me like being struck by lightning. I don’t understand. I don’t understand how he could remember La Viruta a month ago, and not now. I don’t understand how this can all be so completely non-linear. If he remembered La Viruta before, if he could tell me last week which of Lucio Demare’s singers was responsible for our falling in love (Quintana), then how can he not remember today? If I am frustrated, he is much more so. He said, No me acuerdo, in this general way that was like, I really don’t remember anything about anything. It is so heart-breaking.
And also, my egos rails against it. How can he forget all these beautiful experiences that I’m trying so hard not to forget now myself? What will I do if he doesn’t get to a place where he can start laying down new memories with me? Could I commit to live in this strange moment-to-moment limbo forever? Even to ask the question feels like writing him off. How does one maintain hope, while being realistic? Even the word realistic feels like a betrayal of him. As Dr. Ahmed said, no one knows what is realistic for Ignacio. All we can do is do our best, which requires adhering to hope. I guess this is just a huge lesson about learning to hope.
While I have no idea to what extent his mind and memory are going to recover, I feel pretty absolutely sure that we will dance the basic step before the end of the year. I know we will. And that is a lot more than I could have imagined two months ago. So there’s that.
May 18
Today, we basically completely set up the Lithuanian Music Hall for the festival. There’s more to do, as there always is, but it’s extraordinary how much got done. Monica supervised the space set-up. Karen has been helping strategize the registration systems, and we had 14 other people working. No wonder it went so quickly! Also, I survived my live interview on La 2x4 in Buenos Aires with Claudio Peyrera. (And please tune in this Tuesday morning, when I’ll be interviewed by Luis Tarantino on his legendary program, El Arranque, on La 2x4 around 10:30 am ET).
Ariel was with Ignacio all day, allowing me the freedom to do what I had to do.
By the time I arrived to Moss at 6 pm, I missed Ignacio something fierce. It’s not just that I feel bad about being away from him, it’s that I miss him so much when I can’t see him.
Before, I felt terrified about his coming home, afraid that I couldn’t take care of him. Now, with the two family training sessions done, and getting to feel with my own hands his progress, I am getting really excited for him to come home. I say “feel with my hands,” because it’s literal: he used to need physical help to reach a standing position, and now he can coordinate it easily himself, if he has a bar to hold with his left hand. He used to need X amount of support to not lose his balance forward while walking, and now it’s less than half of what it was a week ago.
Our relationship is very kinesthetic and it is healing for me to get to participate with him in movement. And the more I think about his pathway to healing, I feel that the pathway is also kinesthetic. As he regains his capacity for coordination, movement and balance, I think his mind will follow. I think that’s who he is: an Ignacio who can’t dance milonga is an oxymoron, and perhaps that’s part of why he has trouble recognizing himself now. Each step he takes back toward something of the physical mastery that he used to possess so easily may make it easier for his mind to catch up to his current circumstances.
Will he be able to dance like before? Maybe, but I believe it will take years, perhaps many years. However, I think that we both love tango with our whole beings and that just dancing will bring him fulfilment. As for myself, I would be happy to dance a million basic steps in a row with him, or to just walk together to the moon and back. I would have no problem with either of those things.
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