Our Michael @ourmichaelp - Tumblr Blog

November 12

Six months ago today a friend and I were dodging goslings on Memorial Drive with our bikes, heading to the Esplanade. It was a morning warm enough to anticipate sweaty summer cycling.

We pulled over onto a dock just beyond the Hatch Shell to sit for a bit and watch the sailboats. A red-winged blackbird perched on my front tire and I joked with my friend that it must be challenging me to a race. I took a picture of the blackbird. My friend and I caught up on the latest in each other's lives. The garage where my car was being serviced called to say it was ready. Eventually my friend and I biked home, stopping at Petsi's first so that I could pick up some muffins for the guys at the garage.

At home I showered, got ready for work, and chided Michael publicly in our social network about my inability to figure out how to get my Al Green CD to play through the vintage Marantz receiver he recently purchased. A silly situation and, as usual, the joke was on me, the girl who didn't remember how to turn a button on the receiver to 'Aux.' Typical.

There was work in the afternoon, a break for supper where Michael and I exchanged updates about our days, and then more work. And then, at 7pm, with two hours of my shift left to go, the call came from the T/SICU of Beth Israel telling me that something very terrible had happened to Michael.

There were dark hours and days and weeks, and then there was healing and recovery. Enough recovery that Michael got to go home in July to continue getting stronger and healthier, and to resume his life.

So much has happened since I last wrote, a mix of old and new. Here's some of it:

Paul McCartney at Fenway.

The neurosurgeon wonderstruck five weeks after the surgery as Michael stood before him at a follow-up appointment. The surgeon's best case scenario predicted Michael looking as hearty three years from now.

Beginning outpatient rehab in Medford.

Lots of bad TV.

Resuming trips to farmers market, slowly but surely.

Discovering Yirrell Beach.

Hell Night with the guys.

Walking. A lot. Around our neighborhood mostly, but also around the Fells or Fresh Pond.

Grilling. Perfectly. Except for the BBQ that arrived from Texas, which almost set our building ablaze. Most meat was salvaged and eaten.

Art Beat.

Raised eyebrows.

Homemade flour tortillas.

Salsa.

Mistaking black beans for coffee beans.

Making music weekly with friends.

Ramen and kayaking adventure.

Trying yoga. (Pretty sure this is a first and last.)

Celebrating 44.

Humor.

Music and more music: Bill Janovitz/Buffalo Tom/Lemonheads/Eddie Japan/Scud Mountain Boys/Feelies/Superchunk/Obits/Rationales/Mello Bravo/Soccer Mom/Mike Gent/My Bloody Valentine.

Being plucked from the crowd for an onstage bit at Comedy Bang Bang. Ovation. Being asked for an autograph.

WWOZ for late Tuesday dinner music.

Celebrating lots with friends and family.

Volunteering at Somerville Grooves.

Solo bus rides. Solo walks. Solo time at home.

Next weekend: NYC for the WFMU Record Fair. Then I go back to work full-time, and Michael continues to ready himself for a return to work.

What I'm struck by now is how we each have our own story of what happened, and how Michael is starting to tell his whenever someone asks, "So what happened?"

Saturday, July 6

This picture was taken on July 4, heading back to Michael's room after spending some time with friends on one of Spaulding's breathtaking and currently underused patios that overlook the harbor. We sat and felt a continuous warm breeze, the water glistening and filled with bright white sailboats. It felt impossible that anyone enjoying the water could have had anything short of a perfect day.

Michael has two more overnights at Spaulding and then he's coming home. His outpatient care is going to start immediately, as in the very next day, at a facility in Medford that came highly recommended by Michael's neuropsychologist.

Michael is going to be discharged needing someone to be with him 24/7, so I spent time this week with a few of Michael's therapists getting tips on how to help Michael get in and out of our car, climb stairs, come up from a fall, and navigate curbs. Once Michael leaves Spaulding, all of the daily care provided by nursing staff will also cease, with none provided on an in-home basis. For the most part Michael is well enough to need very little of this kind of nursing care, but it will be a learning curve for both of us. In the meantime, I have been reorganizing and preparing our home to make the transition as smooth and organized as possible, and am thankful for friends who are helping significantly with this part.

Part of Michael's transition home involves a field trip of sorts, which is being arranged for tomorrow afternoon. I am going to take Michael back to our home for a few hours and maybe make a few short visits to our community garden plot and a shop or two in Union Square.

Earlier in the week when the case manager was going over the details for our visit home, she said to Michael, "You must be excited to go home." Michael replied, "I am, but I feel like I never lived there."

When I asked Michael a few weeks ago if he could remember our address he replied with the address we lived at before we bought our home. When I prompted him by saying the number of our current address he was able to finish it, but through conversations with him I know he doesn't remember what our home looks like or how long we've lived there. I showed him the few pictures I had on my phone from the blizzard and they didn't seem to resonate.

I have no doubt that once Michael is home his familiar ways of navigating it are going to come back quickly, just like his familiar ways of navigating friends and family and social situations, and seemingly small but important things things like reading the paper and playing his guitar have. Still, it's hard not to feel loss over what brought us to the home we have and the memories we've built there, like my annual desire to have the tallest Christmas tree in our home that can hardly accommodate its width, or all the canning we would be in the midst of.

We're two nights away from resuming our life together. It can't go by fast enough. I keep imagining that once I get him home I'm going to hold him relentlessly for days to make up for the past 8 weeks of holding him and comforting him surrounded by obstacles like alarmed beds with side rails, wheelchairs that buckle, walkers, and zero privacy. I'm certain we won't have that image in my head: the two of alone for an endless amount of time, finally, both exhaling over everything that has happened. Someday, maybe, but not right away.

Now that Michael is coming home, it's a good time to sign-off from this blog. It has been such an important tool, initially to share very urgent info about Michael's health, then to share his progress and recovery, all the while allowing me to digest what has happened and share some personal reflections with you. It has helped so much, so thank you for reading.

I am so grateful (I can't say this enough) to all of our friends and family and coworkers who have surrounded us during this time, and to all the people who have been following the updates and rooting for us from faraway.

The day of Michael's discharge is also the day of Paul McCartney at Fenway. Michael bought the tickets a month before the accident. Every time we talk about it he says he's looking forward to it, so we are going. Friends are driving us in, waiting for us, and driving us home.

Can you think of a better way for Michael to celebrate the first day of the rest of his life?

xoxo

Tuesday, June 25

I'm used to Michael handing a more comfortable pair of these to me at just about every show we go to, with instructions to not take them out. Once or twice he has reached to my ears during a set to make sure they're where they're supposed to be.

Today these were handed to me by a radiologist. Michael and I participated in a research study that compares information from functional MRIs to the information provided by doctors, therapists and family members regarding the conscious awareness of people with traumatic brain injuries. Participants are classified as unable to communicate because they are in one of the following states: vegetative, minimally conscious, or post traumatic confusional state. I didn't ask, but am certain Michael falls into the PTSC. The researchers are also interested in seeing if this kind of imagining can detect damage that other kinds of scans have not.

Though Michael and I will have a follow up to go over the results, the study technically doesn't benefit him directly; it's more about future treatment for people with TBI. This was a difficult decision to basically make on Michael's behalf, since he can agree to it but won't really remember he did that, or remember to anticipate the test. But my belief these days is that a little good will goes a long way and while it's a long time to be in the tube, this can help people. I'm sure Michael would agree. And the process is helping Michael, as far as having another avenue to explore his injury, and having more people included in Michael's recovery team.

For two hours Michael was in one of those massive MRI machines, the kind with the tube you think you're never going to fit in but somehow you do, having his responses to different visual and auditory stimuli scanned. He was amazingly patient throughout the duration, giving one thumbs up after another. In addition to accompanying him, and being by his side (hence the earplugs) I was asked to provide a three-minute memory that they recorded in advance and then played back to Michael during the scan. I believe he was going to be asked some yes or no questions about it, but it was too loud for me to have heard.

This was the memory:

Every Saturday we made it a point to go to the Union Square Farmers' Market. We'd always try to wake up early to beat the crowds, but could never quite get it together to leave the house before 11am, most often because you are a late riser!

At the market we'd say hello to a million people: Jen and Jed, Steve and Suzanne, Aaron and Jessie, and Lauren, and we'd bump into a bunch of library kids; sometimes I'd be invited to read stories to the kids and you would take pictures.

We'd always go to Drumlin Farm first and stock up on as much spinach, arugula, and carrots as we could. We'd also find some good habaneros there.

Then we'd go to Parker, the farmer who supplied us with tomatillos, and the tomatoes we'd can. Whenever Parker had a pile of tomatillos, you'd carefully pick through them and every week someone would ask you what you do with them. Your favorite answer was to make salsa, and you'd encourage them to roast the tomatillos for a different flavor.

We also really loved buying peaches and apples from Nicewitz. We'd make peach jam with some of the peaches, and sometimes I'd eat a peach or an apple on the way to Sherman Cafe, which bothered you because they weren't washed. At Sherman we'd both get iced coffees, and you would get your favorite frittata sandwich of the week. I would usually get an oatmeal cherry scone - my all time favorite.

We'd sit and read the papers and catch up with friends.

A little while after we left the study I asked Michael if he remembered that part of the study and he said he hadn't. I'm glad I didn't ask him if he remembered any of our Saturday routine at all.

Six weeks ago today.

xoxo

Saturday, June 22

Now that Michael is eating soft foods I thought it would be good to bring him a scone from Sherman Cafe and some iced tea. When I got to Spaulding I put them out with the papers I grabbed from our stoop, and for awhile I felt the faintest familiarity of our normal Saturday routine. We shared the scone, Michael thumbed through some sections of the Globe, and I started a knitting project a pal recently had given to me.

[Note to knitters: one completely fantastic thing you can do for a knitting pal going through a tough time - create a knitting care package. Mine arrived wrapped in some scrap fabric and contained one skein of gorgeous merino that was already wound, a cowl pattern specifically for the yarn in a k3, p1 rib, and a pair of circular needles. Very grateful, because I would never take the time to assemble this perfect distraction for myself.]

Eventually I logged onto Facebook to show Michael a picture from the show I went to last night. Our friends' band played at Radio in Union Square and wore their 'I *heart* Rock' shirts. It felt good to be there, hanging out with my friends outside of a hospital setting, yet still feeling Michael's presence in the air. Michael smiled when he saw the photo.

I handed him the laptop and he started to scroll through the feed, then it occurred to me that he might actually be interested in scrolling through his own feed. I closed my account and handed him the laptop to see if he might remember his username and password. Since he had remembered the code to both of our iPhones a few weeks ago this didn't seem out of the realm of possibility. And I had found out from one of the therapists later in the week that he is able to read, and read out loud, and I know he can type and write words.

I had looked away for a moment and when I looked back I saw him scrolling through what I thought was his feed. Was really happy about this, and of course posted this development on Facebook. After a few minutes I realized it was actually my account again, the default having confounded the process when he tried to type something out.

So I spent some time with him trying to ascertain if he could remember which email was his login and what his password was. Thinking it might be easier for him to write it out, rather than say it, I handed him a spiral notebook and pen while I went ahead and did some sleuthing myself. He was writing for some time, and when I took the notebook back, the picture above was what he had written.

How amazing/confusing/interesting is this? I mean, what is going on here? The repeating patterns, exclamation points, and arrows are like a secret code. Aesthetically it's so energetic, and beautiful. Like everything about Michael's recovery, there is so much to love about this picture and, at least for me, so much to be uncertain about. And yes, I'll add scared.

I'm thinking back to earlier in the week when his doctors were by on morning rounds and quizzed him on a few objects in the room. After exchanging good mornings with Michael, they would ask him to name certain objects they pointed to; the first was a pen, which Michael could say. When they pointed to the flatscreen TV on his wall he replied, "A monitor of some sort?" (Great answer, if you ask me.) A different time, one of the doctors asked Michael what day of the week it was (Friday), and Michael was unsure. Since I have lost all sense of time, I wasn't surprised, and the doctor tried to hint at it by telling him it was the end of the week. Michael still paused. When Michael looked at me, I asked, "What do people mean when they say T.G.I.F.?" He said, "Friday." And I told him yes, and that it was Friday.

But if you ask him what happened yesterday, he's not going to remember. And if you ask him if he likes tunafish, he's going to shrug his shoulders as if to say sure, why not? But Michael hates tunafish. And sometimes, when you're sure he's sure he knows a word and says it, it will come out garbled. August sounded like 'eleventy,' earlier this week, and on Friday I think he referred to his hands as handles, when one of his physical therapists asked him what they were called. But, he can say his last name now, when he couldn't find a way to say it a week ago.

Why am I writing all of this? When we see him now he looks the best he has since the accident. Everyone will tell you he looks just like you remember him. And he does. He can play his guitar. He can say hello, and ask you how you're doing. He can get his sense of humor and sarcasm across. He can say to me, when I sleep over and crawl into bed with him for a few stolen moments, "No, don't go. Stay. Stay," and hold me just like he would at home.

But, underneath the surface of all of this there are still so many disconnects that are trying to find get themselves right again. And it is both completely fascinating and terrifying to be exposed to all of it. So when I feel that pang of normalcy over a scone, and then read what Michael's written in the notepad, it's like I'm experiencing firsthand the analog, scroll and caps process that's bringing him back. He is so amazing.

xoxo

Currently sitting in Michael's room while he plays his guitar. He's got an audience of family and friends tonight, and we're all just sitting and hanging out while Michael provides us with some background music. If only they served beer here.

Today was Michael's first full day of meals: breakfast, lunch, and dinner. As long as he eats about half of each meal, he does not need supplemental nutrition from his feeding tube. Seeing what passes for actual food in a hospital setting, you can imagine the challenge of eating 50%. For example, his dinner last night included a styrofoam cup of chocolate ice cream which I'm pretty sure didn't have an ingredient that exists outside of a chem lab, but included a preservative nonetheless. Oh, and it was completely melted.

There are some things worth compromising, but awful food is not one of them. So I did what I could, quickly, and went to Whole Foods today to try to find more wholesome versions of things like fruit cups, pudding, applesauce, and yogurt, which is now stored in the refrigerator in his room. I might not be here for all his breakfasts, but I can keep an eye out for lunches and dinners.

I sat with Michael while he ate his dinner tonight. He was sitting in his wheelchair and I was beside him when he suddenly got up, unannounced, and headed for his bed. For someone who has only been walking during PT sessions a few hundred feet at a time, he was lightning fast as he made his way for the bed, where he sat and finished his meal. He usually has a restraint on his wheelchair to keep him from suddenly doing this kind of thing, but I had removed it earlier in the day with the understanding that I would be the watch keeper - a job I find myself failing almost every time. But in a way, I'm glad. It was great to see him get up so confidently and purposefully. And he ended up doing it again two more times, giving everyone who witnessed it in the room a tiny heart attack.

The picture above is of one of the disks I picked up at the radiology department at BIDMC yesterday. His doctors at Spaulding were asking for scans to see the damage from the accident, and what his brain looked like pre- and post-surgery. When I had them in my hand I couldn't help but think how everything of any importance in my life, and in Michael's recovery, was contained on the two disks I held in my hand. It's amazing how small things contain such significance - I think about this a lot when I'm recalling the million tiny, important, things of our past that have made our life together what it is, and why I love Michael so much.

It's been five weeks today. Michael is doing incredible work at Spaulding. There is so much to look forward to in his recovery. And still. Why? I'm not sure I'll ever get over why such a terrible thing happened to such a good person.

xoxo

Part of Michael's team at Spaulding includes a case manager, who I met with for the second time yesterday to get an update on the progress Michael's team feels he's made after his first week at Spaulding.

The update began with the case manager telling me the team had, "wonderful things to say" about Michael.

Their overall picture: the goal to have Michael discharged from Spaulding to home still looks good, and they have already extended his stay from the 5th of July to the 8th or 9th. It is still being recommended that I keep the concept of a stay at a skilled nursing facility in the back of my mind, which I decided is something they have to say to me just so it doesn't come as a devastating surprise should it need to happen; basically I listened to that part and quickly dismissed it, but it's good to hear because in our situation the health care coverage changes from excellent for his rehab at Spaulding to something less than excellent at a SNF. This is the kind of example where a case manger is vital, because that person also acts as a liaison between the health insurance company and me, and can also get the ball rolling as far as finding out about supplemental coverage for care in either situation we'll face when Michael is discharged. You know, the kind of stuff no one ever thinks about ever. Michael's case manager is aware of all of this, and I have yet to make one phone call to navigate any of this on my own. A huge luxury right now that allows me to focus entirely on Michael and our day-to-day.

Michael is coming off an anti-seizure medication given to him as a precaution after his surgery, and began taking a medication that helps stimulate responses from people with brain injuries. I mention this because it's good to note that Michael's recovery is three-fold: his brain's desire to heal itself, intense rehab, and pharmaceuticals.

Here are the steady gains and accomplishments Michael has made in just one week: he can walk up to 200' at a time with a walker and minimal assistance from therapists; I've seen him do this three times in one session. He was able to type on a word processor, "ONE, TWO, THREE, FOUR, FIVE. LOVE, MICHAEL. I LOVE YOU, CATHERINE." Yesterday he hand wrote the months of the year - a highlight for me, as I missed seeing his handwriting. He stopped at September, which he wrote twice, putting an exclamation point at the end of the second one. I'm assuming that meant I am totally done with this. And he is talking. When his nurse came into the room one morning to find Michael sitting Indian-style on the floor, having tried to get himself out of bed, the nurse asked him if he was okay and he replied, "I think I'm okay."

Michael's first word to me was, "sure," in response to me ribbing him about doing a five mile walk around the river after watching him walk so well in PT. This was also the session where they were working on his stability by having him stand up while tapping a balloon back and forth with a therapist; he would catch the balloon and try to snap it back to her like a rocket using the knotted part, which was one of many times he's shown us his sense of humor. Thank god. He also, finally, whispered, "I love you, too."

The talking is the tricky part for everyone right now. It's fantastic to hear him talk, but it's not coming back as strongly as the more physical parts of his recovery. This is not uncommon. I found out Michael has a new addition to his team, a neuropsychologist who by all accounts is renowned in his field, and he is going to work with Michael and his team to assess his kind of aphasia. This is a gift I will be eternally grateful for, especially since a therapist mentioned that he indicated he does not remember the accident (common), and doesn't remember what he does for a living (I have no idea how to not be worried about this.)

Finally, I brought Michael's acoustic to Spaulding this week. I was a bit of a wreck about this because it means so much to both of us, for different reasons. I couldn't imagine how to prepare myself for the sadness if I handed it to him and he either didn't or couldn't play it. Well, I was certain he could play it - we've all been watching how he reacts to music and how precise he is anticipating fills and solos. But still.

When we had a moment alone I handed him three things: his guitar, a capo, and a pick, and then I walked around his room pretending this was not the biggest moment ever. He picked up his guitar and played it for about 45 minutes. Beautifully. And I didn't say a word. I wanted it to be the most normal moment ever. I was thinking about one of my most favorite things Michael used to do, which was follow me around the house while he was playing his guitar. If I was busy folding and putting away laundry, he'd be standing around: by the washer/dryer, then by the bed, then near any cabinet I needed to get to. In my way, strumming. I would pretend to be annoyed. But sometimes he'd start playing covers, and then I would demand certain ones. We'd sing, me badly, Big Star's "Thirteen," Small Factory's "Versus Tape," The Beatles, of course, and countless songs by Buffalo Tom (which is the reason why I remembered the capo), "Porchlight" being a favorite. This, right here, is something I want to come back.

xoxo

It was a month ago today, almost to the minute, when I got the call at work at work that Michael had been in an accident and to get to the hospital as soon as I could. I was thinking I'd write about that moment and the hours that followed it for today's update, but too much good stuff has happened.

The best news of all time forever: Michael spoke today for the first time since the accident. When I was heading to Michael's room this morning, his occupational therapist stopped me in the hallway to tell me about his session. She had a huge smile on her face and told me they were working on something when a part of it came as a surprise to him. His response: "Whoa." I gave her the biggest hug, and she got teary-eyed. We've all been waiting for this.

Yesterday, Michael's father accompanied him to physical therapy where Michael took about 30 steps with assistance from the therapists. Yeah, that many. That was yesterday's best news of all time forever.

And I wasn't around for either!

But so insanely happy. Happy that his dad was with Michael for that milestone. Happy that he's doing so well at Spaulding and has therapists who are committed enough to ride these waves of emotions with me. Happy that his trach is out, as of yesterday, and is healing perfectly.

And Michael seems pretty happy. He was happy to say, "Okay," to our friend Chuck M., when he was asked how he was doing. (We all melted.) He was pretty pleased in his ability to chide me, along with my mother, by rolling his eyes and sticking out his tongue over my inability to carry a tune. And he's happy he's got his baseball cap back, which he left on the entire day.

When Michael and I had about two hours to ourselves today, we listened to Badfinger, as we watched each other, and then looked at the view from Michael's room until he fell asleep for a bit. When "I'd Die Babe" came on it struck me perfectly square in the heart and all I could think about was how much I love this guy.

xoxo

Michael was wearing this shirt yesterday, his second day of clothing I brought from home. And thank you, Brian M., for the awesome keepsake.

I thought about how great it would be to see Michael that first time in his own clothing, but it snuck up on me Friday and took my breath away. Basically Spaulding doesn't mess around. I assumed the clothing would be worn eventually. They had him dressed within 24 hours. Of course this is a good thing, but Friday was the first time I saw him in his own clothing, in a wheelchair, as he was dozing. So much about that moment represented what he's been through these past few weeks, and it left me feeling very heartbroken.

On Thursday Michael was assessed by the three therapists that will be working with him daily: physical, occupational and speech/memory. On Friday the team met, including Michael's doctor, nurse, and case manager, to develop a set of goals and a projected timeline for his stay at Spaulding. This was a big moment for me because I was going to find out if they were thinking in terms of weeks or months.

The case manger met with me later in the afternoon on Friday to go over the plan of action. It was determined that Michael's initial date of discharge would be July 5th. Their expectation is that he will be released from their care as not fully independent, and then explained to me what that meant based on his ability to perform certain functions with minimal, moderate, or maximum assistance.

Here are some of the goals they are hoping to achieve by the discharge date: Michael will be able to walk, but will need maximum assistance moving from the bed to a chair. He will need maximum assistance for tub/shower transfer. He will need moderate help grooming and assistance with things like buttoning. He will be able to talk, but will not be able to process in-depth conversations. He will be able to following discussions that go something like, "Let's go for a walk," and, "Let's put on your shoes." He will be able to express wants and needs with moderate cues; their example was that he might say that he needs a drink and I would offer him examples to choose from. My example, which isn't nearly as scary, is something like, "I want to listen to a record," and I would ask him if he wants to listen to Black Sabbath, Zeppelin, or James Brown.

Finally, their goal is for him to go home from their facility, and not to a skilled nursing facility.

I describe Spaulding as the Harvard of rehabs. They have rigorous standards and a high level of care. Patients who go to Spaulding are expected to excel in their recovery. Progress always needs to be present. And if they see Michael progressing faster than this initial assessment, there's a chance his stay could be extended to do more work with him. But, it would be foolish to assume his stay will be extended at this time, and for the first time I had a mental image of what is coming down the pike. I was forced to acknowledge that Michael will be discharged, "not fully independent."

I am able to write this out now, and process it much better than I listened to it being explained to me Friday. Let's just say, Friday sucked.

Until.

A friend I had called earlier in the day as I was falling apart (the same friend who guided me to telling Michael about his accident) drove from her job in Concord (she lives in NH) directly to Spaulding and then came home with me and stayed the night. We ordered Indian delivered, drank wine and talked, a lot, while the Bruins game was in the background. What finally rose to the surface was the best part: Michael could come home.

There was so much fear and worry and hard truths that came from my meeting with the case worker. And more than one path was presented: home vs skilled nursing facility. Just the mention of a skilled nursing facility was too much to process. Especially if it was recommended he go to a facility that specialized in brain trauma; none, incredibly, are located in Greater Boston.

But as I talked to my friend it became so clear: home is the only option. It's the only place I want him to be. And while he might come home not fully independent, he'll come home strong, and the things that will take time for him to regain can take that time surrounded by the things that make up his life.

Once this was acknowledged, it seemed the rest would be manageable enough: plan on the continued therapy happening in our home and make sure the house is adjusted to accommodate Michael's needs. Already there are family and friends ready to jump in to make this happen.

There isn't a better place than home for Michael to be healing.

xoxo

Thursday, June 6.

This is the view from Michael’s room at Spaulding. Those two white blobs in the background are salt piles. Michael and I used to live across the street from the one on the left, in Chelsea, in the mid-90s. Our favorite time to enjoy it - the only time to enjoy it - was at Christmastime, when it was covered in tarp held down with tires, and a large plastic Santa, in his sleigh, pulled by however many reindeer, sat on top. Lit, of course.

As I type this, two of our friends are with Michael, keeping him company and cutting out some photos I sent them earlier to have printed and put up on the bulletin board in his room. I didn’t have much time to find the perfect ones, but did find several where Michael’s personality seemed to shine, especially the lovable curmudgeon we’ve all grown accustomed to. There are photos of Michael with his friends, with his dad, and of his brother. And me, of course. There’s a picture of Michael playing his acoustic in our bedroom, before we upgraded our dresser, and another one that’s of two perfectly captured tacos just before they were eaten.

Michael had a very busy and productive day today. He met with all of this therapists: occupational, physical and speech. They’ve all spent time assessing him and tomorrow is the day they will meet together, with Michael’s doctor at Spaulding, and the case manager, to come up with an assessment, determine some goals, and take a guess at how long they predict he will be here. That last part is going to be helpful for me, as it will give me an idea of weeks vs months.

When I first walked into Michael’s room today I noticed instantly that I could hear him cough. When I say that, I mean as if he suddenly had speakers for this. Since he got the trach, I could see him cough and hear an internal wheeze, but I couldn’t actually hear a cough. In a way, this was music to my ears. Imagine, it’s been more than three weeks since I’ve heard anything from him. This was possible because they capped Michael’s trach.

What I didn’t know until about 2 hours ago was that he technically could try to talk now. The respiratory person who mentioned this said usually therapists begin by asking the patient to say, “Ahhhhhh!”

When we were alone again, I looked at him and asked him if he knew this. I then asked him if he’d like to try. Neither question elicited a response. It was as if I didn’t say anything at all. Not good, or bad. So I’m going to assume, for whatever reason, he’s not ready yet.

This tiny moment, however, did leave me a bit shaken. The uncertainty of his recovery is scary. And it’s hard to gather myself when some new thing presents itself. I’ve had three weeks to build confidence and get use to a way of communicating with him that represents the Michael I know. Any new bit of information, or new development, might change everything I’ve counted on up to this point.

After riding out the most dangerous moments for Michael, that first week, and turning grief into resolve, I thanked my Somerville upbringing for the will to be tough. No matter how committed I am to moving forward and thinking positive, a moment like this can exposes the fragility I’m capable of. I felt a lump in my throat, and I wanted to cry. But just as quickly, the Somerville thing kicked in and I gathered myself. There’s really no other way to explain it.

As quickly as the sadness happened, awesome stuff happened. I stopped checking email, texts and internet, and sat there with Michael for a long, long time. It’s my favorite time to be with him. I was able to wrap my arms around his head and shoulders like I was a donut and nestle with him, while he grabbed my arms and hugged me. We thumb-wrestled, and I lost more than I won. We listened to tons of music. I told him I loved him a thousand times.

And there’s probably more, but visiting hours are over.

xoxo

Spaulding. Today. Yay.

Just a quick update to say that Michael is heading to Spaulding today around 2:30. Got the news during his PT session, where Michael stood up, assisted, four times. And he was able to pivot enough to go from the bed to the chair with just the help of the physical therapists. Love when lots of great things happen all at once. Extra love the fact that I biked here today, thinking I wouldn't get my hopes up that today would be the day. Now I have the pleasure of abandoning my bike at the hospital to travel with Michael by ambulance.

So, so happy right now.

Also, he just tossed a ball at me because my face is in this laptop.

Goodbye!

xoxo

Three weeks ago today.

It is hard leaving the hospital when visiting hours officially end, and even harder leaving beforehand. Even if it's just 15 minutes. Last night, sometime around 6pm, I found myself completely alone with Michael, which is a rare thing. Near 7pm he was pretty sleepy, and I started to doubt whether it mattered if I was there or not. I called my mom and asked her to have some tunafish ready - I was going to stop by for dinner.

I was able to squeeze into Michael's bed for a bit, but he was out cold. The nurse came in, told me not to move, and did all of the things she needed to do around me. (Nurses are awesome like that.) Around 7:20, my right arm as asleep as Michael, I decided to call it a day. I got up, slipped on my clogs, packed my bag and started for the door. As I said goodbye to Michael he perked up and was wide awake. I put my bag down, took my shoes off, and crawled back into his bed.

As we lay together I got to tell him all the things that felt important, and because he could hear them, and respond to them, I'm happy to say I don't need to share the details with anybody else.

This is why I'm always reluctant to leave at the end of the day.

As for today, I had intended on offering the shortest update, basically sighing about there not being a bed ready for Michael at Spaulding. I really felt good about today. Now I'm feeling really good about tomorrow.

In the meantime, I did get a great update from Michael's nurse today about a million things I wasn't around for this morning. There is a desire to try to cap Michael's trach so that he can begin trying to talk. This is huge news, and coming earlier than I anticipated. It sounded like this might have happened already today, except they will need to give him a smaller trach, which is something that can be done in his bed. For all I know, they might do this later today, or not. It sounded like once the trach is capped and Michael can try talking, it'll be for an hour a day? This part seemed unclear.

The other thing to note is that he is still secreting quite a bit, so it sounded like that isn't the best time to try to get him talking. But his secretions are starting to become less. He is a little bit wheezy, so he's been given a nebulizer, which it sounds like he'll get every six hours for now. Hopefully that will just make everything respiratory a little bit more comfortable.

The other kind of great news is that they tried to get Michael on his feet today. Am so glad they're attempting these things while he's still at Beth Israel. While he wasn't able to stand on his own, the nurse and I were both emphatic that it's only a matter of time, especially when we've all seen how much progress he's made with us upper body and torso.

Finally, I was in touch with his eye doctor and optician yesterday. His optician is going to reorder Michael's frames that were lost in the accident and give him his most recent prescription, even though this will need to change at some point because of the retinal surgery. Am keeping my fingers crossed that this will offer him some clear vision until he's able to get another eye exam.

In other news, a friend messaged me to tell me a new Superchunk song was streaming live on NPR, I think? Thankful for the tip, I told him I'd put it on my to-do list with Michael, however he messaged me shortly after to say it was already down, and he missed it as well.

I told our friend we were all falling apart musically without Michael.

xoxo

Saturday, 6/1

This sign above Michael's bed makes many of us smile. His ID bracelet is on his left ankle because he refuses to keep it on either of his wrists. It symbolizes his determination, which is the foundation of his recovery.

If I had posted something yesterday, the focus would have been on Michael's PT session, where he was guided to sit at the edge of his bed using as much of his own stability. He did amazing. With support from one of the therapists he eventually got the hang of sitting upright by himself and remained that way for much of the session. He was asked to do tasks with his hands that he was very capable of, and a few things with his legs - like kicking - which were less successful.

One of the therapists mentioned how it takes the brain approximately 8 weeks to heal from the kind of trauma Michael sustained. That is not to imply that Michael is going to be recovered in 8 weeks; it means, I believe, that the actual, specific trauma: the swelling and bruising, takes that long to heal. What is miraculous is how far he has come in his overall recovery in less than 3 weeks. Yesterday was a great example of this, based on his PT session and responsiveness to the people around him. He has shown more signs of being able to recognize things visually, despite the fact that he is currently without his glasses. (This is a big thing for all of you who have asked me about Michael's eyes.) So as far as I'm concerned, he is already ahead of the curve.

When I arrived at the hospital today I was stunned to see even more improvements. He expressed himself the most he ever has by offering facial expressions and hand gestures that give us an inkling of what he is feeling inside.

Today, honestly, I think he felt frustrated. I watched him as every visitor remarked on how great he looked (myself included). He would put his hands up as if to say he couldn't imagine how that was possible. Believe me, it's something I struggle with on a daily basis. It seems absurd to constantly cheer all of this progress when less than three weeks ago things were 100% completely normal. But all of us, myself included, can't stop ourselves from telling him this because it is completely true. He is making remarkable progress, given this hand he has been dealt.

I tried to explain this to him when we had a moment alone. I also told him Spaulding was on the horizon (keep your fingers crossed for Monday, folks).

For someone who's mind is engaged and present, who can't walk or talk right now, who has tubes running all around him that he can't stand, who is at the whim of every single person around him, who is wearing hospital clothing, he is being remarkably patient. He hasn't shown anger, outrage, confusion or hostility. He is riding this part out as best he can, and I am in awe of him. I am also becoming fiercely protective about preserving his dignity. All of this is why rehab can't come soon enough.

What I'll keep close to my heart for the rest of tonight until I see him tomorrow: when he and I were sitting alone for a bit, he was in his chair and I was basically sitting across it, on top of him as much as I could be. I started playing Yo La Tengo's I Can Hear the Heart Beating as One. When I placed the phone on him so that he could hear it, he took it in his hand and put it up to his field of vision, and tried to focus on the image of the album cover. I left the phone with him for a long time after that, despite the texts that kept popping up, because I loved watching him with it, and I think he was glad for it, too, perhaps as a way to feel some sense of normalcy.

Now that Michael is responding more, it's important for me to mention and remember that much of what I think and say and write about is my interpretation of things. It could very well be that I'm wrong about some of it, or all of it. I'm going purely on guts and instinct and how I feel I know this guy. It's all I have for the moment, but I feel they're just as strong as Michael is.

xoxo

Thursday, 5/30

Spent the afternoon at the hospital today. Michael seemed pretty sleepy when I arrived, and I found out he hadn't yet sat up in a chair for a few hours. After spending some time with friends and family in the solarium, I stopped by to check in on him and he seemed pretty awake, enough so that we held hands and I played him some Guided By Voices. I then asked his nurse if he could be up in a chair for a little while since he was awake. The chair means so much to me, and others, right now because we've see how he can perk up when he's in it. Plus there's no need for him to be in bed all day, especially now where he's ready to do some rehab.

Once he was in the chair I went back in with our friend Nick and we three spent some great time together. Nick played a million songs - everything from the Pixies and the Kinks to Flying Nuns and Scarce - and I sat by Michael's side catching up with correspondence and playing around with Michael. Sometimes he'd hold my hand a bunch, sometimes he'd rest it on my knee. A few times Nick and I would watch him faintly tapping his fingers to a song. (Eeeeee!) Michael and I even thumb wrestled, and he won a few rounds - legit! it's nice to know he's still competitive.

While he still has a temp that can spike during the night, like it did last night, a few times, to 101, the nurses were able to get it down to 99 today and started him on a different antibiotic that he'll get once a day for a week. None of this should pose any problem for him moving on to Spaulding once a bed is available.

I decided today that I'm going to begin commuting back and forth to the hospitals with my bike. It takes just as long as driving, but I'm able to get some exercise in that I don't want to waste time doing when I could be with Michael. Plus it feels good to be back on my bike. Much love goes out to my friend who took my road bike and outfitted me to commute today. It meant adding a rack and a pannier that could accommodate all of the things I bring to the hospital, plus swapping out my pedals for a pair that could work with clips and regular shoes. This awesome friend met me at my house, biked with me to the bike shop, and took care of everything, in that helpful way where I didn't have to make any decisions. I am so thankful for this, and my friend and I were likeminded, I think, about how important it is not to let Michael's accident stop me from cycling.

Night 2 at home was helped immensely by dinner at a near and dear family's house in Somerville. Burgers on the grill, homemade coleslaw, delicious margaritas, cupcakes from Lyndell's. It was nice to sit and spend time with this crew and laugh for a little bit and get really, really sleepy.

xoxo

Wednesday, 5/29

During morning rounds, the surgical team's doctor lingered in Michael's room for a moment to ask how I was holding up. They all know I've been staying with Michael every night. I told the doctor I was okay, and knew to take care of myself. I told him I was going home for a few hours every day to do normal things, like a load of laundry. He said I needed to do more: go for walks, get back into a routine, etc.

I've been on two longs walks since the accident, and was glad for both, though each time I felt anxious about 1/2 way through. I was too far from the hospital and too far from home, and though I had a friend or my phone, I felt completely isolated.

I tried taking the doctor's advice and found a yoga class I could get to. I had been looking forward to yoga after two weeks of constant sitting. Not only was I looking forward to moving my body, I was also looking forward to the mindfulness that comes with yoga. At my usual yoga place we are always encouraged to set an intention at the beginning of class. I was prepared to set an intention to think about Michael outside of a hospital setting.

In today's class I wasn't asked to set an intention, not that it mattered. I spent most of the class doing zombie-like poses and feeling very tired. And empty. I couldn't wait to leave.

After class I saw that a friend texted to check up on me; she asked if I needed a visit or a hug. What I wanted right then was to scream and cry and smash things. She offered to develop a primal art therapy that would involve breaking things. Yet another reason why my friends rule.

When I got home I took a look at my garden plot, and the pots of things I've planted where we live. I spied the first strawberry of the season and took a picture of it. Normally this picture would be sent to Michael with lots of gushing, because how does one not faint over strawberry blossoms?

I can't send pictures to Michael right now. Here are a few other things I can't enjoy with Michael right now: hugs. Him asking me what record I want to listen to during dinner. Dinner. The first Union Square Farmers' Market, which is this Saturday. Battlestar Galactica. Sunday papers sprawled across the kitchen table. Annoying him.

In some respects the easy part is moving forward. He is alive, he knows I'm here, I know he loves me, and now I want to do everything I can to get our life together back. It's the biggest motivator. The hard part is living without the person I've had by my side for 20 years. We were really good at taking care of each other and enjoying the life we built together. There are a thousand tiny things that are missing right now. Thinking about them causes an ache I don't want to feel.

Michael finally got moved out of SICU today. He's in a 'step down' room in another wing of BIDMC until a bed opens up at Spaulding. Tomorrow? Friday? We don't know. I said goodbye to everyone in SICU and was able to hug all of the people, whatever their roll was in assisting us these past two weeks. Emails were swapped, thankfully, and I'll be able to share Michael's progress with them.

Michael's new room is not a single. So here we are, folks: I'm going home tonight. There were offers for people to stay with me, and for me to sleepover at their homes, but I've got to deal with this at some point. Maybe I'll be able to sit with some of the harder things when I'm by myself, as much as I know it's going to hurt.

Two awesome things that helped today: a friend messaging me to tell me he bought two Superchunk tickets for Michael and me, because he knew we would be going. The other: the 50 I <3 Rock shirts that our friends had made to share with everyone. They also had one I <3 Cathy shirt, which is for Michael.

There's a children's book I like to read for library storytimes that has this line: Love was meant to be passed on.

What I'm aware of every day is how people really do want to share their love. I've been experiencing it every single day.

So we're in a bit of a holding pattern today. Michael's temp is down, his white blood cell count has been going down, and though they are waiting for lab results to see why he got this fever, the only thing stopping Michael from going to Spaulding today was the lack of a bed and/or the time to process him after deeming him safe for transfer.

We must have exhausted Michael yesterday, with all the kisses and thumbs-up and whatnot. He's slept most of the day, though he's been responsive when he's needed to be for the docs and nurses. He did manage to take off his hospital ID bracelet using the hand that has been the weaker of the two. I had skipped out of the room for about 45 minutes today, and when I returned it was resting on the pillow on his lap. He was asleep, but I'm sure he was pretty please with himself. During this time, they must have removed the staples from his head, but I must have been too wrapped up in the bracelet because it was his father who pointed it out. Bad wife.

Goal tomorrow: open bed at Charlestown location, the location the hospital thinks he's well enough for again. Yay. Let's get this thing going. Especially now that I've said goodbye to five of the six amazing nurses who have helped Michael since he arrived here two weeks ago.

Two weeks ago today, May 28th.

For all our friends and family who have warmed the bench I'm currently sitting on, can you believe it's been two weeks?

Love,

Cathy

Update from Cathy: Monday, 5/27

Yesterday a friend who has been by my side since Michael's accident asked if anyone had told Michael what has happened to him. It was the question everyone else seemed to be thinking but didn't want to ask. There were so many days after the accident, pretty much all of them, where that was the last thing I wanted to do; his condition was either too critical, or in a place where I was concerned I might cause him to panic or be afraid.

We have all noticed since his surgery that he spends a lot of time touching and feeling the trach in his throat, the oxygen tube running across his chest, the incision on his head, the plastic bracelet around his right wrist, and the clip taped to a finger on his right hand that monitors his oxygen. It's impossible now to know what he's thinking as he does this. Is he's in pain? Confused? Itchy? Fidgety? I suspected it's all of these things, but also him trying to figure out what has happened. Apparently I wasn't the only one.

Since Michael seems to be transitioning from a very critical and dangerous time to one of healing and recovery, I decided it was probably the right time to tell Michael about his accident. It was awful to think he was conscious and perhaps frightened of the position he found himself in. Not knowing what had been said to him during private times with friends and family, I wanted to make sure I offered him an account, as best as I could understand it, in a manor that was as measured as I could muster and offered him as much comfort and nurturing and caring as I could transmit through my words.

With my friend by my side, I got as close to his face as I could and I told him. He squeezed my hand tightly many times. I was worried he might get upset, but he was steadfast and listened, and I truly feel it came as a comfort to him when I was finished. I told him he was in a safe place now, surrounded by many, many people who care about him and want him to be well.

Today turned out to be a fantastic day. Michael was very alert - the most he's been so far - and tried to engage with all of us, except for one poor nurse he seems to remain stubborn towards (in a way we all find hilarious, nurse included). If all our friends and family were helping me write this they would mention strong thumbs-up signals, lots of head turning as he tried to follow small group conversations, squeezes of agreement for future plans to play music together, and a mini expression of curmudgeonliness for a specific friend who likes to gush more than Michael can bear about how much he loves him. And someone even got a wave out of him.

For me, well, I win again. Not that it's a competition. But I had two fantastic chunks of time with him today where he held my hands, pulled me closer to him, wanted me to kiss him, wanted to kiss my hand, grabbed his ring from around my neck, cupped his hand around my face, snuggled his arm up my sweatshirt sleeve, and acknowledged - by nodding his head in agreement - that I do, in fact, have insanely clammy hands.

And my iPhone now has some sticky residue on the screen that I can't wipe off, probably from Michael picking up my phone off the bed and holding it while I was playing Yo La Tengo for him. (Fainting.)

He's scheduled to go to Spaulding tomorrow to begin rehab. We thought he was heading to the new facility in Boston, but his trach situation might necessitate a facility where they have access to a ventilator, should Michael need it. Best case scenario, it will be a satellite of Spaulding, within walking distance of where we live.

My last night with Michael until he comes back home to me. I'm glad it was one that ended on an upbeat note. Will be looking to attach myself as third wheel, so be in touch. Also, I have a feeling the Whole Food salad bar is my new kitchen.

To my friend who guided me without pushing, I love you so much for that. And thanks for being by my side.

xoxo

Update from Cathy: Saturday, 5/25

Found out today that Michael will most likely go to another room within BIDMC sometime tomorrow until he departs for Spaulding (Boston) Tuesday. It's going to be hard to leave this group doctors, residents, nurses and desk crew. Every single person in the SICU has been amazingly kind. And competent. This morning the doctors and residents reminded me that the next step is so important for him and that, in a way, they wish he was already there to start that good work. I totally get this, but I just want him to be in a comfortable place right now.

Friends and family are currently discussing whether or not we're going to keep meeting in the hallway adjacent to the SICU, which we have completely taken over and are very protective about, and where I'm currently writing this. There are plans in my head to someday raise enough money to rehab the hallway, adding pullout benches, minibars, a cabinet for linens, and a small refrigerator.

I'm preparing myself for this being my last night sleeping in Michael's room. If the combination of private room and understanding nurses presents itself, I might squeeze out two more nights with him, but I can't count on this. As I was driving home for a shower today, I passed by the Wine & Cheese Cask and the urge to stop in for a bottle of wine kicked in. It's a shop I frequent often because of the delicious things contained within, but I also really like saying hello to the people who work there. I realized I had no reason to do this. It's strange to feel like I'm in my neighborhood, but not. My haunts are all around me, but I have no reason to go into them. It's a strange feeling, because the social part of these exchanges is just as important as the products I'm purchasing. Bring home wine and a baguette for what? Who am I going to enjoy them with? Hang out at a favorite cafe when there's so much sadness in my life and Michael can't be with me? What's the point of any of it?

Today Michael reminds me of the rainy day. He's very quiet. He has reached out enough to let me know he knows I'm here. I've been able to get kisses from him two or three times, which doesn't seem like enough after yesterday. But it's clear to me that he's looking more inward today. He spends time feeling around his scar, ear, eyes, and forehead. Hard to say whether it's him trying to cope with any pain he might be feeling, or if he's trying to process what is happening to him. I think it's both. It hurts my heart to watch him go through this. What I wouldn't give to absorb some of it for him.

Will end on what seemed like an uplifting moment this morning: Michael was touching his head in a way that seemed to indicate he was sore. I mentioned to his nurse that he might be looking for some pain relief, and asked him to squeeze my hand if that was the case (he did, twice). As she brought in the medication, she was chatting him up a bit, and also trying to elicit a response from him, so she asked him to stick out his tongue and he did, immediately. At the time it made those of us in the room laugh. Kinda wishing that happened one more time today.

xoxo,

Cathy

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