One Year Out

The thing about anniversaries is that some anniversaries are really good and celebratory and involve cake and stuff and some anniversaries are bad and make your heart hurt and your stomach fall and encourage you to crawl under the covers for the entirety of the day. Yesterday’s anniversary was the latter. It has been one year since Bob suffered a stroke.

A few months ago, Bob was formally released by his neurologist with the instruction to please, don’t come back. I believe the doctor’s parting words to Bob were, “You were very, very lucky.” Out of the host of physicians caring for Bob, his brain specialist was probably my favorite. Also, his work was the most critical of any of the doctors those first few days. Bob’s neurologist was handed the tricky task of finding the right level of intravenous blood thinner to administer. The blood thinner was meant to thin Bob’s blood just enough to ease flow while reducing the risk of additional clots forming but the medication couldn’t thin it too much or Bob risked bleeding in his brain at the site of the four existing clots. I remember talking to the neurologist in the ICU and him admitting that it was all a risk versus reward equation. The risk of a brain bleed with the reward of preventing clots. It was a fine line and there were no guarantees. Can you IMAGINE having that job? Being responsible for making the call in such a dicey situation? I can’t, but am exceedingly grateful for people gifted with that level of confidence.

I think I’ve worked to bury some of the more stressful memories of that first stint in the hospital, like the possibility of permanent brain damage. But, that’s the thing about anniversaries. The forgotten details tend to bubble to the surface.

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For someone who suffered a stroke twelve months ago, Bob’s recovery has been remarkable. So remarkable, in fact, that we’ve mostly moved past the daily impact his illness had on our lives. For the better part of a year, I’ve asked him several times a day, “How are you feeling?” But, I’ve noticed over the past month or so, that I’ve stopped asking. That’s a tidal shift for me – moving from the assumption that Bob is unwell to the assumption that he is well, unless otherwise informed.

The most lasting impact of Bob’s stroke has been his lingering physical exhaustion. It’s closely tied to the level of chaos and stress surrounding him at home. The part of his brain that was injured seems to be the part that deftly handles noise and mayhem, the type three young children tend to create. Weekends can be exhausting for Bob with the general insanity level of our home, leading to the need to rest at regular intervals. Recently, we ate dinner with dear friends and by the time we arrived at their house, Bob had been subjected to a full day of kids and their incessant demands with no respite. He was mentally taxed and retreated to our host’s basement after we arrived to nap for a bit. (Our friends are awesome and totally understanding and probably wished they could nap at random, too.)

However, even the physical exhaustion seems to be improving recently. One year later and Bob seems to be back running at 100 percent. Well, back to Bob’s version of 100 percent anyway.

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I’m not upset or mad that Bob suffered a stroke. It’s just something that happened to us. I started to move forward almost from the moment it occurred. My goal was to make Bob well, to enact improvement and progress. For everything to be better. To SOLVE THIS PROBLEM. I learned a few lessons along the way, too.

The first being that medical science is inexact. Throughout the past twelve months, I have been consistently surprised at the amount of just… guesswork that goes in to treating sick people. Before Bob’s stroke, I just assumed that, when diagnosed with a problem, for the most part, doctors knew pretty much how to treat that problem. Modern medicine isn’t really like that. There’s still a significant amount of surmising, speculating and theorizing. That’s not a bad thing. It was just unexpected to run into so much shoulder shrugging from so many people with so many advanced degrees. I mistakenly thought doctors had all of the answers. I learned this past year that they don’t, no matter how badly you wish they did.

I also learned that nurses are basically unheralded. We saw nurses more than anyone else during Bob’s hospital stays and almost without exception, they were kind and compassionate. They shared advice and reassurances and anecdotes and survival stories and ensured we had a single room and were just generally really amazing. I ran into Bob’s discharge nurse at Target several months later and although she didn’t remember me when I approached her with words of thanks, she still asked if she could give me a big hug and sent her best wishes to Bob.

This past year proved that while almost everyone knows what to do to help in a crisis, almost no one knows exactly what to say in a crisis. They will undoubtedly say the wrong thing a good percentage of the time. It is inevitable and we should probably accept this as a universal truth and cut everyone some slack. It’s hard to find the right words when someone is suffering and sick. Some people will offer standard platitudes of “everything happens for a reason.” Some people prefer denial and will tell you that “he doesn’t even look sick at all!” Some people are uncomfortable with the idea of… finiteness and will change the subject entirely. Some people don’t know what to say so they won’t say anything at all. This is all okay. Really. WITH ONE EXCEPTION. We need to all agree to ban the practice of telling a sick person a story about this other sick person that they know from work or their cousin’s wedding or their mom’s book club that had a stroke too – “JUST LIKE YOU!” – and was incapacitated for life because of it. Tales of death and despair told to someone facing death and despair is never helpful. We need to work together to knock this off.

While I may have been downtempo and reflective during yesterday’s anniversary, I don’t think Bob was. We didn’t talk about it much actually. He spent the day cleaning up flower beds, giving Cub Cadet rides to the kids and practicing marksmanship with Charlie. Maybe that was Bob’s way of commemorating such a transformative day.

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May happens to also be American Stroke Month. HOW CONVENIENT, people who decide these types of things. Also, I kind of feel like it should be called, “American Stroke Prevention Month,” people who name these types of things. American Stroke Month sounds a little too glamorous. Kind of like something you’d like to catch. Anyway, I had no idea what was happening to Bob the evening he suffered a stroke and described his condition to the 911 operator as a “cardiac event,” since I assumed something in his recovery from the cardiac procedure he had had the day before was causing his problems. She knew better from my description of Bob’s symptoms so the EMTs that responded were therefore ready to treat a stroke victim. Remembering the “FAST” acronym is easy and identifying even MILD symptoms early on can make a huge difference in treatment success.

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So, maybe cut this out and paste it to your fridge or something. Do it for Bob and stroke survivors everywhere.

In Times of Need

I loathe asking other people for help. I have this innate fear of inconveniencing them; of having someone go out of their way just for me. I worry that I’m somehow adding to their burden.

I’m not sure where or when this started but I know that in the past I had to get pretty desperate before I asked for assistance from others. If there was an especially sick kid or Bob had a lengthy work trip or I was having another baby, I would make a call. And, then I would only call family who would travel great distances to help out. And, I would feel bad about it. About having others spending their time and money to help us.

It’s like my approach to parenting is some super sad contest where those that need the least amount of assistance, win. Only, the trophy is a stress ulcer.

I can’t tell you the number of times over the past eight years when others have offered a helping hand and I’ve fought every urge in my body screaming, “YES, that would be great!” and instead replied with a, “No, but that’s so kind of you to offer.” See, I don’t want to cause anyone any trouble.

But, the thing is, we would have never been able to emerge from the intensity of the past two months without the graciousness and generosity of others. It took Bob’s stroke, this experience, this absolute crisis, to understand that people naturally want to help. People need to help. People expect to help. LET THEM HELP.

This was one of the long halls between the parking lot and the wing of the hospital where Bob was being treated. I called it my Sally Field hall since I always envisioned her clicking

This was one of the long halls between the parking lot and the wing of the hospital where Bob was being treated. I called it my Sally Field Hallway since as I walked it, I would remember her, in her brown blazer, carrying her smart handbag, clicking her loafers on the tile floor on her way to Julia Roberts’ bedside. Except Bob didn’t die of diabetes or anything at the end of all of this. So that’s good.

In the wee morning hours after Bob’s stroke, when it became apparent that he was going to be hospitalized and that I would want to be bedside, I can remember running through the contact list on my phone trying to figure out who I could call upon to take care of my kids. I stood in the hallway outside of Bob’s room strategizing over who to ask and how to ask and for how long to ask. I knew that first day was so crucial to Bob’s recovery but my parents were a day’s drive away, my stepson and his wife were at a wedding out of town and several of my local friends were on vacation. We had just moved to our (small) neighborhood two months prior and really didn’t know anyone well enough to shove three kids at them with a questionable return time. The outlook was grim.

By mid-morning on Sunday, I had reached the tipping point. I knew I was needed back at the hospital. That I needed to get back. That it had become rather desperate. So, I called the same neighbors who had slept on our sofa the night before and asked if they could watch the kids while I headed back to the hospital. Even with a husband in the intensive care unit, even though they had walked out of my house offering to help in any way they could, I was still nervous to make that call. Still nervous!

“Bring them on down!” they said.

Our neighbors went on to watch our three kids plus their three kids for SEVEN hours that Sunday. They cared for them, fed them, potty’ed them and tried to nap them. Of course they did. Because anyone would. I just simply had to ask.

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I slept in this chair, right by Bob’s side, for eight nights. Our time together (the nights are always the hardest, ask any brand new mother and she will solemnly nod) was made possible, initially by Bob’s sister and sister-in-law who were first on the scene and later by my mother and sister who worked tirelessly caring for our children and our home.

The subsequent weeks were filled with perfect examples of others providing us with the support we needed to get through an extremely difficult time. Our neighbors, our friends and our families stocked our fridge, took care of our kids, cut our lawn, washed our laundry, sent emails, cards and texts, lent a listening ear and showed such compassion and kindness that I am still taken aback reflecting upon it today.

And, throughout Bob’s hospitalization and the weeks following his return home, I got better at both accepting help and asking for the right kind of help. (The answer, by the way, is food. It’s always food. When you have a house full of guests who are there to help, turns out they need to be fed.)

When a neighbor asked to drive Henry to the bus stop every morning to make it easier on my family, I said, “YES, thank you!”

When a friend emailed to say she was close to the  hospital and did I need anything, I said, “YES, can you give me a ride back to my house?”

When another friend offered to watch the kids, I said, “ACTUALLY, can you bring food instead?”

I just kept saying, “YES!” Yes to all of the things because it made everything else easier. And, to the best of my knowledge, no one was put out by their efforts. No one felt burdened. No one felt disgruntled from going out of their way to help someone in need. Everyone was gracious and lovely and pretended not to notice that my eyes were red and puffy.

Bob’s stroke was a giant lesson in humility. Humbling accepting the help offered by others and humbling admitting that I do not reciprocate that help as often as I should. I am determined to change both my attitude and my effort.

So, when something horrible befalls you or your family, please know I stand at the ready, armed with a Compassion Casserole (or seven). Or, if you just need someone to hold the baby while you take a nap, I could do that, too.

When Things Fall Apart

On Saturday, May 17, around 10:15 p.m., Bob walked out of our bedroom, into the living room where I was sitting and tried to explain to me that his arm felt funny. That it wouldn’t work. Only, he couldn’t talk. His mouth was opening and closing but no words were coming out. His right arm was moving in circles but he wasn’t really able to control it. A blood clot, one of six that we later learned were scattered throughout his body, had traveled to the left frontal lobe of his brain and was making it impossible for him to tell me what was wrong. Bob was having a stroke. It was the most terrifying experience of our lives.

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Earlier that day, the kids and I had picked Bob up from an overnight stay in the hospital after a routine (to us) cardiac procedure. A procedure he had successfully recovered from two times prior. We weren’t expecting any complications beyond exhaustion from the lengthy time spent under anesthesia. So, when Bob wandered out later that night and I asked him, without even looking up from my computer, if he was feeling okay, I assumed his delay in responding was due to sluggishness. It took me a minute to register that he wasn’t responding because he couldn’t find the words to answer my question. By the time I was on the phone with 911, he had regained a portion of his speech but it was clear something had gone very, very wrong.

I mostly remember the interminable wait for the ambulance that evening. We live in the country where nighttime is a type of dark that’s difficult to describe. When we lived in the city, there was a constant glow, even at midnight. Out here, a porch light can barely make a dent. I spent ten frantic minutes running back and forth between Bob on the sofa and the open front door, willing the night sky to illuminate with the red flashing lights that meant rescue, to hear the sound of the ambulance churning over the gravel road towards our home. It was so very, very dark.

At some point, it dawned on me that I would want to go with Bob to the hospital. That I would want to be with him. With three young kids and family so far away, we’ve gotten rather adept at dividing and conquering. However, this was different. This was really serious. I had the phone number for neighbors that we had only met two months prior. I called and tearfully explained what was happening and they were at our doorstep in minutes. I cannot overemphasize how reassuring their presence was.

We arrived at the emergency room and after the staff was assured Bob was stable and after I answered a few brief questions, they rushed him off for a CT scan. After a tremendous flurry of activity, I found myself all alone. Just standing there, in ER bay number 9, not sure what to do next, awkwardly holding my purse and a large box containing Bob’s medication. I didn’t dare move. After a few minutes, the doctor walked in, put his hand gently on my arm and motioned to a chair in the corner. He told me it was okay to sit down. I can’t remember another time I have felt so helpless.

I remember needing to do something while I waited. I couldn’t just sit there. I’m a doer and this was a crisis! I needed to fix something! Make it better! But, there wasn’t anything for me to fix or make better so instead, I cleaned out my purse. Right there in the emergency room. While Bob was off being x-rayed. Carefully organizing my wallet. Putting receipts together. Placing pens and pencils in pockets. Wondering why in the world I was doing this, then, but also unable to stop myself.

The next few hours passed in a blur. A teary, exhausted, wondering-about-the-future blur. At one point, there was hope that Bob had suffered from a “mini-stroke,” something that would resolve itself within twenty-four hours. However, when his stroke symptoms returned and he lost grip in his right hand once again, it was obvious his case was more complicated than that. Sometime around 2:00 or 3:00 the morning of May 18, the decision was made to transfer him to the telemetry floor of a nearby hospital. Upon arrival there, the nurses immediately got to work admitting him, a detailed process during which it became apparent that I was mostly in the way, especially in the cramped quarters of a shared hospital room. I also felt pulled to return home since I was cognizant that our neighbor was probably sleeping uncomfortably on our couch and could use some relief.

Since I had arrived with Bob via ambulance, I asked one of the nurses if there was someone at the front desk of the hospital that could call a taxi. She explained the desk wasn’t staffed at that hour but immediately set about to find a cab company to come and retrieve me.

I was in rough shape at this point; exhausted and worried and so upset that I was physically ill. So, when the cab pulled up in front of the hospital, in the pitch black of 4:30 a.m., I remember irrationally thinking to myself, this cab ride is not going to end well. This guy is totally going to murder me. I am alone, in the wee hours of the morning, not a soul to be seen anywhere and I’m climbing in the back of this cab and I’m pretty sure I’ve seen this episode of “Dateline NBC.” I was way too tired to care though. I kept dozing off in between his requests for directions, only to be jolted awake when he came upon deer in the road. I realized, as we drove further and further out into the country towards our house, each curve a little worse than the one before, each turn taking him further and further from the main road, everything around us so, so dark, that this driver must be thinking to himself, this lady is totally going to murder me. I didn’t though. I gave him $60.00 and hoped he could find his way back.

I awoke to a phone call around 7:00 a.m. from a doctor at the hospital. Bob’s stroke was worrisome he explained and the neurologist had ordered Bob to the ICU while they performed additional testing. And, that’s where I found Bob later that morning, when I returned to the hospital after dropping the kids off with neighbors: in the ICU staring down Recovery, Day 1.

Bob spent a total of nine nights in the hospital during that first stay making progress and then not making progress and then just flat out getting worse before he began to slowly get better. He is getting better though. Strokes are unique to each sufferer and we are learning to carefully navigate the somewhat messy minefield Bob’s stroke left behind. It is comforting to know our everyday life won’t always be this challenging and, a little more than two weeks out from the event, I can see improvement.

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We’ve always joked that Bob’s extremely laid-back personality accounted for his three operating speeds: Slow Bob, Medium Bob and Fast Bob. His default setting has always been Slow Bob, a kind of lackadaisical wandering from task to task. At times, like when running late for a doctor’s appointment, he’ll switch to Medium Bob since a moderate sense of urgency exists. Fast Bob only appears when he’s running from a grizzly bear or something. When my sister visited Bob in the hospital, she asked him what speed he was going to be operating at now with this latest health development. He replied, “Stroke Bob.”

I think we’re well on the path to recovery.