A terrible idea

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People have asked about pictures. This is pretty much the only one I have of me, taken by a friend I no longer have. I believe this was early June, so I have gone past this point in the story. You can see my Swedish restraint belt extending to the sides of the bed. The stylish blue fabric tied around me is a gait belt and something I had forgotten about until I uploaded this picture. It was for the nurses and therapists to grab as they transferred me to and from the bed/toilet/wheelchair. I wasn’t walking when this was taken, but once I started to, the therapists could use the gait belt to hold onto me.

Within a day or so of starting to walk, my PT Cheryl had me fitted for an AFO like this one:

noodle-ta01

It fits under the insole of a shoe and helps to keep the ankle from rolling and the toes from curling under. I know now that I had developed something called Foot Drop as a result of the stroke. In Rehab, they made me wear this giant horrible boot thing while I slept “because you don’t want to get Foot Drop.” Too late. I wish they would have just told me that I already had it, that it was pretty much inevitable, so I could have gotten some decent sleep. I’m not sure there was any way it could have been prevented. Now that I have more connections in the Stroke Survivor community, I understand just how common this side effect is. We all have it to some degree. I still have it (will always have it), although I no longer wear the brace. It flares in cold, damp weather and I call it my “old man leg.”

Another accomplishment took place on June 14, 2012. I was taken off of “bladder protocol” after almost two weeks on Urecholine and large amounts of coffee from Allanya. That means I had gone 48 hours without being cathed. Woo hoo! I could now ignore the home catheter kit commercials on CNN, but I tell you, having been a hair’s breadth away from needing them, I will NEVER be able to ignore home catheter kit commercials. I saw that damn bladder scanner occasionally in the hallway parked outside of someone else’s room. It was all I could do not to kick the thing down the hallway.

Meanwhile, Matt was juggling the house (still on the market) and the kids. He was back teaching two evenings a week while a sitter came and dropping the kids with whatever mom would have them during the days, so that he could be with me at the hospital. The therapists had stressed the importance of him being around as much as possible for the last week, so that they could train him to take care of me. Because I needed to be taken care of. Because, despite being walking with a fully functioning bladder, I was still broken. They were starting to list the equipment that would be needed when he brought me home, so that he could get it together. I needed a special chair for the toilet. I needed a bench for the shower. To test our readiness for my upcoming release, we asked Dr. R to let me have a day pass for the Sunday before my release.

And because all of this wasn’t quite enough chaos for us, my husband was also still entertaining my constant requests for a dog. Now that I was fully aware of where Riverside Hospital was located, I was no longer asking Matt to “run across the street” and get me a dog from the shelter. We did spend a lot of time looking at shelter dog profiles online together, trying to decide which one would be the best fit for our family.

Something changed about halfway through Rehab. I can’t remember if I had a dream about my childhood dog Bart and told Matt about it or if we were just talking about our childhood dogs, but I suddenly and desperately wanted a Westie (West Highland White Terrier) like the dog I grew up with. Matt also grew up with terriers, although our first dog together had been our beloved rescue greyhound Gavin. We both became enchanted with the idea of having a terrier again (even though they are brats!) Next thing I know, Matt had contacted a breeder and, lo and behold, she had a new litter, but the puppies were all spoken for. Except one male, for whom she still waiting for a return call after their initial inquiry and deposit. Matt and I decided that if this puppy was available, then we would take him. If not, we would go back to the shelter plan.

I swear on my children that Matt and I told NOBODY about our dog plan, but like a high school hallway, everyone on the ward knew we were talking about a new puppy within a few hours. I blame my constantly open door. Every nurse greeted me with “hear you’re getting a dog.” My OT Jenny all but staged an Intervention where she sat us down and told us in no uncertain terms what a terrible idea getting a dog was.

It was. It really was. It was a terrible idea and terrible timing. Just getting out of the hospital with three small kids and a house on the market, a puppy was the last thing we needed. I had been hearing and heeding medical and professional advice for weeks now, so I took Jenny’s sage advice.

And promptly ignored it. The breeder called a few days later. The puppy was available and would be ready for adoption in late July. That would give me a month at home before we got our new addition. Surely, I’ll be mostly recovered by then? No. I wouldn’t be. Choosing to get that damn puppy was a completely irresponsible decision. And one of the best ones we’ve ever made. It made the Summer of 2012 The Summer We Got Duncan instead of The Summer Mom Was Sick.

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Writing this blog entry is a bit of an experiment in the theraputic powers of blogging. It is a happy entry, probably the happiest of all the entries I’ve written. But here now in 2014, I am seething about something vaguely related to this whole experience and I’m hoping that getting this up and out this morning will put me in a better mood.

June 12th was a Tuesday and was also the day that the staff met to make major decisions. The first thing I was informed of that day was that I had been given a reprieve on two fronts. First, I would be released from my Swedish restraint. Woo hoo! It was fitting that it was Amy, the nurse who found me sprawled on the floor, who unlocked me from my belt.

Second, my release date was being pushed back from the 15th to the 21st thanks to the Social Worker (I want to say her name was Andrea, but since I have featured another Andrea in a negative light, I will leave the social worker nameless). Double woo hoo! That meant I had another week to get myself together before my release. Not that I WANTED to stick around, but this decreased the likelihood of needing to go to a Secondary Facility, provided that my left leg would “turn on.” And then it did.

I will never know if it was just one of those things that happens to brain injury survivors all the time where something literally comes back overnight or if it was the Angel I Never Met looking out for me and my family, but my left leg “turned on” June 12, 2012 after being paralyzed for over a month. It didn’t turn on perfectly. It will never be a perfect leg again, but it began to support my weight. My ankle had a terrible tendency to turn under, so my PT Cheryl had to roll on the stool next to me to make sure I placed it properly with each step. She talked about ordering me an AFO to support my ankle, but I had no idea what that was. I was more interested in something else. “Can I get off the Lovenox now?”

“If you can do three laps of the ward without me next to you on the stool, you can,” she said. So I did.Cheryl walked next to me with a hand on my arm instead and I concentrated with each step. Heel, toe. Head up. Is this what a montage feels like? What song is playing? Hmm, I’ll have to think about that.

I even managed a FB status update via text (locked on all caps as everything I typed would be for several more weeks): LEFT LEG IS ON LIKE DONKEY KONG! That post, of course, prompted numerous comments from those of a different generation wondering what I meant, but as I couldn’t actually log on to FB only send a text message that would post as my status, I didn’t see these questions until several days later. Technology was still not my friend. I couldn’t handle the screens.

My bladder, too, was finally “turning on.” I had to go 48 hours without a catheter to come off of the scanning protocol, but still had one major stumbling block. I couldn’t pee first thing in the morning when my bladder was at its fullest. What the hell is this?

I talked to Dr. R about it in frustration. “That’s always the hardest one to get back,” she said. I can’t remember what her explanation was and knowing it was a common problem didn’t do anything to stop the visions of home catheter kits dancing in my head.

I have note in my journal that my friend Cheryl (not to be confused with my PT Cheryl or my fellow patient Sheryl) came to visit that morning. The journal also says that we were working on my shoulder subluxation in OT with more stretches. It was resolving, albeit slowly. My arm was no longer in immediate danger of falling off. I’m half serious. When I first got to Rehab, the shoulder subluxation was so bad that my left arm was almost out of its socket. I’m in enough online stroke support groups now to know that this is a common problem for stroke victims on the affected side.

My journal says I saw Robyn the Recreational Therapist that day, too. She may have taken me to the garden. She kept a garden on the hospital grounds with raised beds at standing level that the patients tended. She had already had me plant flowers a couple of times, which was no easy feat as I clung to the bed with my good hand and was supposed to be using my left arm and hand for the digging. The soil was soft, but it was still ridiculously hard to coordinate without collapsing. Now that my leg was stronger, this was slightly less terrifying and I was even promoted to spraying down the garden with a hose from a standing position far from the wheelchair that Robyn still had to use to bring me to and from the Rehab ward.

Matt came in that afternoon and Cheryl (the PT) gave him the ok to transfer me from chair to bed and chair to toilet, so when he was with me, we wouldn’t have to buzz the nurse. Ok, let me just put this out there. I am married to very conservative Canadian. He was born and raised in Toronto. He doesn’t use slang. He rarely swears. He doesn’t even use contractions when he speaks. And he sure as hell doesn’t watch his wife pee or do any other bodily functions nor does he allow me to witness his.  During those last two weeks in Rehab, however, he made an exception (and the first couple of weeks home when I still needed an escort to the bathroom). Watching me pee (or try to pee) was part of the deal and he put aside his natural aversion to such things. You’ll all be happy to know that, two years later, we have gone back to bathroom privacy with the exception of the occasional having-the-door-thrown-open-because-we-forgot-to-lock-it by our now 4-year-old.

Wow, big day, June 12th. I’m pretty sure I went to sleep dreaming of montages (and home catheter kits). I had already decided on a song. My mom, on the phone and in her many cards and letters (I couldn’t handle email any more than I could handle Facebook) had taken to calling me her “Warrior Queen,” perhaps remembering that I had once written an undergraduate Honors Thesis on Celtic female warriors and queens. And so, the song choice for my montage seems obvious. It was a song I first heard when I was 8 years old, visiting Disney World on my first alone-trip with my aunt and uncle. I can still remember hearing it on the radio and instantly thinking “this is the BEST song I have EVER heard!” I saw the video sometime later. Now the song is the perfect example of 80s cheese, but it would be my montage song anyway:

Oh, and if you’re wondering, it worked. 90 minutes after starting this entry (thank you, screens, for babysitting my children), I am in a much better mood and able to face the drama of 2014.

Helping hands

Breakfast was always bustling with nurses and techs passing out schedules, meds and menus. By comparison, lunch was rather quiet. We still had to eat in the community Breakfast Room, but the time you ate at depended on your therapy schedule for the day and you generally sat with whoever else happened to be eating at that time. Sometimes, it might be just one or two others, sometimes there were as many as ten of us.

By June 10th, Billie and Lilian were both gone. The mysterious Lily was also gone. We had never gotten our moment to bond, our moment to trade war stories and talk about the challenges of battling brain tumors as young mothers, but it is just as well. That encounter couldn’t possibly have gone as well in reality as I wanted it to anyway. Everyone comes out of a brain injury or stroke with different defecits. Mine were primarily physical. From what I could observe, Lily’s were different. She was far ahead of me in terms of strength and mobility, but she had her own defecits to face. She also had major battles ahead of her. While my tumor was benign, most brain tumors are not. I’m not sure where Lily is today, but I hope she is well.

Doug was a new face on the ward. He’d suffered a motorcycle crash and was recovering from a major head and neck injury. He came to Rehab with a neck brace and a helmet that he had to wear 24 hours a day. And I thought a head full of staples was bad! I’m pretty sure his joy at losing the helmet after a week was probably even greater than mine at getting rid of the staples.

One day during lunch, I was sitting with a fellow patient named Bonnie. Bonnie was a quiet grandmother who had suffered a stroke. Although friendly, she was quiet and anxious most of the time. Her husband joined us for many meals and spoke to Matt often. On this day, neither of our husbands were with us. Bonnie and I were eating and heard Doug complaining at the table next to ours.

Doug was sitting with Sheryl. Sheryl was battling pancreatic cancer in addition to trying to recover from her stroke. She was in Rehab on her “break” between massive radiation/chemo sessions. Watching Doug and Sheryl interact had already become a favorite pasttime of several patients like myself. Doug was a middle-aged white guy with, shall we say, a rather outdated vocabulary.  He appeared unable (perhaps as a result of his ignorance compounded by brain trauma) or unwilling (due to his own prejudice) to call Sheryl anything other than “that negro gal.” As in “where’s that negro gal, I haven’t seen her today?” Sheryl, for her part, was actually fairly tolerant of him, simply correcting him to call her by her name if he said it in her presence.

That day at lunch, Doug was struggling with opening a packet of sugar. Doug happened to have a broken arm in a cast rather than an arm disabled by stroke. “This damn sugar packet!” he cursed. He looked around for a nurse or PSA to help him. Again, at breakfast, you can’t get a moment of peace with all of the nurses around looking for bellies to inject, but lunch is different. There was no one around. No one. By now, I was good enough with the wheelchair that I could have wheeled it over to where Dough sat, but I also only had one good hand and opening a sugar packet is a two-handed job.

Sheryl was sitting across from him. “I’ve only got one good hand, too,” she sympathized. “Here,” she said, “hold it out as far as you can.” Doug extended the sugar packet with his good hand. Sheryl reached across the table with her good hand and they both grabbed the packet. “Careful now,” she instructed, “we don’t need sugar flying everywhere. We’ve got enough challenges as it is.” The packet ripped just enough. Sheryl let go. Everyone laughed and cheered and Doug got sugar for his coffee (if you can call it that, Doug did not have the Allanya connection).

I was actually released before Doug was, although he was only a few days behind me. I’m not sure what happened to him. I know he talked about his girlfriend moving in with him to help him out. I don’t know what happened to Sheryl either. Knowing what little I do about pancreatic cancer, she was facing an uphill battle. I’m not sure she is with us any longer. Wherever, she is, I thank her for giving me this funny anecdote that I will carry with me for the rest of my life.

Secondary Facility

“You know what my usual breakfast is? Coffee and a cigarette,” Lilian told me and Allanya and the rest of the Breakfast Room as she did every morning. This was one of the last times Lilian got to give us her morning speech. She was being released in a couple of days.

She would go to a nursing home for further therapy until arrangements could be made with her family for her long term care. Most elderly stroke victims are no longer able to live on their own, so there is a lot of organizing that had to go on behind the scenes of the Rehab ward as patients approached their release date. The Social Worker for the Rehab floor had her hands full arranging all of this, making sure patients were released to adequate care and that medical insurance and/or Medicare was covering what they were supposed to.

My release date was scheduled for June 15th. We were closing in on June 10th. I was making some progress with my left arm, but I still couldn’t walk (or pee). I was frustrated. My PT, Cheryl, was frustrated, too.  There didn’t seem to be any good reason why my left leg wouldn’t “turn on.” One afternoon, she explained the reality of the situation to Matt and I. “We can’t send you home like this. You have three small children to take care of. And you don’t have any family here to help you, right?”

True enough. At that moment, I’m assuming those three small children were at another mom’s house. Since school ended for my eldest, the moms of our school/parish had started taking the children a couple of mornings a week, so that Matt could come see me and talk to the therapists. Matt had also hired a sitter for the evenings when he taught. He was stretched to the breaking point already.

“So, will they push back my release date?” I asked.

“Possibly, but it depends on your insurance. It may not pay for a longer stay here. We need to seriously consider a secondary facility.”

Secondary Facility? What the hell is that?

“Like a nursing home?” I dared to ask.

“Yes, but not how you’re thinking,” Cheryl said. “There are younger people of there who need more care than they can get at home. We need to make sure you get the care you need.” The bottom dropped out of my stomach. I’m not going home? They’re going to put me in a nursing home?

The pessimistic side of me kicked right in. They should. You’re of no use to anyone like this. They should just put you away and get on with their lives.  I started to cry. “I don’t mean to upset you,” Cheryl said. “I just want you to understand why I’m pushing you so hard and how important it is to get that left leg turned on.” She said it like I controlled it. Like I could just magically make it start working. If only. Is it time for my montage yet?

She left me to talk to Matt. There wasn’t much talking, mainly crying on my part while Matt tried to hold me (which is pretty awkward in a wheelchair). When Matt left later that afternoon, I lay belted in the bed with my dysfunctional bladder, my paralyzed leg, my barely uncurling arm and had a long talk with the Angel I Never Met. A very long talk.

MRI Meltdown

“You know what my usual breakfast is?” asked Lilian. “Coffee and a cigarette.” Yes, Lilian said the same thing to us every morning, but she also had someone new to talk to these days. My friend Allanya started coming in at breakfast to bring me real coffee. It took me a few days to come to terms with the fact that someone would voluntarily leave their house early to come to the hospital at 7:30, particularly Allanya, who I had never been that close to even though we had known each other for several years.

In fact, I had been warned that Allanya was a nefarious character plotting the demise of our mommy group. She was not to be trusted and was, in fact, to be shunned. I am ashamed to say that, for a while, I believed our more gregarious mutual (ex) friend and, while I was never overtly cruel to Allanya, I never went out of my way to include her or to build a friendship with her, either. I apologize for that. Here and now on this public blog, I apologize for getting caught up in Mean Girls politics and not reaching out to her at a time, about a year before all of this happened to me, when she likely could have used a friend. Thankfully, Allanya was a better friend to me during a terrible time in my life than I was to her. She brought me coffee every morning that she could. Real coffee. In a giant disposable cup with a lid. If that (and the Urecholine) couldn’t kick my bladder back into gear, I would have to start taking down the home catheter kit information from CNN.

It didn’t work right away, but after about a week in Rehab, I would have an occasional “success” in the late afternoons or early evenings, as if my bladder would “turn on” suddenly late in the day, but it was unpredictable. Many, many, many other times I would wait and wait and wait and nothing would happen and would end up being scanned and cathed. Occasionally, that meant being cathed by a male nurse, usually Opare (there should be an accent on that “e”, but I can’t figure out how to type it, you pronounce it “Oparay”). Opare was a big guy. I can’t remember if he was Sudanese or Ethiopian, but I remember the first night he was assigned to me they had to come “have a talk” with me and ask if I was comfortable having a male nurse cath me.Whatever. Cath away. My dignity left weeks ago. Anyway, I have a male OB/GYN and have had three babies with any number of male personnel in the room. I had no problem with Opare.

Well, except for that evening when he came in to tell me they were coming to get me for an MRI. Gulp. “Um, ok,” I said. And I was okay. I really was. For about 5 minutes. And then I wasn’t.  Then I was hysterical. Completely. Totally. Hysterical. I went from zero to train wreck in the five minutes he left me alone. He came back to the room and was shocked. He asked what was wrong. I couldn’t even answer. I’m not sure I even knew. I think I finally choked out something along the lines of “what if it came back?” I meant the tumor.

“Wouldn’t you rather know that, then?” Opare asked. No. Not really. I don’t want to know anything anymore.

It didn’t look like I had much choice, so I tried to pull myself together as best I could. Opare left and I called Matt.  He was upset that he couldn’t be there. Then Opare came back with Angela, one of the techs. So young, this one, too. They really have to stop hiring kids straight out of junior high. “I’m sending Angela with you,” Opare said, “I’d come with you myself, but there’s only two of us on the floor tonight.” God bless Opare. He really did not have enough staff on to spare Angela for what could have been a long event. As soon as you leave one ward for another, you are subject to their schedule and can get delayed.

I had learned this the hard way a couple of days previously. Ever since I had come to Rehab, I had felt like I couldn’t see properly. It wasn’t double vision, but things felt “off.” I knew I was WAAAAY overdue for eye exam, but the brain surgery opened up frightening new possibilities for why this was, so they scheduled me an appointment with the neuro-ophthamolagist at the hospital. They sent yet another impossibly young tech with me. This one, Laurabeth, really was impossibly young. We got to talking and she told me she was from a big Catholic family and had a little sister starting second grade in the fall like my eldest was. She pushed my wheelchair across the hospital and then sat with me in the waiting room at the neuro-ophthamology office. We sat. And sat. And sat. I told her she could go back and I would have them buzz her, but then she gestured to my Swedish belt. “I have to unlock you for the exam.” D’Oh. Perhaps the earth could just open up and swallow me now?

Anyway, as this appointment dragged on, I realized I was going to miss the visit I had planned with my realtor-friend Liza (you forgot about that house-on-the-market thing, didn’t you?) and her best friend, another mom from the church/school, Beth Ann. I had to call them and cancel. The appointment took almost 3 hours, mainly of waiting. All of that waiting revealed that there was nothing wrong with my eyes from surgery, but that my prescription was terribly outdated.

Jumping back to Opare and the MRI meltdown, I felt terribly guilty that he was going to send Angela with me after having basically dominated poor Laurabeth only a day or two before, but I also was a complete mess, so I agreed. Angela said she’d be right back to get me. Five minutes passed, then ten. Then someone with a clipboard came in and said “You’re not [enter man’s name here], are you?” I shook my head. He left in a hurry. I heard them in the room next door (my door was wide open). “We’re taking you down for your MRI now.” Wait, what? Two of us? I know there are lots of brain injury people, but two of us at the same time?

Opare reappeared. “The MRI was for the patient next door. They had the room numbers wrong.” You mean I had that whole meltdown for nothing? Yep. Pretty much.

 

Waiting for my montage

“You know what my usual breakfast is?” Lilian asked as she was rolled up to the breakfast table. “Coffee and a cigarette.” Belly shots and meds for everyone.

Looking at the calendar, June 2, 2012 was a Saturday. I don’t have any notes for that day and I may have had one or more of the rotating temporary therapists. I know I had a scheduled release date by the 2nd: June 15th. I had less than two weeks before I would be sent back out into the real world to take care of three small children. It was a Herculean task given where I was on June 2nd. Urecholine was making no difference with my bladder so far and I was still being cathed several times a day. So is learning how to cath yourself part of the Rehab curriculum?

My left hand was showing some limited movement, but my shoulder still was not. When I was lifted to my feet, my left ankle would almost immediately roll and the only way I could “walk” was with the help of two therapists. One, often Germaine, would be next to me, supporting some of my weight and telling me to “look up, look up” as looking at your feet doesn’t work at all. Cheryl would be next to me on a rolling stool, lifting and placing my foot a step at a time. It was slow and tedious. 13 days? I’m supposed to go home in 13 days? I’ll be a cripple and a burden. I need a montage scene. Like now.

When I was 18, I left my hometown of Denver to go to college in Los Angeles with stars in my eyes. I was ready to take on Hollywood and become a major director. I lasted a year as Film Production Major. Turns out I could not talk mise-en-scene and I thought Citizen Kane was just kind of boring. My movie tastes were not highbrow enough for me to a film major, so I switched to Television Production. Then, I got a PhD in Medieval Studies. Go figure.

Where was I? Oh, yes, my lowbrow taste in movies and what that meant in Rehab in 2012. What it meant was that I was sitting in my wheelchair (now padded thanks to my PT Cheryl) waiting for my montage scene. You know, the montage scene in every cheesy movie where the downtrodden hero “slowly” overcomes impossible odds through short vignettes and ends up building something amazing and/or becoming someone amazing over the course of a single song.

Here is a classic example and one of my favorites from Rocky IV. In the cold, unfriendly USSR, Rocky Balboa prepares to face the Soviet boxer Drago to avenge the death of his friend and trainer Apollo Creed.

If only I could get a montage. If only I could go from hunched in my wheelchair to boxing a Russian over the course of a song. Or, if not boxing a Russian, maybe just peeing on my own and walking unassisted.

A note to those of you who have been reading every day: thank you, it means a great deal to me. Here in June 2014, things are starting to get crazy with the end of the school year, kids’ baseball, trips to see family and general “summerness” with young children. My original intent to post an entry every day is not realistic in the face of parenthood and remaining plugged into life as opposed to my laptop, so the entries may start to slow down from every day to a few times per week. If you’d like, you can subscribe by email, so that you will be notified when I post a new entry. I will still be posting them on Twitter (for my whole 10 followers–Twitter is NOT my thing) and Facebook, too.

Out, damned staples! Out I say!

I think I’ve mentioned how insanely early the day started in the Rehab ward and that it was the night nurses and techs who got the patients ready for breakfast before the 7:30am shift change. So, when I heard a cart being wheeled in on the morning of June 1st, I imagined they were coming to scan and drain my bladder. Why would they need to scan it first thing? They know it’s full.

I looked up to see a nurse I didn’t know pushing a small tray on wheels. Not the bladder scanner. “You ready to get those staples out?” she asked. Did anyone else just  hear that choir of angels start singing?

She went straight to work with the medical equivalent of a staple remover and– snap, snap, snap– out they came. She muttered something about a couple of sutures and switched tools to remove those, too. The staples at my belly were slightly more challenging with its softer, saggy, especially after 3 pregnancies and then dramatic rapid weight loss, skin. But even those staples came out only with a mild twinge and I was left looking at the odd collection of metal that had held me together for the last three weeks. Not so tough now, are you staples?

And just like that, I was free. No more Frankenstein Chic. Now I was just bald, stubbly and crippled with a malfunctioning bladder. Things are looking up. I showed off my new staple-free skull at breakfast that morning as they passed around breakfast and belly shots. “You know what my usual breakfast is?” Lilian asked. “Coffee and a cigarette.”

The lack of coffee was becoming an issue on more than one front. I was beginning to get headaches every morning, vaguely in the area of my shunt. It was enough of a concern to Dr. R that she called one of my neurosurgeon’s staff in to check the shunt. They confirmed that it was properly set and when it became clear that the headaches responded to tylenol, they simply added tylenol to my morning pill regimen and contributed the headaches, at least in part, to caffeine withdrawal. That alone dumbfounded me. That a headache would actually recede when I took medicine was almost beyond comprehension. For months and months, I had been self-medicating with so much ibuprofen that it’s a wonder I didn’t send myself into liver failure. Funny thing about ibuprofen, it doesn’t do much for hydrocephalus or brain tumors. This stills blows my mind two years later that, when I have a headache, I can take something and it will actually work.

Matt had another theory he was considering as well. Knowing that we generally split a pot of coffee between us, he wondered if more coffee might be the key to getting my bladder back on track as well. “Would they let you order two coffees?” he asked. I love coffee, but I could barely choke down the cup they gave me much less two, especially in the half hour they gave us for breakfast. “Do you think they would send someone down to Tim Hortons for you?” Doubtful.

The solution presented itself within a day or two. My friend Allanya texted me asking if there was anything she could do for me. Jokingly, I replied something about bringing me coffee, knowing that couldn’t actually happen. Turns out, I had underestimated Allanya. Riverside wasn’t very far from her office, so she agreed that, starting Monday (June 1st was a Friday), she would bring me coffee on her way to work. And she did. For the rest of my stay in Rehab, she brought me coffee on weekdays on her way to work and sat with me at breakfast, joining my little old lady crew. Little did I know what drama that small act of kindness set off behind the scenes among our formerly close group of mutual friends. Unneeded, unnecessary and unwanted drama, but, at that point, at least they kept it from me. She kept her immense displeasure that I  dared to take coffee from Allanya from me, taking it out on our friendship later once I was out of the hospital. How considerate of her.

My new stapleless state earned me a shower with an actual hair (or stubble) wash that afternoon as part of my OT with Jenny. I had been upgraded from the drive thru in the bottomless wheelchair, to an actual shower while sitting on a bench seat. Jenny would direct my actions, instructing me what to wash and what hand to use. I really couldn’t do much with my left at all, although the fingers were beginning to uncurl. “That’s unusual,” Jenny said, “usually the shoulder comes first and the fingers come last.” She wondered if my subluxation had anything to do with it and taped my shoulder after my glorious, wonderful (still razorless, but wonderful anyway) shower.

Later that night as I was parked in front of the mirror to brush my teeth, I think I took my first real look at my scar. It is horseshoe shaped on the top of my skull. You can’t really see it now that my hair has grown back, but it was very prominent then, even without the staples as was the giant lump from the cranial shunt. A few days later, my head was itching badly and after I scratched it, I noticed blood on my fingers. Dr. R checked it out and discovered one suture that had been missed. She removed it. Woo hoo. Funny thing, it’s only as I was mentally composing this entry that I finally put together why I had both staples and sutures. The staples were from the craniotomy. The sutures must have been from when they placed the shunt. And yet another piece falls into place thanks to my self-created blog therapy.